News, info and tips for living with multiple sclerosis
I’d just gotten out of bed the other morning and was headed to the bathroom using just one cane when I tried to step over a dog toy on the floor. I went down slowly onto the carpet, so it was really no big deal. No harm, no foul, but I should have been using two canes, and I should have been more careful. I should know how not to…Continue Reading
July is Disability Pride Month. Now, don’t flame me right away for writing this, but I don’t think we need a month highlighting disability pride — just like I don’t think people with MS need a month in October spotlighting rare diseases. MS is invisible but, with more than 2.3 million people carrying that diagnosis, it’s not rare. Disability Pride Month seems to have started as Disability Pride Day, which…Continue Reading
It’s been a few weeks since I’ve written about the impact that COVID-19 is having on people with MS. Since then, the picture has changed — not a lot, but enough for the MS International Federation to modify its observations about, and recommendations for, people with MS and our disease-modifying therapies (DMTs). The treatment equation for COVID-19 and MS is complex because of the dynamic nature of the way this…Continue Reading
Are you tired? Really tired? Me, too. Most of us with multiple sclerosis are. How many really tired people is most? A small new study of 44 people with one of the progressive forms of MS found the answer is a little over 86%. (I’m surprised the number isn’t higher.) Those people described their fatigue as “tired,” “exhausted,” “wiped out” and having “little or no energy.” Half of patients reported…Continue Reading
I have some new MS treatments to tell you about. The first is Zeposia (ozanimod) . By my unofficial count, it’s the 19th disease-modifying therapy to become available in the U.S. to treat multiple sclerosis. The Food and Drug Administration approved Zeposia in late March. Pharmaceutical companies usually rush to put their newly approved medications in doctors’ offices. But this time, with COVID-19 raging, Bristol-Myers Squibb wasn’t in a hurry.…Continue Reading
Sitting down to write this, it’s hard for me to concentrate. I’d planned to write about some new MS mobile apps, but I can’t get my brain to focus on the task. I’ve been bragging about how I’ve been feeling sharper and better able to concentrate over the past several months, but not today. Distractions are more distracting than usual. For two days, my legs have felt weaker than usual…Continue Reading
My favorite line in the “Downton Abbey” TV series, uttered by the dowager played by Maggie Smith, is “What’s a weekend?” When you’re retired, if you’re working as a freelancer, or if like me you’re doing both, it’s easy to forget what day of the week it is. It’s also easy to work seven days a week. The stay-at-home mandates of COVID-19 have extended this problem to many people who…Continue Reading
More support has been added to the belief that a connection exists between the Epstein-Barr virus and MS. Epstein-Barr is one of the most common viruses, and most people become infected with it at some point in their lives. Frequently, it appears in childhood as infectious mononucleosis, or mono. In a very young child, its symptoms may be minor or unnoticeable. Over the years, many studies have looked at a…Continue Reading
I canceled my April blood draw. The protocol for Lemtrada (alemtuzumab) requires lab work each month because the treatment can have serious side effects. But I spoke with my neurologist and we decided that I could skip it. Blame it on COVID-19. My legs are stiffer than they were two months ago. My walking is slower. I’ve postponed my semiannual neurologist visit. Blame it on COVID-19. But my decisions have…Continue Reading
It’s comforting to have this guy, with his floppy ears, stretched out next to me as I sit here writing about my MS. I don’t know why but the fact that Joey, who is really my wife Laura’s cocker spaniel, has chosen to nap next to me is special. I’m not usually a softy for this kind of thing and Joey can be a real pain in the neck when…Continue Reading