tag:blogger.com,1999:blog-2838498765761167784.comments2024-01-29T11:48:55.990-07:00Dave's ActiveMSers BlogDave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.comBlogger1204125tag:blogger.com,1999:blog-2838498765761167784.post-76652177343761092032024-01-11T22:27:50.181-07:002024-01-11T22:27:50.181-07:00I don’t have MS, but I do have cognitive problems,...I don’t have MS, but I do have cognitive problems, heat intolerance and fatigue, so this website is so helpful for me.<br /><br />(I have something in the same family as POTS, due to my immune system interfering with my cerebral blood flow by making the arteries constrict, reducing the blood flow by about 20% on a bad day. You usually faint at 40%.)kushamihttps://www.blogger.com/profile/17348980220982246051noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-50385969585605700792023-10-13T06:48:39.084-06:002023-10-13T06:48:39.084-06:00Dave, five years after this article, it is still h...Dave, five years after this article, it is still having an impact! I just discovered active ms-ers and as a racing cyclist with zero cycling friends that also have Ms, it’s easy to make dangerous comparisons. I will save this article, it is so full of caring!Meg Cortright Cadoganhttps://www.blogger.com/profile/05632314312082533820noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-49752982235838359712023-05-11T11:55:36.496-06:002023-05-11T11:55:36.496-06:00Anon, as if you needed another wrinkle to cloud yo...Anon, as if you needed another wrinkle to cloud your commitment to DMTs, I discovered in 2021 that I had been misdiagnosed. I have Lyme disease. And I've been writing a memoir about it. I recommend checking it out.<br />https://www.sitdownbeforereading.com/Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-63316224366820151872023-05-10T12:03:14.079-06:002023-05-10T12:03:14.079-06:00Kinda needed this today. I’m on Kesimpta and havin...Kinda needed this today. I’m on Kesimpta and having a rough time of it with side affects. Started wondering “what if I just ….” It you’re right. I’ve got a daughter to think of. I know this is is an I’m older post. But really needed to see it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-50371820186136336592021-12-28T17:02:12.053-07:002021-12-28T17:02:12.053-07:00Unknown, hang in there! The first few months for m...Unknown, hang in there! The first few months for me were so, so hard. But it sounds like you are already getting back in the water, ready for your next adventure. You've got this. Totally! Great that you found us :)Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-89120998958150789942021-12-26T17:17:42.544-07:002021-12-26T17:17:42.544-07:00I heard the "scary words" last Friday, a...I heard the "scary words" last Friday, and I am thankful I found this post and your website. I've never surf-surfed, but I love to body-surf. <br /><br />When you're young and have boundless energy, body surfing only ends in two ways: "that was fun" or "that hurt." Before you get to "that hurt," you have a certain revelation that things are out of your control. You've misjudged the wave, your legs are over your head and you're going to be thrown under water. <br /><br />More often than not, after some water gets in your nose and sand in your shorts, you bounce right back up, say "that was fun!" and swim back for another round. Other times, you're done for the day, drag yourself back to the beach and come back another day.<br /><br />Right now, this hurts. I am hopeful that I can absorb this news and get back to playing in the waves. Thanks very much for this website!<br />Anonymoushttps://www.blogger.com/profile/06470887031052136463noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-60102554287003661822021-12-02T08:49:11.764-07:002021-12-02T08:49:11.764-07:00Ugh, Amelia. It is sooo expensive. I'd estimat...Ugh, Amelia. It is sooo expensive. I'd estimate that since I received my MS diagnosis in 2005, over $2 million has been spent on my care. Craziness!Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-64464196180981884442021-12-01T18:06:13.903-07:002021-12-01T18:06:13.903-07:00Glad I found this article. Diagnosed at 49, on DMT...Glad I found this article. Diagnosed at 49, on DMT until 2020. Tough couple of years with husband diagnosis of Huntington’s and handling his exit from professional work along with LTD claim. Now as “unpaid” caregiver having exited my professional career due to MS struggle and need to spend time with husband I need to get back on DMT track. The cost of the MS DMTs really is difficult to understand; especially the generic form of Tecfedera which is the drug I had been taking. I get that drug research and development is an expensive process and that businesses need to make money. Think if prices weren’t so cost prohibitive the majority of MSrs would be on DMT. Frustrating.