Note: Post contains later stages of PD descriptions.
My Dad was diagnosed with "Spells" last month. In retrospect we realize
that he has been having small "spells" since last summer. They aren't'
quite like the ones that others have described. He becomes completely
limp - no tremors, no shaking, like he is in a very deep sleep, not at
all stiff. He is unresponsive - we've pinched him, run our finger nails
across the soles of his feet (!) and twirled q-tips in his nostrils! No
response. These things were suggested by the neurologist - we aren't
naturally this sadistic! His BP is low during these "spells".
They last from 15 minutes to an hour. Last month we took him to the ER
and they did brain scans and see no evidence of irregular brain patterns
or of a stroke. The doctor says that the elderly just have unexplained
spells sometimes.
Last summer he had a small spell and the home health nurse called it
"Parkinson Crisis Syndrome" - just another stage along the progression of
PD. She said that she has seen it in many of her PD patients in the
later stages - HOWEVER, I asked John Cottingham to do a search on this
syndrome and I asked the list, and no one else had ever heard of it. I
also asked our two neurologists and neither of them had heard of it
either. I suspect that it is indeed a stage of later PD - but I have
found that as we get further into this disease no one really cares about
what is going on - no one in the medical community that is. It is
really interesting to talk about the dramatic improvements in the younger
patients who receive pallidotomys and other cool treatments - and don't
misinterpret - I'm excited that the outlook is better for them than it
was 25 years ago for my Dad.
But when we take him to doctors or to the ER - they look at you like "why
are you bothering us with this old man who really shouldn't be alive
anyway?" I want to shout "Look into his eyes! My dad is still in there
somewhere!" The ER incident ended with the resident suggesting that we
sign a DNR (do not resuscitate) for dad and next time just let the spell
run its course. Easier said than done - but it is the right thing to do.
Two days after his "spell" he was literally running around the living
room chasing my 3 year old with his walker. She was beeping the bicycle
horn that we put on his three-wheeled walker and he feigned outrage and
the chase continued for about 20 minutes. He was laughing, and then
enjoyed some tears as he said - "She is so cute!" I wouldn't trade
those moments for the world!
I guess this post was more appropriate for the care list. Sorry for the
digression. I guess I needed to write this for therapeutic value.
Sara Byron
daughter of Richard, 79/28 yrs with PD
Naperville and Hinsdale, IL - beautiful and sunny, Spring just may show
up soon!
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