tag:blogger.com,1999:blog-28384987657611677842024-02-19T00:09:25.763-07:00Dave's ActiveMSers BlogAn uncommonly clever, insightful, and funny voice of reason in all this multiple sclerosis silliness from the founder of ActiveMSersDave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.comBlogger105125tag:blogger.com,1999:blog-2838498765761167784.post-33089100485486480382021-02-25T14:00:00.000-07:002021-02-25T14:15:26.529-07:00Depression, Suicide and Multiple Sclerosis<div class="MsoNormal"><span class="Apple-style-span" style="font-family: helvetica; font-size: 16px; line-height: 18px;"><b>The year I was diagnosed with MS was immensely challenging mentally. Everything was a blur and, like many facing an ocean of uncertainty after a scary diagnosis, I struggled to hold it together. Enter Brandon Crotty. More than anyone else, he helped right my mental ship in 2006. But, unknowingly, I couldn't right his. He committed suicide months later at the age of 36. I'd like to discuss depression in MS, and introduce you to one of my closest friends. </b></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: helvetica; font-size: 16px; line-height: 18px;"><br /></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: helvetica; font-size: 16px; line-height: 18px;">5 min. read</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: helvetica; font-size: 16px; line-height: 18px;"><br /></span></div><div class="MsoNormal"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1XDjzAqEJNhEX93ljWs7qBK4j2zFbNl0wwdcL85jS54ImOXWd93cN0V0fVGN_XQ7RaoPHgJjQPJUpIYpfq2zg5ZVtf5YMy0eM7xvBQMzbtRW-xCBGKQBc9qbmBIyV5xSHTlR2d1q04pE3/s2048/G35+043.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1XDjzAqEJNhEX93ljWs7qBK4j2zFbNl0wwdcL85jS54ImOXWd93cN0V0fVGN_XQ7RaoPHgJjQPJUpIYpfq2zg5ZVtf5YMy0eM7xvBQMzbtRW-xCBGKQBc9qbmBIyV5xSHTlR2d1q04pE3/w400-h300/G35+043.jpg" width="400" /></a></div><br /><span class="Apple-style-span" style="font-family: helvetica; font-size: 16px; line-height: 18px;"><br /></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: helvetica; font-size: 16px; line-height: 18px;"><span style="background-color: white; color: #444444; font-size: xx-large;">Depression, Suicide and MS</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: helvetica; font-size: 16px; line-height: 18px;"><br /></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: helvetica; font-size: 16px; line-height: 18px;">Let’s start with some facts on this serious topic. Just having multiple sclerosis increases your risk of suicide, according to one study, a sobering seven fold. Even among those with other neurologic disorders—including ALS, which is often fatal—the risk for MSers is still double. Male, under 30, and recently diagnosed (within five years) amplify your risk. But why?</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: helvetica; font-size: 16px; line-height: 18px;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">Researchers aren’t entirely sure. People with MS are predisposed to get depression and it is a hallmark of MS, as half of us with the disease will struggle with depression at some point during our lives… yet it often goes unreported and untreated. And the consequences of depression can be devastating. <o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="font-family: helvetica;">For more on depression and MS, I urge you to read this <a href="https://www.activemsers.org/post/breaking-down-barriers-depression-and-multiple-sclerosis" target="_blank">excellent breakdown</a> by fellow MSer and psychologist Cathleen Julian on our main website. As you'll read, MS depression is a different animal. But there is sun behind those clouds.</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"></div><div class="MsoNormal"></div><div class="MsoNormal"><span style="font-family: helvetica;"><span face="'Trebuchet MS', sans-serif" style="font-size: 12pt; line-height: 115%;">I desperately needed to find that sun in my early days with this disease. Then months after I received my diagnosis in 2006, I lost one of my closest friends to suicide. Ironically, Brandon was a major lifeline when I was trying to cope with getting diagnosed. He was my therapist. He was my hope. Giving his eulogy was one of the hardest things I'd ever done. I’d like to share what I wrote for his obituary and what I said at his funeral. </span></span></div><div class="MsoNormal"><span style="font-family: helvetica;"><span face="'Trebuchet MS', sans-serif" style="font-size: 12pt; line-height: 115%;"><br /></span></span></div><div class="MsoNormal"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmfMAzTrqjplYaBDoh-E7q1vGWDLVqDkEgeAalLEiwaEL6IIvsfPlylqIiaPFKrNOk2kO1bCb5sqZnakCyuGldD3iuWgQFwRBJifqBKzcZoGjUZOPAYQtS1j5cfNEEURPDeZ1dk7qiK6BM/s2048/Wolf+Creek+026.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmfMAzTrqjplYaBDoh-E7q1vGWDLVqDkEgeAalLEiwaEL6IIvsfPlylqIiaPFKrNOk2kO1bCb5sqZnakCyuGldD3iuWgQFwRBJifqBKzcZoGjUZOPAYQtS1j5cfNEEURPDeZ1dk7qiK6BM/w300-h400/Wolf+Creek+026.jpg" width="300" /></a></div><br /></div><div class="MsoNormal"><span style="background-color: white; color: #444444; font-family: helvetica; font-size: xx-large;">Brandon Lynn Crotty's Obituary</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt;">Brandon Lynn Crotty passed away June 27, 2006. He was 36. Born December 27, 1969 in </span><st1:city style="font-family: helvetica; font-size: 12pt;" w:st="on">Wichita</st1:city><span style="font-family: helvetica; font-size: 12pt;">, </span><st1:state style="font-family: helvetica; font-size: 12pt;" w:st="on">Kansas</st1:state><span style="font-family: helvetica; font-size: 12pt;">, </span><st1:city style="font-family: helvetica; font-size: 12pt;" w:st="on">Brandon</st1:city><span style="font-family: helvetica; font-size: 12pt;"> grew up there and graduated from </span><st1:place style="font-family: helvetica; font-size: 12pt;" w:st="on"><st1:placename w:st="on">Wichita</st1:placename> <st1:placetype w:st="on">State</st1:placetype> <st1:placetype w:st="on">University</st1:placetype></st1:place><span style="font-family: helvetica; font-size: 12pt;"> before starting his career in pharmaceuticals sales. He moved to </span><st1:city style="font-family: helvetica; font-size: 12pt;" w:st="on"><st1:place w:st="on">Albuquerque</st1:place></st1:city><span style="font-family: helvetica; font-size: 12pt;"> in 2000, most recently becoming one of his company’s top sales representatives worldwide. An aficionado of classical music and jazz, </span><st1:city style="font-family: helvetica; font-size: 12pt;" w:st="on"><st1:place w:st="on">Brandon</st1:place></st1:city><span style="font-family: helvetica; font-size: 12pt;"> was equally as fond of a good, bump-drafting NASCAR race. An avid cyclist, skier, and artist, he was most at peace in his studio, paintbrush in hand, the symphonies of Mahler softly echoing off the walls. His uniquely sharp wit, intelligent repartee, and unabashed enthusiasm for living life to its fullest will be forever missed. Brandon is survived by his parents Ronald and Carlyne Crotty of Placitas, NM; grandmother Leona Crotty of Garden City, KS; and wife Amy of Albuquerque.</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica; margin-left: 1em; margin-right: 1em;"><img border="0" height="394" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-dDaJoXBTdvt_xpjGfPZWLDor7oMaU1NsQySy8C9Q2ytAo4VIdvhwqHWchXxm0gRKpAIzx7_JhDvDuZ1PrjYZv_X9O-f-VrJfxpKCGkHnbmQd4ZL6GTtNRHpZchXb6vIsALK2n2crcXKL/w400-h394/G35+044.jpg" width="400" /></span></div><div class="MsoNormal"><br /></div><div class="MsoNormal"><span style="background-color: white; color: #444444; font-family: helvetica; font-size: xx-large;">Eulogizing a Dear Friend</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">Before I begin my personal remarks, I have a request of all of you. Whenever you think about Brandon Crotty, please avoid two words. “What if.”<o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I will say with absolute conviction that Brandon’s passing was not written in his life’s script. His demons, on that particular night at that particular time, were too strong, too overwhelming. I personally believe that no amount of what ifs would have stopped those demons. And now, no amount of what ifs will bring <st1:city w:st="on"><st1:place w:st="on">Brandon</st1:place></st1:city> back. No amount of what ifs will lessen the pain. So I implore all of you to purge those thoughts. Replace every “what if” with an “I remember”. <o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I remember when I first met Brandon. He really didn’t pay much attention to me at first. He gravitated, instead, to my stereo speakers. He was an audiophile, after all. But by the end of the night, I knew, I just knew, that we were going to be the closest of friends.<o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I remember how he introduced me to jazz. Like he has done with many a friend before me, he gave me a CD—<i>Kind of Blue</i> by Miles Davis. He told me how excited he was for me. How he wished he could once again experience the simple joy of discovering the magic of John Coltrane, Sarah Vaughan, and Thelonious Monk for the first time. Later, he went through his entire jazz collection and wrote down a list of his favorite albums. Albums that he thought should be the anchor of my collection. That handwritten list, safely folded in my wallet, goes with me everywhere. And it always will.<o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I remember how he introduced me to some of the other finer things in life. NASCAR … The Sopranos … obnoxiously loud ski outfits.<o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I remember when I went down my first double black diamond ski run at Wolf Creek. <st1:city w:st="on"><st1:place w:st="on">Brandon</st1:place></st1:city> was right next to me. For better or for worse, we were going down together. <o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I remember how we talked about his art. How determined he was that his next career would be that of a painter.<o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I remember when he told me, excitedly, that his parents were moving to town. How great it was to have his mom and dad so close by.<o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">And I remember how it was Brandon who reached out and helped me when I was recently diagnosed with multiple sclerosis. He was the first friend to pull me out of the house for something other than a doctor’s appointment. He listened. He cared. And he told me everything was going to be okay. <o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I remember it all. And I’ll never forget.<o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">When we spoke last—a week ago today—I thanked Brandon for his help with my MS and let him know just how much that meant to me. He proudly told me he would ride his bicycle with my name on his jersey for an MS fundraiser this August. He was excited about his latest works of art, all in various stages of progress, impatiently drying. He was eager, genuinely eager, to tackle new challenges and continue living life to its fullest. <o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">No, this final chapter was not supposed to be your destiny, Brandon. <br />
<br />
You’ve changed my life … you’ve made me a better man. And in your own way, you’ve changed the lives of everyone you’ve crossed paths with. We all thank you, Brandon. You’ll be missed by your family, your friends, and your colleagues more than even your brilliant mind would ever be able to comprehend.<o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br />
</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">Today we say so long, Brandon. But we'll always remember.</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><o:p><br />
</o:p></span></div><div class="MsoNormal"><span style="background-color: white; color: #444444; font-family: helvetica; font-size: xx-large;">Suicide Prevention</span></div><div class="MsoNormal"><span style="font-family: helvetica;"><br />
</span></div><div class="MsoNormal"><span face="'Trebuchet MS', sans-serif" style="font-size: 12pt; line-height: 115%;"><span style="font-family: helvetica;">Those thoughts of ending your own life can unpredictably invade your brain on even your best days—it happens to many of us with this disease. But if those thoughts are not fleeting, I ask that you please, please get help. Call your local suicide prevention hotline. In the US, call the National Suicide Prevention Lifeline: 1-800-273-8255.</span><o:p></o:p></span></div>Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com20tag:blogger.com,1999:blog-2838498765761167784.post-42264501601109115362021-02-17T13:30:00.000-07:002021-02-17T13:39:28.646-07:00The Monster Wave of Getting Diagnosed with MS<div class="MsoNormal"><span style="font-family: arial;"><b>Hearing the words "you have multiple sclerosis" for the first time can be scary. And by scary, I mean FREAK-OUT-INDUCING. Getting diagnosed with MS—when you were expecting your doc to say "it's just a pinched nerve"—can utterly flatten you, throwing you into a terrifying tailspin. </b></span><b style="font-family: arial;">That monster wave of discovering you have an incurable disease suddenly makes you question everything about your future. </b><b style="font-family: arial;">But guess what? You are hardly alone. And you can get through this. Even if you get hit with a literal monster wave....</b></div><div class="MsoNormal"><span style="font-family: arial;"><br /></span></div><div class="MsoNormal"><span style="font-family: arial;">6 min read</span></div><div class="MsoNormal"><span style="font-family: arial;"><br /></span></div><div class="MsoNormal"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_ca63OcppRuboCZhWHdbskrnb1f2-wLOcL4C0M7Fy54TD7QyQKL3uCkEo5N5HuDXgLx4-G4xpJBkz5ofsvyqaPQ1K88EtEj7p3jx9UUeu5NCSnTSz8UhBectQty3WPgIbKCrQfGaQaviZ/s875/127002130_2093290084141401_2865928708023774432_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="493" data-original-width="875" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_ca63OcppRuboCZhWHdbskrnb1f2-wLOcL4C0M7Fy54TD7QyQKL3uCkEo5N5HuDXgLx4-G4xpJBkz5ofsvyqaPQ1K88EtEj7p3jx9UUeu5NCSnTSz8UhBectQty3WPgIbKCrQfGaQaviZ/w400-h225/127002130_2093290084141401_2865928708023774432_n.jpg" width="400" /></a></div><br /></div><div class="MsoNormal"><span style="background-color: white; color: #444444; font-family: helvetica; font-size: xx-large;">When Life is Turned Upside Down</span></div><div class="MsoNormal"><span style="font-family: arial;"><br /></span></div><div class="MsoNormal"><span style="font-family: arial;">After your MS diagnosis, inevitably you are going to hear from well-meaning friends and family about how "it could be worse." As if that is going to make you feel better, sorta like the kind of comforting reassurance you might get after your parachute fails to open after skydiving from 10,000 feet instead from 15,000. And you land in a field of grass instead of a Kohl's parking lot. Your degree of pancakedness is less! Hoorah?</span></div><div class="MsoNormal"><br /></div><div class="MsoNormal"><span style="font-family: arial;">The story I'm about to share with you isn't that. It isn't even about MS. Oh, it's still majorly icky, sure. I mean, it goes from bad, to worse, to "you've got to be kidding me." But read to the end, and there are lessons about resilience that you can forever keep in your back pocket for motivation. This is a tale of a friend who got hit, literally, by a monster wave. And, after a hard road (ahem, a really, really hard road) got back up....</span></div><div class="MsoNormal"><span style="font-family: arial;"><br /></span></div><div class="MsoNormal"><span style="font-family: arial;">I met Jeff, then a high school teacher, years ago when I was the editor (and eventual co-owner) of a car magazine. His passion for sports cars and knowledge of how to boost them for maximum performance led him to ultimately write for our publication. Our paths passed frequently at car shows and he became a reliable contributor—and a friend. But while driving fast was a fun hobby for him, nothing compared to his true love: surfing.</span></div><div class="MsoNormal"><br /></div><div class="MsoNormal">
<span face=""trebuchet ms" , "sans-serif"" style="font-family: arial; line-height: 115%;">Jeff was an expert surfer and regularly traveled the world to find monster waves. Hawaii, Indonesia, South Africa, California, French Polynesia. The bigger the better. </span><span style="font-family: arial;">In 2010 he was on a remote island in Indonesia catching cherry waves while I was moping about my feisty multiple sclerosis back in the States. I so wanted to switch places. And then.</span></div><div class="MsoNormal"><span style="font-family: arial;"><br /></span></div><div class="MsoNormal"><span style="font-family: arial;">Waves can be unpredictable. And unforgiving. When Jeff was riding in the swell of 14-footers, nothing too crazy, he got too low in the barrel of one. The punishment was immediate amid the furious churning froth of the ocean—his hip had been snapped in two. </span><span style="font-family: arial;">Fortunately there was a support boat that raced to his aid. Fellow surfers dragged him aboard and sped to shore, each jarring wave amplifying the blinding pain. </span><span style="font-family: arial;">But that was just the beginning. </span></div><div class="MsoNormal"><span style="font-family: arial;"><br /></span></div><div class="MsoNormal"><span style="font-family: arial;">Once ashore, Jeff was hurriedly lifted into a modified 4x4, necessary to navigate the deeply rutted roads to camp just a mile away. It felt like a thousand. Every pothole and bump was a hot poker of stabbing agony. But then, disaster: the rescue truck got mired in thigh-deep mud of the humid Indonesian jungle. The men jumped out to push, but as the wheels spun, the truck sunk deeper. It wasn't going to budge without help. After an agonizing wait, another truck arrived with a tow rope. It snapped. Out of options, the team was forced to carry Jeff in a makeshift gurney, trudging through the inhospitable terrain as quickly as possible. When they arrived at camp,</span><span style="font-family: arial;"> he was set down on the facility’s lone solid surface: the dinner table. </span></div><div class="MsoNormal"><span style="font-family: arial;"><br /></span></div>
<div class="MsoNormal">
<span face=""trebuchet ms" , "sans-serif"" style="font-family: arial; line-height: 115%;">He lay there, trying desperately to ignore the pain, for 15 hours. Finally, medical aid was at hand and he was airlifted to a hospital on a nearby island. He could not have known his nightmare was only beginning. During the emergency 5-hour surgery he awoke to sounds of drilling as doctors were trying to insert multiple pins to stabilize his damaged hip, which surgeons discovered was dangerously close to severing a major artery—meaning certain death—if he moved just the wrong way. </span></div><div class="MsoNormal"><span face=""trebuchet ms" , "sans-serif"" style="font-family: arial; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span face=""trebuchet ms" , "sans-serif"" style="font-family: arial; line-height: 115%;">Inconceivably, it wasn't over. His life had been saved, but the pain was unrelenting. Five days later, doctors at the rural hospital made a horrifying discovery: the epidural had been inserted incorrectly. Finally corrected, only then could Jeff see through his tears.</span></div><div class="MsoNormal"><span face=""trebuchet ms" , "sans-serif"" style="font-family: arial; line-height: 115%;"><br /></span></div><div class="MsoNormal"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbhBCqC8AF5NEWarVE-mn_cEvY5u4grjDilS2Wixdgow5B-DZWdhYp_w9RIMzCJdC7NK7fpCTZN45du8yCPNxVFnTKo4RC8U6juSBdgHaumzRUKk7mMIp7tJnSTjPkCGSxCASi4YO22EXF/s434/127266325_1044795172648570_3322029783910438328_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="434" data-original-width="434" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbhBCqC8AF5NEWarVE-mn_cEvY5u4grjDilS2Wixdgow5B-DZWdhYp_w9RIMzCJdC7NK7fpCTZN45du8yCPNxVFnTKo4RC8U6juSBdgHaumzRUKk7mMIp7tJnSTjPkCGSxCASi4YO22EXF/s320/127266325_1044795172648570_3322029783910438328_n.jpg" /></a></div><span face=""trebuchet ms" , "sans-serif"" style="font-family: arial; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span face=""trebuchet ms" , "sans-serif"" style="font-family: arial; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span face=""trebuchet ms" , "sans-serif"" style="font-family: arial; line-height: 115%;"><span style="background-color: white; color: #444444; font-family: helvetica; font-size: xx-large;">Rising from the Ashes</span> </span></div><div class="MsoNormal"><span face=""trebuchet ms" , "sans-serif"" style="font-family: arial; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span face=""trebuchet ms" , "sans-serif"" style="font-family: arial; line-height: 115%;">Stable, he was flown home to the US. </span><span style="font-family: arial;">After Jeff’s third operation, doctors finally concluded his femoral neck bone could not be saved. Eight more months were spent without a hip, requiring complete immobilization and an IV drip 24 hours a day. Two more operations followed including a full hip replacement. After being bedridden for a year, Jeff was demoralized, but he was not going to give up. His muscles totally atrophied, he spent the next year walking in chest-high water to build up enough strength to walk with a cane. But the waves called. Could he surf again? </span></div><div class="MsoNormal"><span style="font-family: arial;"><br /></span></div><div class="MsoNormal"><span style="font-family: arial;">Day after day the former expert surfer watched beginners stand up on their first try—it took him four struggling months to accomplish the feat. He was not going to quit. In 2014, Jeff retired from teaching, moved to Bali, and started surfing every day. There were many times he could not get to his feet, but eventually he was catching waves on a long board. Then a short board. Life has changed, but life goes on. “I still limp, I can't run, and I am in pain all the time, day and night,” Jeff says. “But I can surf, I can walk, and I am thankful for every wave… every step.”</span><span style="font-family: arial;"> What does this tale have to do with MS? Well, on the surface, nothing—it’s just a hella-crazy story. But duck under the waves and you’ll see how this parallels those first days of getting diagnosed with multiple sclerosis. </span></div><div class="MsoNormal"><span face=""trebuchet ms" , "sans-serif"" style="font-family: arial; line-height: 115%;"><br /></span></div><div class="MsoNormal"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS29vi5AW2Y9lZl3Nr7rKLluapP7nCt0YVI6Nb6qiFgWJCcjR1gPOkGO7djZz_VXSnM4yvLRBgewGasMrjug6ASRASHuiWm4NiEteF52K403ZABBSHRvNUPyi6MVpOy_7MAGdsxynk2bOv/s943/126899275_407761423691847_9011022105450727156_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="597" data-original-width="943" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS29vi5AW2Y9lZl3Nr7rKLluapP7nCt0YVI6Nb6qiFgWJCcjR1gPOkGO7djZz_VXSnM4yvLRBgewGasMrjug6ASRASHuiWm4NiEteF52K403ZABBSHRvNUPyi6MVpOy_7MAGdsxynk2bOv/s320/126899275_407761423691847_9011022105450727156_n.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><span style="background-color: white; color: #444444; font-family: helvetica; font-size: xx-large;">Why Me?</span></div>
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<span style="font-family: arial;"><span face=""trebuchet ms" , "sans-serif"" style="line-height: 115%;">This wasn’t supposed to happen, I know. You weren’t prepared for that monster wave. Yeah, I’ve been there. Many of us have been there. You feel like you are drowning in an ocean of uncertainty—what does your future hold? Will you still be able to do the things you love? Will you end up in a wheelchair? Dunno, dunno, dunno. I can, though, say from experience that it’s not worth obsessing over (certainly, for gosh sakes, not when you are in bed trying to fall asleep). </span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span face=""trebuchet ms" , "sans-serif"" style="line-height: 115%;"><br /></span></span></div><div class="MsoNormal"><span style="font-family: arial;">I have an MS friend in Australia, Col, who breathes surfing. It's his elixir, his escape from our shared disease, even when he is not in the ocean. He knows intimately the power of Mother Nature's energy passing through water. </span><span style="font-family: arial;"><i>“Waves are the heartbeat of the planet. The ballet of the sea, and the symphony of life. They heal, they calm, they exhilarate and they destroy, but always with immense beauty.”</i> </span></div><div class="MsoNormal"><span style="font-family: arial;"><br /></span></div><div class="MsoNormal"><span style="font-family: arial;">Like Jeff and Col, y</span><span style="font-family: arial;">ou’ve been hit by that wave and nothing—nothing—is going to change that. Now dry off. You’ve got one hell of a life to live. As someone newly diagnosed with multiple sclerosis, right now you likely are going through what is one of the hardest stretches of living with this disease. Emotions are fragile. Waterworks are normal. Uncertainty reigns. It might take months, maybe longer, b</span><span style="font-family: arial;">ut you'll emerge from that just-diagnosed pipeline stronger than you ever thought possible, trust me. </span></div>Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com6tag:blogger.com,1999:blog-2838498765761167784.post-62184976982059111552021-01-14T13:32:00.000-07:002021-01-14T14:52:01.681-07:00Keeping Your Resolutions<p style="background-color: white;"><span style="background-color: transparent;"><span style="font-family: helvetica;"><b>For most people, New Year’s resolutions go the way of the fleeting fame of one-hit wonders, like Mambo No. 5 and that breakup song from Gotye with that <a href="https://www.youtube.com/watch?v=8UVNT4wvIGY" target="_blank">cool video</a>. Resolutions start out with the best of intentions and then after a few weeks they crumble into fine dust and skitter away in chilly late January winds. There has to be a better way. For people with multiple sclerosis, there is.... </b></span></span><b style="font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 12pt;"><span style="font-family: helvetica;"> </span></b></p><span style="background-color: white; font-family: helvetica; font-size: small;">3 min read</span><div><span style="font-family: helvetica;"><span face=""trebuchet ms" , "sans-serif"" style="font-size: 12pt; line-height: 115%;"><br /></span></span></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6m72hOKKp_7vhYqW6tbCp_4LvUr2MpV1lMAXoFbLVs_gYoFiUTo00bJW6GqfJqS-Qkau1Mj2lCOKNpgSOH2js_l0R0MyjDbikVmheCBc-LFlgbBlswz8CbNpCq_H6jCGdwHSpeTjvZDV_/" style="margin-left: 1em; margin-right: 1em;"><img data-original-height="2044" data-original-width="2048" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6m72hOKKp_7vhYqW6tbCp_4LvUr2MpV1lMAXoFbLVs_gYoFiUTo00bJW6GqfJqS-Qkau1Mj2lCOKNpgSOH2js_l0R0MyjDbikVmheCBc-LFlgbBlswz8CbNpCq_H6jCGdwHSpeTjvZDV_/w400-h400/Dave+Bexfield+exercising.jpg" width="400" /></a></div><span style="font-family: helvetica;"><br /></span><div class="separator" style="clear: both; text-align: center;"><br /></div>
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<span style="background-color: white; color: #444444; font-family: helvetica; font-size: x-large;">Bold resolutions and Cheetos</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: helvetica;"><span face=""trebuchet ms" , "sans-serif"" style="line-height: 115%;"><span style="font-size: 12pt;">Kicking off a new year goes hand-in-hand with resolutions, bold resolutions, and resolutions so bold they make Kennedy's moonshot </span>proclamation<span style="font-size: 12pt;"> sound downright quaint. And therein lies the problem, especially if you have a chronic disease that requires more attention. Saying you are going to lose 10 lbs a month, quit smoking, go vegan, exercise two hours a day, </span><i style="font-size: 12pt;">and </i><span style="font-size: 12pt;">give up Cheetos of all kinds (</span></span>Crunchy, Puffs, Flamin' Hot Crunchy, Flamin' Hot Puffs, Flamin' Hot Limon Crunchy, XXTRA Flamin' Hot Crunchy, Reduced Fat Flamin' Hot Puffs, Reduced Fat Puffs, and Cheddar Jalapeño Crunchy) </span><span face=""trebuchet ms" , "sans-serif"" style="line-height: 115%;"><span style="font-family: helvetica; font-size: 12pt;">is a recipe for disaster, and not just because you have an unopened bag of Cheddar J</span><span style="font-family: helvetica;">alapeño<span style="font-size: 12pt;"> Crunchy in the pantry that is only </span>guaranteed<span style="font-size: 12pt;"> fresh until January 27th and you are not one to waste food because there are lots of people starving around the world and you have a duty not to let such food go to waste. Someone has to be the hero, you reason. </span></span></span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span face=""trebuchet ms" , "sans-serif"" style="line-height: 115%;"><span style="font-family: helvetica;"><span style="font-size: 12pt;">I applaud the boldness, however misguided, to live waaay healthier with your multiple sclerosis. </span>Obviously<span style="font-size: 12pt;"> that's critically important. But it doesn't need to be defined by resolutions, and it certainly doesn't need to be set at such a high bar. Well, unless your name is Mondo Duplantis from Sweden, who recently set the world record in pole vaulting </span><a href="https://youtu.be/8Q7R6Kqn5gw" style="font-size: 12pt;" target="_blank">clearing 20 feet 2 inches</a><span style="font-size: 12pt;">. But I'm guessing your name is not Mondo, because according to one baby name website, a total of 8 people have been given that name since 1880. And for the record, the number of people throughout history named Mondo No. 5? Zero.</span></span></span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span face=""trebuchet ms" , "sans-serif"" style="line-height: 115%;"><span style="background-color: white; color: #444444; font-family: helvetica; font-size: x-large;">Announce your intentions</span></span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span face=""trebuchet ms" , "sans-serif"" style="line-height: 115%;"><span style="font-family: helvetica;"><span style="font-size: 12pt;">What to do? Announce your intentions, say researchers. Studies have found that the more folks who know about your resolutions,
