Typo error on first try.  Sorry.
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Forwarded message:
Subj:    To: Ilan Feuchtwang
Date:    95-07-06 20:27:53 EDT
From:    JRKramar
To:      [log in to unmask]
 
From Jan Kramar <JrKramarxaol.com
My sympathy to you, your father,  and especially your mother.  One
consolation that helps me get through hard times is the knowledge that I am
not alone. We Caregivers lean on each other.  My husband is 69, a retired
missionary,  grew up in a rural irrigated area drinking canal water,  also
used some strong anti-diarrhea and anti-athlete's foot meds rather liberally.
 Had at least one long exposure to household pesticide.  High stress in
driving in Lima, Peru, traffic,  narrow mountain roads with narrow escapes,
and extreme trauma in having to commit a mentally ill (violent) friend to
prison.
     We have had some rough times with frequent urination.  In the past as
many as 10 times in one night.  We tried condom catheter, which works for one
man in our support group,  but not for us.  Poor memory and the ability to
get himself up at times led to dragging the bag across the floor on the way
to the bathroom. :-(    Then we went to a urologist who prescribed oxybutynin
for a trial.  After one week Glenn had foul breath which he had never had
before,  and the med had not helped anyway, so we stopped that.
     The past four months we have kept a strict schedule.   I should mention
that our major discomfort is end-of-dose dyskinesia,  so what works for us
may not work at all for you.  By giving 1 Sinemet CR 50/200 and 1/2 Sinemet
Regular 25/100 5x/day,  at 6 AM,  1045,  1530,  2015,  and 0100,  Glenn
usually sleeps from 9 or 9:30 until 1 AM and from 1 AM until 5:15.   I vary
the 1 AM dose according to the time he wakes up, from 12:15 till 1:30.  I
keep the daytime doses fairly regular by giving the 1/2 regular Sinemet
earlier than the CR if he shows signs of restlessness.  It seems to me that
the restlessness that comes to him from being low on dopamine is part of what
makes him need to urinate more frequently.
      I also keep the mealtimes regular,  at about 7:30, 12:00, and 5:30 and
serve low protein meals (mostly vegetable protein) spread as evenly as
possible throughout the day.  Food really interferes with his absorption of
the dopamine.
     He used bromocryptine and eldepryl for two years.  We had to stop them
in 1993 because of the hallucinations.
      We have not tried clozapine because we already have trouble enough with
low blood pressure.  Our neurologist sent us to a psychiatrist who prescribed
mellaril (generic name thioridazine), but he cannot take much (1/4  to 1/2 25
mg. tablet, usually at bedtime.)
     We still have plenty of problems,  the most disconcerting being the
hallucinations and dementia,  but at least we get two fairly good stretches
of sleep at night and a good PM nap.
      From reading the PARKINSN list,  I have an idea that our medication
dosage is on the high side.  I wish I could cut it down.  But the other night
he had leg-jerking and extreme restlessness (he calls it "heebie jeebies")
from 8:30 until 1 AM  even though I finally gave him what I thought was extra
1/2 regular at 10 PM.  It was as if he had not taken his 8:15 dose.  He had
not.  We found it the next morning at the bottom of his water glass on the
dining-room table!
      None of this may help you at all.  But at least you know we are
listening.    I hope for better days ahead.  Jan