“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 recently. The story profiled Cory Lee. Cory has spinal muscular…
The MS Wire — Ed Tobias
People say to write what you know and Ed Tobias knows about MS. He’s lived with the illness since 1980, when he was 32 years old. Ed’s a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.
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This is my 823rd column for Multiple Sclerosis News Today. It is also my last. Over the past seven and a half years, I’ve written about multiple sclerosis (MS) fatigue and frustration, about treatments and travel, about neurologists (good and bad), stress,…
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 multiple sclerosis medicine. https://www.youtube.com/watch?v=eS9-nSfvgSI I’ve been there. I’ve gone through three major multiple sclerosis drugs over the…
I thought 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 about 80% of the people who have MS have fatigue as one of…
“… in 3 years we went from living decent not rich to poverty and will prob have no utilities soon and maybe homeless.” An MS patient wrote that after I posted Part I of this column a few days ago. “I went threw (sic) all of our savings…
I’m not asking for your money. (At least not yet.) But I’ve recently seen a lot of news stories about MS patients who are. Multiple sclerosis battler fights for $200,000 treatment Or… Fundraiser for Deanna Or… Burbage dad’s £50,000 appeal to…
It’s happened to us all. You arrive at a business and discover there are steps at the entrance. A few years ago my wife and I arrived to check-in to a 4-star hotel near The Wheel in London, and discovered that there were a dozen steps at both of…
One of the MS blogs that I follow is written by Jen, who lives in England. It’s called Tripping Through Treacle. Doesn’t that neatly sum up the lives of many of us in just three alliterative words? From MS newbies to old-timers like me, we worry (or have worried)…
Most of us who live with multiple sclerosis also live with a disease modifying therapy (DMT) — a drug that, we hope, will positively modify the course of our disease. One of the earliest of these was Avonex, a weekly injection into the muscle. I was one of those…
My neurologist calls Lemtrada “HSCT lite.” She says that not only is the drug able to reduce exacerbations and limit the overall progression of multiple sclerosis, it’s actually reversed some symptoms in some of her patients. I guess I’m going to find out if she’s right about…
I made a trip to the dentist today. What does that have to do with multiple sclerosis, you ask? Stay with me. We’ll get there. But first, let me tell you about a weekend conference that my local chapter of the National Multiple Sclerosis Society held recently. One of…
I’m filling in for Ian Franks this week on news item picks for Multiple Sclerosis News Today while Ian is in Moscow taking the first step in his HSCT (hematopoietic stem cell transplantation) quest. We wish him well. Virus Linked to Respiratory Infections May Also Trigger Brain Diseases…
Osteoporosis (fragile bones) is only a women’s problem, right? Wrong, especially if you have multiple sclerosis — as I’ve discovered. Osteoporosis causes bones to become weak and brittle. A fall that probably wouldn’t harm a healthy person can easily break the bone of someone with osteoporosis. When the…
Have you tried Pilates to improve your mobility? When my wife and I tried it, a few years ago, I thought that it was sort of like doing yoga stretches using exercise equipment. It felt good and, for the short time that I did keep it up, Pilates seemed…
It’s that time of the year. Drug insurance companies in the U.S. are making changes to their formularies — the list of drugs that your insurance company will pay for. Those formularies change from year to year so you need to be alert to changes that may impact your…
What should be done about stem cell treatments? Are stem cells safe? Do they work? Do stem cell clinics need more regulation, or less? With some studies reporting encouraging results from using stem cells to treat a number of diseases, including multiple sclerosis, the number of clinics around…
I hate to admit it, but I’m getting kind of old. That’s not to say that 68 is really old, but I’m probably older than a lot of you who are reading this. I’m also 36 years old in “MS years.” I was diagnosed the month that Ronald Reagan…
You don’t see people with disabilities very often in television ads. And when you do, the person with the handicap is usually playing a secondary role or the ad uses the disabled person for an emotional appeal. It’s not real-life. It’s not us. So, a tip of my hat to…
A post on another website, asking about whether it was wise for someone with Multiple Sclerosis to receive the shingles vaccine, caught my attention the other day. “Have any of you had the Shingles vaccine? I’m still debating about it. I’m concerned about insulting my immune system…
Tripping, falling and bloody knees. Been there. Done that. (Who with MS hasn’t)? But this wasn’t me. This was Cheryl Hile and it was happening to her as she was running a half marathon in Carlsbad, California. Cheryl had been running marathons for half a dozen years when, in…
Anyone with a chronic medical problem knows how expensive drugs can be, and how a drug that you need can be here today … gone tomorrow on the list of drugs that your health plan will pay for. You also know that cost and insurance coverage aren’t the only…
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