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iFathers
iOctober 05th, 2017
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iMy dad is sick. A few years ago he was nearing retirement and
ifaced and unexpected layoff. He had until the end of the month to
itake advantage of his health insurance before he lost it (don't
iget me started on America's crappy health insurance system). So he
iwent in to the doctor and the hospital and got a full physical.
i
iIt turned out he was lucky to have done so because he had three
i98% blockages and needed to get a triple bypass immediately. It
iwas terrifying to very suddenly face his mortality. My family
igenerally lives into their upper 90s or 100s, so having a life
ithreatening surgery at 60 was not in my mind. We were lucky and
ithe doctors were good. He made it through, but something had
ichanged.
i
iIn the following months he made a recovery, but never quite back
ito what he was like before walking in. He struggled when standing
ifor a long time and his legs would shake. I thought he'd atrophied
iand needed exercise. The physical therapy helped a bit, but not as
imuch as we'd hoped. Little by little, he was losing mobility.
i
iI walked with him at a mall around Christmas that year and he kept
igetting "stuck". His legs wouldn't start when he told them to go.
iI knew something was wrong, and I think he did too, but he didn't
iwant to admit it.
i
iWe finally forced him in to see a doctor and he was diagnosed with
iParkinson's disease. That was a relief in many ways. While there's
ino cure, treatments are good and you can live a long active life.
iMedicine is actively working toward a cure and who knows what the
ifuture holds. My grandfather on my mom's side had parkinsons for
ias long as I knew him. It was just a little tremor of his hand
iuntil he was very old. I could live with that diagnosis and so
icould he. That, unfortunately, kept him from looking deeper when
ithings didn't add up.
i
iAs I mentioned, we're a family who has seen Parkinson's up close.
iWhat my dad was experiencing wasn't matching that. The medications
iweren't effective, or at least they weren't for very long. He was
idegrading much too quickly. His neck muscles were weakening along
iwith his outer extremities in a pattern that I thought
iI recognized from work. I'm in pharmaceutical marketing and one of
ithe products I've done work on is for ALS. That got me scared
iagain.
i
iALS is deadly and unforgiving. The progression is painful for the
iindividual and for the family. It's fatal and there are not really
iany good treatments (even that drug I worked on is barely any
ihelp). I wasn't eager to tell my dad that it's what I thought he
ihad. He wasn't eager to second-guess his doctor.
i
iIt took another year or two like that before he was finally bad
ienough that he agreed to get another opinion. We were right and we
iwere wrong, it seems. He doesn't have Parkinson's, but it's not
iALS either. He has Progressive Supranuclear Palsy (PSP) [0].
i
iThe bad news is it's almost identical to ALS. It is fatal and
ithere are no good treatments. He doesn't have a lot of time left,
iand the time he has is going to be extremely difficult. My parents
ilive a few states away (10 hour drive or so) where we don't have
iany other family. I can't offer any support. I'm a little lost on
iwhat to do.
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