Scott,
Welcome to our little family.  I think you'll love it here on our list.  I
can't provide answers to your questions but I sure am interested in reading
the responses you get.  I have wondered at several of those questions
myself.  I am 46.  I have been symptomatic for over 3 years and finally went
to a neurologist in january of 2001.  A diagnosis of Pd followed and I went
to see a specialist at Duke for a 2nd opinion who confirmed the diagnosis.
I am currently taking 5mg Selegiline a day,  9mg of requip a day (3mg 3xday)
and 3 tablets of Sinemet CR 25/100.  Sounds very similar to you.  But if you
are still working on those meds then I  truly applaud you because i can't.
Well let me take that back, I could handle a job I guess but my 3 children
would have to raise themselves.  The honest truth is even now I sometimes
feel like they are having to do that.  My husband is wonderfully supportive
and does everything he can to help.  The fatigue seems to be the biggest
obstacle.  I don't know whether to blame it on the Pd or the requip or both.
I was managing to work some until my requip was increased.  Now between the
overwhelming sleepiness, the fatigue, the nausea and of course the stiffness
and the "turtle walking" from the PD I just don't have it in me to hold down
a job.  I'd probably get fired anyway - my brain doesn't seem to think very
well these days.  I'm really glad you brought these questions up because i
have often wondered if that seemed terribly unusual.  i have always been a
hard worker, I have liked my jobs and i certainly haven't "surrendered" to
this blasted disease but i just am wiped out!  I never even make it through
my to do list.  I may have a few really great days where i feel "normal" and
move "normal" and i take advantage of them but then I can have several
rotten days when shuffling from room to room is a real accomplishment.  The
thing is i never know which one of those days it's going to be until i get
up every morning which certainly makes planning things rather difficult.  To
be honest i have even been thinking about  applying for SS disability, but i
just part of me refuses to think that i can be disabled at 46!!  But then
realisticall I know this disease is going to get worse over time and since
it takes a year or more usually to ever get approved for disability  then I
guess I need to get the process started.  I guess really it all boils down
to a pride thingas much as i hate to admit it!!  Anybody ahve any feedback
on the pros and cons of going ahead and filing for disability?
I am also interested in knowing at what dosage of Sinemet do the dyskinesia
and things start?  I don't think I can handle any more requip, which just
really leaves increasing the Sinemet.
I have the toe curling thing going on sometimes too.  What is that about
anyway?  i don't have any swallowing problems yet, and i have mild balance
problems but they are controlled well by the meds so far.
Well Scott, i apologize for taking up so much time and space.  Your letter
just really opened up some things for me that I just had avoided asking for
myself.  Maybe we can both get some answers.  I hope so.  Take care!
Debra

----- Original Message -----
From: "Scott Burnett" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, March 10, 2002 2:13 PM
Subject: FIRST TIME USER


> My name is Scott Burnett.  I am 44 years old and was diagnosed with PD
> at the age of 40.  This was after the usual MRI's, bone scans, etc.
> ruling out MS, Ankylosing Spondelitus (I had a marker in a blood test
> that made this a possibility,) and other equally scary diseases.  To
> make a long story short, I'm now diagnosed with young onset PD, and I'm
> taking 4 tablets of Carbidopa25/Levadopa 100 CR, 3 mg of Requip, 5 mg of
> Selegiline and 800 IU of Vitamen E.
>
>         I have some questions that I'm hoping to find out answers to... I
> know that each PWP is different and their case progresses on its' own
> timetable, but generally,
> 1.  At what dosage does the Carbidopa/Levadopa side effects outweigh the
> benefits?
> 2.  How long do people work after their initial diagnosis?
> 3.  I have several odd movements going on: rocking from foot to foot,
> clenching/curling my toes while standing, clenching my teeth, and
> catching myself with my left hand raised (my wife calls this my "Gumby
> pose.)  Are these examples of Dyskinesia or side effects of the
> medication?
> 4.  Looking toward the future, how hard is it to get the California
> State Teachers Retirement  System (CalSTRS) to okay disability benefits?
>
>         I'm also trying to start a young onset Parkinsons support group
> here in Stockton, California.  I'll be distributing flyers to my
> Neurologist this week, and I'm hopeful he'll be willing to pass them on
> to his patients.  Any other ideas on how I can get the word out about
> the group?
>
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