the more folks you’ll have in your corner to root you on to accomplish your
goals… and the more pressure you’ll put on yourself to make good on your
commitments. And why strangers? Unlike </span>judgmental<span style="font-size: 12pt;"> family members (you know who I'm talking about) and friends who'll give you a pass if you slide ("What's the harm of a single Cheeto, Dave?"), compatriots like—oh, I dunno—those on the fo</span></span></span><span face=""trebuchet ms" , "sans-serif"" style="font-family: helvetica; font-size: 12pt; line-height: 115%;">rums</span><span face=""trebuchet ms" , "sans-serif"" style="font-family: helvetica; font-size: 12pt; line-height: 115%;"> of
ActiveMSers (<a href="https://forums.activemsers.org/">https://forums.activemsers.org/</a>) don’t have hidden
agendas. Better yet, you share that common bond of having multiple sclerosis
and understanding the daily challenges involved in that delicate dance of best managing a chronic disease.</span></div>
<span style="font-family: helvetica;"><span face=""trebuchet ms" , "sans-serif"" style="line-height: 115%;"><span style="font-size: 12pt;">So you might
not know me personally, and your resolutions might have already packed up and </span>hitchhiked<span style="font-size: 12pt;"> to Boise by the time you read this, but know this: I believe in you. After all,
you found your way here, right? CLEARLY IT'S A SIGN. (Or you accidentally clicked some link and inadvertently got sucked into reading this enlightening prose.) Sometimes that first step in turning over a new leaf is more of
a shove from behind. So get your a$$ in gear! You can do this. Absolutely you
can. Just let me and your virtual friends help you out. If you got to the <a href="https://forums.activemsers.org/forum/activemsers-org-forums/ms-fitness" target="_blank">Fitness area of the forum</a>, the top thread is about training accomplishments. Chime in! Your participation will help motivate others and it could snowball into a raging party of fit misfits with a chronic disease.</span></span><br />
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<span face=""trebuchet ms" , "sans-serif"" style="font-family: helvetica; font-size: 12pt; line-height: 115%;">Oh, and how
do I guarantee my resolutions stay intact every year? Easy. I always make a
resolution not to make any more resolutions other than the one resolution not
to make any more resolutions. Works like a charm every January 1st. And I still get to eat my Cheetos. In moderation, of course!</span></div></div>Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com0tag:blogger.com,1999:blog-2838498765761167784.post-82109566225822961782020-11-18T11:00:00.011-07:002020-11-24T14:21:33.484-07:00Going MS drug free: the flawed arguments<div class="MsoNormal"><p style="clear: both; text-align: left;"><span style="font-family: helvetica;"><b>There are a number of reasons not to take disease modifying therapies for your multiple sclerosis. And by many, I mean three. And one relates to a kitchen sink (with garbage disposal, not shown). Before you make the decision to go drug free, please read this. Please. </b></span></p></div><p style="text-align: left;"><span style="font-size: x-small;"><span class="Apple-style-span" style="font-family: helvetica; line-height: 18px;">[9 min read]</span><br /></span></p><div class="MsoNormal"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5ov1V617juUgBXQY1aOkujKwub_mUKTExUMu2OHfqKmkObvTo0GZOA_Yb-BOdZviJN-ksElH_GEntuJpmsYyO4Kf_Rxe9skKkHahjcRbi1z6uGxdA9Sn_gvv6HG_5JHAjxn55yKV-izk0/s2048/IMG_20200423_101835.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1152" data-original-width="2048" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5ov1V617juUgBXQY1aOkujKwub_mUKTExUMu2OHfqKmkObvTo0GZOA_Yb-BOdZviJN-ksElH_GEntuJpmsYyO4Kf_Rxe9skKkHahjcRbi1z6uGxdA9Sn_gvv6HG_5JHAjxn55yKV-izk0/w640-h360/IMG_20200423_101835.jpg" width="640" /></a></div><br /><span class="Apple-style-span" style="font-family: helvetica; font-size: 16px; line-height: 18px;"><br /></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: helvetica; font-size: 16px; line-height: 18px;">If you have relapsing multiple sclerosis and are under the age of 50, there are many legitimate reasons not to take disease modifying therapies (DMTs) for your MS. 1) You are allergic and/or your body cannot physically tolerate any of the available medications. 2) You cannot afford DMTs because you have no health insurance—or your insurer denied access to MS medication and the appeals failed—and you are ineligible for any of the multitude of patient assistance programs. 3) You’ve tried virtually every drug available to you and participated in clinical trials and still, despite throwing even the kitchen sink complete with garbage disposal at this disease, your neurologist feels that the drugs are having no effect … and a second opinion supports your neuro. And, hmm. Oh, by many reasons, I meant only three. And they aren’t terribly common.</span></div>
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<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">Which makes me scratch my head as to why a sizeable percentage of MSers are not on any form of DMT. Even those with progressive forms of the disease are being helped with the newest therapies, a long-overdue and desperately needed advance. While these drugs aren't as effective as we'd like them to be for people with more advanced MS, slowing disability by any degree is still a big, big deal.</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">For decades, neurologists and those afflicted with MS had been pleading, begging, for any sort of treatment. <i>Anything</i>. Finally, in 1993, DMTs arrived and have effectively changed the direness of a diagnosis of multiple sclerosis. By how much, you ask?</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">Ask your neurologist if he or she has seen a difference in the level of disability of their patients before and after DMTs became available, and the answer universally will be <i>without question</i>. And they’ll say that that difference has been dramatic. Which is why neurologists—each of whom has dedicated themselves to a professional career to become a specialist to help you—understandably are frustrated when their patients say no thanks to treatments. At least a decade of schooling, internships and residencies, often combined with years and years of hands-on experience, all summarily dismissed because of "I saw this alternative MS treatment on the internet." </span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">Can you blame neurologists for turning Smurf blue in the face trying to talk sense into their patients? (<a href="https://multiple-sclerosis-research.org/2020/09/profg-has-turned-into-a-smurf-dear-neuro-stop-him-turning-into-papa/" target="_blank">One even wrote a whole blog post bemoaning that.</a>) They are human. They lose sleep worrying about their patients. They cry when the people they care for suffer devastating setbacks. Some have even gone so far as to fire patients for eschewing helpful medication. Craziness, right?? But put yourself in their shoes. If you are not going to help yourself and use their expertise, you are taking away a valuable slot from another patient who will.</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">After reading this post, maybe you'll better understand why they have so much urgency.<o:p></o:p></span></div>
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<span style="color: #444444; font-family: helvetica; line-height: 115%;"><span style="font-size: x-large;">If neuros can’t convince you, how can I convince you?</span><o:p style="font-size: 12pt;"></o:p></span></div>
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<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I could tell you that damage is being done while you are reading this sentence. That your brain is shrinking. That axonal loss is happening. And that these problems are irreversible and research has shown that this insidious burn is happening at the very earliest stages of the disease, even while your symptoms are nonexistent. But I won’t.<o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I could inform you that delaying treatment, even by just a couple years (to see what happens?), has lifelong consequences. That the treatment-free you, studies have found, will <i>never, ever</i> be able to catch up to the less-disabled you had you started treatment earlier. But I won't.</span></div>
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<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I could remind you that while MS treatments have side effects, most are easily manageable. That the devastating side effects this disease effortlessly can deliver are infinitely worse. But I won’t.<o:p></o:p></span></div>
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<div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I could invite you to tell the individuals and families devastated by diseases with zero effective treatments—like Alzheimer's or ALS or Huntington's or countless others—that while you have a cornucopia of new and effective treatment options to treat your MS, you're gonna take a pass. But I won't.</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal">
<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I could urge you to spend an afternoon volunteering at your local nursing home to help care for someone with MS. To bathe them, dress them, feed them, change their catheter, wipe their bottom, and then start all over again. But I won’t.<o:p></o:p></span></div>
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<span face=""trebuchet ms" , sans-serif"><span style="font-size: 12pt;"><span style="font-family: helvetica; line-height: 115%;">I could educate you about the countless studies, endless research, and copious analysis that have shown DMTs to have a positive influence on this disease—preventing relapses, slowing the accumulation of brain lesions, delaying the start of secondary progression, and postponing disability. But I won’t.<o:p></o:p></span></span></span></div><div class="MsoNormal"><span face=""trebuchet ms" , sans-serif"><span style="font-size: 12pt;"><span style="font-family: helvetica; line-height: 115%;"><br /></span></span></span></div><div class="MsoNormal"><span face=""trebuchet ms" , sans-serif"><span style="font-size: 12pt;"><span style="font-family: helvetica; line-height: 115%;">I could point out that your same convincing arguments about the devastating effects of climate change—supported by 99% of climate scientists and mammoth amounts of research!—uniquely parallel the same arguments <i>for </i>using DMTs in MS. But I won't.</span></span></span></div>
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<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I could tell you that taking injections isn’t that hard after the first few, even for someone who is so afraid of needles that he has to leave the room when any medical TV show come on. But I won’t.<o:p></o:p></span></div>
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<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I could remind you that for hundreds of years, the <i>only </i>thing people could do for their multiple sclerosis was to change their diet, take herbal remedies, and swallow vitamins. That those treatments didn’t slow the disease then and that there is <i>no solid evidence</i> that they slow it now. But I won’t.</span></div>
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<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I could warn you not to base your entire decision on how to treat your MS on vocal drug-free cheerleaders on the internet (who all are doing great on this diet or that supplement!). Who cite questionable studies... done by the same people who peddle those very diets or supplements. But I won’t.<o:p></o:p></span></div>
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<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I could say all these things. Heck, I’ve tried. This has been written and rewritten (and edited and then edited again) for years. Over 20 pages and 10,000 words. But each time I would have to stop and start over. Too preachy. Too snarky. Too criticizing. Too scary. Meh, whatever. I’ve finally come to the realization that in all likelihood nothing I say will change your mind. That my droning on only will make you resent reading this more and inspire a personal Voodoo doll menagerie of mini Daves (locks of hair provided upon request). After all, you have your arguments.<o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="color: #444444; font-family: helvetica; font-size: x-large; line-height: 115%;">Arguments Against Taking DMTs for Your MS</span></div>
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<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">“It’s my life—it’s my call. I’m comfortable with my decision not to take drugs.” Fair enough. I want you print this out, put it in a safe location, and in 10 years dig it out. Are you still happy with your decision? Are the people you are closest to and who may be your future caregivers—your spouse, children, parents, brothers, sisters—still happy with your decision? </span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">“I’m waiting for better treatments like stem cells. Or maybe something with the gut microbiome.” Interesting research for sure. But while you wait for treatments that may or may not work, MS is doing its malicious work oh-so silently, increasing your level of disability, and, ironically, making it less likely the promising treatments of the future will be able to help you.</span></div>
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<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">I also hear arguments that are curious. “I’ve taken Drug X for so many years and I’ve decided it doesn’t work because I don’t feel better.” Does your neuro agree? Remember, most available drugs don’t reverse disability; they just slow down this <i>progressive </i>disease. Who’s to say it wouldn’t have progressed far faster without your DMTs? (It also should be noted that if you feel your drug isn’t working, that means by association that the combination of your special diet, expensive supplements and unique exercise routine isn’t working either—there’s no way to separate the successes or failures of the two. So are you going to quit all of those too?) </span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">“I’ve taken Drug Y for years and I’m going off all DMTs because of the miserable side effects.” Why would someone stick with one drug for years feeling crummy? And then just stop altogether without trying any others? Oh right, because of the not-so-popular mantra, “If at first you don’t succeed, uh, quit.”<o:p></o:p></span></div>
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<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">And I hear arguments that push the boundaries of common sense. “I’m fine if I’m in a wheelchair later as long as I can have a medication-free life now.” This is a person who really doesn’t grasp the power of this disease, which can rain down far crueler punishments than a chair with wheels. Blindness, deafness, inability to swallow, inability to feel, inability to comprehend even a sentence. </span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">“I don’t want to be tied to medications for the rest of my life.” Huh? The whole point of these medications is to delay progression so you won’t need as many meds to treat all of the complications this disease can rain down if left untreated. </span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">“I don’t want my kids to see me suffer from the medication side effects.” What? So you would prefer your kids to see you suffer from the disease itself? <o:p></o:p></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">Then there is the Steve Jobs defense. "I'll treat my condition naturally and allow my body to repair itself. I'll try traditional treatments later if that doesn't work." Just a wee problem. Like cancer, MS progresses unrelentingly because that's exactly what progressive diseases do. And that delay likely will have a lifetime of consequences. Tragically, as Mr. Jobs discovered, there are no backsies. Time is of the essence.</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="color: #444444; font-family: helvetica; font-size: x-large; line-height: 115%;">The Bottom Line on Taking MS Drugs</span></div>
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<span style="font-family: helvetica;"><span face=""trebuchet ms" , sans-serif" style="font-size: 12pt; line-height: 115%;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM7s_bScO09kNcBrsCI4Yz85GiEUMJ7V4n4YzWm1vbCrVxQPOPHUIBFYhB04sku_NA5raAxvnWHIyGPyO-OlmpOxoZTmtltKWnqaM8BG7xZBP02YyXqRMl1Vfx58pXB1ii5aGFWIgDa75M/s1973/Dave+Ocrevus.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1973" data-original-width="1937" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM7s_bScO09kNcBrsCI4Yz85GiEUMJ7V4n4YzWm1vbCrVxQPOPHUIBFYhB04sku_NA5raAxvnWHIyGPyO-OlmpOxoZTmtltKWnqaM8BG7xZBP02YyXqRMl1Vfx58pXB1ii5aGFWIgDa75M/w628-h640/Dave+Ocrevus.jpg" width="628" /></a></div><br />All right, all right, some of my comments might seem over the top and I apologize. It’s just maddening the lengths people will go to try to justify not treating a treatable disease. Contrary to all the well-meaning folks on the internet who wax that the decision of whether or not to take DMTs is so hard (and always <i>so </i>personal), all the evidence points to a rather easy answer. This isn’t deciding on that grueling third round of chemotherapy to extend your life maybe an extra few months so you can see the birth of your grandchild. This is about taking drugs—even though they are expensive and don’t work perfectly—that have the potential to delay disease progression, reduce relapses and postpone secondary progression. </span><br />
<span face=""trebuchet ms" , sans-serif" style="font-size: 12pt; line-height: 115%;"><br /></span><span face=""trebuchet ms" , sans-serif" style="font-size: 12pt; line-height: 115%;">I know what you are probably thinking.... Whoa, Dave, wasn't there that one study published years ago that found that shots DIDN'T slow down the disease much?!? And I know a person who experienced complications from a drug and she got WORSE. Plus, I've read a LOT of scary stuff on Facebook....</span></span></div><div class="MsoNormal"><br /></div><div class="MsoNormal"><span style="font-family: helvetica;"><span face=""trebuchet ms" , sans-serif" style="line-height: 115%;"><span style="font-size: 12pt;">Instead of putting all of your disbelieving eggs into a few studies, cherry-picked examples, and social media "research</span><span style="font-size: 12pt;">," perhaps look at the bigger picture. There are today many drugs—and more in the pipeline—that may help you keep living the life you want to live with typically only modest side effects. One of my neurologists makes a key point: MS is evolving into conditions like hypertension and diabetes. Neither of those disorders can be cured and both cause lots of complications and disabilities (stroke, heart disease, neuropathy, vision loss, etc.). But they can largely be managed and most people can live with those disorders if treated.</span></span></span></div>
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<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">Here’s the bottom line. With treatment, many people can enjoy pretty normal lives with MS short of a cure. I look at taking MS medication a bit like wearing your seatbelt. Yes, there are cases where the seatbelt will never be needed over the course of your lifetime—where the MS remains at bay even without therapy—but those tend to be the exception. And true, in the rarest of cases, wearing a seatbelt could do more harm than good. But that’s like saying broccoli could kill you… if you asphyxiate on it and no one is around to do the Heimlich and you just sold all your dining room chairs on Craigslist and you have no furniture left to flop on in order to do a self de-choking maneuver. What I’m saying is that statistically wearing your seatbelt and taking your MS meds (heck even eating your broccoli) will help you. And it could absolutely save your life—or at least your quality of life. <o:p></o:p></span></div>
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<span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">In the years that I’ve been running ActiveMSers—I started the website when I was diagnosed in 2006 and today it's one of the largest and longest-running personal MS website on the internet—I’ve met in person and online thousands of people with multiple sclerosis. And not one has ever told me that they regretted taking a disease modifying drug. <i>Not one</i>. Those miracle MS diets that are all the rage on the interwebs? Not one dieter has ever told me their food choices have reversed their MS. <i>Not one. </i>Worse, I have been asked through tears what they had done wrong because they followed Diet X to a T and were still progressing. It's heartbreaking.</span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;"><br /></span></div><div class="MsoNormal"><span style="font-family: helvetica; font-size: 12pt; line-height: 115%;">And then sadly I’ve met lots who wonder what life would have been like if only they had just not given up so quickly. If only they had just started taking those medications earlier. If only they had just tried, <i>tried</i>, taking DMTs to begin with. </span></div>
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<span style="font-family: helvetica;"><span face=""trebuchet ms" , sans-serif" style="line-height: 115%;"><span style="font-size: 12pt;">Now I can’t promise that disease modifying therapies for your multiple sclerosis will work for you. Even a full-on stem cell transplant wasn't able to contain my aggressive MS. But I can promise that with this disease, you never want to start a sentence with “if only…” </span></span></span></div><div class="MsoNormal"><span style="font-family: helvetica;"><span face=""trebuchet ms" , sans-serif" style="line-height: 115%;"><span style="font-size: 12pt;"><br /></span></span></span></div><div class="MsoNormal"><span style="font-family: helvetica;"><span face=""trebuchet ms" , sans-serif" style="line-height: 115%;"><span style="font-size: 12pt;">We are in a golden age of multiple sclerosis treatments. Please take advantage of them while you can. The therapy window for MS is open widest in the beginning stages of the disease. The decisions you make right now will reverberate for a </span>lifetime<span style="font-size: 12pt;">. The longer you can keep your disease at bay the better—indeed it could change your entire future. You alone have the power to take charge of your multiple sclerosis. So (wo)man up and do it.</span></span><br /></span></div>
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Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com94tag:blogger.com,1999:blog-2838498765761167784.post-22563701106395249662020-08-20T12:49:00.004-06:002020-08-20T12:58:16.414-06:00Our First Accessible Road Trip<p><b style="font-size: 12pt;"><span style="font-family: helvetica;">Due to the 2020 pandemic, Laura and I hadn’t
left our neighborhood in months except for doctor appointments. But then we
hatched a plan. We were going to leave the city limits entirely (gulp!) with
our brand new portable toilet and our brand new wheelchair-accessible minivan. We were going to boldly drive up into the mountains and have a romantic picnic. Just the two of us. And our untested porta potty and our untested Honda Odyssey minivan. What,
oh what, could possibly go wrong on this three-hour tour? Picture Gilligan's Island meets the Griswolds. Oh boy... </span></b></p>
<p class="MsoNormal"><span style="line-height: 107%;"><span style="font-family: helvetica; font-size: small;">6 min read</span></span><br /></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"></span></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjznxwFW-A6yePQbop0kqjP_e4MpCcG0BgKiQMIMQR9rcKjr8mVLh3uBcUE9mXQfuvqi1fpuQ8MbU7dSj4wPLP2xllKlbD9HJ3-em95PVztA20c71fd1X7Q0nCXSbhMmbsuziAp9t84-ZvD/s3840/IMG_20200807_142352.jpg" style="margin-left: auto; margin-right: auto;"><img alt="wheelchair minivan road trip vacation" border="0" data-original-height="2160" data-original-width="3840" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjznxwFW-A6yePQbop0kqjP_e4MpCcG0BgKiQMIMQR9rcKjr8mVLh3uBcUE9mXQfuvqi1fpuQ8MbU7dSj4wPLP2xllKlbD9HJ3-em95PVztA20c71fd1X7Q0nCXSbhMmbsuziAp9t84-ZvD/w640-h360/IMG_20200807_142352.jpg" title="Our first trip in our new wheelchair-accessible minivan!" width="640" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-family: helvetica; font-size: small;">Our first road trip in our wheelchair-accessible minivan!</span><br /></td></tr></tbody></table><span style="font-family: helvetica;"><p class="MsoNormal"><span style="color: #444444; font-size: x-large;">Traveling during a pandemic</span></p><p class="MsoNormal">Road trips when you have a disability are complicated. Road
trips during a pandemic when you have a disability are far, far, far more complicated.
They require strategizing. Specialized gear. And a sense of adventure, one that
is clearly distinguishable from sheer terror. In my case, that last one
required a bit of work since for months seemingly every Covid-19 story I read mentioned
the dangers of public restrooms with talk of aerosolization and plumes. PLUMES!</p><o:p></o:p></span><p></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">I was scared. I didn’t want my cause of death to read: “Poor
guy with MS inhaled virus from infected poop after unwisely sitting on the pot
for 25 minutes trying to pee. And he didn’t even have to go. Sad.” I reasoned
that if I had to visit the public facilities I might as well be huffing
coronavirus out of a paper bag. What to do?<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">“Let’s just buy a full-on portable toilet,” Laura suggested,
reasoning that this pandemic thing wasn’t going away anytime soon. Friends had
recommended the <a href="https://www.amazon.com/gp/product/B07CKR3VYT/ref=as_li_qf_asin_il_tl?ie=UTF8&tag=activemsers-20&creative=9325&linkCode=as2&creativeASIN=B07CKR3VYT&linkId=c75c671b1a6673431e52bbab97ea6a54" target="_blank">Porta Potti</a> from Thetford so boom, I purchased one. (Note: as an Amazon Associate I earn from qualifying
purchases; these funds help maintain this website.) “And then we’ll need a way
to transport it so you can use it in privacy.” No problem. Wait, what? <o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="line-height: 107%;"><span style="color: #444444; font-family: helvetica; font-size: x-large;">Prepping our wheelchair-accessible minivan</span></span></p><p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">So that’s sorta how we ended up with a wheelchair-accessible
2020 Honda Odyssey minivan that cost a wee-bit more than the portable toilet. But
that’s for another discussion. After all, this story is about a ROAD TRIP! And
since I’m involved, cue the theme to <a href="https://youtu.be/FHThGmVfE3A" target="_blank">National Lampoon's Vacation</a>, only
instead of starring Clark Griswold you have Gimpy Dave.<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">The goal was immensely modest: drive 50 minutes away into
the mountains that shadow Albuquerque and have a picnic. Easy peasy. A three-hour
tour. (Hum with me, <i><a href="https://youtu.be/Q8jhb5NnADM" target="_blank">A three hour tour</a>.</i>) Laura
dutifully organized everything, packed the food/utensils, and even set up the
toilet, complete with filling the water reservoir and prepping the waste tank.
We thought about testing it first before we tossed it into the back, but time
was a-wasting! Because ROAD TRIP!<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">I did one final pee at home and then boarded our white
whale of a minivan, which Laura had idling outside to cool down. The ramp came
out, as designed. The minivan kneeled, as designed. And then with me safely
inside, the passenger seat slid back and swiveled, as designed. And then the passenger
seat slid back and swiveled, as designed. AND THEN THE PASSENGER SEAT SLID BACK
AND SWIVELED, AS DESIGNED.<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">It must be broken. Our epic road trip had gone all of eight
feet. So we put our collective brains together and our automotive repair talents
to the test.<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">“Honey dear, our automotive repair skillset ends right after
pumping gas and programming the radio,” said Laura. We were doomed. But wait! I
could drive! Let’s just swivel the driver’s seat! But it curiously didn’t work
either. Using immense powers of deduction, we concluded that the move-back/swivel
feature might get disabled if the car was running. AHA! <i>Now</i> we were off
on our ROAD TRIP! I just had to transfer into the passenger seat.<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;"><span style="color: red;">EEEEEEEEEEE!!!</span> A very loud, very annoying alarm was going
off from, of all places, the seat. “WHAT THE HECK,” I yelled to Laura. “YOUR
BUTT MUST HAVE BROKEN IT,” she retorted over the sound of the alarm. My butt
has indeed broken things (RIP that poor toilet seat), but I was being careful. Eventually
we tracked down the culprit: a red switch that my wheelchair had accidentally
bumped. Its purpose? To this day we have no clue. We switched it off. It was
time to go.<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">“Except now I gotta pee.” I grinned. Funny, Laura was in no
mood for my humor. I zipped it. <o:p></o:p></span></span></p><p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="color: #444444; font-family: helvetica; font-size: x-large;">Hitting the road ... gulp!</span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">Thirty minutes later the excitement was palpable as we
drove up the twisty mountain road. We had left city limits for the first time
in five months! And then we heard, after one tight corner, a very loud KERTHUNK!
