By
Ed Wall
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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