Larry,
My thoughts are the same as Charlottes! Try to get your brother to a
Movement disorder specialist to revaluate. His PD has rather progressed
very rapidly. It does not sound classical PD.
Emily
----- Original Message -----
From: "charlotte A mancuso" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, June 28, 2002 3:34 AM
Subject: Re: Need more insight on brother in Dallas Texas


> 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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