Odd. A new car isn’t supposed to make those noises. My wheelchair was strapped
in, so it wasn’t the culprit. But what large item in the back could have tipped
over? The toilet!<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">When Laura opened the rear tailgate she was prepared for
the worst: an ocean of toilet water that would pour out and stain her shoes
blue followed by hours of cleanup. Fortunately, toilets meant for boats and RVs
are made to survive tipping. With the toilet now righted and better secured, it
was full speed ahead on our ROAD TRIP. Well, maybe not full speed. We didn’t
want to press our luck with the potty.<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">Finally, and with little fanfare, we arrived at our
near-empty picnic area. Both of us were giddy and hungry, clearly hungry, as
Laura’s tummy was rumbling so loudly it sounded like thunder! “That wasn’t my stomach.”
Rain started to patter on the windshield, each drop mocking us, spitting,
stopping, and then spitting. Fine. Our picnic would be in our minivan, where we
would enjoy the mountain view. And the view of the handicap-accessible bathroom
that I was not permitted to use. Thank goodness I didn’t have to pee. Right?
UH, RIGHT?!<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">People kept driving up to our picnic area. Not to picnic—it
was raining—but to pee. Combine rain with continuous bathroom runs and your MS
brain will finally splinter.<o:p></o:p></span></span></p><p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="color: #444444; font-family: helvetica; font-size: x-large;">Breaking in the porta potty</span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;"></span></span></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidieuuKyiqjtUYgZiHBHWFvF1vd_VBj8-Xpn5WLLMgI0AIIIU7k4qZKsBnT18asH5EHk3RPaEZ6jEDNkny7FUDS6XuJBtmkdHFYn6dWB1y-n8jtiWLI9SZIUr8UjHp9K2kHYbcl0cnKLon/s1000/porta+potti.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1000" data-original-width="1000" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidieuuKyiqjtUYgZiHBHWFvF1vd_VBj8-Xpn5WLLMgI0AIIIU7k4qZKsBnT18asH5EHk3RPaEZ6jEDNkny7FUDS6XuJBtmkdHFYn6dWB1y-n8jtiWLI9SZIUr8UjHp9K2kHYbcl0cnKLon/s640/porta+potti.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">How our new porta potty looks when it's not tipped over.</span><br /></td></tr></tbody></table><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;"><br /></span></span><p></p><p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">“Uh, I think I gotta go.” I gave Laura my best puppy dog eyes. In the time it took Laura to retrieve and then set up our emergency toilet, the urgency was cresting. I had to hustle off the passenger seat! And then </span><span style="color: red; font-family: helvetica;">EEEEEEEEEE!!!</span><span style="font-family: helvetica;"> I triggered the seat alarm again. I ignored it and quickly transferred onto my wheelchair. TIME TO GO. But my pants. They were on my body, and they needed to come off! Laura turned off the alarm and helped me remove my drawers.</span></span></p><p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;"><span style="color: red;">EEEEEEEEE!!!</span> My foot hit the damn alarm again. No time to
think. I had to transfer onto the porta potty. But before I could shuffle over,
in the event I went down, I had to put on a gait belt. Now I was naked from the
waist down and technically armed with an uncontrollable water cannon that did
not shoot water—and I was putting on a belt with an alarm blaring. Then: the
heavens parted, it stopped raining, and I found myself safely on the toilet. I
did it. I DID IT!<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">And then a car pulled into the parking lot. Immediately next
to our van. And the guy opened his door, swung his legs out, turned directly toward
me, and proceeded to play on his phone. Our windows are tinted. He couldn’t see
in. But I could see out. And my bladder was having none of it. I deduced he
must have been reading Moby Dick on his phone. Fifteen minutes later I gave up.
It started raining again. We had finished lunch. Maybe, just maybe, it was time
to head home.<o:p></o:p></span></span></p>
<p class="MsoNormal"><span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">A sense of relief washed over me when we pulled into our
driveway. The trip ultimately had been a success despite all the excitement. The
car worked. The toilet worked. The “picnic” worked. Everything worked. Even my
multiple sclerosis mostly behaved. “Now you can finally pee,” Laura mused.<o:p></o:p></span></span></p>
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: helvetica;">“Naw, I don’t hafta.”</span></span>Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com9tag:blogger.com,1999:blog-2838498765761167784.post-8930323536145134752019-10-19T12:04:00.000-06:002019-10-19T12:04:01.552-06:00Playing the Disability Card FTW<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRc2O6oYPu78uVhvAQkeajHB_QuECIXpa4qdn5V7eOqVKBP5Dj7kXY9SbI5lJQY-L7acxHsgrbRomeUgOeIRcIUozwIQOhFrezaBOnVkTV8lpzgG47AryDCwqinAt73FAyBMvhQKF6yMaw/s1600/Dave+balloons+wheelchair+grass.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRc2O6oYPu78uVhvAQkeajHB_QuECIXpa4qdn5V7eOqVKBP5Dj7kXY9SbI5lJQY-L7acxHsgrbRomeUgOeIRcIUozwIQOhFrezaBOnVkTV8lpzgG47AryDCwqinAt73FAyBMvhQKF6yMaw/s320/Dave+balloons+wheelchair+grass.jpg" width="308" /></a><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">I throw caution to the wind so frequently that I’ve
practically been forced to learn how to parasail. Now I’m not running out into
a lightning storm with a kite and key—c’mon, I’m not daft (nor am I a printer,
political philosopher, politician, Freemason, postmaster, scientist, inventor,
civic activist, statesman, or diplomat). But I’ve been rolling the dice since way
before Andrew Clay coined his middle name. I’ve been pushing envelopes for so
long I can remember the days when you actually had to lick them. I’m not going
to say Livin’ On The Edge is my anthem, but Aerosmith has a point, and author
J.K. Rowling perhaps said it best. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">"It is impossible to live without failing at
something, unless you live so cautiously that you might as well not have lived
at all. In which case, you fail by default." <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">There are going to be failures when you live with a
challenging disease, but at least you are living, damn it. So that’s why I
wantonly attend chaotic outdoor events—most recently the Albuquerque International Balloon Fiesta held on monstrously thick grass—that are not especially friendly to a
disabled person with multiple sclerosis … particularly one who also uses a
wheelchair and has a mercurial bladder with an attitude problem.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Allow me to set this stage: I surprised Laura with a pair
of tickets to see Sting in concert. An outdoor concert. At a grassy community
park. In Taos, New Mexico. Yes, the tiny mountain town of Taos, population 5,668
people. Number of concert tickets sold to see Sting in the tiny mountain town of Taos? 9,000. What could
possibly go wrong?<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaVTPoOW8vzaFtTUfz4x_xIlLDevumtoWtlKxMOOdAZYsNqy1lWTP4atdvV3l2wlWIlgVPxTgZrAeYhNcaIgNdcjCbXZqoL8B_CcBHzoo9NbYbh1pwcIN96Xy4NXGq-CtnGYUy82hXsSxD/s1600/Dave+outdoor+concert+wheelchair.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaVTPoOW8vzaFtTUfz4x_xIlLDevumtoWtlKxMOOdAZYsNqy1lWTP4atdvV3l2wlWIlgVPxTgZrAeYhNcaIgNdcjCbXZqoL8B_CcBHzoo9NbYbh1pwcIN96Xy4NXGq-CtnGYUy82hXsSxD/s320/Dave+outdoor+concert+wheelchair.jpg" width="282" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">As you might expect, the town was crowded. The ski
area was crowded. The restaurants were crowded. The park was gonna be hella
crowded. To prepare, concert organizers informed attendees that basically you
could bring in jack squat: no chairs, no umbrellas, nada. A blanket to sit on
was permissible, but pure folly as there was no room on the ground to place said
blanket—it was going to be standing room only. Ah, unless you were handicapped!
There was a special fenced-off section reserved for us “specials” complete with
a paved path, chairs, and even two wheelchair-accessible porta potties just outside
our area. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">The evening started perfectly. We easily found
parking. We got a restaurant reservation at a steakhouse directly across from
the park. We got to cut the line to get into the concert. And we found a great
spot to park my wheelchair in our reserved area. Just when I thought it couldn’t
get any better, while we were waiting for Sting to take the stage, the woman sitting
behind us tapped me on the shoulder.<o:p></o:p></span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOk_aUt7CusSFdTjGCoLfQnnLQ9mhSCiV2se4T6-MmfDUdt1BjP34-RTFj1p8Qjrrd7ESQ1qDyAMk7F0M4iYh9kDYeGMAHWOiupgTeChVgWcU18OaHeGXD0AHvwVoNsXoD3HWE3KEdGe3n/s1600/Dave+handicap+porta+potty+concert.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="257" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOk_aUt7CusSFdTjGCoLfQnnLQ9mhSCiV2se4T6-MmfDUdt1BjP34-RTFj1p8Qjrrd7ESQ1qDyAMk7F0M4iYh9kDYeGMAHWOiupgTeChVgWcU18OaHeGXD0AHvwVoNsXoD3HWE3KEdGe3n/s320/Dave+handicap+porta+potty+concert.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The accessible porta potty appears sooo close!</td></tr>
</tbody></table>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">“They gave me an extra pint of beer for free, and I
can’t drink both. Would you like one?”<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">As I took the beer, uttering profuse thanks, it dawned
on me that this is what it must feel like to hit the Powerball. Cold beer. Cool
night. And a hot Sting. (Seriously, the dude is 68 years old and looks twenty
years younger. Sings pretty well, too, I hear.) But before I took my first sip
of that icy cold, delicious free beer, I overhead someone complaining. About
the bathrooms. The wait was over an hour. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">I looked at the beer. I looked at the handicapped
bathrooms. I looked at the long, long, long line waiting to use the handicapped
bathrooms. I knew what had to be done. Using tremendous, and to date, unknown willpower,
I passed the beer to Laura, not even taking a sip. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">“Too risky,” I said. “The last thing I need to do is
pee.”<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">As the words escaped my mouth, I knew I accidentally
had just violated the cardinal MS rule. Never, ever talk about bathrooms unless
you have easy access to one. No, no, no, I apologized to the MS gods. It was
just a passing observation! Nope. Now I had to pee. And Sting was coming on. I
turned my wheelchair around to head into the gauntlet of the snaking bathroom
line when a bathroom door opened, and—for the win—I played the card. The gimp in the
wheelchair card. I locked eyes with the woman at the front of the line. I
pointed, she nodded. It was understood. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs35UJfBqbTTpD_M2As5mY2Fi8lxp5MYqsSBy13vcJmrBePy5EnQUVAKxfq-LC8cQYnJJt1KtJOPzhigZlxI9wvz2bqI0PmpEi8szD0Ik8TfnNfx8gAZzJtUanroi9rp46Kb0QpO1WRZy5/s1600/Dave+wheelchair+outdoor+concert.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs35UJfBqbTTpD_M2As5mY2Fi8lxp5MYqsSBy13vcJmrBePy5EnQUVAKxfq-LC8cQYnJJt1KtJOPzhigZlxI9wvz2bqI0PmpEi8szD0Ik8TfnNfx8gAZzJtUanroi9rp46Kb0QpO1WRZy5/s320/Dave+wheelchair+outdoor+concert.jpg" width="240" /></a><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Safely in the bathroom, the panic soothed. I started
to relax and focus on the task at hand. Until I overhead a man in line angrily yell
loudly that he had been in line for an hour and 15 minutes. And that he really,
really had to pee. Which meant, suddenly, I didn’t have to. Oh, MS! After 10
minutes I emerged, puzzled as to why there were only two bathrooms for 9,000
people when I spotted, on the other side of the field, the dozens of
porta-potties reserved for able-bodied concert-goers. All underneath a mammoth
sign that read RESTROOMS. Too bad that guy, and the hundred or so behind him,
couldn’t read.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">I got back to our spot just
as Sting started to sing. I closed my eyes to absorb the moment. Message in a
Bottle vibrated my wheelchair. But at that moment, I didn’t need to send an SOS
to the world. I had the world in my hands. We might not have control over our
diseases—and at times we might channel the King of Pain (Laura might also vote
for King of Pain-in-the-Ass)—but we have control over our attitudes. Never
forget that. And never let that go.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"><br /></span>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwsjY0IcI4Jfyu2G39n_avOwSKpiPgKpIYhALRRsyUe6hKiMy9ZwmbpHXCC43WfwqWUjba8imDBLGQNwE5wrA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com17tag:blogger.com,1999:blog-2838498765761167784.post-28912562202269591692019-07-19T11:06:00.001-06:002019-07-19T11:06:07.549-06:00Getting Lucky Because of MS<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin3EMvkhQyETkXrXjyWfV2-CLQjRAACanmRe1Wui6hyZs_XI9Ws4-6KiRicXPOZcNwFkeuNL4ZEa5AD3GS2WkQyH0oncZYG1iOzmpMPi_wUIotYhiw4XJVBrccY76MheV6cxjocvIKvJzz/s1600/DSC00060.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1201" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin3EMvkhQyETkXrXjyWfV2-CLQjRAACanmRe1Wui6hyZs_XI9Ws4-6KiRicXPOZcNwFkeuNL4ZEa5AD3GS2WkQyH0oncZYG1iOzmpMPi_wUIotYhiw4XJVBrccY76MheV6cxjocvIKvJzz/s320/DSC00060.JPG" width="320" /></a></div>
<div class="MsoNormal">
<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 115%;">The other day, I playfully
joked about getting mauled by bears because I was the slowest in our group—nature’s
way of culling the herd—haha, so funny. Then I went to Yellowstone and the
Grand Tetons. You know, where they have actual bears. And on our FIRST stroll
in the parks, BEFORE purchasing bear spray, a woman ran up to us, breathless
and panicked. “They tell you not to run. BUT I HAD TO RUN.” Then she pointed
behind her. Jesus, she was talking about a bear. </span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 115%;">My only weapon was a removable
armrest on my wheelchair, which I reasoned I could wedge into a grizzly’s jaws
if I timed it juuust right. GRRR-chunk! Then the bear would wander cluelessly
as it now had a wheelchair armrest stuck in its maw, inspiring onlookers to film
the hilarity, and BOOM: the video would go viral with Dave the hero! I also
made a mental note to maybe not joke about bear mauling just before going into
bear country… without bear spray. </span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 115%;">Moments before I could tell Laura and our new
friend to “save yourselves, go on without me” a ranger rounded the bend. The
adolescent black bear was just as scared of us as we were of it and had
scampered off. Crisis averted. For now. After all, we still had a week for me
to get unceremoniously culled. But since you are reading this, I not only
survived our adventure, I experienced a stunningly priceless moment thanks, ironically,
to my multiple sclerosis. <o:p></o:p></span></div>
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<b><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 115%;">Video Blog: Thank You, MS!?</span></b><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 115%;">
So there I was, on the toilet, in the middle of Yellowstone National Park, when
I had a life-altering experience that would eventually bring me to near tears. And
it happened only because I have this damn disease. As much as multiple
sclerosis can take away things, it can give you some things back. So I took it
and ran/rolled with it! This is my first vlog on adventures with MS, and it
includes a couple epic on-location shots of my Yellowstone escapade. I hope you enjoy my adventure as much as I did! </span></div>
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<br />Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com2tag:blogger.com,1999:blog-2838498765761167784.post-43890828859238425882019-05-09T15:47:00.000-06:002019-09-12T09:01:58.688-06:00Wheeling Through the Hood<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8rkgy3WROctxCEB4D51sb0z47Rj_Yzw7a8wnDXJf74o7zC99GsziWrmq006ljFNVISt9qlNO66ET_VTlq6bqCscdZRxw-lcAaYB97mkrxkXUn7w6ej-DjbYMcXRZkU7yEn6v8cRRO2-mO/s1600/HCM+fresh+beer+jugs.jpg" imageanchor="1" style="clear: left; display: inline !important; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8rkgy3WROctxCEB4D51sb0z47Rj_Yzw7a8wnDXJf74o7zC99GsziWrmq006ljFNVISt9qlNO66ET_VTlq6bqCscdZRxw-lcAaYB97mkrxkXUn7w6ej-DjbYMcXRZkU7yEn6v8cRRO2-mO/s320/HCM+fresh+beer+jugs.jpg" width="320" /></a><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="font-size: 12pt;">As you might expect, some of my craziest stories
involve beer. Like that time I accidentally ordered a “jug” of beer for $1.25
in Vietnam (thinking, of course, that I was ordering a mug), foolishly finished
it anyway (waste beer, never!), and was promptly propositioned by two women on a
motor scooter, resulting in now-drunk me explaining to prostitutes just how
unsafe it would be for three people to ride a single motor scooter. Or that
time I was in South Africa at an all-black university, during Apartheid,
drinking warm beer after sunset in a dorm room with a new friend who told me—as
he was shaking my hand—that he was having a conversation with a white person
for the first time in his life. Or that time I was in New Zealand, or Peru, or Austria…
hell, just name a country. And now I can add to that list Orlando, Florida.</span></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Long story short, Celgene invited me and a handful
of other multiple sclerosis bloggers to Orlando for an MS summit on brain
preservation, the focus of their new website <a href="https://www.msmindshift.com/" target="_blank">The MS MindShift</a>. (Full
disclosure, Celgene paid for the conference and all travel, thoughts here are
my own.) Interestingly, their new oral MS drug ozanimod, still awaiting
FDA-approval, was never mentioned once. If you haven’t heard of it, you likely will,
as results from a study were just released this week showing that patients treated
with ozanimod did indeed lose less cortical grey matter volume than did those
treated with another MS therapy (Avonex in this case). The conference was enlightening,
but the beer adventure afterward became the story. <o:p></o:p></span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVP0ka7ayg2S0eQgQc3zmCb51mtnEN3FmM4H3WC8VvXxjg7rHSxPd_X1XyCHSJJq7s28DzYwKSNnlSt1AoL1Ov6KOvbChzAJnNxse0r6yctxlhbAN-qN_JzXt1X3nXNZ0SgBcO6hzhidDx/s1600/Dave+Bexfield+with+Nicole+Lemelle.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1083" data-original-width="1600" height="216" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVP0ka7ayg2S0eQgQc3zmCb51mtnEN3FmM4H3WC8VvXxjg7rHSxPd_X1XyCHSJJq7s28DzYwKSNnlSt1AoL1Ov6KOvbChzAJnNxse0r6yctxlhbAN-qN_JzXt1X3nXNZ0SgBcO6hzhidDx/s320/Dave+Bexfield+with+Nicole+Lemelle.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dave and Nicole from My New Normals</td></tr>
</tbody></table>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Let me set the stage. After saying our good-byes to
Nicole and Tommy Lemelle (<a href="https://mynewnormals.com/" target="_blank">My New Normals</a>), Caroline Craven (<a href="http://www.girlwithms.com/" target="_blank">The Girl With MS</a>)
and her partner Tim, <a href="https://www.facebook.com/AshleyRingstaffMS/" target="_blank">Ashley Ringstaff</a> and <a href="https://twitter.com/msenit4life" target="_blank">Patty Long</a>, the remaining misfits—<a href="http://www.cherylhile.com/" target="_blank">Cheryl Hile</a> and husband Brian along with Jodi Johnson (<a href="http://ediblemonster.com/" target="_blank">Edible Monster</a>)—hatched a plan
to go out to dinner. But first, Brian wanted to get a beer. At a special,
out-of-the-way brewpub. My kinda guy! After my previous worldly beer escapades,
which my wife Laura has always stunningly supported, how could I say no? How
much trouble could we possibly get into? We were in Orlando, home of Walt Disney
World, Legoland Florida, and Gatorland for Christ sakes! How I overlooked Orlando’s
“CSI: The Experience” is beyond me (cue the intro scream, YEEEEAAAAHH, that you just have to listen to one more time). That oversight
turned out to be prophetic.<o:p></o:p></span></div>
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/7uW47jWLMiY/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/7uW47jWLMiY?feature=player_embedded" width="320"></iframe></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Let me be clear: Brian, troublemaker-in-chief, chose the brewery. Not me. (I know, shocker.) He
said it was .4 miles from our hotel. Until I got a text later from Cheryl
saying it was more like a mile, along with the advice that we could take a bus. But handicap accessibility and public transportation are notoriously
unreliable. And Jodi was using Bumblebee, her properly named yellow scooter. Since
I can roll a mile and needed the exercise, especially with the tantalizing reward
of a beer, I figured why not set off on foot and wheels. I love exploring!<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">After we gingerly crossed the train tracks in
downtown Orlando, the mood shifted. And then shortly after we went under the highway
overpass, the mood shifted further. Laura’s Spidey sense started tingling. I
was telling her that it was just dehydration and she needed a pint of porter.
She protested.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">“I think we are in the hood,” she said. I started to
explain that dilapidated buildings, cars on blocks, and sketchy people
aimlessly lingering does not qualify as “the hood,” when a stranger interrupted
us.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">“You guys lost?” We did appear to be a misplaced motley
crew with one person in a yellow wheelchair, one on a yellow scooter, and one
trying to keep her composure.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">“Nope,” I proudly said. “We are going to meet
friends at a brewpub!”<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7iBYPMtDDZkj4F-dg3oX78N52JyPiteew0T18-lvsT4qhRQdmx9FUATtT08d1grAkBUeD3C7ciJmbyqtmv3xpfVLuJcxL1-0zKiMnnQdsQANzK7h2rqAq7kCVQdf89ikLAXOjONY9rus7/s1600/Arya_Stark.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="296" data-original-width="220" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7iBYPMtDDZkj4F-dg3oX78N52JyPiteew0T18-lvsT4qhRQdmx9FUATtT08d1grAkBUeD3C7ciJmbyqtmv3xpfVLuJcxL1-0zKiMnnQdsQANzK7h2rqAq7kCVQdf89ikLAXOjONY9rus7/s1600/Arya_Stark.jpg" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">“Ohh-kay,” he said. “But you do realize you are in
the middle of the hood. Right?”<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Eye daggers more deadly than any weapon wielded on
Game of Thrones were thrown my way. Even Arya with her dragonglass and Valyrian
steel would have been no match for Laura’s optical stabbers.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">“Don’t worry, I’ll walk with you,” said our new
protector, who now reminded me of GOT's The Hound. “Sometimes getting around the
Parramore is like playing a video game where you’ve got to shoot away the pimps, hoes, beggars and drug dealers—pew, pew, pew!” His fingers were firing in all
directions. My God.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxB78MNxcOC235VaArtt6SUR5jxNFlsmz7sX-Xvu0PyBHWpE3KaEm-qD3wPLQXtcuMWATXxvpNMnG4YoNmS1wHoLHc6JgPy65fkEMhIL-WkXxCf7EZS0vKDknloeD2xy_7sKchQOfjRQLV/s1600/Screenshot_20190509-151250.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxB78MNxcOC235VaArtt6SUR5jxNFlsmz7sX-Xvu0PyBHWpE3KaEm-qD3wPLQXtcuMWATXxvpNMnG4YoNmS1wHoLHc6JgPy65fkEMhIL-WkXxCf7EZS0vKDknloeD2xy_7sKchQOfjRQLV/s320/Screenshot_20190509-151250.png" width="180" /></a><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">At this point we all cautiously and quickly got out
our phones to see how far we still had to go. Far enough. But now turning
around seemed folly, since we were no longer on the fringes, but smack dab in
the middle of the hood. Thankfully I didn’t look up Parramore on Urban
Dictionary until I was safely at home and under the covers of my own bed, where
my phone glowed the ominous definition….</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">“Parramore: 1) the worst hood in Orlando, even worse
than Pine Hills (“<i style="mso-bidi-font-style: normal;">don't come into
Parramore unless you wanna get glocked down”</i>). 2) The most notorious
neighborhood in Orlando, aka the 407 (“<i style="mso-bidi-font-style: normal;">Parramore,
the only place in O-Town with more stray cats and glocks than people”</i>).<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Since at the time I didn’t realize being Glock-less
in the Parramore was unwise, I trusted in the one weapon we did have: two
rolling gimps. If we tilted our heads <i style="mso-bidi-font-style: normal;">just
so</i>, flailed our arms <i style="mso-bidi-font-style: normal;">just so</i>, and
let loose a little drool, we might be able to convince the unawares that we
were highly contagious, and in no way did any hoodlum want to catch this infectious
action. No siree. Alternatively, I considered doling out my phone and wallet
(minus beer money) to the first passerby just to get it over with.<o:p></o:p></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQFXN2LHezFy4QdyAWHDIWj4xLr37fbcraypXNknFlRq1UmGj6xjt5VORtMXlMQZT_JUCO6wcXO1wDxIfzL9_pZiQvHef3kaRYmoL0NKZg7mT52eEHstPOr-sH-Zcc6i5J5uVFEOkDU37P/s1600/Dave+Bexfield+with+Cheryl+Hile+and+Jodi+Johnson.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1252" data-original-width="1600" height="312" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQFXN2LHezFy4QdyAWHDIWj4xLr37fbcraypXNknFlRq1UmGj6xjt5VORtMXlMQZT_JUCO6wcXO1wDxIfzL9_pZiQvHef3kaRYmoL0NKZg7mT52eEHstPOr-sH-Zcc6i5J5uVFEOkDU37P/s400/Dave+Bexfield+with+Cheryl+Hile+and+Jodi+Johnson.jpg" width="400" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Soon The Hound had to peel off, but he told us with deep care that we were getting close, and that we would <i style="mso-bidi-font-style: normal;">probably</i> make it. And then like a castle cutting through the mist,
its drawbridge lowered, Broken Strings Brewery appeared. Appropriately, Brian and
Cheryl were sitting beneath a huge middle finger (I was thinking we were all screwed), which became even more appropriate
after we found out they had no had no porters or stouts or dark beers of any
kind—Laura’s preference (now I was doubly screwed). <o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">But we were there. In one piece. With all of our
material possessions. Enjoying beer. So you could say that it was a mighty fine
way to end the day, learning how to preserve our brains in the morning and how
to dodge pimps in the afternoon. Only now we had a new problem: it was the end
of the day, the sun was setting, and we were in a bar. And still in the hood.
