Friday, September 21, 2012

When the doctor's news is scary

By Ed Wall

The celebration is almost a secret, compared to Halloween and the Fourth of July, and I wouldn’t want you to miss it. October is the time for 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 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 so is its name. Specialists and researchers now agree to 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 50s or 60s. My diagnosis came when I was about 75. By then I had been dealing with some of the symptoms for many years, but formal diagnosis is not easy. Most doctors devote a lifetime to medical practice without ever 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 nudged me into using a cane, followed by a walker and a rollator, and finally a power chair.

When MSA begins to attack the nervous system, one or several symptoms appear. Victims may find it hard to chew or swallow. They develop strategies to try to avoid falls. They may stop sweating. It can be hard to keep forks and coffee cups steady, hard to talk clearly, especially on the phone. There may be tremors, aches, sleep disruption, disobedient bladders, trouble bending arms and legs and blurred vision. There may be episodes of confusion or depression.

Getting MSA is bad luck, but 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 my computers and books in a condo shared now with a feline who thinks my shuffling is just a game.

I gave up driving when I realized that if I couldn’t see straight I might not drive straight.  My nearby family includes half a dozen licensed drivers, who see to it that have everything I need. Beyond that, Orland Township provides low-cost door-to-door transportation for citizens of a certain age – beyond the age of consent into the age of the content.

I think God encourages people work out some things for themselves, so my prayer is that a smart person is close to finding a cure right now.

Meanwhile, I’d like you to know how much your relaxed and ordinary support means to a person trying to absorb the scary news about any demanding disease.

Your support for medical research is important, too, 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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