News, info and tips for living with multiple sclerosis
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
It’s been a little over six months since I completed Round 1 of my Lemtrada infusions, so it’s time again to ask myself, “How am I doing?” The answer: I’m not sure. For many years, my brain MRI has remained unchanged. I can’t remember the last time I had an exacerbation (something bad enough to require steroid treatments). It was, literally, in the last century. But my walking has slowly,…Continue Reading
This came into my inbox today and I think it’s important to pass it along to as many of us with MS, or another chronic disease, in the U.S. as possible. We may never have another chance to stand in the path of these cuts. Here’s why we’re opposed to this bill: Many families will have to pay higher premiums. If you’re fifty or older, insurers could charge far more…Continue Reading
You can see a recording of this afternoon’s live stream on the MS News Today Facebook page here. I’m sharing my experiences with various DMDs that I’ve used over the past 20 years or so.
I hope you can join me Friday on the MS News Today Facebook page to share experiences using Disease Modifying Drugs. The live stream will begin at 3:00 pm eastern time, 7:00pm GMT, and will run about an hour. Ed
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
“Do you think you’re walking better?” The question came from my wife, Laura. It’s now about 4 1/2 months since my first round of Lemtrada infusions and I’ve had ups and downs physically. The day she asked, I was feeling pretty good. I also think I’ve been sharper mentally than in the past. Yet I wasn’t sure I’d noticed any improvement in my mobility. “I don’t know,” I told her.…Continue Reading
It’s the time of year for travel here in the U.S. Graduations, weddings and vacations are on all of our calendars. Air travel, in particular, can be a real pain for someone with a handicap such as multiple sclerosis. Security, aircraft seats and legroom are all becoming increasingly tighter. I’ve flown quite a bit for business and pleasure, and I’ve learned a few things that make my life a little…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