The MS Wire

News, info and tips for living with multiple sclerosis

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“Crip Camp” Brings me Face to Face With Disability

Crip Camp

In early July, I wrote a blog post about Disability Pride Month. It’s not for me, I said. I questioned the word “pride” and asked whether we need a special month to advocate for a more inclusive world. Several people commented on that column — some supported my thoughts, while others were critical of what I wrote. A woman named Danielle wrote a particularly strong comment ending with: “I think…Continue Reading

Disability Pride Month? Not for Me

Disability pride month

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

COVID-19 and MS Treatment Recommendations

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

Really tired? Most People With MS Are

really tired

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

Zeposia Becomes Latest Weapon in the MS Battle

Zeposia fights MS

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

Is This an MS Flare I’m Having?

having an MS flare?

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 Laptop Needed a Weekend

Giving my laptop a weekend

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

Epstein-Barr and MS: Another Link Reported

Epstein-Barr and MS link

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