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When the doctor's news is scary

A rare disease is looking for a cure. World MSA Day is all about multiple system atrophy, in Orland Park and everywhere.

By Arthur (Ed) Wall

The celebration may not be very noisy, and I wouldn't want you to miss it. October 3 will be World MSA Day. Multiple System Atrophy (MSA) is a rare disease, experienced by fewer than 15,000 persons in the whole USA.

Given the fact that there are nearly 700,000 doctors in the USA, you might think the relative handful of MSA patients have hit the statistical jackpot. Not true, because not even one of those doctors has a cure for it. Not yet.

It is painful enough that the disease is progressive, but even its name progresses. Specialists now call it MSA, but when I was diagnosed more than a decade ago my neurologist told me I had olivopontocerebellar atrophy, which he called a form of Parkinsonism. Not your grandpa's Parkinson's, but Parkinsonism.

Now it is known as multiple system atrophy. Nobody knows the cause, but it is usually diagnosed in men in their 50's or 60's. Mine came when I was about 75. By then I'd been dealing with some of the symptoms for years, but diagnosis is not easy. Most doctors devote a lifetime to medical prctice without encountering a case.

I had trouble walking straight, and began using a walking stick when I was 55 or so. Dizziness and a Charlie Chaplin gait eventually nudged me into using a cane, then a walker and a rollator and now a power chair.

When MSA begins its attack, one or several symptoms appear. Victims may find it hard to chew or swallow. They develop strategies to avoid falls. They may stop sweating. It can be hard to keep forks and coffee cups steady, or to talk clearly. There may be tremors, aches, sleep disruption, disobedient bladders, trouble bending arms and legs, and blurred vision, among other exasperations.

Getting MSA is bad luck. I've had the good luck of an outstanding neurologist and fine primary care doctors, all pulled together by a supportive family, friends and neighbors.

Thus, at age 87 I still enjoy life among computers and books in a condo shared with a feline who thinks shuffling feet are part of a game. My prayer is that a smart person, somewhere, is close to finding a cure right now. Your support for medical research is important, and not just on World MSA Day.

Olivopontocerebellar atrophy/multiple system atrophy is hard to spell and hard to pronounce. So let's find a cure.

                   

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kym Crowe September 19, 2012 at 01:53 PM
<3 love this article...My mom is 59 and has MSA-C...Keep up the fight to find a cure...Hugs from Spokane Valley, WA....and from Kym Crowe msaawarenessbracelets.weebly.com
Arthur Wall September 19, 2012 at 02:01 PM
Best wishes to you and your mom. MSA is awful, but your Spokane region is beautiful. Aloha, Ed
Pamela Johnson September 20, 2012 at 02:22 AM
Great article. I have yet to find one of my friends who know what MSA is let alone know there is a MSA day in Oct. My husband was dx at the Mayo Clinic in MN 2009. He is now 58 and getting very week along with extreme fatigue. He is in Hospice. We have great family support. We live in Everett, WA
Arthur Wall September 20, 2012 at 10:33 AM
There's no medicine quite like family support. Family, friends and health care people keep MSA people humming on the inside even when we're mumbling on the outside.
Dee Madlener September 20, 2012 at 02:45 PM
Dear Ed, I passed along your information to my GP. Maybe it will help in diagnosing someone else in the throes of this dis-ease.

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