(This is a message from my mother that she asked me to relay:)
 
 
Thank you for the responses from Alan Bonander and Ronald Vetter (and any
others I may have received since!). To review for other readers, my
question regarded high doses of medication:
 
Pergolide 0.25mg -- 2.75 mg per day
CR Sinemet 200/50mg -- 2200 mg per day
Sinemet 100/25mg in liquid -- 210 mg per day
Ativan 1mg -- 2 mg per day
 
I will give a summary response with a little more detail. John is 53. The
idea keeps recurring that Early Onset is different (and worse). Am I
kidding myself to look for more ways to medicate at this point? It seems
we have been through many of the routes suggested. The 100/10 was tried in
an attempt to reduce the levadopa; John had excruciating mental distress.
The balance did not seem correct. At one time, about three years ago, five
C.R.s with some Pergolide worked pretty well; then we ran into
overdose--and drop-off cycles. We resorted to a liquid mix of Sinemet
given every hour; about 0.25 mg Pergolide and a C.R. Sinemet made it
possible to sleep several hours a night.
 
The liquid every hour worked well and gave a smooth effect for a couple of
years; then it degenerated into "extras" on the half hour. John could not
remember (or organize?) to take the medication himself. The amount needed
per hour matched that delivered by the C.R. 200/50. The change to C.R.s
every 2 hours turned out to be very convenient (as compared to 1/2 hour or
1 hour). At this time John also stopped being able to give himself
medication at night. He had been able to work through a small pool of pills
and bottles laid out. But a few overdoses, waiting too long, and just not
being able to reach the pills ended that.
 
He claims he could keep track of the medication, but in actual fact he does
not totally give himself pills even once in the 24 hours. Giving him the
pills every 2 hours in the day and 2 or 3 hours at night is an improvement,
in some ways, over the situation we had. We tried to lower the Pergolide
to a total of 2.35 mg, but the muscles become too hard and the amount had
to come up again. We break the 1 mg of Ativan in half so that we have a
half roughly for every 6 hours. It fortunately gives relief for very bad
spells. It works in conjunction with the other pills and other sedatives
tried (such as Buspar) certainly do not.
 
How do I manage as caregiver? I have help in half days during the week and
for three nights. I do not wish to appear ungrateful but there is about a
50% or less efficiency rate with having people come in. We tried a live-
in caregiver for 6 weeks but, because she was on duty 4 nights, she slept
in the day and went off entirely on her own schedule. It was worse because
I was locked into one more person's schedule (and the cost was too much).
I am caregiver for a person who is very demanding on my physical and
emotional strength.
 
I have Chronic Fatigue Syndrome. From a condition six years ago where I
often could hardly stand and spent most of the day resting, I have
progressed to a "low normal" state. I manage many things quite well; I used
to teach high school, but cannot function to that extent. I have been home,
resting. When John was home and not as bad as now, the limited activity
level at home seemed in a way beneficial. We seem to be entering a
different plateau now.
 
I have asked for respite care for John (1 week per month would help). It
seems it could be worked out; John feels threatened and doesn't want to try
it. We are working on counselling and moving along with plans. It seems the
only rational approach for my survival. (One question--have people had good
luck with nursing homes and hospitals providing care and especially the
monitoring of the medication--when it reaches this stage?) Should I just
be looking into hospital care period (for now or for the near future)?
 
Thanks, Ronald, for the wish that I find flowers to smell--I do.
 
Thanks,
 
Darlene.
 
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                            Peace... be gentle!