The MS Wire

News, info and tips for living with multiple sclerosis

Category: Living with MS

If My MRI is Stable, Why is My Walking Getting Worse?

During a routine exam with my neurologist recently, I asked her a question I’d never thought to ask before: “Why do you order regular MRIs of my brain, but not of my spine?” Interestingly, within a few days of my exam, a Harvard Med School study was released that addressed a similar question: Is there always a link between the level of physical disability in some MS patients and the…Continue Reading

Ocrevus, Hope and a Suicide Postponed

Ocrevus and PML

Several months ago, I wrote a column in Multiple Sclerosis News Today about Andrew Barclay. Barclay died in an assisted suicide in December. He’d had multiple sclerosis for many years. Colin Campbell is a 56-year-old MS patient who lives in Inverness, Scotland. He also wanted to die. In fact, he was scheduled to end his own life, with help, on June 15 at a suicide clinic in Switzerland. But he…Continue Reading

An MS “House” That Lets You Walk in My Shoes

Several months ago, I wrote about a bicycle that mimics the symptoms of multiple sclerosis. Now, I’ve discovered that there’s an “MS House” that allows a healthy person to experience some of what life is like for someone who lives with MS. People walking through the MS House are able to see and feel things from a different, and often difficult, perspective. For a short while, as they walk through…Continue Reading

Getting Help Paying for Your MS Drugs

With the recent approval of the multiple sclerosis drug Ocrevus, I’ve again heard the plea “but how can I afford it?” Ocrevus carries a price tag of about $65,000 a year. That’s not high compared to some other MS drugs, but it can still mean a higher co-pay than some patients with insurance can afford. And it can appear to be totally unaffordable for those without coverage. Unless you know…Continue Reading

MS through the eyes of a “20-something” rapper

I’m an old guy and it’s been a looonnng time since I was diagnosed with multiple sclerosis. Not so for a young man named BJ Baker. BJ is in his late 20s and he was having a very bad day the other day. He was too tired to do a (seemingly) simple cleaning job around the house. So, he vented in the way that other young MS patients would understand.…Continue Reading

ICYM My Facebook Live Chat

We had a great live chat, today, on the MS News Today Facebook page. I had the pleasure of talking about my MS experiences and answering over 200 questions for about an hour.  ICYMI, you can click here to see the video. More of these live chats are planned in the future, so stay tuned.  

Talk With Your MS Doc About Keeping Your Job

You probably talk about multiple sclerosis (MS) symptoms, drugs and therapies when you meet with your neurologist, but I’ll bet that most people don’t talk very much about working. Being able to work, and continuing to hold down a job, is important. I see concerns about this all the time on the online forums where we MS patients hang out. Work should be a part of that medical discussion. In…Continue Reading

Why can’t some MS docs communicate with their patients?

[This first appeared as my column in www.multiplesclerosisnewstoday.com] Browsing through some multiple sclerosis Facebook groups the other day I was reminded of the line from the 1967 movie Cool Hand Luke: “What we have here is a failure to communicate.” These posts jumped out at me: So when my neuro says he wants me to start physical therapy, does that mean I’m going to hear a call from them or…Continue Reading

MS and falling the best way

[This item first appeared as my column on www.multiplesclerosisnewstoday.com] Uh oh! My cat, T.J., is under my feet trying to nibble my ankles as I stumble toward the bathroom in the middle of the night. I know what’s about to happen. As I try not to step on T.J.’S tail, it’s already started. I’m going down. It all happens in about three seconds, and how I handle those three seconds…Continue Reading