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
>
