Lori....

I strongly agree with  Janet's advice, but would suggest Gerald be
seen by a MOVEMENT DISORDER SPECIALIST (a type of neurologist
rather than just another generalist neurologist.

If you live in an area where there isn't a large selection of
specialists to chose from, you might contact a  university with a
teaching hospital, if one's nearby.

Good luck....

Barb Mallut
barb_,[log in to unmask]

-----Original Message-----
From: janet paterson <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Wednesday, August 25, 1999 4:49 AM
Subject: Re: adv stages vs end stages? / too much too soon too
fast


>hi all
>
>At 05:32 1999/08/25 EDT, lorrie wrote:
>>Hi all,
>>Since December I've been helping my mother take care of my
>>stepfather with PD.   He has REALLY gone down hill in the
>>last year, let alone the last month.
>>5 years ago he was working and more or less asymptomatic.
>>10 months ago he got a cane,
>>8 months ago he got a walker,
>>4 months ago he got a wheelchair,
>>and now he can't perform any of the 5 activities of Daily
Living.
>>When he's doing well he can feed himself...for a little while.
>>What is this stage called?  end stage?  Where are we in the
>>stages of Parkinsons?
>>We know it is going very fast, but realize we don't know very
>>much about how this terrible disease ends.  Should I call his
>>daughter in Europe who plans to come see him in December?
>>We've been successfully fending off pneumonias from swallowing
>>problems, still combatting urinary infections, and dementia.
>>Transfers have become very difficult for him.  He can barely
>>stand while we reposition ourselves to complete the transfer.
>>Sometimes he goes into a strange mode during the exertion of
>>a transfer:  he gets glassy eyed and stares into nowhere...
>>can't hear us or remember during that time.  We usually seat
>>him quickly and wait for it to pass...it takes about 1 to 5
>>minutes. Is anyone familiar with this?  It's been going on
>>for about a month.
>>Tonight was kind of scary.  He was doing well and we went out
>>to eat.  We took a bus with a lift so no transfers were
necessary.
>>He ate pretty well but 4 or 5 times during dinner he would grab
>>the table with all his might and grit his teeth.  I thought it
>>resembled someone grabbing something to steady themself when
>>dizzy, but maybe it was pain, maybe it was a different kind
>>of tremor.  We asked him but wasn't able to get much response
>>as to what was going on.  Even afterwards.  The scariest part
>>to me was once when I asked what he was feeling, what was he
>>experiencing....he said "Light" or "Life"....we're still not
sure.
>>anyone familiar with this kind  of reaction?  Is it a tremor?
>>Is there anything we can do to help him during it?
>>Anyways, Thanks for listening...and please be frank on where
>>we are with this and what to expect.
>>Lorrie step-daughter/PT caregiver to Gerald   78 yrs/71 at
diagnosis
>
>
>lorrie
>
>i will be very frank:
>
>what is wrong with this picture?
>
>1. the speed of deterioration
>2. no details of gerald's med intake
>3. no details of gerald's medicos and their qualifications
>
>what is right with this picture?
>
>1. Lorrie, step-daughter, found us and wrote to us
>
>lorrie,
>i am not belittling your situation
>i am stunned by it
>
>i can only say that i suspect very strongly
>that what gerald is suffering from is not from the pd
>but from the meds he has been prescribed
>which begs the question - by whom?
>
>i would advise very strongly
>that gerald's symptoms and med intake over the past two years
[minimum]
>be analyzed by another doctor or two or three
>however many it takes to find
>one who specializes in pd
>and has lots and lots of pd patients [i.e. happy customers]
>
>what you have described
>reeks to me of drug-induced psychosis
>[lots of details in the list archives -
>if you want help digging it out, just ask me]
>
>there is a ton of ignorance out there about pd
>in all fields of endeavour and in all walks of life
>
>it is not only a sad situation
>but also a dangerous one which can be fatal
>as we have witnessed here in this group
>
>please please
>get gerald to another doctor
>
>and please read joe's story
>it's on my website in the pienet section
>i consider it requuired reading for anyone associated with pd
>
>
>janet
>
>janet paterson
>52 now / 41 dx / 37 onset
>po box 171, almonte, ontario, canada, K0A 1A0
>a new voice: http://www.geocities.com/SoHo/Village/6263/
>[log in to unmask]