Hi. I just want to pose our situation - and see what others think
or if anyone has been in this situation.
I know everyones first recommendation is a new neuro - and I'm leaning
towards that myself - but my parents are a little reluctant.
This guy supposedly has MANY PD patients (but I guess the # of patients
doesn't make you a specialist)
Here's the situation (sorry to those of you that have heard it all
before). My dad (74) was dg about a year ago (otherwise generally healthy)
- mostly bacause of leg (calf) pain. He's been through every test in the book
before being sent to a Neuro. He had very little noticeable tremor.
But he could barely walk - the shuffle - and then the small handwriting -
drooling, depression etc. (He started serzone for depression right before
this).
First given Sinemet - at 1/2 tablet 3X a day - he was walking better
but was as "sick as a dog". Nauseous ALL the time - depressed, agitated,
constipated and had these "weird feeling" (which I think might have been a
pre-hallucinatory state) - lost 25 pounds in the first two months. Neuro insisted
he HAD to stay on it and wanted to get him up to 1 tab 3X - but we
KNEW he was worse on the increased dosage.
Finally in July - Mirapex - we begged the N to put him on it - he didn't want
to since he "wasn't stabilized" on the SInemet - but finally gave in in Oct.
First pill of M - he was more alert - less sick and had an appetite -
was able to cut out Sinemt completely. No more constipation too !
BUt again as N insisted he HAD to get up to 3mg/day of the Mirapex - he could
never get higher than 1.5 - now he was dizzy all the time - (orthostatic
hypotension) and sick again - and still not walking that great.
So here we go again - switch to Requip - now THAT was a night mare ...
in the week in bwtween with no drugs - he was sick, dizzy, insomnia, and on
the verge of going crazy (and taking us all with him !). Finally on
as the Requip kicked in - he was able to sleep and not have so much
axiety - but he's still dizzy and nauseous ALL the time - and he's
walking worse than ever - it takes him forever to get to the bathroom
and getting in and out of the car. I'm afraid he's going to fall.
(He's never fallen yet - but "falls" were the reason the N gave for
HAVING to get to the higher dose of M. I think he's more in danger of falling
now than he's EVER been !). He used to walk around the loop (cul de sac)
everyday - but its taking him longer and longer - and its not that far !
I've even noticed he has much more tremor.
He's taking 1.5mg 3x a day (8Am, 4PM and 11pM). But its not like any of this
is a wearing off effect - its ALL the time (And he's been checked for
GI problems etc).
(IVAN: I'm glad to hear you are doing well on Requip - what dose ?_)
Now my question is this : Why does everyone else seem to benefit from
one or more or combination of these drugs and he does not. It seems
that these drugs have worked miracles for some of you - and some
of you have had PD for YEARS and yet still have reasonably happy
productive lives !
Are there people for whom NONE of these drugs help ? IS there something more
the N should be doing/trying ? Something WE can do/try ? My mom
yells at my dad that HE has to do more - try hard and try to live
with some of the side effects. But thats easier said than done right ?
This is all so frustrating for the whole family as you can imagine.
My mom is getting cabin fever cause dad is always too sick to go out
anywhere - (besides he stopped driving last summer).
Dad doesn't believe that anyone with PD works or does anything anymore.
Everytime we suggest something to get them out - he says - I can't do that
I have PD !
A new Neuro is on the top of the list - but I just wanted to hear
some of your experiences with PD and caring for PD-ers.
Do you think getting him to a PD-support group would help or make him more
depressed ?
thanks for all your help.
donna
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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
** New phone # at Hopewell Facility
(609) 818 - 4413
INTERNET: [log in to unmask]
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----- End of forwarded message from Donna A. Bassolino -----
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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
** New phone # at Hopewell Facility
(609) 818 - 4413
INTERNET: [log in to unmask]
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