Saturday, December 31, 2011

Seizing the moment… and not letting go

The other day I was reading about a fellow MSers dilemma. Recently diagnosed, he wondered if he should go with his son on a long-planned camping trip—in the heat, no refrigeration for his meds, and an uncertainty about how he would fare in the back country. There should have been no dilemma. If you think you can do it, do it. Don’t wait. Don’t delay. Don’t ever look back and say, “I should have.” Multiple sclerosis is an unpredictable beast that can be as mild as a bell pepper or as nasty as India’s Naga Jolokia, the world’s hottest chile pepper.

In the spring of 2009 when Wolf Creek ski area decided to open just for the weekend (in mid April, mind you), there wasn’t a moment of hesitation. I had to go. And I’m glad I did. My last day of the ski season was one of those blissful powder days when my disease all but vanished. But it didn’t start that way.

For my first run, my legs barked at my brain in frustration as I clunked down one of the easiest trails on the mountain. I sat down before the last headwall, wondering if I should take the easier cat-track around or tackle the steeper pitch, which can get a little bumped up.  “You can do it, dude,” said a snowboarder eager to help me overcome my fear of a green run suited for beginners. “What level are you?” he asked. “Expert,” I said. “Former expert.” To say that was sobering. “No problem, man. You got this. Coming back from an injury or whatever, you can do this.” My new snowboard friend was determined to get me off my ass and down the mountain. It worked. The rest of the day, my wife at my side, I went down black diamond runs I hadn’t been able to board for the last two seasons. Everything, inexplicably, clicked. We pounded all day, the legs never tiring. Even when a whiteout hit and the lodge was packed with not a chair available, a woman—who saw me squatting to save leg strength—offered up her seat. She would eat her lunch standing up. I told her karma has a funny way of working out.

The storm easing, my last few runs were perfection—floating arced turns on virgin, untracked powder. I didn’t know it at the time, but it was to be my last day on a snowboard. But I’ll always know that I’ll never have to say “I should have.” Because I did. My first season as an adaptive skier begins at the end of January 2012. And I can’t wait!

Originally published May 14, 2009, edited for clarity.

Tuesday, November 29, 2011

Advantages of MS #579: It could save a life in a wilderness survival situation

Picture this: you have hiked deep into the backcountry of the Canadian Rockies. To pass time in the evenings, you brought along a copy of Reader’s Digest, Large Print Edition (since your eyesight isn’t so good). After carefully setting up your tent, eagerly anticipating another edition of "Drama in Real Life," a bear saunters through your campsite and eats your bacon-flavored mittens. Your hickory-smoked down coat. Your smores-tinged fuzzy hat. Your Axe body spray-lined sleeping bag. Hell, even your camp stove. Yeah, that was one hungry bear with taste bud issues. 

Then that night an unexpected snowstorm drops a foot of snow and temperatures plummet. When you wander outside to pee (urgently, I may add), you slip in the new snow and slide into a creek, drenching all of your clothes. Now you have serious issues and death could be looming without warmth. So you try to make a fire, but all that you can find is very wet wood that just won't light. Your only hope to start one is with kindling from your magazine. Fortunately you have just enough material to burn, since the Large Print version is oversized. The standard version would not have provided enough fuel and you would have been worm food. Hypothermia is avoided, your life is saved, all because of your MS.

Originally published April 12, 2007. Expanded for grins.

Friday, November 4, 2011

The art of cooking with multiple sclerosis

I’ve long preached the importance of pursuing your active passions with multiple sclerosis, but “active” can mean different things to different people. To some it might mean swimming up the Nile dodging crocodiles and hippos; to others it means just doing what you love to do, at least when it takes more effort than lifting your right arm to down a beer. (Or for you southpaws, your left arm.)

One of my personal passions is cooking—I am an unabashed foodie—yet for the past two years I’ve deftly avoided hosting dinner parties. Too much work and stress, I reasoned. But lately I’d been more Balsa Wood Chef than Iron Chef, even though I regularly cook up a storm for Laura. (Literally. The kitchen post-Dave always looks like a typhoon of feral cats roared through.) But after being the dinner guest one too many times at the homes of friends, I realized it was time to throw down and chef it up. So this past weekend I decided to cook an over-the-top, use-every-dish-and-glass-in-the-house six-course extravaganza for eight. When I do something, I do it right. What the hell was I thinking?

