Larry,
Does your brother see a Movement Disorder Specialist?  That would be the
only thing I know to suggest.
I would like to say that my hat is off to you for your concern, love and
advocacy for your brother.  If there were a "Brother of the Year Award" I
would nominate you.  God Bless you for being "your brother's keeper"!
Debra
----- Original Message -----
From: "Larry Wilson" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, May 17, 2002 12:39 AM
Subject: Parkinson Symptoms......treatment


> Note:  If you have answers to this message send your message to
> [log in to unmask]  I am having trouble receiving from the ListServe.
>
> PD is very frustrating......and I appear to be the one frustrated.  I have
> learned a lot from you but I need some more help. I understand better now
> about PD + and the "look alike" diseases.  Thanks.
>
> My brother is in the 8th year (or more) of PD.  He is 68 years old.  He
has
> all the classic symptoms of PD (see below).  His symptoms have progressed
to
> a state where he needs total care.  PD Dr. just increased his 100/25
Senemet
> to two pills every 4 hours beginning 7:00 am ending 7:00 PM.  He also
takes
> Parolodol 3 times a day.
>
> My question is this:  With the symptoms below that my brother is
exhibiting
> is it practical to think that his quality of life can be improved?  Can
his
> speech be improved with medication?  Can his swallowing be improved with
> medication?  Can his walking?  Is it practical to believe that medication
> can make a difference in his quality of life?  Does anyone out there know
of
> any experience similar to my brother's and was there any improvement in
the
> quality of life?
>
> Thank you for your candid remarks.  My brother and I have had some very
> amusing times...we have had quiet a few laughs...sometimes I cried I
laughed
> so hard.  I did not "baby" him when I was there...but I was careful to
> understand his limitations.  We often walked together and I wheeled him
> outside to enjoy the open air.  I took him to church in the nursing home
and
> he followed the words in the hymn book (from what I surmised).  We had
some
> great times.
>
> Larry
>
> Symptoms are characterized below:
>
> Brother is in Texas with PD in nursing home.
> I am in Georgia.  I have been to Dallas twice within the last 2-3 months
for
> about 7 or 9 days each time.
>
> A.  He is aware of what we are saying and understands.  He cried when my
> sister and I went out to see him recently...when we walked up to him.  He
> understands enough to shake his head "no" or "yes" (yes is hard for him to
> do).  He responded to the PD DR and gave the right responses to his
> questions...or did the correct things.
>
> B.  He uses his arms and hands and easily catches a ball and throws it
back.
> Two years ago you could assist him outside, give him a ball and glove,
hold
> him until he began pitching with someone, let him go and he would stand by
> himself, throw and catch the ball and throw the ball back harder than you
> could.  Quick pitching and he would fall down.
>
> 1.  Brother began PD symptoms some 8 years ago.  When he came to Georgia
on
> business I noticed he walked funny.  I tried to get him to take long
> strides....but he told me he had "gout".  He was shuffling (now that I can
> look back).
>
> 2.  His voice gradually began to get quieter....until almost a whisper.  5
> years ago he was officially diagnosed with PD.  He had fallen for the
final
> time before he agreed to go to the DR.  Three years ago he had a stroke
but
> did not do anything to his legs nor his arms nor his face permanently.  I
> question whether he had a stroke but his wife says he had a MRI to confirm
> that.  Gradually within the 3 years he quietly lost his voice.  When I
> called over the telephone from GA I could hear a whisper at times until
> recently (last 6 months) I could hear nothing.  Six-8 months ago he said
> very loudly "Twister, my dog!"  (meaning to leave his dog alone when his
son
> was teasing the dog).  When the PD doctor saw him recently he ask him to
> speak his name.  John could only "lip" the words, but you could tell what
> was being attempted.
>
> 3.  Four years ago he began having bowel/bladder accidents.  Putting him
on
> the "stool" helped if the right time was selected.  Now he is totally
> "incontinent".
>
> 4.  Four years ago when he came to GA he could not hold a glass in his
right
> hand without spilling the drink from shaking.  We would put it in his left
> hand and it would be better.  (The shaking was not as severe).  When he
was
> put on PD medication his shaking reduced considerable until he could eat
ok
> and drink ok.
>
> 5.  We tried to get him to use the typewriter to "speak" but he could not
> hit the keys properly.  We tried to get him to write but he would start
> normally but trail off into very tiny script that one could not read.
>
> 6.  I cannot get him to use his wheel chair properly because he "forgets"
> how to wheel it.  He cannot use a walker...he falls over it.
>
> 7.  He walks only with assistance now....this has been going on since
about
> 3-4 years ago.  He freezes when he walks with assistance.  I noticed when
he
> goes through the door or gets in close places he stops....freezes and
cannot
> go without prompting and assisting him.
>
> 8.  He drools now...has been doing this for a year or two.
>
> 9.  His mouth forms an "O" when he is having bad days.  On good days...or
> good hours he holds his mouth normally- I thought he had good times when
he
> was "ON" with his medication and bad times when he was "OFF".
>
> 10.  When he is eating he would stuff his mouth and would not (could not)
> swallow.  Finally he got aspirated and got pneumonia and had to go to the
> emergency room.....they did a barium swallow on him and found he was
> swallowing into his lungs - this was 3 months ago.
>
> 11.  They put a feeding tube into his stomach....they use a syringe type
> feeding method.
>
> 12.  When he feels bad or is hurting or is emotional he make a loud yell
or
> noise.
>
> 13.  He appears to have some type of dementia.  However, when he went to
the
> PD DR he understood all his commands and almost stood up by himself.  He
is
> quiet playful....don't know if this is dementia or just himself.
>
> 14.  He does not dress himself.  He did feed himself before the feeding
> tube.
>
> 15.  He has lost considerable weight  - did weigh 175 lbs but lost over 3
> year period down to 117.  He is 6 feet 3 inches. (This is probably because
> he did not swallow enough nourishment.)
>
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