Hi.
I've been lurking for a few weeks now - I'm, finally getting around to
my intro.
I'm Donna, my dad was diagnosed with PK last Jan - he just turned 74 in June.
His situation is kind of curious. He has hardly no tremor - but his problem
is his legs. His leg pain - cramps were getting much worse. Everyone just
assumed it was arthritis - but when pain killers didn't help and he kept
saying it wasn't in the joints but in the muscles is when we started the
treck to a number of DRs. His GP started with an orthopedic who confirmed
that it was not arthritis. Next was a vascular specialist and a number of
tests which showed everything was clear. Finally a neurologist who noticed
his gait - his smaller handwriting and the drooling and diagnosed PD.
Although no tremor ? Do any of you have these symptoms ?
He was put on Sinemet - 25/100 (i think) three times a day - plus phys therapy.
But the Sinemet made him very sick - he stomach was constantly upset and he
didn't want to eat. He also had these weird feelings and could not sleep.
So the N cut him back to 1 in the AM half at lunch and half with dinner.
He also has a sleeping pill - I forget what that is - Surmontril ?
I should add that before this he was diagnosed with depression -first
he was on Effexor and then switched to Serzone. He's still taking the
Serzone - but is still depressed. The N and his GP say that depression and
PD are often linked.
I don't think he's doing very well at all. His legs still bother him -
his stomach is still upset and he's still depressed. He has a few good
days - but they are far between.
Margie's description of Dick as lethargic , foggy (fugue !) and depressed
fit my dad perfectly ! He doesn't do much besides sit in his rocker - and
watches the clock till its time for bed. Its sad - he used to have a lot
of interests (including cooking/stained glass/woodwork/gardeing etc).
Now all he says is that he's too sick. My mom gets mad cause as she
says plenty of people live years with PD (as many of you are evidence -
your fortitude amazes me sometimes !). But obviously that doesn't make
him feel better. He begs me to get him help - but I don't know what
else to do. Can I really take him to the emergency room ? or will they
just send us both home (with more pills ?). Call his Dr's ? Force them
to DO something ? Is there something to DO ?
We were thrilled by Margie's description of her energizer bunny ! My
mom read that and now thinks Mirapex is going to be a miracle and
talks about all the things they are going to do next summer "when
daddy gets better". He's supposed to see his N in mid Sept and we
pray that his results are half as good as Dick's.
Last week we had a scare - in the middle of the night I hear my mom yelling
at him (they live with us - but in their own 4 room apt attached to our
house.) He got up to go to the bathroom and his legs got stuck (a 90 degree
angle at the knees) so he couldn't walk back to bed. She's yelling at
him to straighten up and walk - but it was clear his muscles were
so tight that he could not straighten them. Not knowing what else to do
we gave him a Sinemet. (some comments on the list indicate that
might actually make this situation worse - but in his case it seemed to
help). The next day he was back to his regular shuffle. But I also think
it scared him - cause he's been more depressed than ever.
My mom (74) is his primary caregiver and is extremely active for her age
she could probably outlast me (we call HER the energizer bunny). So this
has been difficult for everyone.
Does he have to live like this ? Should we drag him back to his Dr.s -
find a new Neurologist ? This guy seems good and was recommended by his GenP.
as experienced with PD. A hospital ? What should we do ? How much
should we expect HIM to do ? The dr's tell him he has to push himself and keep
busy - but he says he's too sick (who are we to tell him he's not ?).
Anyway - this list has been great - I've gotten a lot of info ... and a lot
of connections. I've also been inspired by the way you guys can still
laugh and joke and carry on and still work and everything.
(I like the "i think I can" story). My prayers are with you all.
BTW - I'm a biophysical chemist at a major pharm co - but unfortunately our
Neurology research is at another site in Connecticut - so I can't get much info
there either.
Please feel free to write to me - on the list or directly - I may be a little
slow at getting back to you since this is my work account ... but I will.
Donna
(daughter of PD dad 74/0.5 !)
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- Donna Bassolino-Klimas, Ph.D.
Bristol Myers Squibb Pharma. Res. Inst.
Department of Macromolecular Structure
P.O. Box 4000 Room H3812
Princeton, N.J. 08543 4000
(609) 252 4413
INTERNET: [log in to unmask]
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