Walking back was not an option and, with the possible exception of an Uber RV, no
one ride could handle multiple rolling aids. The city bus beckoned. And it was
coming!<o:p></o:p></span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiifiGeMoE4DLes8JnlK6Bl2sbb9pmo1rXPSp7IIdbIvYFK6L2ZUc7cbqnxoYzS1cMaeHVzfTAP_FF3bpt__hUwEmQ-XPzxuXxLUQ2TTwT8Hc9VH2yw_EDn2BZ90YGb00PaR9ZHEFpphyphenhyphenL0/s1600/Dave+Bexfield+with+Jodi+Johnson.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1354" data-original-width="1600" height="270" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiifiGeMoE4DLes8JnlK6Bl2sbb9pmo1rXPSp7IIdbIvYFK6L2ZUc7cbqnxoYzS1cMaeHVzfTAP_FF3bpt__hUwEmQ-XPzxuXxLUQ2TTwT8Hc9VH2yw_EDn2BZ90YGb00PaR9ZHEFpphyphenhyphenL0/s320/Dave+Bexfield+with+Jodi+Johnson.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With Bumblebee, Jodi points out who'll get mugged first.</td></tr>
</tbody></table>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">And then it was going. Our MS rears could not get
outside in time. So now we were outside waiting for another bus. Without beer. At
dusk. In the hood. Presented with the gift of extra time to panic, I sized up
the situation the way one might size up what to do when a bear charges a group of
people. Who will get mauled first? Cheryl ran a marathon on all seven
continents in a single year, the first MSer to ever do so and I am part of her fan club, which means she’s more
than an order of magnitude faster than I am. And she has endurance. Her husband
Brian (due to his love of beer, I am also in his fan club) needs to keep up with her, so he’s quick enough. Laura runs, fast, and is
smart. Jodi’s scooter scoots along a steady brisk pace. And then there’s me,
with my manual wheelchair, where a curb cut can slow my progress to a crawl. It
was no contest. Heck, Omar (re: The Wire) could take me down with a mere
sideways glance. <o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">While I was in the middle of preparing my final
remarks—something like, “save yourself, go on without me” so that it may spawn
a meme—it dawned on me that people reading my obit might mistake my untimely demise
in Parramore for a freak mosh-pit accident (so Dave-like, they’d say) at a Paramore
concert. But then another bus rolled up and out flopped a ramp—it was fully
accessible! It was a pleasant surprise to us and apparently an even bigger surprise
to the passengers, as many had to move to accommodate a pair of disabled riders.
I even overheard one exasperated passenger exclaim “There’s two of ’em?!” <o:p></o:p></span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg5qgyUsWnMmDEXqmIOgMSLyxJPxv4Qi4hyphenhyphen7VN41sZ50ttVu0Rss2jNUv8XDT_fpIrAxrOGRkoqIU2axJZ66vvqhjAGjGs7G2GEXRVphlaG7T8V3BBu39UG-pQ9cwWDh1Fj2mwGUFQPW5y/s1600/Paramore.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="888" data-original-width="1600" height="177" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg5qgyUsWnMmDEXqmIOgMSLyxJPxv4Qi4hyphenhyphen7VN41sZ50ttVu0Rss2jNUv8XDT_fpIrAxrOGRkoqIU2axJZ66vvqhjAGjGs7G2GEXRVphlaG7T8V3BBu39UG-pQ9cwWDh1Fj2mwGUFQPW5y/s320/Paramore.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not this Paramore.</td></tr>
</tbody></table>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">As we headed back to the relative safety of downtown,
our epic adventure winding down, I got to thinking. The Parramore wasn’t such a
bad place. Struggling, yes, but the people we met were nice. A new soccer
stadium in the area hopefully will help turn around some of the negative
perceptions of the community, which has only received bad press, from Even
Breathing Is a Risk in One of Orlando’s Poorest Neighborhoods to a piece titled
The Rise and Fall of an African American Inner City: The Case of Parramore,
Orlando.<o:p></o:p></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMC_vo1NPp-Yty-w9sDmk-7HX81Pant_98r95i4O0OSODUcd6D4Fc5YxtGo_u-ztEMPPb4V9b0FrZZ7iUrFJl50fNU1S85jXIBlE0l-JmxUqQFm_H_7I4K9-uuAPRZxobELYEIEsYTDjpB/s1600/IMG_20190307_175049.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMC_vo1NPp-Yty-w9sDmk-7HX81Pant_98r95i4O0OSODUcd6D4Fc5YxtGo_u-ztEMPPb4V9b0FrZZ7iUrFJl50fNU1S85jXIBlE0l-JmxUqQFm_H_7I4K9-uuAPRZxobELYEIEsYTDjpB/s400/IMG_20190307_175049.jpg" width="300" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">We struggle with our health issues. These residents
struggle with life. But we all soldier on, trying not to feel sorry for
ourselves, making the best of our relative situations. It’s all we can do, hoping
and believing that one day our tide is going to turn. And if it maybe doesn’t? We try
to drown out that nonsense. For we are a merry band of optimistic misfits. And we
will soldier on. We will give our challenges the full Johnny Cash.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Our trusty brewpub finders Cheryl and Brian dinged
the dinger on the bus. Our stop. Curious. The bus stop was directly under the
highway overpass, dividing downtown and Parramore. We trundled off the bus en
masse, and as it belched its way into the skyscrapers of Orlando, a wistful haze
started settling over me now that our odyssey was moments from concluding. We
turned to roll downtown. But wait! At the end of our sidewalk where there was a
curb cut were orange barrels and safety tape. Closed. So we turned around and
spied the other end exiting toward Parramore. More orange barrels and more
tape. We were in the middle of a closed sidewalk with no escape. The adventure
was going to continue! Perfect.<o:p></o:p></span></div>
<br />
<br />Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com13tag:blogger.com,1999:blog-2838498765761167784.post-51668574225868893512019-04-18T10:33:00.002-06:002019-04-18T10:33:54.366-06:00When a Friend with MS Dies<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRIywgGM5sU1sbfshy8X0-_wNZtJr92VISSAcjfG7rGQt2QrSd_pjyysTbxRQ57SX3_Xz1UTYapcPtkj_TGbUwmOOtwC3xIIHx4j2nh7MvCP4k8KQ7vwjvSB-oObwSghqakh16PfzhlQBK/s1600/Mike+M+WP_20150330_003.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1252" data-original-width="992" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRIywgGM5sU1sbfshy8X0-_wNZtJr92VISSAcjfG7rGQt2QrSd_pjyysTbxRQ57SX3_Xz1UTYapcPtkj_TGbUwmOOtwC3xIIHx4j2nh7MvCP4k8KQ7vwjvSB-oObwSghqakh16PfzhlQBK/s320/Mike+M+WP_20150330_003.jpg" width="253" /></a></div>
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<b><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">On
March 7, after 30 years of living with multiple sclerosis, my friend Michael
McDaniel passed away at the age of 55. News of anyone being taken with the disease
many of us share, especially at such a young age, is disturbing, uncomfortable,
frightening. Don’t let it be.</span></b></div>
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<b><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Life
with a serious health issue, as is death, is unpredictable. But that’s also just
life. Don’t forget that. I got a note the other day from a gentleman recently
diagnosed with ALS. He joined the optimistic misfits at ActiveMSers because he
doesn’t plan to bemoan his diagnosis and fold up the tent. No.<o:p></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Instead
of frittering away valuable time worrying about what might happen (or even what
will likely happen), pause and reframe those thoughts. Pause and let today wash
over you. Every day bathe in the now. Let the now cleanse the uncertainties of
tomorrow. <o:p></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">No,
it isn’t going to be easy. I’ve lost friends and family to car accidents, to
cancer, to mental health issues, to drug overdoses, and to
MS. No matter the age, no matter the cause, it’s never easy. Instead I choose
to celebrate each day—the sunrises, the sunsets. I choose to live the biggest,
richest, fullest life I can. In the face of daunting health challenges, I
choose. I choose.<o:p></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">This
is what I said at Mike’s celebration of life in Albuquerque last month. Writing
and speaking these words helped heal a piece of me, and hopefully helped his
friends and family better navigate this difficult time. Perhaps it will aid in
your journey, too. <o:p></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">This
is my final solid to Mike.<o:p></o:p></span></b></div>
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<br /></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;"><span style="background-color: #ffe599;">(For
his celebration of life in Phoenix last weekend, which I was unable to attend, the
family asked for a video of my eulogy, which I provided. If you prefer to watch
rather than read, you can view it here: <a href="https://youtu.be/qLmohcOBQDM">https://youtu.be/qLmohcOBQDM</a>)</span><o:p></o:p></span></b></div>
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<br /></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Mike
McDaniel Eulogy<o:p></o:p></span></b></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Good morning. I’m Dave Bexfield. To understand just
how much Mike meant to me, I need to tell you a little about myself. When I was
diagnosed with multiple sclerosis 13 years ago, I also started a website called
ActiveMSers. Today, it is one of the longest-running MS blogs on the internet
with thousands and thousands of followers—I have countless MS friends all over
the world. But I only had one best MS friend. And that was Mike McDaniel.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">We met shortly after I
was diagnosed at a dinner arranged by friends. At the time, I didn’t know many
MSers and as a newly diagnosed patient, I was not-so-subtly playing the role of
a deer. A deer staring into headlights, frozen.<o:p></o:p></span></div>
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<span style="mso-bookmark: _Hlk5359741;"></span>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">But then there was Mike, telling me how he carried
his daughter Madison on his shoulders. To prove that he could… and, apparently,
to keep his wife Rachel on the cusp of cardiac arrest. Okay, I thought. That’s
one hell of a streak of stubborn. I <i style="mso-bidi-font-style: normal;">like</i>
this guy. As long as he didn’t live in a distant town, maybe we could be
friends. Turns out he lived closer to me than I could have ever imagined—his
house was only a few blocks from mine.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">So began our 13-year friendship. And like any
friendship, I’d occasionally drive him crazy, and he’d occasionally drive me
crazy. But we learned from each other. Especially at the gym. I urged him to
work out harder, faster, longer. He taught me, well, the opposite. As much as
exercising was good for our health, socializing was healthy for our well-being.
And when it came to the art of socializing, Mike had few peers. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBhTsNgY6dH_247F78P7oCAJffTus_LM23h3qG6RyD67BmH6SYNvuS0IWoAa5OCoctHfEkXbZcxvuNGgVqHwNQ3mZ-F2O9_kyTXTrKWfZZIjJckLMfj3nSbcw0_xgscLKajBGMlmLWSPAQ/s1600/Mike+M+WP_20150330_001.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1484" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBhTsNgY6dH_247F78P7oCAJffTus_LM23h3qG6RyD67BmH6SYNvuS0IWoAa5OCoctHfEkXbZcxvuNGgVqHwNQ3mZ-F2O9_kyTXTrKWfZZIjJckLMfj3nSbcw0_xgscLKajBGMlmLWSPAQ/s320/Mike+M+WP_20150330_001.jpg" width="296" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Everyone at the gym, it seems, knew him. In the
middle of my sets lifting, I’d hear echoes of “Mike!” and, sure enough, another
in-depth conversation between Mike and gym-goer cum friend would ensue. His friendliness
was infectious. I used to playfully interrupt them, urging the chatterboxes to
get back to working out, but over time I realized that that those moments between
sets were far more important than eking out an extra rep or two on the shoulder
press.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">One of my favorite Mike stories happened during an
evening when my wife and I invited Mike and Rachel over for a unique dinner. It
was going to be unique because the two gimpy guys were going to make a feast
all by their lonesome. And by feast, I’m talking a five-ingredient black bean
soup, a favorite recipe of mine because it is so easy and so fast—30 minutes
tops.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">So, an hour-and-a-half later, we were sitting down
to a “gourmet” meal. We did it! I had taught Mike exactly how to make it, even initially
letting him take charge of cutting the onion with a huge, very sharp chef’s
knife. But after seeing his eyes grow into saucers and imagining Rachel’s
disappointment with being married to a 9-fingered husband, I took on the
knifing duties. We were so proud of our accomplishment, and I was thinking,
Dang, Mike might even start cooking this simple soup for his family. Teach a
man to fish, right? At the end of the meal he pulled me aside.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">“Dave, I’ve got to tell you something.” <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">I almost stopped him right there. I knew how good it
felt to accomplish a difficult task. He didn’t need to thank me. This was my
gift to him for being such a great friend. I started reaching around to pat
myself on the back when he finished his thought.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">“Dave, I hate beans….”<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">As we both moved up the disability chart, and I
moved out of the neighborhood, getting together became more challenging. We
relied more on phone calls, but that just wasn’t the same. So we hatched a
plan. We were going to go on an epic adventure. Two gimpy guys. No caregivers.
A Thelma and Louise outing—without the driving off a cliff stuff or Brad Pitt. However
there were a few problems. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Since neither of us could walk well, we were kind of
stuck in the car. And because of MS and bathroom issues, we couldn’t be gone
for more than a couple of hours in the event Mother Nature called. So the plan
came together sort of by default. We were going out to lunch! At a fast-food
restaurant with a drive-thru. And we were going to eat in the car…. Okay, so maybe
it wasn’t a movie-worthy adventure, but eating Popeye’s—at a local park, watching
the ducks do things ducks do—was unforgettable.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN6Yicpkj6SY4RNbv3Bl-_51ybMlzd5mQ6lfMmQwBbuzp25084atMFax9NDcvgeJj3CI_IUo-f5BgVVIt_1XGGug8NXNzEXs4oZJ5LjM6TDHPXn-Rxm0dtKn2bfOgheq1N08dlLNnUzCxa/s1600/Mike+McDaniel.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="680" data-original-width="960" height="226" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN6Yicpkj6SY4RNbv3Bl-_51ybMlzd5mQ6lfMmQwBbuzp25084atMFax9NDcvgeJj3CI_IUo-f5BgVVIt_1XGGug8NXNzEXs4oZJ5LjM6TDHPXn-Rxm0dtKn2bfOgheq1N08dlLNnUzCxa/s320/Mike+McDaniel.jpg" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">The last time we talked, our conversation steered,
as it often did, to our families. Mike was unbelievably smitten with Rachel,
and unbelievably proud of Maddie. Maddie was driving now, which worried him.
But he was most worried about Rachel. He knew her happiness was tied to his
health… and he had no more answers in that department. He wanted to give her
more time. </span><span style="font-family: "Trebuchet MS", sans-serif; font-size: 12pt;">She earned it. She deserved it. He loved her so
much. But he knew what lie ahead.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">We wrapped up with our standard goodbye… “So how are
you doing, Bexfield?” “Fantastic, Mike. As always. And how are you doing,
McDaniel?” His voice was weak from the MS, but right then it got stronger.
Defiant. “I’m good, real good.” <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Telling big, fat lies about our health always made
us laugh through our grimaces. But, you should know it wasn’t really a lie. No.
I’ll forever be fantastic. And know that Mike, wherever he is, will forever be
good. Real good.<o:p></o:p></span></div>
<br />Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com16tag:blogger.com,1999:blog-2838498765761167784.post-36929219798511017912019-02-03T11:02:00.000-07:002019-02-14T10:36:23.303-07:00Misadventures in MS<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhpnJeSmmOfGtEBqUU1lrth2ZZZebz4eYW601DEtjK30CnChg9kqaTpGFibj0VqDhwZO209cfnj54AnMnOT0Rs6lqt7TFRfl4N9Ge_vu-auUiifTo27qBkq8ys4pTloxwy_1Cam4ZtvDv4/s1600/MS+IMG_20181124_151610+%25282%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1522" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhpnJeSmmOfGtEBqUU1lrth2ZZZebz4eYW601DEtjK30CnChg9kqaTpGFibj0VqDhwZO209cfnj54AnMnOT0Rs6lqt7TFRfl4N9Ge_vu-auUiifTo27qBkq8ys4pTloxwy_1Cam4ZtvDv4/s320/MS+IMG_20181124_151610+%25282%2529.jpg" width="304" /></a></div>
<br />
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">You would have been sooo proud of me. See, this past fall, I
was out using my off-road wheelchair exploring the trails near my house. Dirt
trails. Clogged with leaves. And tree roots. And precipitous drop-offs on
either side. Technically not quite cliffs or chasms—only four or five feet at most—but
for someone using a wheelchair it was basically SKIRTING DEATH. And I was doing
it with aplomb, with little assist from Laura. Until we reached a crossroads.
OF DEATH.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">To the right, a gorge (aka, small ditch). To the left,
a steep ravine (aka, small sloped drop-off). And across the path lay an
impassable impediment (aka, large tree root). To advance, the only choice was
to skirt the tree root OF DEATH to the left, placing my wheelchair dangerously
off-camber on the lip of the ravine OF DEATH to avoid the gorge OF DEATH on the
right. Given my history, we know how this would ordinarily play out. But I was
a changed man.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">I was newly older (50) and presumably newly wiser (jesus,
I made it to 50). Plus, I was flush with new-found knowledge that some
followers of ActiveMSers subscribe to the WWDD (What Would Dave Do) mantra. I certainly
did not want to encourage my virtual friends to do anything moronic that could
result in an unplanned ER visit. So I did the unthinkable. I turned to Laura to
tell her that it was time to turn around. That maybe we should exercise
caution. Me.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6lQCP4b4nzWauHuthe2t_AQjb8-lW8fS2DeHTc6qJ-4OW6zryiHAajQI4q69nQlvetVxBlxs0StxFjJEE0wCFPcXcnZnWV01wFsZgwpwgHqXB4zgZNiu6obRPloo0GBsalRJJef5GqTWl/s1600/MS+IMG_20181124_151042+%25282%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1287" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6lQCP4b4nzWauHuthe2t_AQjb8-lW8fS2DeHTc6qJ-4OW6zryiHAajQI4q69nQlvetVxBlxs0StxFjJEE0wCFPcXcnZnWV01wFsZgwpwgHqXB4zgZNiu6obRPloo0GBsalRJJef5GqTWl/s320/MS+IMG_20181124_151042+%25282%2529.jpg" width="257" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">“Oh hells yeah, we totally got this” was all I was
able to make out from Laura as my wheelchair lurched forward like it was a
football sled being propelled by the front four of the ’85 Chicago Bears… being chased
by bees. Before I could fully express my uncertainty about this rash, Dave-like
decision, we were already at Mach 2 and fully committed. What could possibly go
wrong?<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Now I’m always one to explore possibilities. I’m
just a curious dude. But the bottom of a ravine OF DEATH is not an area that
ranks highly on areas I’d like to explore. And yet, as I was looking up admiring
the trees—as I was sliding down into the ravine OF DEATH on my back—it dawned
on me that I shouldn’t prejudge. Once I took stock of my new surroundings, I
was relieved to discover how wrong I was. It was just a regular ravine, as I
was still alive. And apparently, unbelievably, uninjured. No bones sticking out,
gashes in flesh, internal injuries that would require a helicopter evacuation
and immediate surgery. Nothing. Just that I was now at the bottom of a ravine.
On my back. <o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">I was relieved. Oh wait, bad choice of words. Because
panicking when one has multiple sclerosis can conjure up the need to relieve
oneself. So naturally I now had to pee. And poop. And I was at the bottom of a
ravine. On my back.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0QllTfOgzCIYQ5UgkpaE53vgqk3WIzUfe1D3XzvnWBft2UDpKn9m1FpiE4LxrPDry7mIGiB285NlDJLOBbhnpJyFeCPNj-Yn7dErmyut4CgTTURtjezYoAXrL4NAaE-sO4BjAwmz_4uPu/s1600/MS+IMG_20181124_151846+%25282%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1412" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0QllTfOgzCIYQ5UgkpaE53vgqk3WIzUfe1D3XzvnWBft2UDpKn9m1FpiE4LxrPDry7mIGiB285NlDJLOBbhnpJyFeCPNj-Yn7dErmyut4CgTTURtjezYoAXrL4NAaE-sO4BjAwmz_4uPu/s320/MS+IMG_20181124_151846+%25282%2529.jpg" width="282" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Thankfully, by the grace of all that is holy, a jogger
came by at that moment. We were saved! He looked down at the woman tending to
her disabled husband and his tipped over wheelchair, paused briefly, then realized
either a) he was dropping out of the cardio zone or b) the frozen pizza he was
cooking in the oven back at home was going to burn and light the house on fire.
He jogged on. Meanwhile, I was still at the bottom of a ravine. Still on my
back. And frustratingly out of my cardio zone.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Then Barbara, a neighbor, happened to stroll up, or
stroll down as the case may be. <o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">“Looks like you could use some help.” She was keenly
observant. The wheelchair was quickly righted. With Barbara pushing, Laura
pulling, and me cranking, we crested the ravine on the first try. It was almost
too easy. Even my bathroom issues had dissipated.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">“Again!” I hollered. The women were not amused. Is
there a lesson in all of this, other than watching your purported caregiver—who
predicts 99.9% of your moves correctly—like a hawk? I mean, other than to avoid
ravines, both ravines OF DEATH or pedestrian ravines. Absolutely.<o:p></o:p></span></div>
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<span style="line-height: 107%;"><span style="font-family: Trebuchet MS, sans-serif;"><span style="font-size: 12pt;">When you are managing a challenging disease or
disability, there are </span>undoubtedly<span style="font-size: 12pt;"> going to be times when you are going to end
up at a bottom of a ravine. On your back. Spoiler alert: that’s going to suck. (And
you might have to pee.) But instead of bemoaning your fate, take a moment between
curses to enjoy the unplanned view. And take stock of all the good in your
life. Then dust yourself off and make your way out of that ravine—however
slowly. You can do this. You can so do this.</span></span></span></div>
Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com13tag:blogger.com,1999:blog-2838498765761167784.post-37823698497047402862018-11-20T13:36:00.000-07:002019-07-31T10:32:24.131-06:00Handicap Parking—A Trusty Guide so You Don’t Look Like a Freaking Idiot<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcl7LxR2ZxTV_b8-5HY8JshSUTy7jOO0JIl6rLMENeD-jHeW8dm4pTXp4Lv-wfaRikmK9ooQ7zULBcY600xCRbfUkSWXNv7GZXitOmuoV3JfD7A2FaTNt9k7FToCIY4cECqjVFX7uFRJLY/s1600/Handicap+parking.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="725" data-original-width="585" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcl7LxR2ZxTV_b8-5HY8JshSUTy7jOO0JIl6rLMENeD-jHeW8dm4pTXp4Lv-wfaRikmK9ooQ7zULBcY600xCRbfUkSWXNv7GZXitOmuoV3JfD7A2FaTNt9k7FToCIY4cECqjVFX7uFRJLY/s320/Handicap+parking.JPG" width="258" /></a><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">When it comes to handicapped parking, I’ve pretty
much seen it all with my multiple sclerosis. And just when I think it couldn’t
possibly get any more outrageous, it does. Like the other day when Laura and I were
stopping for lunch and someone had parked illegally in the blue striped area
between two handicap spaces, leaving little room for my wheelchair. (Parking in
the blue striped area is strictly forbidden, even if one has a handicap placard
or plate, which—for the record—this person did not.) The offender spotted us navigating
this cluster and once we got inside, hustled out to move her car. Good, I
thought. Until we came out after our meal and saw that she had just moved her
car down a couple spots and was now illegally straddling <i style="mso-bidi-font-style: normal;">two</i> handicapped spaces! I cannot make this shift up.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Who can and can’t (or shouldn’t) park in handicapped
spaces is a debate disabled—and abled—people love to have. And both parties think they know what they are talking
about. Many do. But many don’t. Which is why I’ve prepared this trusty handicap parking g</span><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt;">uide so you and your friends and family don’t look like friggin’ morons.</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">No,
you can’t tell if that person is a scofflaw or really disabled, so stop the
#%*$ trying.</span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;"> This has to lead the list. Many
disabilities are invisible, and even if someone bounds out of the car like a
famished cop at a Krispy Kreme (oh, just kidding officer!), they could still
have a debilitating condition. Please don’t give them the stink eye. For example, with MS, you may walk fine at first before struggling to take steps at the end of a shopping trip. Or when a cool morning turns to a hot afternoon—sapping the strength of MSers like Kryptonite sabotages Superman—a too-close parking space when you arrive at work might feel miles away when it is time to go home. Think about this: Consider
how important it would be to be close to the front door on a cloudless sunny day if
you have a severe sensitivity to sunlight. Or if you are a vampire. Or if you have discovered the lost Ark of the Covenant and decided, like a moron, to look inside, and now your face is melting off and you need shelter. (Wait, that probably wouldn't qualify for a placard. And besides, you likely are a Nazi.) <o:p></o:p></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSl5laSVAVaunkqkPO08yQ_qDr_y5RyxCE2pKXT6YfK_PYum_q291hkPF8D0jYwXYfR6x4kS3w_gEhPDjYX_p17nLV6r90vl5_qkgvfkETpycbXGK7gl884UoQq11HJXBJSSKL2uGdgppA/s1600/IMG_20180528_115322.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSl5laSVAVaunkqkPO08yQ_qDr_y5RyxCE2pKXT6YfK_PYum_q291hkPF8D0jYwXYfR6x4kS3w_gEhPDjYX_p17nLV6r90vl5_qkgvfkETpycbXGK7gl884UoQq11HJXBJSSKL2uGdgppA/s320/IMG_20180528_115322.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nope, not bingo. This is illegal.</td></tr>
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<b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt; line-height: 17.12px;">No, van accessible handicap spaces are not the same.</span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt; line-height: 17.12px;"> Van-specific spaces are bigger and have striped areas on one or both sides of the space to accommodate a ramp for side-loading of wheelchairs or scooters. Intrude on those areas, and that spot becomes rather useless. (Shocker, that includes no motorcycles, which their owners park on those blue striped areas with more regularity than one would expect. And no shopping carts. Don’t leave them there!) If you don’t need the extra space and there are other handicapped spaces nearby, consider using one of those instead. It’s good karma.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt; line-height: 17.12px;"><br /></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">No,
you can’t assume that because a handicap placard or license plate is not
visible, that the car is parked illegally.</span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;"> Yes, disabled
people can forget to hang the placard (done that). And the placard can fall off
the rear view mirror onto the floorboard while you are enjoying a quick
beer—with your spouse as the driver—and then <a href="http://activemsers.blogspot.com/2012/09/the-worlds-most-expensive-beer.html" target="_blank">get a very expensive ticket</a> (done
that). Remember the assume rule. It makes an ass out of u and me. Actually, in
this case, probably just you. I can be an ass about many things, but not when
it comes to parking.<o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">No,
you can’t park there “for just a sec” to run in and grab something unless you
have a placard. </span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Why? Because when you take that space, that
disabled person with a placard—you know, the one who is in the car right behind you, the one you didn’t notice—will assume you are parking legally. And drive on, circling block
after block searching for another accessible space that may or may not exist,
and potentially miss his romantic dinner reservation. <a href="http://activemsers.blogspot.com/2012/02/yo-pal-gotta-permit.html" target="_blank">This happened to me once</a>.
