Debra,
thanks for the e mail. I really feel good that I'm not alone here.
I'm anxious to get a support group going here, but for the time being
the list is going to fill that need quite well. I'm also lucky that I
have a great helpmate, my wife. Fortunately or unfortunately I bought
a new book a few days ago, When Parkinsons Strikes
Early by Barbara Blake-Krebs and Linda Herman. I have to
say, the book scared the heck out of me, and it led me to give a lot
of thought to the future... what do I have to look forward to? What
do my wife and children have coming down the road at them? I think
all my talk to my wife about my fears really scared her. She was
happy on the one hand that I was finally sharing how I feel
psychologically but was blown away by the worry I was carrying around.
I've always been a "manly-man" who didn't share his fears but I
thought she had a right to know. Now that its out in the open I think
we can make some realistic plans.
I'm going in to my neurologist this week. I'll ask about the
overdosage question (several people wrote and said they thought my
levadopa/carbidopa levels were very high for someone so young. I'll
let you know what he says.
On Sunday, March 10, 2002, at 01:16 PM, Debra Sutton wrote:
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?
----------------------------------------------------------------------
To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
----------------------------------------------------------------------
To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
