Month: <span>April 2009</span>

My wife’s local MS Support Group held an MS Awareness event at our local library. The event started with a style show of clothing designed for ease of use. This was followed by a discussion about healthy eating which was led by a local Registered Dietitian. Finally, a young family practice physician (who is also an MS patient) answered questions for the participants. It was an excellent morning and is a fine example of the value of participating in a local support group.

As I recall the conversations I overheard during the event, I noticed common themes. In order of frequency, first was the concern about doctors who do not listen, second was a concern over medications, and third was the common concern about the cost of medical care. With good reason, these three themes seem to be common undercurrents when patients gather.

I’ve said it before: every person I’ve met with MS has been tenacious, determined and tough. They make most of us without MS seem like whiners. While they may be slowed physically, I’ve not met anyone who let their MS symptoms or their experience of Multiple Sclerosis stop them.

It’s sadly ironic to me, then, that the most common complaints I heard were about issues that are out of the patients’ direct control and are related to medical care: doctors who will not listen, medications and side effects, and the cost of care.

Assuming the stories of helpful doctors who made housecalls and treated patients like they were extended family are actually true, the medical professional has taken a left turn somewhere along the way. I know that’s a generalization, but it seems to be the experience of many.

When the practice of medicine as a profession is turning into a business for profit it must become bottom-line focused. The doctor can’t listen because she has too little time, medications are a two-edged sword solving one problem but causing others, and costs are structured so shareholders receive the best returns at patients’ expense. That’s the world we live in.

The Value of an MS Support Group

The issues I overheard the group members share are actually one of the many reasons an MS Support Group is a good thing for patients and caregivers. A good support group is an oasis where one can relax in the presence of others who share their experiences, advice, knowledge and (most importantly) their support.

Caregiver Tip: Become involved in an Multiple Sclerosis Support Group. It may be one of the wisest things you and the person for whom you care do.

MS Support Groups

During the last weeks my wife’s legs have troubled her. She quit driving a few days ago. Walking is difficult.

I watched her in the kitchen from my chair in the living room as she literally had to think to slowly put one foot in front of the other to walk across the kitchen. (I need to write about how tough and tenacious she and other MS patients I know are in their fight to get things done. I’ve never met an MS patient who was a quitter.)

I told her yesterday that I think we need to visit her neurologist again before this leg problem gets too out of hand. It’s been a couple of years since she’s had an exacerbation so, on the average, it’s time for one. We talked and I mentioned I thought her doctor would prescribe the steroid IV for a few days. She said she dreaded it because of the effects that follow it for two or three weeks.

Easter is upon us so I took my daughters dress shopping today. As time goes by, either I’m getting better at it or they’re growing more patient with me. My youngest walked out of the dressing room in something I thought was too low on top and too high on the bottom. Just as I finished telling her to bend over and touch her toes, a friend walked up and said, “Rick, that is so 70’s. That’s a cute dress.” And that sealed the deal for my daughter. And when we returned home, my wife loved the little dress, too.

Anyway, our shopping done, we were getting in the minivan when my wife called.

“Guess what!” she exclaimed.

“I don’t know. What?” I asked, wondering why she sounded so excited.

“For the last two hours my legs have been fine! I’m walking without my cane!”

Just like that.

So what happened? Was it a random symptom? Is this just momentary relief or will her legs be fine now? Does she need to see the neurologist? I don’t know. I can’t answer any of these questions. I do know she seems more steady this evening and while she couldn’t walk around the block if she had to, I can tell she is walking much better.

This random symptomology is one of the really weird things about Multiple Sclerosis. Unlike symptoms of other things, MS symptoms often seem random. I prefer a more orderly, Newtonian symptomology where symptoms are the consequence of action. Hit your thumb with a hammer and you feel pain. Eat too much spicy food and you experience indigestion. MS isn’t like that.

Living with MS