Ed Tobias,  —

Diagnosed with MS in 1980 at age 32, Ed has written the "MS Wire" column for Multiple Sclerosis News Today since August 2016. He presents timely information about MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “The Multiple Sclerosis Toolbox...Tools and Tips for Living With MS." Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.

Articles by Ed Tobias

Volunteers Needed to Make MS Research Project Meaningful

Have you ever wondered how your MS experience compares with others? Your ability to go out and do things? The therapies you’ve used? Your symptoms? Your age and ethnic background? Researchers from the Accelerated Cure Project for Multiple Sclerosis have been collecting this kind information for nearly two years…

Starting Down My Lemtrada Road

Here we go. This is the week my Lemtrada (alemtuzumab) infusions begin. A few weeks ago I wrote about how Lemtrada has been successful in stopping disease progression in folks with relapsing-remitting multiple sclerosis, and those who have transitioned to secondary progressive MS but continue to have relapses. There have…

Beating the MS Clock

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 MS wouldn’t steal too much of my life from me.  I certainly never thought of…

Information Overload Precedes Lemtrada Infusions

You know the saying about having too much of a good thing? I think that’s me, right now, as I think about starting infusions of the multiple sclerosis drug Lemtrada on Dec. 5. Lemtrada is supposed to be a super drug. As I wrote in an earlier…

Have Scooter, Will Travel (Part 2)

My column, earlier this week, about traveling with a scooter, generated a couple of questions. What do you ride? Where did you get it? How much did it cost? Here are a few answers for the group. Less than a week ago I finally trashed my Pride Sconic, which…

Have Scooter, Will Travel

“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…

Letter to a Scared Young Woman

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…

Would You Fund My MS Treatment? (Part 2)

“… 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…

Would You Fund My MS Treatment?

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…

Getting in the Front Door

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…

Brace Yourself for MS

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…

MS Drugs – Who’s Using What?

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…

Are the Benefits Worth the Risks of Lemtrada?

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…

MS, Osteoporosis and Men – What a Guy Needs to Know

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…

Pilates: A Good Therapy for MS?

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…

Is Your Drug Plan the Best One for You?

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…

Growing Old with MS

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…

Laugh with TV Ads that “Get” Disabilities

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…

MS and the Shingles Vaccine: Can They Go Together?

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…

7 Marathons on 7 Continents for MS Runner

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…

Have a Say About MS Drugs

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…

Take Your MS for a Swim

I love the water.  Good thing, since I live at the beach. Being in a swimming pool is also good therapy for my MS. It strengthens my core and arms and, when I do a little pool walking, my legs feel a bit stronger.  But, I’ve never done any…

Doc Leaves MS Patient ‘Horrified’ … and Me Too!

The other day I received a very troubling direct message from someone on another Multiple Sclerosis website: “I was diagnosed with MS in 2004 but, foolishly, dismissed it. Other than bad spacisity [spasticity] and a few little episodes, I was relatively symptom free. That is until…

Multiple Sclerosis Fatigue: Puzzling over the Jigsaw

Feeling tired?  No surprise there.  Fatigue is as much a part of living with Multiple Sclerosis as sand is a part of the beach where I live. It’s interesting, then, that neurologists seem to have no good system for measuring levels of MS fatigue or any treatments that are…

Dancing Doodle

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