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Fathers
October 05th, 2017
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My dad is sick. A few years ago he was nearing retirement and
faced and unexpected layoff. He had until the end of the month to
take advantage of his health insurance before he lost it (don't
get me started on America's crappy health insurance system). So he
went in to the doctor and the hospital and got a full physical.
It turned out he was lucky to have done so because he had three
98% blockages and needed to get a triple bypass immediately. It
was terrifying to very suddenly face his mortality. My family
generally lives into their upper 90s or 100s, so having a life
threatening surgery at 60 was not in my mind. We were lucky and
the doctors were good. He made it through, but something had
changed.
In the following months he made a recovery, but never quite back
to what he was like before walking in. He struggled when standing
for a long time and his legs would shake. I thought he'd atrophied
and needed exercise. The physical therapy helped a bit, but not as
much as we'd hoped. Little by little, he was losing mobility.
I walked with him at a mall around Christmas that year and he kept
getting "stuck". His legs wouldn't start when he told them to go.
I knew something was wrong, and I think he did too, but he didn't
want to admit it.
We finally forced him in to see a doctor and he was diagnosed with
Parkinson's disease. That was a relief in many ways. While there's
no cure, treatments are good and you can live a long active life.
Medicine is actively working toward a cure and who knows what the
future holds. My grandfather on my mom's side had parkinsons for
as long as I knew him. It was just a little tremor of his hand
until he was very old. I could live with that diagnosis and so
could he. That, unfortunately, kept him from looking deeper when
things didn't add up.
As I mentioned, we're a family who has seen Parkinson's up close.
What my dad was experiencing wasn't matching that. The medications
weren't effective, or at least they weren't for very long. He was
degrading much too quickly. His neck muscles were weakening along
with his outer extremities in a pattern that I thought
I recognized from work. I'm in pharmaceutical marketing and one of
the products I've done work on is for ALS. That got me scared
again.
ALS is deadly and unforgiving. The progression is painful for the
individual and for the family. It's fatal and there are not really
any good treatments (even that drug I worked on is barely any
help). I wasn't eager to tell my dad that it's what I thought he
had. He wasn't eager to second-guess his doctor.
It took another year or two like that before he was finally bad
enough that he agreed to get another opinion. We were right and we
were wrong, it seems. He doesn't have Parkinson's, but it's not
ALS either. He has Progressive Supranuclear Palsy (PSP) [0].
The bad news is it's almost identical to ALS. It is fatal and
there are no good treatments. He doesn't have a lot of time left,
and the time he has is going to be extremely difficult. My parents
live a few states away (10 hour drive or so) where we don't have
any other family. I can't offer any support. I'm a little lost on
what to do.
[0] Progressive Supranuclear Palsy
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