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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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Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 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Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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