The menu was as ambitious as an eight-year-old on Halloween lugging both a wagon and a pillowcase to haul the goods. An Italian cheese and olive plate to start, followed by an arugula salad with shaved Parmigiano Reggiano, a white bean Tuscan soup with pancetta and rosemary, a palate-cleansing lemon sorbet, then a shitake/cremini mushroom pasta alongside sliced filet mignon (cooked rare) drizzled with extra virgin olive oil and a squeeze of lemon. For desert: a decadent chocolate pot de crème with fresh raspberries and vanilla-infused whipped cream. Beverage courses: sparkling Prosecco, a bright Vermentino, a rich Vino Nobile di Montepulciano, and a potent grappa.

It went flawlessly—and I spent most of my time chatting instead of sweating in the kitchen. How? Spreading out the work, sitting down at every opportunity, and enlisting help (aka, better half). Shopping was done on Wednesday. The soup and dessert were made on Thursday. The house was picked up and the table set on Friday. The only dishes that needed preparing on Saturday were the steak and mushrooms, both of which were based on relatively easy recipes. Before guests arrived, cheese was plated, the lemon/olive oil vinaigrette was whisked, and the soup was warming.

To my fellow MS cooks out there, as the threat of holiday entertaining rolls around, know that if a gimp like me can get his chef on, there's a good chance you can, too. And eating extravagantly at home won’t destroy your budget like a meal out. Without the alcohol, it was all affordable, less than $100. Just remember, keep capturing that kitchen passion with patience, prep, and props (e.g., a well-placed chair). But for goodness sakes, recruit someone to do dishes. I only recently got rid of my ungodly feral cat infestation!

Wednesday, October 19, 2011

Pushing the MS limits 100 feet underground

So there I was, on my back, slinking feet first through a hole just 10 inches high. I call ahead to the guide. “There isn’t some crazy abyss on the other side, is there?” After all, I could only see rock inches away from my face, as I had to tilt my helmeted head to the side to make the tight squeeze. His response was not comforting. 

“Actually there is, so you’ll want to place your feet exactly where I tell you, then mantle across to the rock saddle that bisects the drop-off, and carefully scootch across on your rear.” 

Perfect. 100 feet underground in South Dakota’s Wind Cave on the park’s ”wild cave tour” in the summer of 2007 with eight other gullible souls, none of whom had multiple sclerosis like me. Despite the 53 degree temps, the four-hour tour had fired up my vision issues and my right leg was getting sketchy. AND I HAD TO SLINK ACROSS A NARROW SLIVER OF ROCK OVER AN ABYSS? I could already see the headline. “Founder of MS Nonprofit Dies in Cave Accident; Guy had it Coming.” 

I debated my options. Try. Or die trying. While most of the cave was relatively easy to navigate, with lots of handholds and crawling, this was the final of three challenging sections. So I turned off my brain, tried not to stress, and focused on the task at hand: not dying. As you can tell since you are reading this, I was successful. The rest of tour was cake, except that the fright of the abyss and frequent stooping knocked my legs out. I could crawl, but walking was a major chore for the last hour and I eagerly looked forward to every little break. 

Would I recommend it to other MSers? You better be in great shape. And not have a fear of heights. And enjoy getting into literally tight situations!  

Originally published August 17, 2007. Edited for clarity.

Friday, October 14, 2011

Suicide, multiple sclerosis, and the loss of a best friend

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?

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.

Five years ago I lost one of my closest friends to suicide. Ironically, Brandon was a major lifeline when I was trying to cope with getting diagnosed. Giving his eulogy was one of the hardest things I’ve ever done. I’d like to share what I wrote.


-------------------------

Brandon Lynn Crotty passed away June 27, 2006. He was 36. Born December 27, 1969 in Wichita, Kansas, Brandon grew up there and graduated from Wichita State University before starting his career in pharmaceuticals sales. He moved to Albuquerque in 2000, most recently becoming one of his company’s top sales representatives worldwide. An aficionado of classical music and jazz, Brandon 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.

