Jessica,

The Parkinson List Serve serves a purpose.  It helps those that need
information - especially those that have a Parkinson patient - to understand
what they are seeing "in the patient" and they learn to cope with the
symptoms (that are progressive).  The Dr's did not inform the family of the
progressive symptoms so the family did not understand they were looking at
an illness.  They thought it may have been the personality of  John. As time
went on it was "just John".  The List Serve also helps to inform family
members (and the patient) about medications and helps them  observe results
after taking PD medications and other medications that may hinder or support
PD medications.  It is a great place to obtain information - especially for
those that know little about PD and PD medications.  And PD and PD Meds does
not affect PWP's in the same way.  It is like "different strokes for
different folks".  Since I joined the List Serve I have learned a great
amount of information but most of it is far too late for me...and the
family....my brother's symptoms are too advanced. Below is my story.

Brother was diagnosed in Texas with Parkinson's 1998.  Family was ignorant
and so was I about Parkinson.  Dr's did not explain to them (or me) how
Parkinson's affects patient.  All the symptoms of Parkinson came gradually.
He probably had Parkinson's several years before 1998(at least in 1994).
But everyone thought it was just John.  As I remember him in 1994 (when he
came from Texas  to sign the papers for mother's estate) I tried to get him
to walk properly...he had a shuffling type walk.  I was always telling him
what to do...and he was always the boss as we were growing up.  (He went to
Texas and I was in GA so we did not see each other very often).  So I tried
to get him to walk properly...and take exercise to help.  (Did not know he
had Parkinson's nor did the family).  When he fell and bloodied up his face
(bloody nose) his wife and sons finally took him to the DR. and he was
diagnosed with Parkinson's (1998). He had fallen before but never this bad.
The dementia symptoms came on gradually - so gradual that several mentioned
he was acting "child-like" at times ....said it was just "John".  We saw his
right hand shaking violently when he held a glass of ice tea in his hand.
We tried to get him to use his left hand to hold the glass but he did not
cooperate very well.  The ice and tea sometimes went everywhere.  After 1998
we gradually saw his walking degenerate, his voice go from a strong voice
down to a whisper and to none at all.  We began to see him get choked while
he was eating, gorge his mouth with food while unable to swallow very well,
until he finally aspirated (food into his lungs) and got pneumonia.  At that
time (the first time) the Dr's put a feeding tube into his stomach and began
to feed him through a PEG.  He has gotten pneumonia again about 6 months
later.  We saw his weight go from 170 lbs in 1998 down to where he is now at
114.  He is 6 foot 2 inches.  We saw his writing degenerate from a very nice
handwriting down to very tiny characters until you can't read his writing.
There were probably other symptoms but we did not notice those or pay
attention very well - we wee not properly observing.

His wife took him to a general practitioner DR and then to a Neurologist
(not PD Dr.)-and he was prescribed  Sinemet (minimum amount)  Then she
changed Neurologist and he continued to prescribe a minimum amount of
Sinemet.  But the shaking in his hand stopped....but his head continued
shaking though.

It was only after he aspirated and was placed in a nursing home in March,
2002, that we got a good PD Dr. (clinic) to look at him, and by then he did
not "appear" to give much hope to rehabilitating his walking nor his eating
problems-nor his dementia.  We were told his ligaments had "fixed" in his
legs from the inactivity at the nursing home and he probably would not be
able to walk again (he had been assisted by family members to walk prior to
that time).

Now at the nursing home he does get walked periodically with the help of a
large male nurse's aide.  His son walks him also when he travels about 90
miles to see him.  He goes home on the weekends, but his wife is having
trouble managing him by herself.  She has to work full-time.  He is 68 and
she is 62.  The nursing home aide's throw the ball to him, he catches it and
throws it back....over and over again until the aide gets tired and has to
quit (has other duties).

I left out many things - I joined the Parkinson's List Serve about a year
ago.  (Much too late - now I understand what we should have understood years
ago).

Larry



----- Original Message -----
From: "Jessica Combes" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, October 16, 2002 5:03 PM
Subject: Parkinson's experience


> Hi My name is Jessica and I am a nursing student at the University of
Vermont. I am doing an assignment for a class in which I am to join a
support group for Parkinson's disease and observe how this group is helpful.
Is there anybody who would mind sharing thier experience and how they have
felt this listserv may be supportive to them?? Thank you. Jessica
>
>
>
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