<i style="mso-bidi-font-style: normal;">Once.<o:p></o:p></i></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">No,
you can’t park there to pick up a friend because you are behind the wheel… and
the car is idling… and you could immediately move if asked.</span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">
Because there is not a chance in hell I am going to yell out my car window to
ask you if you are <i>really </i>handicapped and, if not, to please kindly move. See
invisible disabilities, above.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">No,
you can’t park there temporarily to unload your stuffed ferret collection that
you are generously donating to charity.</span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;"> It’s parking reserved
for the disabled. It is not a loading/unloading zone. And what in God's name are you doing collecting stuffed ferrets? And then trying to pawn them off
on a charity? Don’t get me started on my stuffed ferret
rant.<o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6-nn2YELRaz1srQhdBbRo6sL9RXZAJM2WwF8h1u_nX03cyrSIHxq0aFFsvtz-IvUPvip-asEN2EQ_51aG1hGkyILJ9Bfr80v6euulf7IZgw0__Lfh0kUR8-hsSxie3lTrzLrF7CtLuc1h/s1600/IMG_20180528_130120.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6-nn2YELRaz1srQhdBbRo6sL9RXZAJM2WwF8h1u_nX03cyrSIHxq0aFFsvtz-IvUPvip-asEN2EQ_51aG1hGkyILJ9Bfr80v6euulf7IZgw0__Lfh0kUR8-hsSxie3lTrzLrF7CtLuc1h/s320/IMG_20180528_130120.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Also illegal. And still not bingo. <br />
Can you believe this shift?</td></tr>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">No,
you can’t park over the lines for a little extra room because the space is so
huuuge.</span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;"> Being able to park legally in a handicapped space
does not mean you can also be a jerk. When you nudge over into a
neighboring space, whether it is handicapped or not, the people in the vehicle
next to you lose room. And they might need it for a wheelchair or to manage a
pair of forearm crutches or to drive up in a mobility scooter. Or to unload
their cherished stuffed ferret collection. Be considerate to all!<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">No,
you can’t use your mom’s placard to run to the store to pick up her medication.</span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">
Sorry. If your mom is not with you, you can’t use her placard. Period. It
doesn’t matter if you are doing her this massive favor, even though you live with her in a
spare bedroom (you pay rent!), and are 37. And a stubborn case of eczema does
not qualify as a disability warranting the use of a handicap placard. And you
definitely can’t use it if she is dead. That’s just fraud.<o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">No,
you can’t drive with the handicap placard hanging on your rear view mirror.</span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">
It blocks your vision. Oh, and it’s illegal. And makes you look like an idiot.
Don’t be an idiot.<o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">No,
you can’t borrow a handicap placard because you sprained an ankle.</span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">
Such a bummer, I know. Especially since you look disabled! Get a temporary
permit, which is often given out for those dealing with cancer treatments, leg or
back injuries, or some pregnancies (particularly those that require bed rest). And
that also means if you have a placard, you can’t lend it out to your buddy who
busted his toe unsuccessfully attempting a keg stand. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhXrKzPWkRvQIF_ifDmjXtcmiVDVaEvERsIaYoiZBYuhngSq9l0mx-Cn6x1Qn17_a6iiyxWA1bOEyOTPhOVj65p2W3Ws_r_lnYso870azGFAMr_kEUDDfLYwfEqyg-pdaTdlKExj1h5MIg/s1600/WP_20161017_021.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="901" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhXrKzPWkRvQIF_ifDmjXtcmiVDVaEvERsIaYoiZBYuhngSq9l0mx-Cn6x1Qn17_a6iiyxWA1bOEyOTPhOVj65p2W3Ws_r_lnYso870azGFAMr_kEUDDfLYwfEqyg-pdaTdlKExj1h5MIg/s320/WP_20161017_021.jpg" width="320" /></a></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">No,
you also can’t use someone else’s placard so you can get free parking.</span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">
Cars with valid handicap placards in many cities (but not all) get to park for
free with unlimited or fewer time restrictions. Score! (In San Francisco, published
reports have found one could save as much as $14,000 a year!) But if you are
not disabled, you are just a common thief. Next time you are in a Starbucks,
why not just dump the whole “take-a-penny-leave-a-penny” jar into your pocket?
The change might be a nice bonus after you rob that little girl’s lemonade
stand.<o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">No,
it is not illegal to park in a handicapped space if your partner is going to
run into the store while you and your gimp self are waiting in the car.</span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">
But it’s an uncool move. Park in a regular spot and wait there unless you plan to
get out.<o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">No,
don’t call 911 to report a potential offender.</span></b><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">
Call the non-emergency number for your local police department or 311 (if that
service is available) and report the abuse along with the license plate. But
since so many disabilities are invisible, you best be darn tootin’ sure, like
seeing an expired permit or not seeing one at all. It was recently reported
that one cop just sits in a Costco parking lot and hands out tickets (50 a
day!), but he must wait for each and every shopper to check for identification.
<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">These are just a few guidelines to follow when it
comes to handicap parking. And be forewarned: follow them. Because one state
has fines as steep as $10,000 and 18 months in prison for anyone convicted of
making false statements or providing misinformation to obtain a placard. Which
one? You don’t want to find out the hard way. Happy parking! <o:p></o:p></span></div>
<br />Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com15tag:blogger.com,1999:blog-2838498765761167784.post-63437469634101621112018-09-07T15:46:00.002-06:002018-09-17T13:29:05.835-06:00Wheelchairs are not (that) Scary<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkP74te8QGuN1JvnbTmSPuUQypjcfXHTMjUdv9TzDgkgwz87hxjhzGc225CeptFN2JSwyo3nneDlhxpumIhf2E5fAnI6GIcAsktziSFXU0Cr_JXhcp_6ofP_krutTXk3VCNkzPzIdWHB6p/s1600/55.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1506" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkP74te8QGuN1JvnbTmSPuUQypjcfXHTMjUdv9TzDgkgwz87hxjhzGc225CeptFN2JSwyo3nneDlhxpumIhf2E5fAnI6GIcAsktziSFXU0Cr_JXhcp_6ofP_krutTXk3VCNkzPzIdWHB6p/s320/55.jpg" width="301" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">For a couple years, my wheelchair was terrifying.
Not to me, mind you, I’ve always been, like, whatevs. I’ve got MS and I deal
with it. But to my niece Lindsey, who is approaching four, my wheels were a cross
between Alien, Pennywise (the clown from It), and that horror movie doll
Chucky. A trifecta of terror that could only be made worse with Nickelback songs
playing on a perpetual loop. And then Lindsey had an epiphany, as much as a three-and-a-half-year-old
can have epiphanies.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">For her entire walking life, Lindsey demonstrated
her running prowess and her hide-behind-mom’s-legs-and-moan skills whenever I appeared
rolling anywhere near her. My arrival would cause that little girl to scatter
like a freshly unearthed roach, which at first allowed for some peace and quiet.
I was the Roomba, she was the dog—we had a mutual understanding to stay the
hell away from each other. At least a generous arm’s length. And then
inexplicably she dipped a toe in.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguAx_q5xZbQ5jyhQPrUigvVE1Ipfq3YsOBOoRtpEEaFD0cSiQuB7QOp53vGJMNy1FlMA8ib_H5miHid6c6lPTdo5S6V7hKIjy7manLLbFKjajfqcFFUk3ahEMsmDkfoznjk8QYpg6_gWer/s1600/57.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="741" data-original-width="775" height="305" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguAx_q5xZbQ5jyhQPrUigvVE1Ipfq3YsOBOoRtpEEaFD0cSiQuB7QOp53vGJMNy1FlMA8ib_H5miHid6c6lPTdo5S6V7hKIjy7manLLbFKjajfqcFFUk3ahEMsmDkfoznjk8QYpg6_gWer/s320/57.jpg" width="320" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">We met up with her family in Chicago this past
spring and at first she eyed me warily, suspiciously. But when Lindsey got tired
at the Shedd Aquarium, she deduced that riding on Uncle Davey’s lap might—might—be
okay as long as Mom was nearby. Nearby as in holding her hand, ready to rescue
her from this Mad Max fellow in a yellow wheelchair. A few times the fish
distracted her so much (“THOSE ARE NOT PIRANHAS BECAUSE YOU CAN’T SEE THEIR
TEETH!”) that she even dropped Mom’s hand for a minute or two. But it wasn’t
until July that the thaw started to happen, when I was a thousand miles away…<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">She started laughing. With me. Not over the phone or
on FaceTime, but on YouTube. My video “Laughing with Multiple Sclerosis”
started trending in Wisconsin because she was watching it over and over. And
over. With Mom vetting other videos for cursing (she knows her brother), Lindsey
got to see her uncle in a totally different light, and she loved it.<o:p></o:p></span></div>
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/ObZ4zHaRHus/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/ObZ4zHaRHus?feature=player_embedded" width="320"></iframe></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">So when Kathryn arrived for my 50<sup>th</sup>
birthday party a month later with Lindsey in eager tow, I was unexpectedly Mr.
Popular. Our roles were suddenly, shockingly, reversed. I couldn’t escape her
clutches as she latched onto me like refrigerator magnets on a mission. I also
discovered it is beyond challenging to enjoy a beer when you have a squirmy child
with all four limbs suctioned onto you all octopus like. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY8Pfbfa8VLTZB2WsUMsOLe0fx-SlpR_g4Mzyww8pdhZaFHjv3a_9DlNor0G6G6kHEU0pMfYfKAZJA5K-0Pwoie6KDpOhkLvnSfV7GqbzvNcGLauxc9aZyGi-70y11cgXIOCn2VOGo-J8e/s1600/59.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1024" data-original-width="768" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY8Pfbfa8VLTZB2WsUMsOLe0fx-SlpR_g4Mzyww8pdhZaFHjv3a_9DlNor0G6G6kHEU0pMfYfKAZJA5K-0Pwoie6KDpOhkLvnSfV7GqbzvNcGLauxc9aZyGi-70y11cgXIOCn2VOGo-J8e/s320/59.jpg" width="240" /></a><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">The highlight? On her last day we played bus at our
local children’s museum using oversized foam blocks. Lindsey tasked herself as the
bus driver (notice the seatbelt, safety first!) and I was, natch, the bus. We could not have
had more fun, so much so that she was crestfallen when it was time to go home. I
even got smothered with hugs and kisses, completely unthinkable just weeks
earlier. <o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">I can’t wait until we get to roll again together. Maybe
next time I’ll play Thomas the Train! Or Lightning McQueen! I won’t miss too
much the relative peacefulness and quiet of playing the bogeyman, no. But if I’m
smart I’ll enjoy a quick beer before she spots me.<o:p></o:p></span></div>
<br />Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com17tag:blogger.com,1999:blog-2838498765761167784.post-40097852845570649762018-07-21T16:22:00.000-06:002018-07-21T16:35:28.043-06:00Traveler Confessions of an MSer<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitVmBt6I8QZV0JIqdk7mg2UKi0XkUen4DWFqglzQbTS9irby_pX7qUOWblsAbUhgTCprTYpSw9OR7i_U-9cENeh0M4J6_LXL3W1ZVZX9tuX49hWjDbpIsJr2a70k3m5codOImU8ajyhAnC/s1600/IMG_0056.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1144" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitVmBt6I8QZV0JIqdk7mg2UKi0XkUen4DWFqglzQbTS9irby_pX7qUOWblsAbUhgTCprTYpSw9OR7i_U-9cENeh0M4J6_LXL3W1ZVZX9tuX49hWjDbpIsJr2a70k3m5codOImU8ajyhAnC/s320/IMG_0056.JPG" width="228" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">I’ve been all over the world with multiple sclerosis—to
every continent sans Antarctica, to dozens of countries, to thousands of towns
and cities. I always wax poetic about my adventurous travels. And yet as a
seasoned MS globetrotter, oh so much seasoning, I
have a confession. Before every trip, I am nervous as all get out. <o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">One would think after trekking through the Himalayas,
scooching on my butt around Machu Picchu, camping in the Sahara, and heli-hiking
over New Zealand glaciers, I would be over pre-trip jitters. But no. As the
clock ticks down to my departing flight, my stomach is in knots as my brain,
despite my best intentions, goes through every SINGLE thing that could possibly
go wrong. <o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Of course that often begins with complications in
the bathroom department, then jumps to all sorts of potential calamities and surefire
pitfalls that will turn a cheery vacation into a trip of doom. DOOOOM. The all
caps (in a bellowing deep voice) is joined by dark clouds, clapping thunder,
and a skull-and-crossbones warning beacon shining in the night sky like the Bat-Signal
over Gotham.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Here’s the thing. In the 13 years that I’ve had this
disease, most of which have required mobility aids including a wheelchair, I’ve
somehow managed to survive more than a collective year of intrepid exploration
of our grand planet. Hundreds of foreign beds, unfamiliar and inaccessible cities,
and countless virtual deathtraps masquerading as bathrooms, and I’m still here,
and I’m still having an awesome time.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw3Zr07MyqP_gwE3TnhPCGULY-8VQkp6TWkst7lAI0h6UE4mBxHYnc2zXNceWmFb2a6HtPeMHVC0yQSz0WKeecV09P9VGEAS0AnmwU7JSCQjP7gheR4a7IyQfn_YYxrV1exgYNsjfM5a1j/s1600/DSC08007.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw3Zr07MyqP_gwE3TnhPCGULY-8VQkp6TWkst7lAI0h6UE4mBxHYnc2zXNceWmFb2a6HtPeMHVC0yQSz0WKeecV09P9VGEAS0AnmwU7JSCQjP7gheR4a7IyQfn_YYxrV1exgYNsjfM5a1j/s320/DSC08007.JPG" width="320" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12.0pt; line-height: 107%;">Now, that’s not to say I haven’t had issues traveling.
Oh, I’ve had issues, as Laura would seriously kink her neck nodding in agreement—picture
a shelf of bobbleheads going full bore. Traveling with someone who has MS isn’t
necessarily a “vacation”. For instance, a wheelchair-accessible water taxi in Venice has to be arranged in advance, isn't cheap (opt for the water buses instead, which are all accessible), and there's that risk of falling into the canal </span><span style="font-family: "trebuchet ms" , sans-serif; font-size: 16px;">while transferring</span><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt;">, getting the chin strap on your dorky hat caught on the propeller, and then drowning while fish finish off your half-eaten gelato. What a waste of good gelato! But the experiences more than make up for the
challenges. The memories of fun far outstrip the bumps (but boy do those bumps
make for knee-slapping good stories). And every time I get home, I look
back and wonder why I was so worried. Pshaw, I think.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt;">There are always hiccups when you leave the relative
safety of your home. But even that’s relative. More accidents happen at home
than anywhere else, so look at it that way and it makes perfect sense to get
out of Dodge. For our next trip, we were almost off to Dubai, Oman, Jordan, and Egypt, but accessibility,
100-degree days, and, well, common sense, dictated the decision to book a more
pedestrian cruise to Spain, Portugal, and the surrounds.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTa4w7uB0m8LGHj-oub0iaA7Gf1eqqLsfoRe02i2_XSnC4nl5ugRAjI6_NZIiwE2cLiZ-BtoQMl2N4vKU0kS5gg4DSHnTFvUDOYH1fjkqLBZTmIdGxzNR2XNmjVRghAVFkkGdqPMJtbSGT/s1600/Run+with+Bulls.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="635" data-original-width="610" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTa4w7uB0m8LGHj-oub0iaA7Gf1eqqLsfoRe02i2_XSnC4nl5ugRAjI6_NZIiwE2cLiZ-BtoQMl2N4vKU0kS5gg4DSHnTFvUDOYH1fjkqLBZTmIdGxzNR2XNmjVRghAVFkkGdqPMJtbSGT/s320/Run+with+Bulls.JPG" width="307" /></a><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt;">I’ll admit the nerves are just starting to
percolate, even though I’m months away from our European vacation. Before I embark on any expedition,
questions of travel fitness seep into my subconscious, and always will because
of this darn disease. And I’ll bet that your brain probably does the same
thing. Doubts will abound when you leave your usual habitat, that’s normal. That’s
also life—and travel—with a disability.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt;">But I’ll be okay. Just like you’ll be okay. (Quick tip, maybe avoid doing really stupid stuff like running with the bulls.) Keep
getting out there, even it's a short road trip on a shoestring budget. If I can do it, I’m confident you can, too. And if you need any extra inspiration, please check out the craziness on <a href="https://www.instagram.com/activemsers/" target="_blank">ActiveMSers' Instagram</a> (https://www.instagram.com/activemsers/). Happy exploring!</span></div>
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<br />Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com15tag:blogger.com,1999:blog-2838498765761167784.post-22418753318757935722018-06-18T12:31:00.001-06:002018-06-18T12:31:10.776-06:00Begrudgingly Sharing My Kitchen<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFp2e5m_DQhQE1uI41lxmV9nwSOVJqEXSeXCN0Qw8Xtq533AL_cqve_RnCxaX6XB6TH_3Pq1VwZg9FfpGPaAS0cgxQlv-DwGfylSyH8WpmaUS_5fAPd4CSvtDytBg2y2C9aGmR1G8j16vv/s1600/Kitchen1.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFp2e5m_DQhQE1uI41lxmV9nwSOVJqEXSeXCN0Qw8Xtq533AL_cqve_RnCxaX6XB6TH_3Pq1VwZg9FfpGPaAS0cgxQlv-DwGfylSyH8WpmaUS_5fAPd4CSvtDytBg2y2C9aGmR1G8j16vv/s320/Kitchen1.JPG" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Oof, this one stings a bit. Before I was diagnosed with
multiple sclerosis in 2006, I was the chef of the house. I made all the
breakfasts, all the lunches, all the dinners. Laura was the baker, the dessert
maker. And we were great at our roles. Evenings were feasts and I relished
every opportunity to play in my kitchen (emphasis on MY kitchen) and experiment
with every type of cuisine this planet has to offer. And I got good at it. Real
good. Like chefy good. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">As a learning cook in my twenties, though, I had my
colossal failures. So colossal, they are lore in our household, defined simply as
“incidents”—the blender incident, the cayenne pepper incident, the other
blender incident, you get the picture. How was I supposed to know that using a
knife to unjam a blender—while it was still running—was a bad, bad idea? Or
that measuring spices over a pot of soup could go very, very wrong if the lid
on your spice jar plunked off into the soup and the full jar of its fiery contents
followed suit? And that leaving a blender unattended on the edge of a
counter—spinning wildly with a red fruit smoothie mixture inside—was another
bad, bad idea? Other than using logic, there was NO way to know this.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDwj7AFCqwJ4FMMcsjWxfx8UsMh1woPKb2Wf8QBbKl3D7_V8vsD2d9zAB99rZMu3qzNcTfP0x6sS6TR-K8eVQ6jkRCsGY4f3qYp0LJcuOCc2ZnaSBOlmHPSoLRquaX8nTTHXl9gXOJOnWk/s1600/Kitchen5.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1119" data-original-width="1600" height="139" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDwj7AFCqwJ4FMMcsjWxfx8UsMh1woPKb2Wf8QBbKl3D7_V8vsD2d9zAB99rZMu3qzNcTfP0x6sS6TR-K8eVQ6jkRCsGY4f3qYp0LJcuOCc2ZnaSBOlmHPSoLRquaX8nTTHXl9gXOJOnWk/s200/Kitchen5.jpg" width="200" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">But I learned, and my mistakes grew further and
further apart. Dinner parties were routine, and I even insisted on no potlucks.
I wanted to cook. All of it. And then MS came along. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Soon after my diagnosis, Laura started making
breakfast on a few weekends. I could, but she wanted to help, so I let her. But
for the most part I still made all the breakfasts, all the lunches, all the
dinners. I didn’t grill as much, but summertime grilling and MS don’t mix that
well, sorta like high heat and half and half (uh, don’t do that).<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9KY0PvpfpNESJiWd1ldPmytGU9MnFcrTnO0yYNEMQQnLb-BP4Eu-bVb667wPVZDhbuj-rS2vBlF6BoD59ky8E67tsKi88EPIrzZpVJBRGFuDf3A4B5RedjhOwlC6JxaqePkyTPSu4p9va/s1600/Kitchen4.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="901" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9KY0PvpfpNESJiWd1ldPmytGU9MnFcrTnO0yYNEMQQnLb-BP4Eu-bVb667wPVZDhbuj-rS2vBlF6BoD59ky8E67tsKi88EPIrzZpVJBRGFuDf3A4B5RedjhOwlC6JxaqePkyTPSu4p9va/s320/Kitchen4.jpg" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">And then a few years ago she took over making
breakfast every weekend. I was okay with that. After all, she makes a mean
Dutch Baby pancake (with sausage or crispy bacon on the side, crisped just how I like it).
