Ann - the sequel to my story really isn't finished. Here briefly are sone
highlights.
1. We cjhanged my agonist to REQUIP (3 xs/days)
2. We dropped Ambien (sedative) which had been added at nursig home.
3. We replaced Atavar (sp) briefly with xanax, and then wiith valium.
4. We underwent 9 out of 10 "full" acupuncture sessions early last fall.
5. We started back up with body massages (twice per week) shortly after
leaving nursing home.
6. Some strength and energy began to return ca July 2000.
7. In October I had a brief, unexplainable episode wihich was labeled
psychotic. I was in the hospital again for 2 days followed by only one nite
in a different nursing home facility. I credit "Joe's Story" (which both my
husband and brother had read),
my step-daughter's outspoken objection to the place once she had seen it to
Dad, and my own strong appeal to him for not being left alone there.
8. I was started on an anti-psychotic drug, Clozaril, which by law requires
weekly blood tests. (BTW, I learned one of its side efffects is
Rhabdomyolysis.)
9. I lost 7 teeth within less than 4 months, & am looking for the best way
to minimize this often "ouchy" c ondition. A nite guard did not work.
10.. I went off Clozaril about 6 weeks ago.
11. My current meds are Sinemet, Requip, Valium, and Elavil.
12. I 'm told I'm doing better (than what?)>
13. I am concentrating on listening to my body and getting a lot of mental
and physical rest.
!4. I am trying to make changes slowly, and one at a time.
15. We plan to speak to my docs about other med changes once we feel NOT
using clozaril has passed inspection.
16. We are looking at complementary therapies, and hope to concentrate on
breathing and strengtheniing ones next.
Barb
-30-
----Original Message-----
Barb -- Now I remember that you were very ill for quite some time. I forgot
it was the changing of the meds, and your own experience with Comtan. I seem
to remember that you also had swallowing difficulties? Did that resolve
because of your adjustment to a new med regime and schedule?
Ann Gibbons
-----Original Message-----
From: Nancy Dreyfus <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Thursday, September 20, 2001 9:40 AM
Subject: Re: Comtan - my story on why & how I dropped it*
>Can you be more specific about deteriorated? Has he developed dyskinesia
and
>other signs of possible levodopa overdose or is the medication not working
>on his PD symptoms?
>
>> ----------
>> From: Barbara Blake-Krebs
>> Reply To: Parkinson's Information Exchange Network
>> Sent: Thursday, September 20, 2001 9:28 AM
>> To: [log in to unmask]
>> Subject: Comtan - my story on why & how I dropped it*
>>
>> Ann wrote earlier in Sept.:
>> <<
>> My husband has been on Comtan since the end of Aprril. He hates the taste
>> of
>>
>> it and has a hard time getting it down. (Not so wuth other meds). His
>>
>> condition has deteriorated since he began Comtan and we are just coming
to
>>
>> the realization that it might be this med. Has anyone else had a negative
>>
>> experience with Comtan?
>>
>>
>> Ann Gibbons cg Joe 67/4
>> >>
>>
>> I n March 2000 I was struck down suddenly and nearly died from kidney
>> failure
>> broought on by RHABDOMYOLYSIS. At the time my meds were Sinemet,
>> Mirapex,
>> the COMT Tasmar, xanax, and Elavil. In the ICU where I hung out for
>> about 5
>> days, I was given none of them. Whe my doc asked me which agonist I
>> wanted,
>> I said Parlodel (had never tried it); which COMT, I said Comtran, We
>> changed other drugs as well except for the Sinemet.
>>
>> For the rest of the 5-1/2 weeks plus 2 weeks in nursing home, plus more
>> weeks afterward, 9 times out of 10, I ended up spitting up most of the
>> Comtran. inally, I went off it, and made other med changes too -- all
w
>> original doc. In my case it was not easy to drop the COMT med -- in
fact
>> it
>> was h- - - ! Yo u might want to arrange for s unflappable, soothing home
>> health worker to go on this particular journey, if you take it. (true in
>> many
>> cases I now think when making chabges in meds.)
>> __________________
>> *disclaimer This story is based solely om ny personal experience and
does
>> not appear in WPSE partly because it happened after mss was finished,
>>
>> Barbara Blake-Krebs 1984/61 [log in to unmask]
>>
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