thanks for putting me into your loop!  Your doc had you on more stuff 
than I'm taking!  I know surgery is down  the road, or at least I assume 
it is, but at this point I'm postponing my nervousness about it with the 
hope that I can get the med thing a little better under control.  Which 
of the DBS surgeries did you have?
Scott
On Monday, March 11, 2002, at 09:14 AM, Deborah Henderson-Setzer wrote:

> Scott,
>
>  You ask good questions!  I'm sorry that I don't have "the answer" for 
> you
> but I can share what did/has/is happening in my journey with PD.
>
> 1.  At what dosage does the Carbidopa/Levadopa side effects outweigh the
> benefits?
>
> I don't think there is a magic number for this.  For me, when the dosage
> caused the side effects that were worse than the PD, I started looking 
> for a
> doctor to do a DBS.
>
> I was dx w/PD in July 99 and started on Sinemet in Dec. 99.  I did not
> develop dyskenisia's until July 2001 at which time I was taking Sinemet 
> CR
> 50/200 5 X day + Sinemet 25/100 3 X day, Eldypryl 10 mg 2 X day, Comtan 
> 200
> mg 5 X day, Mirapex 1.5 mg 3 X day, Sonata  30 mg per night, Vitamin E 
> 1000
> IU per day divided into 2 400 IU and 1 200 IU dose, 1 multivitamin and 
> I'm
> sure there is something that I left out.  It is hard to say with the 
> drug
> cocktail that I was on which caused what. I know that the Eldypryl 
> cause me
> to have terrible short-term memory problems.  I was a real space cadet.
> Stopping it helped but I was still very very tired all the time yet I 
> didn't
> sleep at night.
>
> 2.  How long do people work after their initial diagnosis?
>
> I started going to the doctor looking for what was wrong with me in 
> October
> 97.  Looking back, my symptoms began in 1992.  I worked until August 
> 2001.
> My PD wound up being MSA and progressed rapidly in 99,00 & 01 but
> ironically, since the DBS and its removal and stopping all PD meds 
> except
> for Sinemet CR 25/100, 2 in the morning and 1 three more times during 
> the
> day supplimenting with Sinemet 25/100 as needed, I am doing a lot 
> better.
> The rigidity and slowness is back.  I still lose my balance, choke, have
> difficulty sleeping, am tired all of the time, have short-term memory
> problems and have pain but the pain is not as severe and my mind feels
> clearer. I like it best on less medication now that I have something to
> compare it to. But again, this is just me.  Everyone is different.
>
> > 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?
>
> Wow, thanks for joggin my memory.  I almost forgot that my fingers would
> draw into my hands and lock up and I would clench my teeth... don't 
> know if
> this is your meds or not but since the doctor eliminated all of the
> extraneous meds I no longer do this.  I still can't write but my hands 
> don't
> hurt like they used to.
>
>
> > 4.  Looking toward the future, how hard is it to get the California 
> State
> Teachers Retirement  System (CalSTRS) to okay disability benefits?
>
> This I can't answer.  I retired on private disability insurance (they
> started paying benefits in October) and am still battling with Social
> Security.
>
> Debra,
>
>   Disability retirement threw me into a 3 month depression.  My husband
> thought that I should be excited about being able to sit home and do
> whatever I wanted to do and still have income.  To me, it was one of the
> most difficult decisions that I ever had to make.  It felt as if I was
> giving in to this disease, like I was telling the world that I was 
> losing
> the battle.
>
>   I knew that I could no longer continue working.  It had been almost a
> year since I was able to put in a full work week but I also could not 
> face
> the loss.  It was a decision that I knew would have no turning back 
> safety
> net waiting for me.  Who would ever hire someone with PD after they 
> went on
> disability, I would ask myself.  Silly question now looking back on it 
> all.
>
>   If you are seriously thinking about retirement, think about what you 
> can
> do to stay active and feel good about yourself.  Have something set up 
> to
> make up for the loss of interaction with your co-workers and the time 
> you
> will have on your hands.  After the adjustment, retirement at a young 
> age is
> not so bad.  I retired at 39.  I now spend my time writing my book, 
> helping
> others with PD, advocacy and taking care of my husband.  I build 
> computers
> at home, have installed a network in the house and research the net for 
> info
> on PD, meds, DBS and questions that others come up with where they don't
> have the time to find the answers.  I also have joined the womens group 
> for
> my neighborhood and taken over the community newsletter.
>
>   The point I am trying to make is to make sure when you retire you have
> something that will keep you feeling needed, something for your mind to 
> do,
> something that your body is capable of doing.  Disability does take a 
> long
> time to come through and the process social security puts you through is
> totally degrading but if you build yourself up at the same time, it 
> won't be
> a rough.
>
> Debra, never "surrender", just turn "can do" into "can do differently!"
>
> Deborah aka Tenacity
>
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