Jim Devor's comment on PSP caught my eye. My wife (age 32), has Post Stroke
Parkinson's. Allow me to introduce ourselves to the board...
Lynn suffered a cerebral hemmorage in Oct 89 due to a congenital blood vessel
malformation which spontaneously bled. Five months of hospitalization and a
couple years of physical, speech and occupational therapy passed with Lynn
improving but still in a wheelchair, needing assistance for dressing, personal
needs and unable to safely care for herself. An experienced rehab physician
recognized her gait and lack of arm swing and perseveration as PD symptoms and
suggested Sinemet. Four days after beginning the meds, Lynn woke up speaking!
That was Aug 93. Today Lynn no longer uses the wheelchair and can swim and
walk and speak at length on the telephone...
Medically, a magnetic scan revealed a dark spot round abouts the substantia
nigra very central in the brain on one side. This tissue/region formerly
produced the L-dopa. It is expected that she will not get worse in time but
unlike PD patients early in the disease course, she has zero L-Dopa on one
side. It seems a threshold of L-Dopa is needed to provide her "on" time and
when the levels drop, within minutes her facility falls to a point of
difficulty in speaking, walking, posture maintenance, and concurrent increase
in her frustration. It is much like running out of gas, 4 times a day.
Sinemet has made a huge improvement in our lives. But, smoothing out the
positive effect and lengthening the ON time are goals we are working toward.
Lynn uses 50/200 Sinemet CR every 4 hours and supplements with 25/100 Sinemet
tablets, sometimes dissolved in orange juice. Since she learned about dietary
protein competition for Sinemet uptake in the intestine she has lost a few
pounds preferring ON to full.
We have found great friends in a local Young Parkinson's Support Group. The
monthly meetings provide a time to learn from each other and to teach the new
members that come each month.
Could someone or Jim Devor define PSP for us?
Daniel Kidd [log in to unmask]
_______________________________________________________________________________
Subject: Re: "Parkinson's Plus"
Author: Parkinson's Disease - Information Exchange Network
<[log in to unmask]>
Date: 8/18/94 4:58 PM
I am the son of someone who has been diagnosed with "atypical PD"
and found your post to be most informative. At one point, PSP was
considered but my father does not have the ocular paralysis typical of
that disease. Now, I'm left with little guidance as to what exactly his
condition actually is and thus, the "atypical PD" label. Would you be so
kind as to point me to any other books, articles, Web sites, *etc*.
regarding the conditions you described. Thanks a lot for the material
you have already provided and any other info you might be able to share.
Jim Devor
[log in to unmask]
P.S. I will never again leave unchallenged snide remarks about AOLers on
the Net
