News, info and tips for living with multiple sclerosis
It’s one of those questions that all of us with MS get. And it’s one that most of us with MS don’t like to answer. How do you respond when someone asks you “are you doing OK?” #1 You can say “Yes, I’m fine, thanks,” even if you’re dragging and defiantly not OK, and be done with it. #2 You can be honest about how you’re feeling and open up…Continue Reading
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
About a year ago, I first wrote about something called an Ogo. It was just in the development phase then, but it was the neatest thing I’d ever seen for getting around when your legs can’t do the job. You don’t need to use your arms, either. Just bend in the direction that you want to travel, like riding on a Segway, and off you go. It could be great…Continue Reading
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
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
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
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
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.
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
[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