News, info and tips for living with multiple sclerosis
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
[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
Photo by Mark Kennedy, Chattanooga Times Free Press
[This post first appeared as my column on www.multiplesclerorisnewstoday.com] I’m 68 years old. I’ve had multiple sclerosis since I was 32. I’m not sure where I expected this disease would take me when I was diagnosed 36 years ago but I hoped that it wouldn’t steal too much of my life from me. I certainly never thought of the possibility that I might live to a really old age with…Continue Reading
(This first appeared as my column in www.multiplesclerosisnewstoday.com) “Round round get around. I get around.” I was humming that classic 1960s Beach Boys tune this morning (yes, I’m that old) as I thought about a feature story that I saw on one of the TV networks the other night. The story profiled Cory Lee. Cory has spinal muscular atrophy, which means he’s one of us gimps who get around on…Continue Reading
(This first appeared as my column on www.multiplesclerosisnewstoday.com) Dear Lauren Parrott, I know you’re scared. The fears that you shared in your video blog ring true to any of us who have faced the unknowns of a new MS medicine. I’ve been there. I’ve gone through three major multiple sclerosis drugs over the 35+ years that I’ve been fighting MS. I was a subject in the clinical trial of Avonex;…Continue Reading
(This post first appeared as my column on www.multiplesclerosisnewstoday.com) I thought that I’d finish writing this last night, but I was too tired. Same thing the night before…and I’m sure this sounds familiar to a lot of you. The National Multiple Sclerosis Society estimates that about 80 percent of the people who have MS have fatigue as one of their symptoms. (Only 80 percent? The other 20 percent must be…Continue Reading