------------------------

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.”

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 Brandon 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”.

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.

I remember how he introduced me to jazz. Like he has done with many a friend before me, he gave me a CD—Kind of Blue 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.

I remember how he introduced me to some of the other finer things in life. NASCAR … The Sopranos … obnoxiously loud ski outfits.

I remember when I went down my first double black diamond ski run at Wolf Creek. Brandon was right next to me. For better or for worse, we were going down together. 

I remember how we talked about his art. How determined he was that his next career would be that of a painter.

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.

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.

I remember it all. And I’ll never forget.

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.

No, this final chapter was not supposed to be your destiny, Brandon.
 
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.

Today we say so long, Brandon. But we'll always remember.

------------------------

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.

Saturday, September 24, 2011

Rewriting the rules of tennis … MS style

I can be a stubborn son-of-a-bitch when it comes to staying active. Tennis is a perfect example. In 2008, if you looked at my physical ability to play a racquet sport, you would probably say the closest I should’ve been to a tennis court was a Wii and wide-screen TV. I couldn’t run—or even jog for that matter, my legs were just too sloppy—and when my body warmed up from activity, my eyesight vanished like a hot dog in front of Kobayashi. Picture it. Within five minutes of getting on the court, there was an immobile blind guy holding what might as well be a flattened pasta strainer in his right hand. And yet I could still compete, even take the occasional set, from my wife, a capable tennis player. How? By rewriting the rules, MS style.

First, she had to make an honest attempt to hit the ball at or near me. Second, she had to play double lines. Third, I got as many bounces as I needed to give my eyes a chance to pick up the ball. Now you might wonder if this was fun. Absolutely! My solid forehand and respectable backhand kept her running from side to side. Even though I only picked up the ball in splotches, I rarely missed completely, watching Laura swing and using muscle memory to gauge when and where to swing the racquet. Although I served flat-footed—jumping was like running, it wasn’t happening—my first serve was better than my pre-MS second serve ever was. I even scored a couple aces a set.

Today, even though just walking with a cane is challenging, I still get out on the courts. How? Forearm crutch (more stability) in the left hand, tennis racquet in the right hand, a walker parked nearby (on court), a bunch of balls at the ready, and a very, very patient spouse. Laura hits the ball to my forehand and I fire it back. Rallies are short and a couple cans of balls last only a few minutes, which works out strangely well: I rest on the walker each time we run out of balls and she gets her exercise chasing after them.

Even though we may have mountains to climb to do our active passions, by using enough ropes, a little ingenuity, and, well, bending the rules, at least we’re on that mountain, dagnammit. It might not be pretty, but it’s darn beautiful.

Originally published in part October 22, 2008. Edited for clarity and expanded.

Sunday, September 11, 2011

Life can be unfair, with or without multiple sclerosis

Bryan Jack could have been a cliché. Tall, lanky, and slightly awkward, he was a mathematical genius who drove quirky Saabs and sported haircuts that never seemed to be just right. When I lived with my parents in Alexandria, Virginia, he was our next-door neighbor. The neighbor who would rescue me from a missed Metro bus, the neighbor who would treat me for bagels at Chesapeake Bagel Bakery, the neighbor who would drive me back to college with a load of freshly laundered clothes after a visit with Mom and Dad.

As the budget analyst/director of the programming and fiscal economics division for the Defense Department, Bryan worked at the Pentagon, where he had commuted almost daily for the past 23 years.

But on September 11, 2001, he was not working at the Pentagon. No. Instead he was looking over his notes, preparing to give a lecture later at the Naval Post Graduate School. He was on a nonstop flight to California. American Airlines Flight 77. The flight that hit the Pentagon. He was 48.

Life with multiple sclerosis can be unfair. But life can be unfair for a lot of reasons.

