Hi,

Is your brother seeing a Movement Disorder Specialist?  When you say PD
Dr., do you mean a general neurologist, or one that specializes in PD?

Because given the information you have provided, some things seem wrong.
For classic PD, he seems to have advanced very rapidly.  I'm assuming
that he is taking 25/100's, 4 times per day, and I agree that is not very
much.  Also Parlodel is the oldest of the agonists.  Has his doctor tried
other drugs and dosages? IMHO, if a patient is doing as poorly as your
brother without increasing the Sinemet and trying the new agonists, and
also adding Comtan to improve the response to Sinemet and increase his
"on" time, then I would say that your brother should immediately get
another doctor, a PD specialist, to evaluate him.  Evaluate him regarding
the specific diagnosis, and his medication prescribed.  Regardless of
whether his Dr. is supposed to be a specialist, from what you have
written, I think he is incompetent, negligent or both.  I seriously
question his diagnosis and/or his medication regimen.

Good luck,

Charlotte Mancuso

On Fri, 28 Jun 2002 00:16:10 -0400 Larry Wilson <[log in to unmask]>
writes:
> Hello all.
>
> My sister-in-law just took my brother to the PD Dr. June 27 and he
> did not
> increase his dosage of Sinemet and Parolodol. John is on minimum
> (sinemet)
> dosage - 4 times a day 7 am, 11 am, 3 pm, 7 pm  John is 6 ft. 2 in.
> and
> weighs 116 pounds.  He is being fed by tube in the stomach since his
> episode
> with pneumonia - aspiration.  John is now too weak to walk, cannot
> talk, and
> has a poor quality of life in the nursing home.  They do not give
> him
> physical therapy.  He has relatively little interaction with anyone
> until
> his wife comes late in the evening after work...she also goes by on
> the way
> to work.  John was diagnosed PD about 5 years ago.  The last 3 1/2
> years he
> had been staying home with a sitter.  Now with this feeding tube he
> has been
> placed in a nursing home.
>
> I have been out to see my brother in Dallas Texas twice within 3 1/2
> months.  When I left him in April he was reading the paper (maybe),
> alert,
> could walk with my help...we walked the corridors up and down...he
> took the
> remote control and recognized he had it upside down and would turn
> it around
> to begin using it....then flip continuously...(probably like I do at
> home),
> shake his head yes or no, smile, make some type of "face", seemed
> alert,
> could catch a ball and throw it back very hard - continuously and
> not tire,
> could squeeze my hand very hard...to the point of hurting, could
> latch onto
> my arm and would not let go....we had some good times together...but
> he
> could not talk, could not walk without help, and would not cooperate
> with
> the nursing staff.
>
> I tried to get him on physical therapy before I left - again.  He
> had been
> on it but they said he had "reached his peak" and they had to take
> him off
> Medicare Physical Therapy.  They agreed to put him back on if I
> demonstrated
> how I walked him.  I took the two physical therapist (both women)
> and had
> them watch while I got him out of bed, got him up, and walked him.
> The two
> physical therapist looked frightened while I got him up. The "long"
> and
> "short" of it was that they could not do any more for him because
> they could
> not do physical therapy  with John and he threatened them
> apparently.  I
> asked for a male therapist and they said that was out of the
> question.
> Consequently, John is not getting any exercise.  He is not active.
> In my
> opinion the two physical therapist were incompetent. But one was the
> head of
> the "company" that contracted with the nursing home.
>
> The question.  If John has severe PD shouldn't he be taking more
> medication
> than what he is?  According to the PD doctor his shaking is not
> noticeable...present medication seems to be doing the job for
> shaking.  So
> he did not increase the medication.
>
> John has had all the classic symptoms of PD.  Age 67. 1) Shuffling
> of feet
> since 1994. 2) voice gradually reduced in volume until no voice even
> though
> he appears to "lip" words, 3) Gradually lost his ability to walk.
> 4)  His
> handwriting would be large until it "tailed off" to a very small
> scribble,
> 5) His shaking of the cup of drink would spill he was shaking so
> much (the
> shaking apparently has been controlled), 6) could not swallow very
> good from
> 1998-9 until now (he would get food backed up in his mouth and would
> finally
> swallow too much and choke. 7)  his head used to shake but now I
> believe he
> is too weak to shake it 8) Began to swallow into his lungs so he had
> a
> stomach tube put in.  9) He has lost weight from 170 down to 116.
> He now
> appears to be very weak.
>
> It would appear John has classic PD - and severe.  And medication
> does not
> appear to make any difference.
>
> We are going to try to get him into a PD clinic in Dallas (I thought
> when I
> left they were going to do that but the Clinic would not give John
> the DR
> requested - so his wife cancelled the appointment.
>
> Does anyone have any thoughts that could make a difference?  Being
> in
> Georgia I cannot get out there very frequently.  I have gotten some
> good
> ideas from your comments....but it appears I am the incompetent one
> in
> attempting to put all of this together.  Question in the back of my
> mind -
> am I being a realist?
>
> Thank you,
>
> Larry
>
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