And then she was making her own breakfast some mornings. And then she was
packing her own lunches for work some days. And then she was helping me in the
kitchen some evenings. Suddenly, but not so suddenly, Laura had become my
sous-chef de cuisine.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0KgSdZTK7oqZcw-RvmnACRLAg7Y2FrIGDGnGSs9IJHUq4rrJBp7fggUdQboCbAJ95Bglqjkfy5m-w5Ll4AjL5mcW_QGvs3EIINl92ehCZi2Y4T5f35AY0-d0Zu8wV5uw35FWZo4crKNmr/s1600/Kitchen2+%25282%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1520" data-original-width="1600" height="190" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0KgSdZTK7oqZcw-RvmnACRLAg7Y2FrIGDGnGSs9IJHUq4rrJBp7fggUdQboCbAJ95Bglqjkfy5m-w5Ll4AjL5mcW_QGvs3EIINl92ehCZi2Y4T5f35AY0-d0Zu8wV5uw35FWZo4crKNmr/s200/Kitchen2+%25282%2529.jpg" width="200" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Today? I can’t really cook without her. Her mise-en-place
assistance is invaluable, as gathering things to cook given my mobility issues includes
the risk of ushering in another ice age due to my glacial speeds. When my hands
are too tired (say, after an afternoon ride on my arm bike), she actually handles
a knife properly, a massive pet peeve of mine. And now she even cooks fish
better than I ever did. I’ll admit, I’m jealous. But proud as hell.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Sure, because of MS my duties have changed in the
kitchen, <i style="mso-bidi-font-style: normal;">our</i> kitchen, but I’m still a
chef. I’ll always be a chef, just like I’ll always be a snowboarder, a hiker, an
explorer. Our shared disease often requires inconvenient—and unwanted—changes,
and it is how we cope with these new realities that shapes the future richness
in our lives. We can desperately cling to what we had as the rope burns through
our hands. Or we can evolve and grow and lead fuller lives than we ever thought
possible with MS. I choose the latter.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcRUCIa9lVXHz3-R2JQPgcWp0IV3hfasJGWBt2G6PqOhwMZ9mILSVBgltiGuWpPgV8B4sPNHcbkXxLQSLSrGXNV7lRImsTp9sS58A1HcSNENP1u3ZEYnND18aNE-MjBuXe97mZrKcnK4N2/s1600/Kitchen8.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1289" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcRUCIa9lVXHz3-R2JQPgcWp0IV3hfasJGWBt2G6PqOhwMZ9mILSVBgltiGuWpPgV8B4sPNHcbkXxLQSLSrGXNV7lRImsTp9sS58A1HcSNENP1u3ZEYnND18aNE-MjBuXe97mZrKcnK4N2/s200/Kitchen8.JPG" width="160" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Now it is my job to teach her about a job she never
wanted … teach her to be the chef de cuisine. Educate her on the importance of
fond when making a pan sauce. Instruct her on the nuances of how to properly bloom
garlic, the secret to cooking steak to a perfect medium rare, and why using razor-sharp
knives is essential. And nod with understanding when she has the same, ahem, <i style="mso-bidi-font-style: normal;">incidents</i> I had decades ago—the wooden-spoon-left-on-a-hot-pan-too-long
incident, the paper-too-close-to-the-hot-burner incident. Well, maybe not the
same incidents. She knows by now to watch out for that damn blender.<o:p></o:p></span></div>
<br />Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com13tag:blogger.com,1999:blog-2838498765761167784.post-22908433588612682112018-05-14T11:43:00.000-06:002018-05-14T11:43:49.138-06:00Shocker! Caregivers Are People, Too<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMob8WjuuUjG9BsOhzNp1zl6ps3_QG-_8GRSzZJoSqJOHlHSPXjWvonSanLH_nr_IFXG7wnU6OO3WyHaKmoiE9IUMneVIHAHejhvUncwKCsavG0P-V1-s96qyjKH8AIhjPfZ15tb-WEVQ1/s1600/Spain_2780.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMob8WjuuUjG9BsOhzNp1zl6ps3_QG-_8GRSzZJoSqJOHlHSPXjWvonSanLH_nr_IFXG7wnU6OO3WyHaKmoiE9IUMneVIHAHejhvUncwKCsavG0P-V1-s96qyjKH8AIhjPfZ15tb-WEVQ1/s320/Spain_2780.JPG" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Poor Laura. I pride myself on being a bit stubborn with my
feisty multiple sclerosis. Often it works. I’ve <a href="http://activemsers.blogspot.com/2016/11/the-occasionally-merciful-ms-gods.html" target="_blank">explored</a> Machu Picchu,
scooching down steps on my butt while Demi Moore looked on. I’ve hiked across
rickety, bouncy wooden bridges risking life and limb, and <a href="http://activemsers.blogspot.com/2012/08/hating-snakes-and-bridging-fears.html" target="_blank">survived</a>. I’ve
kayaked when I had no business <a href="http://activemsers.blogspot.com/2016/08/failure-is-option.html" target="_blank">kayaking</a>, driven when I had no business <a href="http://activemsers.blogspot.com/2016/01/stubborn-or-stupid.html" target="_blank">driving</a>,
and cycled when I had no business <a href="http://activemsers.blogspot.com/2017/02/eye-caramba.html" target="_blank">cycling</a>. And then there was last Friday
night.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">We know how this story ends. Not well.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">So Laura and I were at a concert at a local winery,
listening to a master sarod player accompanied by traditional Indian tabla
drums and the melodic drone of the tanpura. (Yes, I had to Google all of those
things, too.) The venue was intimate, cozy, and… not terribly handicap
accessible. After navigating grass, crowds, and wine barrels, I tucked into a
spot near the stage out of the way of the “abled” and parked my wheelchair to
enjoy the performance, while my wife and mom found seats several rows back. <o:p></o:p></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ1MaWCfBQd484Lk1T8Qzzxex401_LQs2K68koCJvbswqQL8ncLIMkSQlDj0zm-F1IuXpsn2N26HYNqkJqvK586aVb0p0VC0fPprBFA5sf54AGZ1UYDbuxQFBUWx5YVjBcJikWt9VP3tNX/s1600/India+D+and+L.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="465" data-original-width="683" height="217" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ1MaWCfBQd484Lk1T8Qzzxex401_LQs2K68koCJvbswqQL8ncLIMkSQlDj0zm-F1IuXpsn2N26HYNqkJqvK586aVb0p0VC0fPprBFA5sf54AGZ1UYDbuxQFBUWx5YVjBcJikWt9VP3tNX/s320/India+D+and+L.jpg" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">So far, so good. The music was trance-like, and took
me back to my travels with Laura 25 years ago to our hazy hot week in Madras. And
then there was intermission. Intermission, may I remind you, is when our brains
double check our bladders. And my bladder, after the required wine at a winery,
was now wide awake as if it had had several shots of espresso.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Fortunately, I was informed that the bathroom not
only had a ramp, but also was fully accessible with multiple grab bars. As my
3-year-old niece is wont to loudly exclaim with each and every trip to the facilities,
I CAN GO POTTY ALL BY MYSELF! There was just one important, sorta key fact that
was left out: to access the accessible ramp to the accessible bathroom, there
was this rather problematic 3-inch threshold to get there. Three inches, maybe
even just 2.5. How hard could three inches be to navigate solo in a wheelchair,
especially if you drop down backward, very, very carefully?<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">I discovered, hard. As, in excruciatingly slow
motion, my wheelchair became a recliner, perfect to view the winery’s exquisitely
wood-carved porch ceiling and the nose hairs of panicked patrons now sporting saucer
eyes.<o:p></o:p></span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5cRiaS3Gj70KYhYA4NiuSCaCwAtmI7NgJJI7YRuO_1KycU5Z5yMIKSSKKxbDBzehygHrrHfz-PyogznmbjsfKjw2cu_NwYxeTJXrLAxJzUicum_8WcZm7x91BCOYVpuCSDgIbtJ9TcpOm/s1600/ActiveMSers+Riga+MS+Bentley.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="768" data-original-width="939" height="261" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5cRiaS3Gj70KYhYA4NiuSCaCwAtmI7NgJJI7YRuO_1KycU5Z5yMIKSSKKxbDBzehygHrrHfz-PyogznmbjsfKjw2cu_NwYxeTJXrLAxJzUicum_8WcZm7x91BCOYVpuCSDgIbtJ9TcpOm/s320/ActiveMSers+Riga+MS+Bentley.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">MS is everywhere in our lives. Even random Bentleys remind us.</td></tr>
</tbody></table>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">“THAT’S my HUSBAND,” said my rescuer, Laura, as she
and other concert-goers rushed to prop me back up. She had been in the line for
the bathroom, and was shortly headed back inside to check on me and my needs
(oh, so many needs), as she always does.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">I have one primary job as an MS spouse: do not get
hurt. Thankfully I didn’t! No bumped head, no concussion, no stitches—just a
bruised ego. But I did violate rule #2: do not freak out your spouse. I should
have asked for help from my care partner. It was an easy ask. But when you have a disability, you
want to be as independent as you can be, and that urge can cloud judgement like
a Seattle winter.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">I upset Laura, which I try NEVER to do. But boy was
she was angry, maybe not at me directly, but at this disease, and what it does
to our lives, and how it reshapes virtually every little thing. And I can’t
blame her. Especially if I had to deal with me. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Caregivers are allowed to get angry. They are
allowed to hate the universe, at least temporarily. And they are allowed to
roll their eyes when their spouse tries to assuage their feelings by dramatically
playing Peter Gabriel’s In Your Eyes ala John Cusack in Say Anything. Yes, I
resorted to desperation measures to cheer her up. I looked as despondent as Lloyd
did in the movie, only holding up a cell phone instead of a boombox because,
well, it isn’t the '80s. And, surprise, it worked about as well as it did for him.<o:p></o:p></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/S5Y8tFQ01OY/0.jpg" src="https://www.youtube.com/embed/S5Y8tFQ01OY?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">The next morning all was forgiven (mostly). Because
when you are coping with a challenge like MS, letting something like this
linger doesn’t make it any easier. But for a few hours, a cathartic release is
sometimes just what the doctor ordered, and even the best caregivers don’t need
a prescription to go there. And it serves as a perfect reminder that caregivers most definitely are people, too. Always treat them that way. Because if you don't, holding a boombox over your head can sure get tiring.<o:p></o:p></span></div>
<br />Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com18tag:blogger.com,1999:blog-2838498765761167784.post-82114182026206062182018-04-19T15:36:00.000-06:002018-04-19T15:36:33.933-06:00When Adapting Fails, Epically<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9dXGuRYmKI2ymnAGA4x1RF5uBk1g0BhACzhEJliDxx1QFadCBsIeUZoYYy3eXyI1Gzw6uOCrHUrVSlfDZ_C6bUzvKAowhyJVve2TpQosGdknMOx-CDsblB0VTEIXJ5hvfbN5y32bVDowB/s1600/IMG_20180223_110905.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9dXGuRYmKI2ymnAGA4x1RF5uBk1g0BhACzhEJliDxx1QFadCBsIeUZoYYy3eXyI1Gzw6uOCrHUrVSlfDZ_C6bUzvKAowhyJVve2TpQosGdknMOx-CDsblB0VTEIXJ5hvfbN5y32bVDowB/s320/IMG_20180223_110905.jpg" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Oh, Dave. Dave, Dave, Dave. That’s sort of what the
voice in my head was saying, along with maybe a few curse words, when I was trying
to pee … in public, in broad daylight, in front of dozens of people. Let me
explain.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Multiple sclerosis forces those with the disease to
adapt as it progresses, to bob and weave around new disabilities, learning new
tricks. Recently I had come up with a brilliant one to overcome a common and
vexing problem. How to pee on long bike rides when a bathroom wasn’t an option.
<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">In the past, I did what guys do on long rides: find
a tree. But as my legs have gotten weaker in the dozen years I’ve had this
disease, I’ve had to make changes. Avoid morning rides when my bladder tends to
be most feisty, limit cycling excursions to a couple hours, and wear adult
protection for emergencies (just in case). This worked okay-ish. But that MS
potty pressure—and if you have this disease you almost certainly know what I am
talking about—wasn’t going to go away and trying to jump off my trike when the
urgency flag was flying had been getting harder, especially with an overheated
body due to heavy exercise. What to do?<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">What my grandpa did when he needed a bathroom break
flying B-17s in WWII: pee in a tube. Brilliant! Why hadn’t I thought of that
earlier? A quick shopping spree on Amazon got me totally set up: condom catheter
and tubing. (Yes, I realize this is a guy solution, but the SHEWEE does exist
for women, although for obvious reasons I have not tested this.)<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi52E3gw_hFkiE2UHhmiYU9irmg2Ms2Zjvgl9PGhvjLQ5yAYdNrSmm3HdAWRmJaZn16VxShF48F9jiG7DJwIqzNBhDPWifxulgv5BVTteKaDe9kodih7KpRBq-1gxgWqXuJCSopkgh53WdW/s1600/IMG_20180415_140010.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi52E3gw_hFkiE2UHhmiYU9irmg2Ms2Zjvgl9PGhvjLQ5yAYdNrSmm3HdAWRmJaZn16VxShF48F9jiG7DJwIqzNBhDPWifxulgv5BVTteKaDe9kodih7KpRBq-1gxgWqXuJCSopkgh53WdW/s400/IMG_20180415_140010.jpg" width="300" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">I know what you are thinking. What could go wrong?
Other than EVERYTHING. But you would be wrong. It was stealthy, comfortable, and
totally stress reducing. Indeed, my maiden voyage was going so well that at one
point on the trail I thought I was in a dreamy fairy tale. Running into Rapunzel—yes
that Rapunzel, the one with the long hair—will do that to you. Surreal doesn’t
begin to describe the experience. (And yes, I did not miss the opportunity to
make a lame joke about how long it took to wash her tresses.)<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">But minutes after our brief encounter, things turned,
ahem, hairy. I had to go. Worse, my urgency situation had become rather, er,
tangled. I had tucked the tubing deep into my shorts and extracting it meant
some rather noticeable (and panicked) hunting in the groin area. Worse, I had
just pulled into the MOST public section of the trail. On arguably the NICEST
Sunday of the year. Lordy. Bikers, joggers, walkers, dog walkers, picnickers,
kids, grandkids, great grandkids, people wandering aimlessly in my immediate
vicinity for no discernable reason whatsoever, the works. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Deep breath, Dave. The now-unkinked tube is rather
hidden, Dave. No one is looking, Dave, especially with you looking totally nonchalant
drinking out of your water bottle, which would explain any puddling. Dave, just
channel the theme song from another fairy tale, Frozen. Let it go, let it go, can’t
hold it back anymore, let it go. Sing with me now, Dave, you know the lyrics.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-vHdsWucE3g7nFOoEbvLlmjc8i-rdXigUXFA_birZ54JzwgVi7zBboq39t1Jp-WJ9ETT40aiuZntje4SMgbfKvxnrXCkSbPhEM2i2HEIsX9GP4dNEYLqyi5uNTPFk8zqqm1z6LcUAdnvH/s1600/IMG_20180415_135010.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1511" data-original-width="1600" height="302" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-vHdsWucE3g7nFOoEbvLlmjc8i-rdXigUXFA_birZ54JzwgVi7zBboq39t1Jp-WJ9ETT40aiuZntje4SMgbfKvxnrXCkSbPhEM2i2HEIsX9GP4dNEYLqyi5uNTPFk8zqqm1z6LcUAdnvH/s320/IMG_20180415_135010.jpg" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Okay, it was a good idea in theory. Stage fright, performance
anxiety, tinkle trepidation, call it what it you want. “It looks like you
spilled a tiny bit of your Caprisun after you tried to jam in the straw and it
broke.” Laura was unimpressed with my efforts and was tired of waiting for the
crowds to dissipate given that it was midafternoon and hours from nightfall, so
my maiden voyage ended with only limited success.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">I’ll try again. I’ll keep
adapting. When you have a disease like multiple sclerosis, you have to keep
adapting, coming up with new solutions when old ones no longer work. That’s
life with a disease. But if you see me pulled off on the side of the bike trail
sipping water and looking forlornly into the distance as if I was trying to
remember the words to an Idina Menzel song, maaaybe don’t stop to say hi.</span>Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com6tag:blogger.com,1999:blog-2838498765761167784.post-51865424455268351922018-03-17T11:53:00.001-06:002018-03-17T11:53:21.689-06:00When Life with MS Gets Heavy<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq9A8W5wOSrlKiebXljthFuVa8KYnTwRqHt1PX7_BJXzPs1kmlPqFx_8VgMeMZhwzAMJuyVRW3K-ZFX29c27KyhXDL6oN0Cv8UudhTnZ5mPmgiqXxvEk2o4tQYUGQkofRAZHeE-wD9yGcO/s1600/Album+Stockholm+Beer+Jakob+SAS+Europe_06+08+13_0686.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1451" data-original-width="1600" height="290" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq9A8W5wOSrlKiebXljthFuVa8KYnTwRqHt1PX7_BJXzPs1kmlPqFx_8VgMeMZhwzAMJuyVRW3K-ZFX29c27KyhXDL6oN0Cv8UudhTnZ5mPmgiqXxvEk2o4tQYUGQkofRAZHeE-wD9yGcO/s320/Album+Stockholm+Beer+Jakob+SAS+Europe_06+08+13_0686.JPG" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">This isn’t a blog post for newbies. Or for those who
don’t want to be reminded about what multiple sclerosis can do to our bodies. Or
for those who want a typical Dave happy-go-lucky essay that will make you smile
and escape and maybe make you laugh out loud. No, it’s not that. (I can hear the hissing disappointment now.) But after I read a reply to a post I made on
Facebook the other day, what I am writing needs to be said. Sorry.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Recently a newer MS drug, Zinbryta, was voluntarily
<a href="https://www.facebook.com/ActiveMSers/posts/1006011179548178" target="_blank">pulled off the market</a> due to serious safety concerns. The response from some in
the MS community was predictable. “Exactly why I don't take any of the MS drugs.”
Another chimed in. “This is the problem with all of these drugs.” And so on,
and so on. One even wrote that her husband got a brain infection (from another
drug, apparently one of the 16 worldwide who tragically suffered that fate),
and proceeded to warn everyone to be VERY SCARED about MS medications.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Life has risks. Jesus, just stepping out your front
door has risks. You could trip over the step, lightning could strike you, a car
could careen into you, and then a power pole could be felled by beavers and crush
you. Or you could narrowly avoid a power pole felled by beavers only to step on
the resulting live wire and get shocked to death while thinking, Whew, lucky
that power pole didn’t hit me—stupid beavers.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Likewise, all drugs have potentially serious side
effects. All drugs. <a href="https://www.everydayhealth.com/drugs/multivitamin" target="_blank">As do vitamins</a>. Yeah, vitamins. As do dietary supplements. Indeed,
the New England Journal of Medicine reports that <a href="http://www.nejm.org/doi/full/10.1056/NEJMsa1504267" target="_blank">adverse events from supplements</a> are responsible for an average of about 23,000 emergency department
visits per year. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq8y1E8EnPymKP243Kug9gC60Ef0l91kte0CViSolQXhDRgrGzWqDLizd1vxVq0JF0BmojIANN3iXnuyhD14HRcenh54q1bbthM2MU63Oa-aZHWNpQ1H8JiCq_frz_-KgSgZ1KJZheC6_M/s1600/_04+14+14_1853.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1041" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq8y1E8EnPymKP243Kug9gC60Ef0l91kte0CViSolQXhDRgrGzWqDLizd1vxVq0JF0BmojIANN3iXnuyhD14HRcenh54q1bbthM2MU63Oa-aZHWNpQ1H8JiCq_frz_-KgSgZ1KJZheC6_M/s320/_04+14+14_1853.JPG" width="208" /></a><span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">But “pick your poison” anecdotes about MS drugs and
their potential side effects, no matter how rare or mild, somehow often trump and
subsequently bury all benefits these drugs can deliver to people with MS. And
that’s a big problem. Because the potential side effects from our shared
disease can be devastating. And this is where it gets heavy. I’ve lost friends
to this disease. And I am powerless to help my friends who have enormous
challenges daily, hourly. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Recently, Jacob told me about the last meal he ever
ate—he now can only taste food with his tongue. He can’t swallow. Or walk. Or
use his arms. Or talk. He has a four-year-old daughter, an amazing wife, daily
caregivers, and a <a href="https://twitter.com/JakobVendle" target="_blank">streak of stubborn</a> like my own. Just five years ago we were
laughing and sharing a pint (top photo). And now. Side effects from drugs didn’t make him
like this, MS did. The same goes for my blogger buds Marc (<a href="http://www.wheelchairkamikaze.com/" target="_blank">Wheelchair Kamikaze</a>)
and Nicole (<a href="http://www.mynewnormals.com/" target="_blank">My New Normals</a>), and too many friends I’ve made on ActiveMSers. For
too many people I care about, every day is climbing a mountain. Every. Day. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">And sometimes, sadly, those mountains get too steep,
as this deeply personal and touching story, <a href="https://www.bbc.co.uk/programmes/b09snwmr" target="_blank">An Instinct for Kindness by Chris Larner</a> on BBC Radio (link expires March 30,
2018) relays about an MSer’s final journey as told by her former husband. It’s
crushing, disturbing, and eye opening. Allyson's MS challenges are not uncommon (creeping
disability) and her attempted solutions are not uncommon (drugs, diets,
magnets, anything). She finally makes the decision to go to Switzerland,
and I can’t blame her.<o:p></o:p></span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipH5xAKDiLucQj-o6g77mIdmT2EBwcdhErnf05MOwJSt2jp_OGv-WiiHESasHnlhfXKUITet5u69VcnGB2gn0TlRQPfFTOFiLn_XTIF5M72RQJmjK3kwzlYyxdbFV2Ycr6QOe7g3g9Kxpj/s1600/BBC+MS.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="362" data-original-width="547" height="211" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipH5xAKDiLucQj-o6g77mIdmT2EBwcdhErnf05MOwJSt2jp_OGv-WiiHESasHnlhfXKUITet5u69VcnGB2gn0TlRQPfFTOFiLn_XTIF5M72RQJmjK3kwzlYyxdbFV2Ycr6QOe7g3g9Kxpj/s320/BBC+MS.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An Instinct for Kindness on BBC Radio</td></tr>
</tbody></table>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">Her passing, and the mountains looming before friends, might make you feel hopeless to the challenges this disease presents. But wait. Through their stories and
struggles, they might be able to help you. Help you not to underestimate MS. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">It’s easy to hold on to the idea that the MS you
have isn’t going to affect you like it affects others. (That might ultimately
be true.) And thinking that way is not just you, and it’s not just people with
MS. That trap is set for anyone with health issues, even Steve Jobs, who many
considered a genius. He thought that same way when he avoided traditional treatment
for his cancer for nearly a year.</span> <span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">That’s human. Unfortunately, that’s
also hubris.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%;">There is no question bad shit could still go down even
if you do treat your MS with the drugs that are available. Yes, there is a
chance the drugs themselves could harm you, too—don’t be blind to that. But far
more likely: it’s going to be the disease that wreaks the most havoc. Take that
seriously. And also take seriously that this disease is most treatable in its
early stages, not when it is progressive and rumbling like a runaway train.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif; font-size: 12.0pt; line-height: 107%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">I am not trying to scare
you. Really, I’m not. I just don’t want you to conflate the risks of a taking a
disease modifying therapy with the risks of not taking one. To fall prey to the
idea that taking any of the current MS drugs is worse than the disease itself. For
the love of God, no. Just, no. They are not even remotely the same, and this <a href="http://clinicalevidence.bmj.com/x/set/static/ebm/practice/807152.html" target="_blank">general guide on medical risk</a> tries to explain that. And if that sinks in today, don’t
thank me. Thank Allyson, Jakob, Marc, Nicole and, to borrow a phrase from Marc,
the other incredible souls with this disease who inspire others.</span>Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com37tag:blogger.com,1999:blog-2838498765761167784.post-2393755602564512532018-02-15T15:40:00.001-07:002019-09-12T09:00:09.764-06:00Ambushing Researchers<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ1ZwkTecIiSmWjw_2fh3Kg5vpaABTMx6mqKZblHMirq82yH3pPU3yj0PgC2nsDFxx71ErUAIVcaXE8rZzVUneXTDdk3TKgrvdbOkhiXpZh5y0bumM1uhBCVMp8OZXJZb8dRLi1CeKmOoq/s1600/IMG_20180203_081224_032.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ1ZwkTecIiSmWjw_2fh3Kg5vpaABTMx6mqKZblHMirq82yH3pPU3yj0PgC2nsDFxx71ErUAIVcaXE8rZzVUneXTDdk3TKgrvdbOkhiXpZh5y0bumM1uhBCVMp8OZXJZb8dRLi1CeKmOoq/s320/IMG_20180203_081224_032.jpg" width="320" /></a></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">I’ve been running ActiveMSers for a dozen years
now, and while I’ve been to many MS summits and events, I’d never been to a
full-on research conference. That all changed with a recent visit to San Diego
where ACTRIMS, the Americas Committee for Treatment and Research in Multiple
Sclerosis, was being held. It was as advertised: some 1,000 acclaimed MS
researchers and clinicians at the top of their game. A restaurant nearby that has a wall with some 1,000 piranha skulls that was just too cool not to take a picture of and stick in this blog. And a dude named Dave. Oh
gawd.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Now I didn’t get here because researchers were eager
to have a rabble-rousing amateur comedian/MSer harassing them. No, that was
Actelion, a pharmaceutical company—recently acquired by Janssen—preparing to
enter the MS space with a novel combination treatment (full disclosure: they
sponsored my trip and provided a small honorarium). They brought out me and a
handful of other well-known MS advocates to pick our brains and get input on
their newly launched clinical trial, POINT. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7m4xvR9z6xZMhTKG3yw3tn2nKkehz0iOiADpi4n9fnwm47l9oOnBDjqC747OQj2oTcp6KmJ9sTibfU9OgUj6cbwQXrfkpSmhbjA4lo68D5cmUHoOCcjimabaon55rGRonMkdFA1E60pOr/s1600/Actelion+ACTRIMS.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1520" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7m4xvR9z6xZMhTKG3yw3tn2nKkehz0iOiADpi4n9fnwm47l9oOnBDjqC747OQj2oTcp6KmJ9sTibfU9OgUj6cbwQXrfkpSmhbjA4lo68D5cmUHoOCcjimabaon55rGRonMkdFA1E60pOr/s320/Actelion+ACTRIMS.jpeg" width="304" /></a><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Without going into great detail—because, well, if
I told you, I’d have to, you know—POINT is a placebo-controlled Phase 3
clinical trial looking at adding on the oral drug ponesimod to patients
currently taking Tecfidera. Since I am not relapse remitting and don’t take
Tec, I have no skin in this game. But a month ago by chance (before Actelion
even talked to me), I was chatting with my neuro, himself a renown MS
researcher, about any exciting MS research on the near horizon. And he
mentioned this study specifically. He was that excited about its prospects and
the potential power of this combination therapy in MS. So for Tecfidera users
interested in furthering research trials, this may be a treatment that could
supercharge your MS therapy. <a href="https://clinicaltrials.gov/ct2/show/NCT02907177" target="_blank">Details and eligibility criteria are here</a>.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">While Actelion had the “pleasure” of experiencing
my humor for hours on end, researchers were not left totally in the lurch, in
some vast, empty, Dave-free void. I made sure of that fact the moment my Uber
pulled up to the hotel where the meeting was being held, when I ran into a
colleague and leading researcher from iConquerMS who recognized me immediately.
(An aside, I volunteer for iConquerMS and they are the leading patient-powered MS
research network in the world. We need your participation in critical patient
surveys to uncover patterns that could lead to a cure for MS. <a href="https://www.iconquerms.org/" target="_blank">Here’s how you can help</a>.)<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Then, using my honed inner radar and expert
intuition, I skipped checking in and headed straight into the unmistakable den
of MS researchers preparing for an intense, 3-day conference: the bar. My, how
convenient, since a beverage sounded good to me, too. But I made a critical
error. My wheelchair lacks a cup holder. I was left with a Sophie’s Choice. Sip
a Manhattan and Tweet about how I almost met world-renown researchers. Or forgo
the beverage and accost every table, reminding each and everyone involved in MS
research to get a move on and cure this thing already.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">By the time I was finished making my rounds, it
was well past midnight, I hadn’t gotten up to my room yet (!!!), and I was darn
thirsty. But I learned <i style="mso-bidi-font-style: normal;">a lot</i> a lot.
Too much to put in a little blog post. My biggest takeaway was the passion and surprising
giddiness about the future of multiple sclerosis research. To a fault, all
accosted were not only happy to talk to me (as if they had a choice), but also
genuinely excited about the progress, and I’m pretty sure it wasn’t the liquor
talking. I got the honest sense that this isn’t just a paycheck to them, and
many had deeply personal stories about how MS has affected their lives, their
families.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">When I asked one researcher what message I should
take back to my readers, she looked at me with a dead seriousness: “There is
hope. Tell them there really, <i>really </i>is hope. I see it. I absolutely see it.”<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_avebBWX96trM9WwJggnjc1kpJEf-A6YnCeJLiGWtlqhIATxdAveSer-XColgXHQQw6-tkwGWDqBGdYmEeAyxquoHCAU1s8M_KEaUwZNCrY447u2lKDEn1mso7jf-2p2eRjkFBr2vLMAB/s1600/ACTRIMS.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1086" data-original-width="1600" height="217" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_avebBWX96trM9WwJggnjc1kpJEf-A6YnCeJLiGWtlqhIATxdAveSer-XColgXHQQw6-tkwGWDqBGdYmEeAyxquoHCAU1s8M_KEaUwZNCrY447u2lKDEn1mso7jf-2p2eRjkFBr2vLMAB/s320/ACTRIMS.jpg" width="320" /></a><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">I could tell you about the conference and some of
the interesting talks (including one about HSCT and the trial I participated in
specifically). I could tell you about randomly rolling up to people to pick
their brains while I conveniently filled them in on ActiveMSers. And I could
tell you about how I even harassed one of the keynote speakers moments before
his big lecture. (“Boy, I would be hate to be the guy talking to a crowd this
huuuge—oh wait, that’s going to be YOU. Oh, jeeze, never mind, you are going to
slay. Don’t be nervous.”)<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">But I just want to tell you that in our world of
multiple sclerosis there is hope. And I saw it firsthand.<o:p></o:p></span></div>
Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com4tag:blogger.com,1999:blog-2838498765761167784.post-85577937350104257332018-01-08T10:40:00.000-07:002018-01-08T10:40:16.904-07:00Sick, With MS<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWXqSx2s057bNJtL-pP-fPPmDdfhC2faBcho326nxTKVlB3-xemnO0knkaVq8f6k0lmDxE9xcPJHtZ8ASHR_FebZRQV68VugUqPifOQFfQw-4gyT25Mhc2uWPCy84_ljl0wwGZATQOXxUL/s1600/IMG_20180105_140244.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWXqSx2s057bNJtL-pP-fPPmDdfhC2faBcho326nxTKVlB3-xemnO0knkaVq8f6k0lmDxE9xcPJHtZ8ASHR_FebZRQV68VugUqPifOQFfQw-4gyT25Mhc2uWPCy84_ljl0wwGZATQOXxUL/s320/IMG_20180105_140244.jpg" width="240" /></a></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">I’m sick, with multiple sclerosis. The comma is
intentional. I have MS and I have a cold. Typing is no fun, sitting up is no
fun, and trying to be funny is no fun. Fortunately, according to Laura, I don’t
have to try to be funny. I just wake up that way with a cowlick. (An aside,
when I was younger I used to warn my haircutter that I had colic, which puzzled
the hell out of them when they started to cut this teenager’s hair. But that’s
how my grandma pronounced “cowlick,” and I didn’t know any better.)<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">The problem with getting sick when you have MS is
that it gets the immune system revving quickly into redline territory. The flu?