Thursday, September 8, 2011

Staring a multiple sclerosis relapse in the face... and blinking


It took two and half years from my first attack, which numbed the entire right side of my body in the fall of 2005, for the second relapse to strike. With relapse remitting multiple sclerosis, that second attack was almost certainly going to happen. So it was odd that I didn’t see it coming in March of 2008. I had just snowboarded a full day in Telluride. I went shoe shoeing for two hours the following day (picture of me and my wife Laura at left from that day). I was guessing I must have overdid it. That's all.

Okay, so my right leg was A LOT weaker. Going from the couch to the fridge to get a beer was an ordeal. And lifting said beer with my right arm actually required serious effort. It felt so stinkin’ heavy! And then there was that burning sensation all over my body. As the wave of new symptoms slowly rolled in, each swell eroded my confidence. I wasn’t prepared mentally. I guess who really is?

A couple nights later when Laura was away, my right leg screaming at me, I realized I didn’t have the strength to stand and do a measly few dinner dishes. So I just sat down in the middle of the kitchen floor. And cried for five solid minutes. I hadn’t cried about my MS like that since I was first diagnosed, but I needed that release. The following day I caved and called the neuro to give them an update. Come in the next day, they said. Two days later I was getting my first of three 1,000 mg steroid infusions in the hospital, all the while stubbornly still going to the gym despite barely being able to walk.

A week later, I was back to my relative “normal” self—the burning was gone and most of my strength had returned. Even though I put on airs of nothing-gets-me-down super ActiveMSer guy, my kryptonite experience in the kitchen—which my wife heard about for the first time reading this blog (sorry honey)—served as a reminder that this disease can, at times, be impossibly hard to cope with. (And I fully realize I had it relatively easy!) But cope we must. Tomorrow always dawns another day… and renewed hope.

Originally published March 7, 2008. Edited for clarity.

Monday, August 22, 2011

Going MS drug free: the flawed arguments

If you have relapse remitting multiple sclerosis, there are many legitimate reasons not to take disease modifying drugs (DMDs) for your MS. You are allergic and/or your body cannot physically tolerate any of the available medications. You cannot afford DMDs because you have no insurance and are ineligible for any of the multitude of patient assistance programs. You’ve tried every drug available to you and participated in clinical trials and still, despite throwing even the kitchen sink complete with garbage disposal, 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.

Which makes me scratch my head as to why an estimated 43% of people with RRMS are not on any form of DMD therapy. For decades, neurologists and those afflicted with MS had been pleading, begging, for any sort of treatment. Anything. Finally, two decades ago, DMDs arrived and have effectively changed the direness of a diagnosis of multiple sclerosis. Ask your neurologist if he or she has seen a difference in the level of disability of their patients before and after DMDs became available, and the answer universally will be yes. And they’ll say that that difference has been dramatic. Which is why neurologists—each of whom have dedicated themselves to a professional career to become a specialist to help you—understandably are frustrated when their patients say no thanks to treatments.

If they can’t convince you, how can I convince you?

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 it starts happening at the earliest stages of the disease, even while your symptoms are mild or nonexistent. But I won’t.

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.

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.

I could educate you about the countless studies, endless research, and copious analysis that have shown DMDs to generally have a positive influence on this disease, preventing relapses, slowing the accumulation of brain lesions, delaying the start of secondary progression, and perhaps postponing disability. But I won’t.

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.

I could remind you that for hundreds of years, the only 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 no solid evidence they slow it now. But I won’t.

I could warn you not to base your entire decision on how to treat your MS on a handful of vocal drug-free cheerleaders on the internet (who all are doing great!). But I won’t.

I could say all these things. Heck, I’ve tried. This has been written and rewritten (and edited and then edited again) for the past five years. Over 20 pages and 8,000 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.

“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 who are likely your caregivers—your spouse, children, parents, brothers, sisters—still happy with your decision? “I’m waiting for better treatments like chronic cerebro-spinal venous insufficiency (CCSVI) and stem cells.” 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.

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, the current available drugs don’t reverse disability; they just slow down this progressive disease. Who’s to say it wouldn’t have progressed far faster without your DMDs. (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 separate the successes or failures of the two. So are you going to quit all of those too?) “I’ve taken Drug Y for years and I’m going off all DMDs 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.”