<br />Amelia Pondnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-8845068099013587142021-10-14T10:45:58.165-06:002021-10-14T10:45:58.165-06:00Bev! Greenspeed makes a fine machine. thanks for t...Bev! Greenspeed makes a fine machine. thanks for the reader tip.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-64615753754730447152021-10-14T10:43:00.474-06:002021-10-14T10:43:00.474-06:00Barb, I'm so glad this found you. And shucks a...Barb, I'm so glad this found you. And shucks about the inspiration. I just do what I can do.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-69117916358535889252021-10-14T10:40:19.727-06:002021-10-14T10:40:19.727-06:00Awe, Angela. I had to put my blogging on pause as ...Awe, Angela. I had to put my blogging on pause as I work on another project, but I'll be back!Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-41918331312212466102021-10-14T10:38:20.549-06:002021-10-14T10:38:20.549-06:00Thanks so much, Angela! So glad you found this lit...Thanks so much, Angela! So glad you found this little group of misfits!Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-51619017051145738062021-10-14T03:50:03.089-06:002021-10-14T03:50:03.089-06:00Long after my diagnosis I was sitting on the couch...Long after my diagnosis I was sitting on the couch next to my husband and he said something that surprised me. He said he was proud of me for not giving up. No matter what MS threw at me I just kept going. (My biggest symptom is vision and loss of vision is terrifying)<br />And what he said surprised me because I never really thought about it before. I just get up every day and keep going. Your posts and humor have been a wonderful discovery and I look forward to your emails. Love your stories. Keep sharing! Angela Butynskinoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-47346733077121454602021-10-14T03:36:44.864-06:002021-10-14T03:36:44.864-06:00Love reading your stories. Thanks for sharing! Love reading your stories. Thanks for sharing! Angelanoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-51758611183952528862021-09-22T15:08:17.049-06:002021-09-22T15:08:17.049-06:00PT Anon, great! Hope you are also a member over at...PT Anon, great! Hope you are also a member over at ActiveMSers so you get the newsletter, which is also funny, well at least one person has said that. I'm also a fan of OTs and will have more of those stories, too! Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-91973714666848297282021-09-21T00:33:37.254-06:002021-09-21T00:33:37.254-06:00I am a P.T.... and have MS. Have spent years roll...I am a P.T.... and have MS. Have spent years rolling my eyes and pontificating on the perils of furniture and (worse) wall walking...you know...resting your palm or your elbow on that wall nearby...because THAT will work..you can't fall, right?<br />But as things progress I find myself doing the same thing as all my patients!<br />Come on, where is the fun if you use an appropriate device all the time. BORING!<br />I laughed so hard at this.<br />This is first time I looked at your blog. I had to join to get a discount on the cooling vest. Glad I read this. Will share with other MS ers! One is an O.T. and she will crack up too!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-26760296161941071032021-08-31T16:43:40.282-06:002021-08-31T16:43:40.282-06:00Dave, you are my Beth😊This really came at a good ...Dave, you are my Beth😊This really came at a good time for me. I’m constantly getting depressed wherever I go. If I’m shopping, watching everyone just walking, wearing cute summer dresses swaying as they walk, dancing at weddings brings me to tears. I m always thinking of how I used to be. I appreciate you writing about this, I’ve never heard anyone relate to that. I’m going to try and stop myself from these destructive thoughts. You are an inspiration to me. <br />Barb, Myboomermind.comBarbhttp://myboomermind.comnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-68047729184595232482021-07-29T08:16:38.778-06:002021-07-29T08:16:38.778-06:00Re. Trikes - I bought a Greenspeed recumbent cleat...Re. Trikes - I bought a Greenspeed recumbent cleat style trike almost a year ago.it is a bit pricier than some, but the advantage of multiple settings for the seat height and angle was worth the extra $. It also has pop-off front wheels and the frame folds, so it can be transported in trunk of even a small SUV , Subaru Outback, etc. Five minute setup/breakdown. Very convenient.<br /><br />Bev Bhttps://www.blogger.com/profile/12045046606531853369noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-42562914881028469922021-07-12T09:30:14.494-06:002021-07-12T09:30:14.494-06:00Kay, great story! And waaay too familiar. Glad it ...Kay, great story! And waaay too familiar. Glad it all worked out (despite a touch of bonus stress).Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-57563217544410013622021-07-11T13:12:26.866-06:002021-07-11T13:12:26.866-06:00Ah, the bathroom complication…