Let’s put that into the Fight Club category. The first rule: you don’t talk
about it. Hell, these days I can’t even think about it. When I got the flu shot
a few months ago—which apparently is only 10 percent effective this season—I
could not move for six hours (kinda scary) and was down for nearly a day. The
real flu? We’re talking ambulance, ER, and a weeklong hospital stay. So let’s
not talk about that, shall we?<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">For me, temperature is everything. My body freaks
out like that <a href="https://www.youtube.com/watch?v=ZbV5hn_ET0U">young kid who discovered that Darth Vader was Luke’s father</a>. Or
that baby who lost it over a monkey toy. <a href="https://www.youtube.com/watch?v=wPi4HTtqBEQ">Lost. It.</a> So the other day, when I
felt my cold coming on and my muscles starting to stiffen, I began to, well,
FREAK OUT. So I got on the horn asap with primary care’s nurse. This is
basically how it went.<o:p></o:p></span></div>
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<blockquote class="tr_bq">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Me:</b> My wife is sick and I think I might be getting
sick. And I have MS. My body is starting to rebel.</span> </blockquote>
<blockquote class="tr_bq">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"></span><span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Nurse:</b> Okay, describe your symptoms.</span> </blockquote>
<blockquote class="tr_bq">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"></span><span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Me:</b> I have a slight cough and my temperature went
up from 97 to 98.6 degrees.</span></blockquote>
<blockquote class="tr_bq">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"> </span><span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Nurse:</b> Go on.</span> </blockquote>
<blockquote class="tr_bq">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"></span><span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Me:</b> No, that’s all. (Muffled cough.) A cough, like
that. No phlegm or anything, just a cough.</span> </blockquote>
<blockquote class="tr_bq">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"> </span><span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Nurse:</b> Well, I can’t triage you, as these
symptoms, well, I can’t even input them into my system. A mild cough and normal
temperature fall out of that range, sir.</span></blockquote>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2Fk9TS3X4VmWvvLRVqeLu7zT7alO3xOFitXPPTXWD_RaaEBlPooyMIGFTXCzULVxXl4LqAPkFATJAoUBp6FkZkLSs-Xw8h0s1wVTzqcFB7waCzS8HJDlpFk7eBnUKJNtobBvmaGPMLoUi/s1600/Houston+SCT+159.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2Fk9TS3X4VmWvvLRVqeLu7zT7alO3xOFitXPPTXWD_RaaEBlPooyMIGFTXCzULVxXl4LqAPkFATJAoUBp6FkZkLSs-Xw8h0s1wVTzqcFB7waCzS8HJDlpFk7eBnUKJNtobBvmaGPMLoUi/s320/Houston+SCT+159.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With a bonkers flu season, masks should be mandatory.</td></tr>
</tbody></table>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">As I was talking to the nurse, I realized what an
idiot I sounded like. I certainly was going to be a topic of conversation at
Happy Hour that night. All I could do was wait for the hammer to fall. Or the
Dave to fall. Just a degree and a half rise in body temperature—probably
unnoticeable in most humans—meant I needed Laura’s help to get off the couch, the
bed, the toilet. A comfort height toilet with grab bars, no less! We brought in
my wheelchair from the garage, unboxed the bedside commode I purchased last
year for just such an occasion (oh joy), and waited. One more tick up in
temperature and I’d be joking with the EMTs as they lugged my lifeless body
into the awaiting ambulance. And by lifeless, I mean rigor mortis. My
spasticity already was raging so badly my legs took huge amounts of effort to
bend. If my temp went over 100 degrees, I might be mistaken for a piece a
plywood, a potentially disastrous combination if I was living in Florida during
hurricane preparations. But I suppose getting boarded over a window might
distract me from my illness, a bonus. <o:p></o:p></span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHaoeCUSwmZnCdg6o1c6LECCdh-eSnbTY1STc2ekgXEMKcR3DK_YmIaRv1weGnXngn76pcuPa6KiJK4xep14J-xN6POXB5uPZrde7fmE-MQPYrWp2M2By4NaESWdXW_FaIQfXlFZ-9OCKa/s1600/DSC05128.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHaoeCUSwmZnCdg6o1c6LECCdh-eSnbTY1STc2ekgXEMKcR3DK_YmIaRv1weGnXngn76pcuPa6KiJK4xep14J-xN6POXB5uPZrde7fmE-MQPYrWp2M2By4NaESWdXW_FaIQfXlFZ-9OCKa/s320/DSC05128.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Technically squawking (not chirping) cranes.</td></tr>
</tbody></table>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">Six days after I started writing this blog (do the
time-lapse, fast forward thing in your head), thankfully, things have simmered
down. When I checked my temperature yesterday morning it was a pleasant 96.8,
the birds were chirping, and a light exercise session with cardio and stretching was in store. Despite
temperatures peaking at a blistering 99.3 degrees, I never resorted to the
portable potty, which I thought at the time would make Laura happy. But in
retrospect, that stubbornness was a hollow victory. Two hard falls early on meant
using my wheelchair full time, and now I plan to see the doc to make sure I
didn’t mess up my knee (I’m optimistic I didn’t, as there is no swelling or
pain).<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">We all hate getting sick. But getting sick with an
autoimmune disease is a different beast. This is how I handled it. Better than
piss-poor, but definitely not that well. How do you all cope? Any survival
tricks? Post them below! (But please, remember the Fight Club rule and avoid
using the three-letter F word. Just saying you were “sick” is fine.) <o:p></o:p></span></div>
Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com34tag:blogger.com,1999:blog-2838498765761167784.post-6913253577890442302017-12-05T11:30:00.001-07:002019-09-16T10:18:47.410-06:00This Is Not Spinal Tap<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih4Lgp4XWGRLQJOU6aRoSnXZ9HAlRVv9hLRIe3UhUA1X9aHAD-aZgx2LCxIV2ziuqHShNS45fSgGUsuX-v8B084swRT-qE-rEn0cph5xhHWnweicdX1Ux3o4tLHEH9nQuxAgf2DUELd4di/s1600/IMG_20171202_170510.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1169" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih4Lgp4XWGRLQJOU6aRoSnXZ9HAlRVv9hLRIe3UhUA1X9aHAD-aZgx2LCxIV2ziuqHShNS45fSgGUsuX-v8B084swRT-qE-rEn0cph5xhHWnweicdX1Ux3o4tLHEH9nQuxAgf2DUELd4di/s320/IMG_20171202_170510.jpg" width="233" /></a></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Getting diagnosed with multiple sclerosis usually takes
time. For some, it takes years, even decades. For others it might take months
waiting for signs of progression before a neurologist will commit to a
diagnosis and start treatment. But recent research has found that the earlier
treatment is started—as of this writing there are 13 approved disease-modifying
treatments in the US for MS—the better. “Real-world data … confirm the
effectiveness of the early treatment strategy in delaying the accumulation of
irreversible disability in RRMS patients,” said the <a href="http://forums.activemsers.org/showthread.php?t=2558" target="_blank">October 2017 study</a>.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Yes, “irreversible disability” is as bad as it
sounds. You don’t want that. You really don’t want that. But getting in the way
of prompt treatment is the fuzziness of an MS diagnosis, a methodical and
laborious process of elimination.<o:p></o:p></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrm7to34-tFR6wDj9ksY_R6lJ610ruhCqaqhbOoC4O73GU-mbsqc4JQ9imx0rKO_7PRRKGLDwgXSHQt9u3G7P8i30MFSh-TtB_RrjdaYqlosrxtSu3Rg9oo4s5Ggr4mtvgPJHXcS4-cxdJ/s1600/IQuity_logo_FINAL_noTag_TM_opt.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="194" data-original-width="500" height="77" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrm7to34-tFR6wDj9ksY_R6lJ610ruhCqaqhbOoC4O73GU-mbsqc4JQ9imx0rKO_7PRRKGLDwgXSHQt9u3G7P8i30MFSh-TtB_RrjdaYqlosrxtSu3Rg9oo4s5Ggr4mtvgPJHXcS4-cxdJ/s200/IQuity_logo_FINAL_noTag_TM_opt.png" width="200" /></a></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">So last year when I heard <a href="https://iquity.com/" target="_blank">IQuity</a> (pronounced
IQ-itty, rhymes with equity), a science technology company out of Nashville, TN, had developed a reliable
blood test for multiple sclerosis, I was stoked … and suspect. There are many “blood
test” companies out there that will diagnose you with whatever you want, just
without scientific backing (“our Lyme’s Disease test is so sensitive it could
detect the disease in a caterpillar”). Great! But if no medical professional
recognizes the results, what good does it do you?<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Fast forward a year. <o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Multiple Sclerosis Blood Test</b></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">IQuity’s RNA blood test, which relies on a number
of markers and sophisticated algorithms, reports a 90+ percent accuracy rate in
detecting likely MS, considerably more accurate than a standard lumbar puncture
that looks for the presence of oligoclonal banding in spinal fluid. The test,
<a href="https://iquity.com/technology/iqisolate-tests/" target="_blank">IsolateMS</a>, took over 9 years to develop using blood donated by scores of those
with MS (including <a href="http://www.iconquerms.org/" target="_blank">iConquerMS</a> volunteers). <o:p></o:p></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlm5RfZMh56VOkchw2glZUjjJABD34sGT9HosibxMML6liFc3gkRcPORwzgeWqRZelFfciN5Xrg7457Ob4zDyP2fxzfice6BZ-zJtYBx-VDRVvHkR3JkusGPwYV9CcZlw3WSNIK3L7gfBU/s1600/IMG_20171202_134813.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1022" data-original-width="1600" height="203" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlm5RfZMh56VOkchw2glZUjjJABD34sGT9HosibxMML6liFc3gkRcPORwzgeWqRZelFfciN5Xrg7457Ob4zDyP2fxzfice6BZ-zJtYBx-VDRVvHkR3JkusGPwYV9CcZlw3WSNIK3L7gfBU/s320/IMG_20171202_134813.jpg" width="320" /></a></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">To help get the word out, IQuity sponsored a trip
to Nashville this past weekend for ten MS bloggers including me. You’ll likely recognize
many of the names, some dear friends of mine and some I’ve been waiting years
to meet in person: </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt; line-height: 115%;">Caroline Craven (<a href="http://www.girlwithms.com/">www.GirlWithMS.com</a>), </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt; line-height: 115%;">Kathy
Reagan Young (<a href="http://www.fumsnow.com/">www.FUMSnow.com</a>), </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt; line-height: 115%;">Kim
Standard (<a href="http://www.stuffcouldalwaysbeworse.blogspot.com/">www.StuffCouldAlwaysBeWorse.blogspot.com</a>), </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt; line-height: 115%;">Cat Stappas (<a href="http://www.itsonlyabruise.com/">www.ItsOnlyABruise.com</a>), </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt; line-height: 115%;">Beth Prystowsky (<a href="http://www.moderndayms.com/">www.ModernDayMS.com</a>), </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt; line-height: 115%;">Stephanie Buxhoeveden (<a href="http://www.justkeepsmyelin.com/">www.JustKeepSmyelin.com</a>), </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt; line-height: 115%;">Matt Cavallo (<a href="http://www.mattcavallo.com/">www.MattCavallo.com</a>), </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 16px;">Dan and Jennifer Digmann (</span><a href="http://www.danandjenniferdigmann.com/" style="font-family: "Trebuchet MS", sans-serif; font-size: 16px;">www.DanandJenniferDigmann.com</a><span style="font-family: "trebuchet ms" , sans-serif; font-size: 16px;">), </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt;">and
Laura Kolaczkowski (</span><a href="http://www.insidemystory.com/" style="font-family: "Trebuchet MS", sans-serif; font-size: 12pt;">www.insidemystory.com</a><span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt;">). </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; font-size: 12pt;">(Today, I’m proud to say, they are all my buds.)</span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Now IQuity could have put on a dog and pony show
in Music City, but instead CEO Dr. Chase Spurlock made a short presentation,
answered questions, and had MS experts—from neurologists to physical
therapists—speak to the future of this disease.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv5RgjUvpNmIlG6M2gvBZ2-ObQoZ8tRnDjXbL5bwsW-ptZ69EzQns3CX6iHBKfshM9k435G7QfELPTFK3ypysUcqRFCz5B9B0fB246LYfCjBTpAIDm-NkMA2F-JI2YVM-UaIKYJ34mEaLz/s1600/IMG_20171202_191027.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1554" data-original-width="1600" height="193" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv5RgjUvpNmIlG6M2gvBZ2-ObQoZ8tRnDjXbL5bwsW-ptZ69EzQns3CX6iHBKfshM9k435G7QfELPTFK3ypysUcqRFCz5B9B0fB246LYfCjBTpAIDm-NkMA2F-JI2YVM-UaIKYJ34mEaLz/s200/IMG_20171202_191027.jpg" width="200" /></a><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Surprisingly, the take-away was not about blood
tests and markers, but about the importance of exercise and its potentially neuroprotective
role, particularly in hard-to-treat progressive MS. Indeed, I got so excited—as
did my bladder—that I had to briefly leave the presentation on more than one occasion,
always 10 minutes before a break, which naturally became a running joke. “And in
conclusion, that’s why exercise is so critical in MS… welcome back, Dave.” <o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Diagnosing Multiple Sclerosis</b></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Diagnosing this disease will never be 100% clear.
But IsolateMS—in addition to the clinical exam, MRI, and other tests—could
present neurologists with another valuable diagnostic tool and one that is less
invasive (or, let’s be honest, freaky) than a spinal tap to look for banding. <o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Speaking of spinal taps and bands, when it comes
to more accurately diagnosing MS, one might say IQuity has turned it up to 11. If
you don’t get the reference, the conversation with Nigel and Marty from This Is
Spinal Tap is below. And okay, maybe IQuity has a touch more credibility than Nigel,
but run with me here.<o:p></o:p></span></div>
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<blockquote class="tr_bq">
<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Nigel Tufnel</b>: The numbers all go to eleven. Look,
right across the board, eleven, eleven, eleven and... </span><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Marty DiBergi</b>: Oh, I see. And most amps go up to
ten? </span><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Nigel Tufnel</b>: Exactly. </span><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Marty DiBergi</b>: Does that mean it's louder? Is it
any louder? </span><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Nigel Tufnel</b>: Well, it's one louder, isn't it?
It's not ten. You see, most blokes, you know, will be playing at ten. You're on
ten here, all the way up, all the way up, all the way up, you're on ten on your
guitar. Where can you go from there? Where? </span><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Marty DiBergi</b>: I don't know. </span><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Nigel Tufnel</b>: Nowhere. Exactly. What we do is, if
we need that extra push over the cliff, you know what we do? </span><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Marty DiBergi</b>: Put it up to eleven. </span><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Nigel Tufnel</b>: Eleven. Exactly. One louder. </span><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Marty DiBergi</b>: Why don't you just make ten louder
and make ten be the top number and make that a little louder? </span><span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;"><b>Nigel Tufnel</b>: [pause] These go to eleven.</span></blockquote>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSYXAI_XphcpHPctfchwvGoN3e6CL-MjUHPbZPhaxwYFdlJPgGBhdtPYRiMTpxGDFBDezSvRzs_T6xawc9hr8spdzpGOmeZN2CVOaBYvI-a6oSH_uFcJFBqCDybAJV-gNiy0msgknJvSEg/s1600/spinal-amps_sq-173d7819533cc862a8d3192d2eae4442cbedd91c-s300-c85.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="300" data-original-width="300" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSYXAI_XphcpHPctfchwvGoN3e6CL-MjUHPbZPhaxwYFdlJPgGBhdtPYRiMTpxGDFBDezSvRzs_T6xawc9hr8spdzpGOmeZN2CVOaBYvI-a6oSH_uFcJFBqCDybAJV-gNiy0msgknJvSEg/s200/spinal-amps_sq-173d7819533cc862a8d3192d2eae4442cbedd91c-s300-c85.jpg" width="200" /></a></div>
<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">If IQuity has indeed turned
it up to 11, how then can our future brothers and sisters in MS limbo get this
test? (And, perhaps, one day you, as IQuity is working on another test to help
determine if a DMT is working.) Talk to your provider and neuro to let them
know it even exists. At this point, health insurance companies are reluctant to
pay for the test (currently over $1,000), but with enough interested voices,
that tide will change and IsolateMS will become part of the multiple sclerosis diagnosis
landscape. And, God willing, any mention of spinal taps and bands, at least when it comes to MS, will gradually
fade into distant memory.</span>Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com6tag:blogger.com,1999:blog-2838498765761167784.post-1263778511134513922017-11-03T11:57:00.000-06:002017-11-03T11:57:38.956-06:00Change of Plans<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdcihOy6zQqlSlude8Z3x_VlI9IGyt6qS-KMFpk_ZCjcwy-hB4FX8dZV_QGw7k5G14Aep-kVURpM-daD5_f2Yw_1il0qq16HS-9aLy_WXNES6gbdC-6C2EyraE5MXuUqOloSGOCHixbj6c/s1600/Plans3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1421" data-original-width="1504" height="302" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdcihOy6zQqlSlude8Z3x_VlI9IGyt6qS-KMFpk_ZCjcwy-hB4FX8dZV_QGw7k5G14Aep-kVURpM-daD5_f2Yw_1il0qq16HS-9aLy_WXNES6gbdC-6C2EyraE5MXuUqOloSGOCHixbj6c/s320/Plans3.jpg" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">After I sprinted face-first into a tree playing
kickball in 7th grade, a few things immediately ran through my twelve-year-old
brain. One, that friggin hurt. Two, maybe I shouldn’t have just lectured my
teammates to try harder to catch pop flies in my tree-littered front yard. And
three, my future as an international spy was over. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">As blood from my lower lip was staining my shirt
at an alarming pace, my mom tried to calm me down. But it’s hard to calm down
when your life’s career plan just careened off a cliff. (And have you noticed
that one always “careens off a cliff” never off a small ledge into a field of flowering
poppies.) The hole in my lower lip needed stiches, multiple stitches. And as
the doc was tugging needle and thread through my puffy face, he announced that,
yes, it would leave a mark. A scar. I was distraught.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">Based on my extensive middle-school knowledge of foreign
espionage, nothing was worse for a future spy than a tell-tale, identifying
scar on your face. Nothing. Granted, growing facial hair, aka a beard, would
have solved the issue rather quickly, but facial hair was not yet on my radar
at 12. Spying was. And, just as suddenly, was not. My future career opportunities,
with the gnarly scar and all, now appeared to be winnowed to driving a school
bus part-time or playing a masked cartoon character at Disneyland. Maybe Disney
World.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">I was mourning the loss of a future I thought for
certain I was supposed to have, not unlike what happens when you get diagnosed
with a (currently) incurable disease like multiple sclerosis. Everything gets
fuzzy, hazy. Certainties become maybes, and maybes become wishful thinking.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDHhHaRRjqgMq1XS4Gqc1a2KlCrRM50ypkv6IubpzyI4b4GEeWP39w30nPg7bpUV8qHr2cfDSfyJDFQDVnMAgasjsDc2uVGdeLBz5wYGPn8MnB3o_B3umHa2PpwperEuxBz016My1HCRaz/s1600/Plans1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="877" data-original-width="964" height="291" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDHhHaRRjqgMq1XS4Gqc1a2KlCrRM50ypkv6IubpzyI4b4GEeWP39w30nPg7bpUV8qHr2cfDSfyJDFQDVnMAgasjsDc2uVGdeLBz5wYGPn8MnB3o_B3umHa2PpwperEuxBz016My1HCRaz/s320/Plans1.jpg" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">Before I got diagnosed with multiple sclerosis, I
had lots of plans, including one in particular: to snowboard until I was 80
years old. My favorite day of the year was the summer solstice, because that
meant winter was coming, and this was years before Game of Thrones. I was a
daily exerciser, not for my health, but to get ready for ski season. Working on
balance, endurance, strength, and explosiveness, my body was always prepared
when the flakes started to fall.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">Okay, so I only made it to age 40. No, that wasn’t
my plan—hell no. But plans change. In the game of life, plans always change. When
life doesn’t go to plan, and health issues usually aren’t planned, it’s easy to
wallow in sadness, frustration, fear, anger. There aren’t enough emoticons to
convey the feelings that rush you when getting diagnosed with a disease. Besides
it would max out your cell phone data package and drive your friends bonkers as
they try to decipher a string of facial expressions only a crack international
spy could decipher. Oh, the irony.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6g3SQlg5gCM3gpfMAF7Lb6ZA-n5djUjWFweaXTPOiu55r9BqRoE7Uv4zPuzU_QDSX13m7o-LQupI9Id2Yj04n-ybGEgPbGMs9Q8h5v0-T_fP7xlXEayQwfHe6bFcwNWlg-q-hbAXMkqpR/s1600/Plans2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1005" data-original-width="1600" height="201" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6g3SQlg5gCM3gpfMAF7Lb6ZA-n5djUjWFweaXTPOiu55r9BqRoE7Uv4zPuzU_QDSX13m7o-LQupI9Id2Yj04n-ybGEgPbGMs9Q8h5v0-T_fP7xlXEayQwfHe6bFcwNWlg-q-hbAXMkqpR/s320/Plans2.jpg" width="320" /></a></div>
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">So getting diagnosed with
MS (or insert your disease of choice here) means you have to draw up a new play
in the huddle, on the fly. So what? Zig left instead of right. No, it wasn’t
the original play call, but you can make it happen. Trust yourself and make it
happen. Just watch out for the dang trees when you run your new route.</span>Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com8tag:blogger.com,1999:blog-2838498765761167784.post-56079392245109068842017-10-04T16:12:00.000-06:002017-10-04T16:12:51.451-06:00Virtually Inaccessible<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWsmXeyNLz4bSbX2OYeFvMuWpkiVGy8GsY3hGgtlP0w0GAAqg2BOmGW1P80eLNoPpDj309TRjBmS6aNn0VeZ1IRXmhVW3GdJnjGmW1qor-RqcJJ21uxG-pu5Kj6R6PEpB_i_woUcAHMuhyphenhyphen/s1600/Postojna+Wiki.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="675" data-original-width="1200" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWsmXeyNLz4bSbX2OYeFvMuWpkiVGy8GsY3hGgtlP0w0GAAqg2BOmGW1P80eLNoPpDj309TRjBmS6aNn0VeZ1IRXmhVW3GdJnjGmW1qor-RqcJJ21uxG-pu5Kj6R6PEpB_i_woUcAHMuhyphenhyphen/s320/Postojna+Wiki.jpg" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">I should have been tipped off when our Slovenian
guide looked me at as if my head had just sprouted a glow-in-the-dark unicorn horn
studded with bedazzled rhinestones perfectly placed by a unicorn horn bedazzler
(as seen on TV, I’m guessing). <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">“Yes, the cave eez technically wheelchair accessible,”
she said, pronouncing each syllable of “technically” with intent. She tried to
illustrate the steepness of the path through Postojna Caves with her hand. Her
palm was a few degrees shy of vertical. Laura was thinking, clearly, it couldn’t
be that steep. After all, there were people on our tour who did not appear to
be mountaineers. Meanwhile, obviously, I was thinking one thing: game on.<o:p></o:p></span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEi8tFByHk3m7rMicrNvfQTg064TE2e4AyDT90Nk_ntE9R1xSkS9WoUXls-uxiqGQyGw5QCVcEh5FEdW35c4Z9HQb2d4O7c12paxt_Y_U2r1BL9kgmbLxWdGc7w0xfkLnoIyOyc2kbQsEx/s1600/WZ.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="768" data-original-width="956" height="257" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEi8tFByHk3m7rMicrNvfQTg064TE2e4AyDT90Nk_ntE9R1xSkS9WoUXls-uxiqGQyGw5QCVcEh5FEdW35c4Z9HQb2d4O7c12paxt_Y_U2r1BL9kgmbLxWdGc7w0xfkLnoIyOyc2kbQsEx/s320/WZ.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At least the train was accessible.</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">Postojna Caves, a vast karst system, is one of the
most popular tourist attractions in Slovenia. Tourists travel deep underground
by train 3.5 kilometers, about an 8-minute ride, before reaching the 1.5-kilometer
“accessible” walking trail. Their website boasts “wheelchair users friendly.”
Of course I’m friendly. This should have been a flag, color red. And if I had
bothered to vet the cave on TripAdvisor, I might have stumbled on the one-star
review by a fellow wheelchair user with the headline “virtually inaccessible
for handicapped.” Even so, my brain would have said, Virtually? So you’re sayin’
there’s a chance! Stupid, stupid, brain.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">Indeed, the cave train was accessible, and the eight
minutes were breathtaking as we zipped by stalactites, stalagmites, and all
those other cool things you see in caves. But the whole breathtaking part took
on an entirely new, literal meaning as we started our 1.5-km walk, er hike, er
climb. Picture the polar opposite of ADA accessibility, or the steepest path
one can walk without needing a rope. And a harness. Perhaps there was a reason
I didn’t see any other wheelchair users on the trail. Of the 37 million
tourists who have visited over the years, I imagine the total number of
wheelchair users attempting the walking trail could fit on one train car.<o:p></o:p></span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPhTS_ZFXAS7Jx1vURUrdqgt503DnkgGL_tpej3UfOwhjsGzVizbKPyghP4x03lwbcL849Nxf2ZLflYP1hjc3X65CLUy9wxPiSky_aSHHzmeF3CeZnIBxMfkcJRE4yvPSNpXAF3u7IhMrt/s1600/WP_20170526_019.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1024" data-original-width="577" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPhTS_ZFXAS7Jx1vURUrdqgt503DnkgGL_tpej3UfOwhjsGzVizbKPyghP4x03lwbcL849Nxf2ZLflYP1hjc3X65CLUy9wxPiSky_aSHHzmeF3CeZnIBxMfkcJRE4yvPSNpXAF3u7IhMrt/s320/WP_20170526_019.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lovely switchbacks.</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">As Laura and I chugged up the first incline, a few
things became immediately apparent. One, I would have to crank as hard I could.