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. “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 eventually brings to most of us. “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?

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 DMDs is so hard (and always so 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 may delay disease progression, reduce relapses and postpone secondary progression. 


Whoa, Dave, didn't a 5-year Canadian study released in 2012 find that the "administration of interferon beta was not associated with a reduction in the progression of disability"? Yup. But that looked at just one class of drug. And a similarly large 10-year Italian study, released weeks earlier, found that "the risk of secondary progression was significantly lower in patients treated with DMDs" and that "DMDs significantly reduce the risk of multiple sclerosis progression." Then a 12-year Swedish study, released after these two, concluded that "there was a longer time to SP in the contemporary subjects given DMD." Who to trust? Instead of putting all of your disbelieving eggs into one study's basket, perhaps look at the bigger picture (and beyond the now questionable interferons if you prefer). 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 now a lot 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 be managed and most people can live with those disorders if treated.

Here’s the bottom line. Many people can enjoy pretty normal lives with MS, short of a cure, with treatment. 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.

In the years that I’ve been running ActiveMSers—I started the website when I was diagnosed in 2006—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. Not one. But 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, tried, taking DMDs to begin with. The saddest part for me is hearing from those desperate to get onto an exciting clinical trial (like the one I am on, which has saved my life) only to discover that they don't qualify. And why not? Often the most aggressive, cutting-edge trials require that the patient must have failed at least one or two FDA-approved therapies first.

Now I can’t promise that DMDs will work for you. But I can promise that with this disease, you never want to start a sentence with “if only…” As someone with relapse remitting MS, you have a rare wealth of treatment options, while those with secondary and primary progressive MS tragically have virtually none. Please take advantage of them while you can. The longer you can keep your disease in the relapse-remitting phase 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.

Updated March 15, 2013

Tuesday, August 16, 2011

The inevitable case … of the multiple sclerosis worst case scenario


I got a call the other day from a woman who appeared to headed to a diagnosis of multiple sclerosis. Her doctor had said it was a possibility, and just hearing those two words–-multiple sclerosis–-sent her down the path that many of us have trodden: Multiple Sclerosis Worst Case Scenario (MSWCS). 

Yeah, you know what I’m talking about. MSWCS is a common affliction of those newly diagnosed or in limbo. Your brain immediately fires up the WCS lobe and now the worst things that MS can do to you are not only a possibility, but practically a given. In a wheelchair. With no bowel or bladder control. Blind. Deaf. Can’t swallow. Can’t talk. An absent brain. And you are so numb you can only feel your nose, which itches all the time. But you can’t scratch it because you can’t move your arms. Oh yeah, and your health insurance got cancelled, your family put you in a budget nursing home, and your dog was adopted by a Mr. Vick. 

When these thoughts weave their way into your mind, you have to tell your brain to SHUT THE HELL UP. Sure, MS can do all of the above. But why dwell on it? MSWCS is quite unlikely. Stats show that many people with MS can and do live relatively normal lives. Yes, you’ll have to make changes. No, it won’t be easy. Focus on what can you do today and worry about tomorrow, well, tomorrow. And with the advances in MS research, odds are good that there will be some powerful treatments (potentially even fixes) coming in the not-too-distant future. So banish all MSWCS thoughts … use your brain for more important matters, like a good sudoku puzzle.

Originally posted March 24th, 2008

Friday, July 29, 2011

What it’s Like: Numb Hands with MS

I’m not a technophobe. Hardly. I design and run my own website. I diagnose PC problems remotely, barking out step-by-step commands from memory. I learn involved software programs in just a couple hours of fiddling around. But I don’t text. Now I know what you are thinking. I must also hunt my own food with a spear and constantly yearn for a future that includes fire not solely sparked by lightning strikes. But see, I have a wee problem that prevents efficient texting. It’s a disease called multiple sclerosis and one of my personal issues—indeed one of many—happens to be numb and clumsy hands. So for those friends who insist on not answering the phone when I call, and won’t call me back even though my phone number clearly shows that I called (don’t worry, I rarely leave a message, since that would be especially annoying), I invite you to spend an hour in my klutzy fingered world.

