Re: Fifth birthday

[Ervin McCarthy <ervinmccarthy@xxxxxxxx>]

David thank you for your response. Could you please tell me your progression
of Sinemet pre operation was and what you considered too high dosage. Thank
you

----- Original Message -----
From: David Moreland <davelm@xxxxxxxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Sunday, May 28, 2000 2:34 PM
Subject: Re: Fifth birthday


> At 02:39 PM 5/28/00 -0700, Ervin McCarthy wrote:
> >David, always great to hear an optimistic story.  Good for you and God
> >bless.
> >Give us the rest of the story with details of operation and drugs, with
> >details of preoperation symptoms and results, and age. Also who did the
> >operation and where?
> >
>
> I was diagnosed with PD in 1988 at the age of 45. right of the bat an
> incompetent neuro prescribed too much sinemet. I wasn't complaining
because
> everything seemed great in those first two years. i did not at that time
> know any better so i kept taking much too much Sinemet. By the time i was
> seeing a Competent neurologist I was already experiencing dyskinesia. The
> new Neuro greatly cut back the amount of Sinemet I was taking. I was also
> taking selegoline. All the while my Dyskesias kept geting more intense.
> Finally by about 1994 I would have Dyskinesias that would have me on the
> floor flailing about for up to three hours. By this time i was hearing
> about Dr. Iacoca an the successes that he was having with pallidotomies.
> Then at a Parkinson's symposeum I heard Dr Steven Gancher say that a
> pallidotomy would relieve Dyskinesia.
>
> Wait,  here is somthing I wrote about the experience a ew years ago. in
> fact this was shortly after my Pallidotomy.
>
> First I am 52 years old  and was diagnosed  with Parkinson's Disease
(PD)i
> n early 1988.  It was devastating  to me than as I was 45 years of age. I
> was in  denial for the first year after my diagnosis. I was from the first
> over medicated partly due to my ignorance and partly due to an incompetent
> neurologist. So from about the second year I was troubled with
> involuntary movements  caused as a side effect from the main  PD drug
> Levodopa . This movement is called dyskinesia. After several years
> parkinsonians develop distinct  on-off effects. That is when the
medication
> is working  for the person, he/she is said to be on. When the medication
is
> worn off they are said to be off. Sometimes this line between  off and on
> is very narrow.  Going from on to off can happen very quickly like a light
> switch. I finally got to where I was either off or dyskinetic. There was
> little middle ground. I was to the point that I was going to go on
> disability.
>
> But, thank God for Dr. Kim Burchiel. I now have an excellent neurologist,
> Dr. Sheila Sund. She referred me to the movement disorders clinic at
Oregon
> Health Sciences University (OHSU) in Portland for evaluation. The Dr.
> there, Dr. Stephen Gancher, agreed that I was a good candidate for  a
PVP.
> He referred me to see Dr. Burchiel on July 18, 1995. This was the middle
of
> May. I could hardly wait. When the day finally came Dr. Burchiel discussed
> the procedure with me and agreed that I was a good subject. The scheduled
> time was
> August 21, 1995.
>
> I anticipated that date like a little kid anticipates Christmas. Time
> wouldn't pass fast enough.
> When the surgery date came I was first fitted with a steriotactic  frame
on
> my head. It was fitted with an MRI localizer  and sent to MRI (should I
> tell about the insurance screw-up and the almost postponement of my
surgery?
>
>
>  Then after some waiting the surgery began (it was about 9:30 am). I felt
> just a little pressure when the Dr. drilled the insertion holes, but no
> more that that. During the procedure they kept asking me questions like
> what was my name, where did I think that I was at, count to ten. Then when
> the first lesion was placed the Dr., told me to raise my leg and to raise
> my hand and hold them steady. I was able to do it with out any trouble.
> Then in less than 30 minutes the other lesion was placed. The frame was
> removed  and I was wheeled back to my room. I slept soundly for about four
> hours. I had hardly slept the night before.
>
> After the PVP I have had no dyskinesia, my medication works for me
> (5-25/100, 6- 25mg Permax per day)
> I have full use of my hands and legs with very little. Stiffness. I just
> feel like I've been given back my life. The one down side is that my
speech
> is affected to a small extent. I will take that. In the morning prior to
> taking any meds I still shuffle when I walk. Would I recommend it. YES!,
> for anyone as plagued with dyskinesia as I was.
> This was some of my experience.
> David Moreland
>