Two, Laura would have to push as hard as she could. And three, once we had
momentum, other tourists better back the hell up because we were going to
steamroll them. This technique worked, barely, as we reached the apex of that
introductory hill, which exposed the full folly of our decision. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">Our path then went straight down. Before going
straight up again. And down again. Over and over for the next hour.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">I’m not sure which part was more terrifying. The
precipitous ups or the precipitous downs, where we both tried to keep the
wheelchair from skidding out of control, ramming the safety railing, and launching
me into a bed of very pointy stalagmites to meet my grisly doom like a James
Bond villain. <o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">Bug-eyed fellow tourists generously wanted to help
the guy in the wheelchair with the unicorn horn. Some wanted to help push,
others wanted to pull, while yet others took on the job of flagger, warning the
throngs ahead with waving arms. It was a full-on team effort involving tourists
from around the world. (I cannot tell you how many Japanese grandmothers we had
to shoosh from trying to assist.)<o:p></o:p></span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCxIC1ka4o7PVML1nDPl03Ff1Gly8FwHnj-c3PWb0FuaQaFcue_-09iiF-2FIFjBRyDgjjSUNE6kw1doKp8msw9ob0iLoaBJ0xEKuNeslHJLG0WMH8GlM0wzCmJ158SFHkv_XLoMNO76G0/s1600/WP_20170526_021.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="768" data-original-width="815" height="301" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCxIC1ka4o7PVML1nDPl03Ff1Gly8FwHnj-c3PWb0FuaQaFcue_-09iiF-2FIFjBRyDgjjSUNE6kw1doKp8msw9ob0iLoaBJ0xEKuNeslHJLG0WMH8GlM0wzCmJ158SFHkv_XLoMNO76G0/s320/WP_20170526_021.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ah, the exit! Way, way down there.</td></tr>
</tbody></table>
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">We survived, but barely. And
we sweat, a lot. It took maximum effort, indeed an Olympian effort, on both of
our parts to explore Postojna. But was it worth it? Hell yes. We all know that there
will be times when multiple sclerosis will have the upper hand, the final say,
in life’s grand adventures. We have to, begrudgingly, accept that. But even when
those MS hills appear impossibly steep, it doesn’t hurt to put on our unicorn
horns and try to keep exploring the best we can.</span><br />
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"><br /></span>
<i><span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">Top photo courtesy Wikipedia by </span><span style="font-family: "Trebuchet MS", sans-serif; font-size: 12pt;">Ivan Ivankovic from Dubrovnik, Croatia.</span></i><br />
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"><o:p></o:p></span></div>
Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com0tag:blogger.com,1999:blog-2838498765761167784.post-57768665616207248612017-09-12T09:54:00.000-06:002017-09-12T11:00:06.689-06:00Banish Cog Fog<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2SrMF7JsvsHknqIMzlRk04c6UeBRqvlv2G9AhOKlb3nhwDlww9E1ODc0-XHai4zWf607oWyGew0UxB0HUtx6NTqcxqWnAXC2qUZF1kS5JGVWOs7WwEyoBLlYymfXOcYuxl-Gtbkq5Uvjk/s1600/Game+Wind.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1599" data-original-width="1600" height="319" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2SrMF7JsvsHknqIMzlRk04c6UeBRqvlv2G9AhOKlb3nhwDlww9E1ODc0-XHai4zWf607oWyGew0UxB0HUtx6NTqcxqWnAXC2qUZF1kS5JGVWOs7WwEyoBLlYymfXOcYuxl-Gtbkq5Uvjk/s320/Game+Wind.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This MS news will knock you off your feet.</td></tr>
</tbody></table>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">By the end of this blog post, some of you are
really going to hate me. I won’t take it personally. After all, there is some
good news with the bad news. Sorta like hearing that you get free hot dogs
(yeah!) … but that you have to eat a dozen of them, buns and all, in ten
minutes. Clearly, if your name is not Joey Chestnut (his record is 70), you might
be in big trouble. And if you can manage to gag them all down, it’s gonna hurt
bigly.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Long story short, last month <a href="http://forums.activemsers.org/showthread.php?t=2501" target="_blank">more research was released investigating the benefits of high intensity interval training (HIIT) and multiple sclerosis</a>. In the randomized clinical trial, MS researchers pitted
high intensity cardio exercise (3x per week for 20 minutes with five 3-minute
exercise intervals at 80% of peak oxygen uptake) against a traditional exercise
program (5x per week for 30 minutes at a constant 65% effort).<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Some of the results were predictable. Both parties,
60 MS volunteers in total, saw “significant” benefit with executive functions,
even though the trial was only three weeks long. Fantastic! But then researchers
found that the benefits of the two exercise programs diverged dramatically.
Compared to conventional training, only HIIT “significantly improved verbal
memory” among participants.<o:p></o:p></span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir7gMgKnQFZOp0tyW1MzuTY61yZRt8JCkGDtNASj0NG4Igb1sRI3GbvUGVKG7NnVwMNFluzs2ts2mhuPt9sYkpe5FmMe6YS1wI79rFktoqLmn-M0z1hrsgFkzg9BexOI9_YnV6u1jdSVng/s1600/Game+Sweat+-+Crop.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="389" data-original-width="299" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir7gMgKnQFZOp0tyW1MzuTY61yZRt8JCkGDtNASj0NG4Igb1sRI3GbvUGVKG7NnVwMNFluzs2ts2mhuPt9sYkpe5FmMe6YS1wI79rFktoqLmn-M0z1hrsgFkzg9BexOI9_YnV6u1jdSVng/s320/Game+Sweat+-+Crop.JPG" width="245" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">You're gonna have to sweat.</td></tr>
</tbody></table>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">(Additionally, “secondary outcomes indicated
significant improvements in peak oxygen uptake—VO2-peak—and a significant
reduction in matrix metalloproteinases—MMP-2” also in the HIIT group only. I would
need to go to med school to find out exactly what this all means, but it sounds
hella promising even if I don’t know how to pronounce it.)<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">How many approved medications are out there to
improve cognitive performance in MS? Zero. How many dietary supplements have
been shown to aid cognition in MSers? Zero. How many types of exercise routines
have been shown—in study after study after study—to reduce cog fog in MS? One.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">And this is where the total suckage of this post
settles into focus. Brisk walking, cleaning your house, yoga, mowing your lawn,
striding on your elliptical, Sunday bike rides with your kids, leisurely laps
in the pool, even spirited bedroom escapades (go crazy, gang!) are all fine and
dandy for your health and your MS. Do these activities. But unless you are seriously
rocking the cardio, none of these efforts are going to significantly improve or
protect your cognitive function with this disease.<o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigj-PXV07j19-xIBGvip3OkbWzSJ_EWWkRONLI-hC_QS3uHd0eSSO12dQy2IlH2Ex8Ypcdq6VSGWX_aJ3rwT6FbgRy172LtCbPdbt1j4zn523NcDXgRFpr3W-hzY_7MBTA6RtUlNMeaF-u/s1600/Game_of_Thrones_title_card.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="197" data-original-width="350" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigj-PXV07j19-xIBGvip3OkbWzSJ_EWWkRONLI-hC_QS3uHd0eSSO12dQy2IlH2Ex8Ypcdq6VSGWX_aJ3rwT6FbgRy172LtCbPdbt1j4zn523NcDXgRFpr3W-hzY_7MBTA6RtUlNMeaF-u/s320/Game_of_Thrones_title_card.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Channel your favorite GOT bad ass.</td></tr>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">As most of you are aware, cognitive issues are
among the most disabling of all MS symptoms (along with fatigue, which
researchers have found may also decrease with HIIT, but that is for another
post). Problems with memory, attention, comprehension, reasoning, decision making,
and more can be devastating and not only can lead to a forced early retirement,
but also can affect relationships, the ability to drive safely, or the capacity
to follow all the characters and plotlines in Game of Thrones. (Okay, trying to
put all the pieces together in GOT is mostly hopeless no matter how well your
brain works…I just threw that in for a test.)<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Now before you charge forward and embark on a
serious HIIT routine, talk to your doctor or neuro first. Better yet, also see
a trainer and get hands-on instruction. When you do this, you need to do it
right. And know that it is not going to be easy, but at least each session is
going to be over with fast.<o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbibLqWYLkvP6R9rvENXwdtL9Wbvbeilz2qv0jC6LYnZtCiyE5EQBdRctnDpWHRBKrr-ND8zZo1vLWFQdfBYkcdFx3O9lYfJfOW9GvcW8-51MfWJ9kE5eEYhQWvwne7lHRYukABpGr_QZL/s1600/Game+Dunes+029+CC.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbibLqWYLkvP6R9rvENXwdtL9Wbvbeilz2qv0jC6LYnZtCiyE5EQBdRctnDpWHRBKrr-ND8zZo1vLWFQdfBYkcdFx3O9lYfJfOW9GvcW8-51MfWJ9kE5eEYhQWvwne7lHRYukABpGr_QZL/s320/Game+Dunes+029+CC.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jump in with abandon. No regrets.</td></tr>
</tbody></table>
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<span style="font-family: "trebuchet ms" , "sans-serif"; font-size: 12.0pt; line-height: 115%;">Keeping your brain healthy is a big deal. No, a
huge deal. Wait, wait, more of a HUGE FRIGGIN MEGA DEAL. And you have the power
to do something about it, a rarity with this disease when many of our arrows,
frustratingly, seem to fall just short. Take advantage of this opportunity. Don’t
delay. Jump in and get started. You and that magnificent brain of yours will
not regret it.<o:p></o:p></span></div>
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Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com17tag:blogger.com,1999:blog-2838498765761167784.post-84967863117798386292017-08-07T14:57:00.000-06:002017-08-07T14:57:42.884-06:00Stop Comparing<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9T7Ovw08zYnv-8PzN4EgMdrXz89LYoE7wy0gU92Z7KgmgMtBrmBYuOTAOshOUFHxGW4O2YwGVHSeCS7L8xCsWUMevxIoKMVCB6qkFPMUgD6gVCCCjs9OjTMr-3JTc17fAT_EjemYbvLzc/s1600/WP_20161001_003.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1065" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9T7Ovw08zYnv-8PzN4EgMdrXz89LYoE7wy0gU92Z7KgmgMtBrmBYuOTAOshOUFHxGW4O2YwGVHSeCS7L8xCsWUMevxIoKMVCB6qkFPMUgD6gVCCCjs9OjTMr-3JTc17fAT_EjemYbvLzc/s320/WP_20161001_003.jpg" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">The other day I was out cranking it on the bike trail.
It wasn’t an epic ride—the 20 mile mark still manages to elude me—but I put in
a solid 13 miles over a couple of hours, decently impressive on an arm trike in
90-degree heat. And then I ran into Beth. You know, <i>that</i> Beth.</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif; font-size: 12pt;">“Dave!” It was Beth Ulibarri, aka @MilesAndTrials,
aka Ironman Beth. She also happens to be a fellow active MSer, only with a bit
more emphasis on the “active” part. We all know of Beths, those absolute studs
in the MS world that defy the disease with an athletic prowess that impresses
even the pros (she has trained with our resident pro triathlete Kelly
Williamson).</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVKmFD52Ap4dL8mveRQbReB_twZ8iUY91gwLlUCbiBjmZ23j9a1-wW__gWln3UQstZDIlJxbQkouvzpg2u8mvJh5CDjAmgt-vluzDHUkCVYj48BvjIHt3NW0GyyrrMh0yIDLpCZzqifBgu/s1600/Beth.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="968" data-original-width="973" height="318" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVKmFD52Ap4dL8mveRQbReB_twZ8iUY91gwLlUCbiBjmZ23j9a1-wW__gWln3UQstZDIlJxbQkouvzpg2u8mvJh5CDjAmgt-vluzDHUkCVYj48BvjIHt3NW0GyyrrMh0yIDLpCZzqifBgu/s320/Beth.jpg" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">I asked how her ride had been and if she had
logged a few miles that morning. “A few.” Like 90 in just under 5 hours. She
was training on her Felt B12 TT carbon fiber bike (while decked out in her
sponsored Klean kit) for the upcoming Ironman Lake Placid, a 2.4 mile swim, 112
mile bike and 26.2 mile run. (Update: She finished her fourth Ironman in 12:09 and set
a new PR! Daaamn.)<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">Now, I could have looked down at my Craig’s List clunky
trike with seven gears and felt jealousy. Or moped because on the best of days,
I was putting in a fraction of the miles Beth logs JUST TO GET WARMED UP. But
that’s a fool’s errand when you have an unpredictable disease like multiple sclerosis, one that
affects each person wildly differently.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">It’s so tempting to compare yourself with
others—the healthy, the diseased, even the “old you.” Don’t dare fall into this
trap. Don’t compare yourself to Beth or, for that matter, to me. Do what you
can do. Today. And the next time out, if your goal is to improve, strive to do
it better. If it is to maintain, then attempt to match it. If it is to just try
to do something healthy, then try. With all due respect to Yoda, it’s okay to
just try.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAEj1SbQPFKGiXCshgf8WDJ_14ONAcS_K_RxKX26h0L88EJyXSW2a9la0vfZ9O89EAjrqqV67i0nlFX90M72T-Rm4zwEg_rxe63hg8t13wbvszT_JGsaYhmJyc-DlfQGrER40jXjqMKbgD/s1600/Hill+Climb.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="577" data-original-width="1024" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAEj1SbQPFKGiXCshgf8WDJ_14ONAcS_K_RxKX26h0L88EJyXSW2a9la0vfZ9O89EAjrqqV67i0nlFX90M72T-Rm4zwEg_rxe63hg8t13wbvszT_JGsaYhmJyc-DlfQGrER40jXjqMKbgD/s320/Hill+Climb.jpg" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;">Still bummed? Then remind yourself about Facebook.
You know, when you see the posts of friends who are eating THE BEST MEAL EVER
or doing THE COOLEST THING EVER. Sounds like they are having more fun than you,
awwwe, sad face. But remember, those same friends are not going to post about
the ungodly amount of diarrhea they got after that 5-star meal or that they
permanently lost 10 percent of their hearing because they were too close to the
stage when they got that high-five from Ke$ha (oh wait, she goes by just Kesha
now). They probably also got food poisoning after eating a hot dog at the
concert, had an unfortunate “accident” in the car on the drive home, and then
were so distracted that they got into a fender-bender. (Imagine exchanging
insurance information after <i>that</i>.) <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">See what I’m saying? Stop
with the measuring sticks. Be inspired by others with this disease and then do
what you can do. Today. And then tomorrow? Do what you can do.</span>Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com31tag:blogger.com,1999:blog-2838498765761167784.post-68673873902797060742017-07-03T12:31:00.000-06:002017-07-03T12:31:59.793-06:00Make it a Double
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizxg8J9QFacNxO-Zz3to_8oe3YbwYYl7KFLXmgN20zNdLn_xCwZ_HaRrEaoDya0vpRGVBRll90Z1tM6y5noxFMVoEcvRZlO0nfq6k3-QDx7_fnwhgGcG2mkF7q7vywptojQk85XM-wZgYi/s1600/DSC07182.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1035" data-original-width="1600" height="206" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizxg8J9QFacNxO-Zz3to_8oe3YbwYYl7KFLXmgN20zNdLn_xCwZ_HaRrEaoDya0vpRGVBRll90Z1tM6y5noxFMVoEcvRZlO0nfq6k3-QDx7_fnwhgGcG2mkF7q7vywptojQk85XM-wZgYi/s320/DSC07182.JPG" width="320" /></a></div>
<div style="margin: 0px 0px 13px;">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12pt; line-height: 115%; margin: 0px;">As I looked out my cabin window at the feisty steel-gray
seas of the Aegean, I knew the day was going to be challenging. Our ship had anchored
in the caldera harbor of Santorini, Greece, consistently voted one of the world’s
most beautiful islands by travel magazines. Oh so beautiful, they gush. Those
white-washed blue domed churches are a must see, they urge. But travel
magazines don’t have a category for world’s most inaccessible islands for those
with multiple sclerosis. I know, right? A little warning would have been
appreciated.</span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhsyH1bSLG9U7g4JwMXaJ7E9rnflMguTpadJ54NO4ZKmv8o-YbieKG5In0H06U3ltib-TS_nznyCMXK9lwR2boncP1YgMjK6IkUMfdXuJT5zLLOBQIPeV34XBLUei8qt1GjUfcUrHotjJf/s1600/DSC07149.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="600" data-original-width="644" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhsyH1bSLG9U7g4JwMXaJ7E9rnflMguTpadJ54NO4ZKmv8o-YbieKG5In0H06U3ltib-TS_nznyCMXK9lwR2boncP1YgMjK6IkUMfdXuJT5zLLOBQIPeV34XBLUei8qt1GjUfcUrHotjJf/s320/DSC07149.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The very definition of not-glassy-seas.</td></tr>
</tbody></table>
<div style="margin: 0px 0px 13px;">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12pt; line-height: 115%; margin: 0px;">The first sign of trouble appeared before I even
left the ship. Santorini is a tender port for cruise ships, meaning you have to
board smaller boats to get ashore. While cruise ship tenders tend to sync
decently with their own ships, Greece requires ships to use their tenders,
which sync <i style="mso-bidi-font-style: normal;">not at all.</i> This fact is
compounded when the seas are not glassy flat. </span></div>
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<div style="margin: 0px 0px 13px;">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12pt; line-height: 115%; margin: 0px;">As I stood waiting to board the tender, watching
it bob up and down like a whack-a-mole game run amok, I naïvely thought “totally
doable.” And then I tried to get on, putting my forearm crutches on the lip of
the vessel, which promptly dropped several feet. Forearm crutches, it turns
out, offer little support when they are both in midair. To avoid becoming fish
food, this was going to require perfect timing, luck, and Scotch. Lots of
Scotch. </span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcgjYyxRMcJfVSrKilgQo7vJwdttZz9hwCkaEt_DE62_IBRtsNXsVQN8LZbggSmU38a62Se-YdrqzSMi7vGYF6dW2IxxILxcP81Shed-Mv7bylv7qPJsqVB8J7hqQGpn9NYxZ1kHiIe5ZP/s1600/DSC07272.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="725" data-original-width="600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcgjYyxRMcJfVSrKilgQo7vJwdttZz9hwCkaEt_DE62_IBRtsNXsVQN8LZbggSmU38a62Se-YdrqzSMi7vGYF6dW2IxxILxcP81Shed-Mv7bylv7qPJsqVB8J7hqQGpn9NYxZ1kHiIe5ZP/s320/DSC07272.JPG" width="264" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The zig-zag climb up to Fira.</td></tr>
</tbody></table>
<div style="margin: 0px 0px 13px;">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12pt; line-height: 115%; margin: 0px;">After what felt like a minute of false starts
listening to instructions from the crew—“go now, wait don’t go, okay now, nope hold
on, NOW NOW”—four large men helped me clamor down into the tender as fellow
passengers watched on. I’ve never seen eyes so large in my life. I broke the
tension the only way I knew how.</span></div>
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<div style="margin: 0px 0px 13px;">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12pt; line-height: 115%; margin: 0px;">“Well, I guess we’re moving to Santorini, because
I’m never getting out of this thing.” I was only half joking. Maybe a quarter
joking. Fortunately, large and muscled Greek longshoremen were waiting at the
dock to lift me out whether or not I wanted to permanently reside on the
tender. Probably a good thing in the long run as it lacked restroom facilities
and Laura wasn’t thrilled with the décor made up primarily of uncomfortable seats
(my wife is so nit-picky). Little did I know the fun was just beginning.</span></div>
<br />
<div style="margin: 0px 0px 13px;">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12pt; line-height: 115%; margin: 0px;">To get to any of the towns in Santorini, which are
all perched on the cliffs 800 meters above the bay, you have to go up the side
of said 800-meter cliff. There are three ways to do this: take a donkey up 600+
steep and slippery steps holding on for dear life, climb the 600+ steep and
slippery steps while avoiding donkeys and donkey poo, or take the cable car. Option
C seemed most practical. </span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfRq6buS8uu7bEXLvA9YbRyQPUcVBhW5IFvOVJ8iq5umJshzh5vuWiaypu0JYJwD11OZMhZeF2VcWeiWteXnRdYwEBhQoVdqYkl_PkEDN9mOj5aVYeCLqtjVrslN0qPIf6q5GTLZ6ZxJZM/s1600/DSC07242.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="800" data-original-width="481" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfRq6buS8uu7bEXLvA9YbRyQPUcVBhW5IFvOVJ8iq5umJshzh5vuWiaypu0JYJwD11OZMhZeF2VcWeiWteXnRdYwEBhQoVdqYkl_PkEDN9mOj5aVYeCLqtjVrslN0qPIf6q5GTLZ6ZxJZM/s320/DSC07242.JPG" width="192" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is steeper than it looks.</td></tr>
</tbody></table>
<div style="margin: 0px 0px 13px;">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12pt; line-height: 115%; margin: 0px;">After taking an elevator (reserved for the
disabled), then a wheelchair lift (restricted to wheelchair users), I arrived
at a cable car that was not wheelchair accessible. Really. To get on, you had
to fold your wheelchair, duck down, and slink inside. Finally, after nearly an
hour—tender, elevator, lift, cable car—we arrived in Fira, pronounced
(appropriately) FEAR-ah. Why appropriately? See, the narrow, cobblestoned
streets in Fira primarily go in two directions: straight up and straight down. This
is a challenge for many tourists (I overheard one say he was going to die, and
I believed him), but it is especially challenging in a wheelchair. At least
there were no steps. But there were also no blue-domed churches, either. Those
were in the town of Oia, known as the “eagle’s nest” or as, loosely translated
by me, “town of many friggin steps.”</span></div>
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<div style="margin: 0px 0px 13px;">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12pt; line-height: 115%; margin: 0px;">Oh crud. Fortunately our guide assured us the
main, albeit narrow, marble pedestrian thoroughfare through town was flat with
no steps. Brilliant! Except for the minor complication that it was neither flat
nor step free. Ah, details, details. I was going to see those damn blue-dome
churches one way or another after this escapade. </span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv8qXe9x43deKRWqTN1oVt2JRBYh1FzwCUoMsIqhn4-JWTpNAnqTIbQX2mhzHM5v0UrXDgec7nt8REV8nAzbX-BgMMucqjaf4dZ2FcIbXPTdfzr8_emijnPj3o-KpWaUZfCKuor65u-fUg/s1600/DSC07153.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="600" data-original-width="800" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv8qXe9x43deKRWqTN1oVt2JRBYh1FzwCUoMsIqhn4-JWTpNAnqTIbQX2mhzHM5v0UrXDgec7nt8REV8nAzbX-BgMMucqjaf4dZ2FcIbXPTdfzr8_emijnPj3o-KpWaUZfCKuor65u-fUg/s320/DSC07153.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Busted? Really?</td></tr>
</tbody></table>
<div style="margin: 0px 0px 13px;">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12pt; line-height: 115%; margin: 0px;">After playing tourist dodgeball, walking a bit and
rolling a bit, there they were. Blue. Domed. Churches. Now, I could say that
the trials and tribulations of getting to this perch were not worth the effort,
but as the morning cloud cover had burned off and the skies turned an aching
blue, the sight was every bit as pretty as advertised. This was worth it and I
had the photos to prove it. Then reality sunk in. I still had to make it back
to the ship in one piece. Santorini, that little devil, wasn’t done messing
with me.</span></div>
<br />
<div style="margin: 0px 0px 13px;">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12pt; line-height: 115%; margin: 0px;">Naturally, almost predictably, in the few hours between
our morning ascension, the wheelchair lift at the cable car had broken down. Could
I do steps? the attendant asked. Oh yeah, I said (pronounced conveniently like
Oia). Finally, epically, all that was left was the tender ride. After “boarding”
the small boat as safely as one could with balance and wonky legs, knuckles
began to whiten, faces began to ashen. All of my fellow passengers were
genuinely concerned for my safety. Me? I was just calmly freaking out.</span></div>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEMomCQeNSoD5b3wygRiO1OPBcjnNPFVPWZ6Agr0iwUZ6YMVCvuUVrE3_CyNKtgENGogm88nxhBSaUdWkIAMwkK98xiVoNskgcgX52msZj23s3eyUHyqxItqh_d7npwiyz10Gx8h52GBP5/s1600/DSC07142.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="800" data-original-width="600" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEMomCQeNSoD5b3wygRiO1OPBcjnNPFVPWZ6Agr0iwUZ6YMVCvuUVrE3_CyNKtgENGogm88nxhBSaUdWkIAMwkK98xiVoNskgcgX52msZj23s3eyUHyqxItqh_d7npwiyz10Gx8h52GBP5/s200/DSC07142.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A small step for a man, <br />a giant leap for an MSer.</td></tr>
</tbody></table>
<div style="margin: 0px 0px 13px;">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12pt; line-height: 115%; margin: 0px;">As the tender lined up with our ship, my shoulder
felt many comforting pats as mumbles of Good luck and Godspeed rippled through
the cabin. I am not joking. Finally it was just me and Laura on the tender as
it bobbed fitfully. I climbed up the stairs and went for it. Nope. Then went
for it again. Nope. The step was nearly three feet—we had to time my exit with
the bob. Finally, and with a huge heave from the crew, I made it to the ship’s
platform. Almost. My right foot, the weak and stubborn one, was stuck on the
lip of the ship as the bobbing tender threatened to crush it against the side
of the ship. I knew it was getting serious when the crew’s eyes began to widen,
apparently the theme for the day. Their shouting also gave away their concern. And
then… Laura reached up and popped my foot loose. I made it back aboard.</span></div>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmvS9d_NzC3OoGUXcUdjUNGPa1FHxQ_GTwkliZr3bqp335bPD6G3cGacv0cTBn60asHQaeLKdM-ooE5EI0SMf9wbhCY9FdfkgxOUWhE6qiLZEMErN7SNKq_nVk5UuwZXsyhCo07OQyP0tR/s1600/DSC07174.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="976" data-original-width="1600" height="195" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmvS9d_NzC3OoGUXcUdjUNGPa1FHxQ_GTwkliZr3bqp335bPD6G3cGacv0cTBn60asHQaeLKdM-ooE5EI0SMf9wbhCY9FdfkgxOUWhE6qiLZEMErN7SNKq_nVk5UuwZXsyhCo07OQyP0tR/s320/DSC07174.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I saw my blue domes. Hot diggity!</td></tr>
</tbody></table>
<div style="margin: 0px 0px 13px;">
<span style="font-family: "Trebuchet MS","sans-serif"; font-size: 12pt; line-height: 115%; margin: 0px;">Every adventure one takes with MS is going to deliver
challenges, that’s a given. And some will be bigger than others. When that
happens—when that challenge looks more like a mountain than a molehill—you are
left with only question: how does one rise to meet such a challenge? For me,
rising to such an occasion in Santorini was a bit more literal and included a fortuitous
bob and four big dudes, but whatever. I survived to enjoy another day, and another
day when I could enjoy my beloved beer and Cheetos. But today, this day, I was
going to have a Scotch. Make that a double.</span></div>
<br />
<div style="margin: 0px 0px 13px;">
<br /></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.com10