Put on a pair of ski gloves. I won’t be cruel and make you wear mittens (for me it’s usually not that bad), but find a modestly thick pair with a bit of insulation. Now let’s have some fun!

What’s that noise? Why, it’s your alarm going off in the morning. Just hit that tiny button to turn it off. No, not that button. Whoops, no that one’s the radio. Don’t hit the snooze, it’ll just go off again in 8 minutes. Okay, unplugging it works. Yawn. What’s next? Fumbling with soap in the shower is a pain, shaving might slice an artery, and let’s not even try to adjust the temperature just right in the shower since you can’t really feel that either (plus your gloves aren’t Gore-Tex), so let’s skip getting clean. Brushing your teeth is only a wee bit awkward since you dropped the tiny toothpaste cap in the sink and not on the floor. And fortunately since I’m a dude, I won’t make you put on all your makeup or fix your hair with gloves on—after all, messy is in these days. Let’s just throw on some clothes and get dressed.

Hmm. Buttoning a shirt with a pair of gloves is hard, huh? Fine, despite it being in the 90s, today can be a sweater day just for you. But you have to wear a pair of pants and they have a button and a zipper. Don’t worry, I’ll wait…. Wow, I’m glad this isn’t a timed Olympic event…. Done? Perfect! Now you have to go the bathroom. Sorry, that means unbuttoning and unzipping. And yeah, you gotta go #2. And yeah, you have to keep your gloves on while you wipe. Um, and yeah, I don’t need those gloves back. Really, you can have them. Let’s call it an early b-day present.

Ready for breakfast? Oh wait, you still need to button and zip your pants. Looks like you’ll be running a bit late for work today. Again. Sigh. No matter, it’s time for your morning rant where you blame manufacturers instead of your gloves. Why do box tops of cereal NEVER work right? Why are cartons of milk IMPOSSIBLE to open? Why are vitamins so TINY? Why is the foil on yogurt SO hard to take off? And why can’t scientists genetically engineer an orange so you can ACTUALLY peel it? And speaking of oranges, you are out of orange juice, so put that on your grocery list. I know, I know, it’s hard to pick up a pen with your gloves on. Writing is even harder so abbreviations are fine. Um, that doesn’t look like “OJ” but I know what you mean.

Times a tickin’! Grab some change for the soda machine and let’s cruise. No, no, not all of your change, just a few coins. Nope, not enough. Nope, too much. Ah heck, let’s skip the Diet Coke today. Oh, and I always lock the house when I leave. No, that’s my car key. No, that’s the mail key. Nope, that’s for the storage shed. That’s my grocery store frequent shopper card. Uh, that’s a key for a doggy door. No, I have no idea why I keep that on my key ring. Yes, I know I don’t even own a dog nor have a doggy door, much less one that locks. (I really need to trim the number of keys on my key ring.) Aha, you found it: the house key! Finally we are moments away from being off. Just slip the car key into the ignition. No, that’s the house key…. The mail key…. The house key again….

Finally, to finish off your hour, send me a detailed text message (not while driving) apologizing for not understanding my disability and saying that despite your personal quest to not talk on the phone unless absolutely necessary—you will make a rare exception in my case when I call. After you spend a frustrating 15 minutes composing a message that would have taken 15 seconds to relay verbally, hit send and take off your gloves. And forever remember that I can never remove mine. 

