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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.
       
       
 (TXT) [0] Progressive Supranuclear Palsy