I was invited to a ...Ah, the bathroom complication…<br />I was invited to a 4th of July dinner. The friends hosting it were having their 1st post-pandemic-lockdown gathering (15 already vaccinated people on a patio). That week was one of the toughest I’ve ever had: walking was extremely difficult (too difficult to attempt), I was exhausted and overwhelmed by the physical challenges, & I was worried about the heat… So I called my friend to say I wasn’t up to it. But then another friend (a co-host) called and convinced me that if I came with my wheelchair, he’d help me. There were raised thresholds at the house - one going into the entrance, another going down again out to the patio. Okay, with his help, that could be achieved. But then I thought about the bathroom! I made a plan - I’d wear my newfangled UnderCool cooling vest so that I wouldn’t feel overheated. I’d start journeys to the bathroom BEFORE I had to go (I knew the house; I knew the distance I’d have to traverse; I also knew I’d have to get help summiting that threshold every time I went inside. There would be no surreptitious way to leave the patio). Anyway, I went to the dinner party; I had a great time; it was slightly surreal (friends were actually waiting on me… “would you like something to drink?” “We’ll bring you your food…” And, yeah, having to get help every time I went into the house…)<br />But, yes, I was monitoring how much water I drank and hesitating at times just as you did with that beer. And those cooling packs were set right up against my kidneys; I was guessing that might make quick bathroom visits slightly more necessaryKayKhanArthttps://www.blogger.com/profile/00486478653970671310noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-3811910168069575372021-07-08T11:29:46.072-06:002021-07-08T11:29:46.072-06:00STD, we appreciate and understand your vent!STD, we appreciate and understand your vent!Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-47012087033084552642021-07-08T11:26:08.073-06:002021-07-08T11:26:08.073-06:00A decision got made today: No more Contrast. I ha...A decision got made today: No more Contrast. I have terrible veins. Only 1 is accessible for the average vampire. (Even with lots of water) <br />I'm now old enough that they ask for the Creatine test to give the Contrast. So I use the 1, easy vein for the blood test which means there are no easy veins for the MRI Tech.. <br />I'm sure I'll be black and blue for a week and 2 of my fingers are numb. No, they never got the Contrast in.<br /><br />thanks for letting me vent.S_T_Bhttps://www.blogger.com/profile/14883009792232797898noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-360636933737335092021-06-17T11:21:50.022-06:002021-06-17T11:21:50.022-06:00Kim, I hear you! It can be so overwhelming, even s...Kim, I hear you! It can be so overwhelming, even stuff that was so normal before. Third graders?! That would be especially challenging.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-22228788485888545952021-06-15T14:32:49.395-06:002021-06-15T14:32:49.395-06:00This was one of the reasons I had to stop teaching...This was one of the reasons I had to stop teaching. By ten in the morning I was exhausted, overwhelmed, and completely overloaded. This made cognitive function decrease even more than usual, and made me irritable and short tempered. This made me feel like either falling into a fetal position with my hands over my ears and sobbing or just running out of the room. I did the latter a couple of times. Not really great in a class full of third graders. KimJhttps://www.blogger.com/profile/10248681477969513077noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-2035492487174164802021-04-07T10:20:40.446-06:002021-04-07T10:20:40.446-06:00Anon, I get it. MS can affect us in myriad, madden...Anon, I get it. MS can affect us in myriad, maddening ways. Hugs to you. Let's get through this together—this disease is indeed a bugger. Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.com