Thursday, July 21, 2011

Life (and Death?) Decisions in the Himalayas

I work very hard at making sure multiple sclerosis doesn't rule my life. But sometimes it does make the rules—rules I don’t agree with, but begrudgingly follow. Case in point: my adventure in 2008 to the Kingdom of Bhutan, an unspoiled country in the Himalayas, rich with culture, scenery, and dramatic monasteries. One of the country’s holiest sites is Taktshang Goemba (Tiger’s Nest Monastery). Perched 3,000 feet above the valley floor of Paro, Taktshang hangs on a cliff face, accessible only by a twisty mess of hundreds of stairs. 
Rocky, uneven stairs without railings, and precipitous drops guaranteed to take your life with a misstep. At the time I was a mountain goat with trekking poles, but stairs without railings were admittedly a nemesis, requiring much more concentration and careful foot placement. Was it worth risking plunging to my demise to visit Tiger’s Nest? Odds were good I’d make it without incident, but I recall odds were also good I wouldn't end up with a crappy disease. 
I made the difficult decision to pass, and watched with binoculars as my wife and good friend Andy visited the holy monastery. Dozens of people passed me from my safe perch. When a man from Holland turned back due to fear of heights, I was patting myself on the back for making such a wise decision…. But then an 85-year-old great grandmother went by me, barely able to walk, on her quest to Taktshang. Hmm, I thought. And then not five minutes later, a blind dude, grabbing onto his friend’s backpack and using his white cane to identify each step, happily hiked past. 
Okay, that one stung a bit. But he was Bhutanese (probably a confident climber) and he wouldn't get vertigo looking down a cliff face (one of the rare benefits of being blind). It’s absolutely inspiring to see others make the best of their disabilities. Sure, having MS means saying no to some challenges that earlier you could have taken on with gusto. And that’s okay. I’d rather decline a challenge than to be faced with no challenges at all.
Originally posted April 30, 2008 (updated for clarity)

Monday, July 11, 2011

Are We That Gullible?

Unfortunately, having a chronic disease like multiple sclerosis—a disease that continues to be defined as incurable—makes us more susceptible to charlatans and snake oil. We desperately want better answers … and that makes us, to put it bluntly, gullible. Case in point, there recently was a sad story of a woman who was told by a “doctor” that she didn't have MS (it must instead be Lyme Disease)—and to change her treatment completely … and to take a baldness treatment, a drug for Alzheimer's, and shots of vitamins (B12). Her daughter, who was told by the same practitioner to soak in a hot tub while eating watermelon, eventually reported the man to authorities after thousands of dollars had been spent ($300 a visit can get pricey). The mother later died. Stories that end fatally are unusual—it’s more common that the story ends with you and your money separating while your disease progresses.

I know what you are thinking. “Dave, I’m way too bright for this and there’s no way I’d fall for eating watermelon in a hot tub, or cantaloupe for that matter.” Here’s the problem. The allure of elixirs claiming to fix us is hard to resist because their supposed solutions have enough fact to sound plausible, indeed enough quasi-science to sound beneficial. And elixir companies are only too happy to exploit this, stopping at nothing to get to your wallet or billfold.

For example, after ignoring phone calls and e-mails from an MS supplement/diet "business," I got an unsolicited check in the mail for $100 sent 2-day air "just to show you how easy it is to collect commissions from us" if I promote their special "MS course" on ActiveMSers (and in my e-newsletter). Of course I was asked to also plug their webinar, which incidentally will discuss the pros and cons of chronic cerebro-spinal venous insufficiency (CCSVI), a topic that’s a clever and guaranteed audience draw even though their treatment has nothing to do with CCSVI. It goes on to say "you can help your followers learn how to get rid of their MS symptoms"—like, he explains, fatigue, pain and tingling, and loss of balance and memory—and "generate income to help your business." Wow, a miracle treatment that also makes me money. Hmm. This gentleman, and I use that term loosely, is either a fraud or a soon-to-be winner of the Nobel Prize in both medicine and business.

On the internet there are gatekeepers, and I am proud to be one. I never responded. But for every website like mine, there is another that will cash that check, make extra money, all at your expense. So when you read effusive praise about some supplement, diet, program, or procedure, beware. Then take a cold shower while eating a bowl full of pomegranate seeds sprinkled with cinnamon. The cool water will help restore nerve conductivity, the continuous stream will activate the critical stimuli responsible for the neuro-reconnection between your axons and spinal column, all while the antioxidant properties of the pomegranate, used by ancient Egyptians, will act as a powerful immunomodulator. Its effects are magnified when combined with the anti-inflammatory properties of cinnamon, which currently is being studied by the NIH for its ability to counteract and inhibit the glial activation that causes brain cell death. The simultaneous fusion of all three has the proven potential to improve symptoms and reverse MS.

Or just take a cold shower and chill out. And for gosh sakes, don’t buy that bridge.