The following message appeared on Aug 22 from Bev McNeil:
<<<<<
I am the caregiver as my husband who is 54 years old has had Parkinsons
for 11 years and have managed to cope with it quite well considering.
However recently he has started to experience some of the side effects as
a result of his medication  i.e. 14 Sinemet 25/100 per day and 16
Bromo 2.5 per day (very costly) and normal progression of the disease
which is causing very difficult problems.
 
On our last visit to our neurologist we asked for some alternatives and or
changes such as new or different drugs and his only suggestions was the
Pallidotomy in Toronto.
 
We would appreciate some opinions, options, comments etc. from others to
help us make some sort of an informed decision and also help us as well as
others take a more active role in our own health care.  There has to be
some viable alternatives such as new drugs which control the damage
being done and maybe even slow the progression.
>>>>>
 
I am about the same age and have been diagnosed about the same length of
time.  I am learning that things told me back at the time of diagnosis were
not true or should I say have been proven to be false.  I was told Sinemet
was not harmful, but very beneficial.  I was told depression was the result
of having a chronic illness.  I would get over it as soon as I accepted
 Parkinson's.  Finally I was told that science knew so much about Parkinson's
that a cure should happen in the next couple of years.
 
The following is some of what I have learned while waiting for the end of the
second year with the cure..
 
A. You were 43 when diagnosed.  So I will put you in the Young-Onset group.
 This group has different response to PD from those with normal or late
onset.  By true definition Young-Onset is given to those diagnosed or having
their first symptom in the 20 - 40 age bracket.  Normal onset runs from 50 -
65 with Late-Onset being over 70.  If PD appears before age 20 it is called
Juvenile PD.  You will note that 40 - 50 is not assigned and 65 - 70 also.
 Individuals in these age groups can go either way.  Often Young-Onset is
often defined as 20 - 50 as most in the 40 - 50 range tend toward
Young-Onset.
 
B.  You are currently taking 14 Sinemet 25/100 pills.  This turns out to be
350 mg of carbidopa and 1400 mg of levodopa.  The general rule I follow is
that carbidopa should be in the range of 75 - 150 mg daily with a maximum at
200 mg.  What many experience as they ingest higher and higher amounts of
carbidopa is that the levodopa no longer is working.  If they actually add
more pills they could turn quickly to an OFF state.  If they reduce pills the
same thing seems to happen.  I call this problem a carbidopa toxicity
problem.  It is unknown if carbidopa actually passes thru the blood brain
barrier.  But the system has so much carbidopa that other (unknown to me)
systems must be malfunctioning.  I would suggest using 10/100 pills.  I would
suggest starting with 2 of the 25/100 followed by 10 of the 10/100 and
finally ending with 2 of the 25/100 pills if needed.  It is my guess you will
not need the last two pills and your carbidopa will be 150 mg for the day.
 
C.  You are currently taking 16 Parlodel 2.5 mg pills.  When I took Parlodel
these little white gems cost about $1 each.  Many specialists on PD will say
that Parlodel is most effective for normal and late onset PD.  Permax
(pergolide) is more effective for Young Onset.  Permax works a little
differently than Parlodel (this was pointed out in a recent posting).  I was
taking 12 - 15 Sinemet 25/100 and a handful of Parlodel when I switched to
Permax.  Because of the use of Parlodel, I did not do a month of startup.  I
started on the 0.25 mg Permax the next day.  I found that I could replace a
Sinemet 25/100 with a 0.25 Permax.  This brought me down to 6 Sinemet 25/100
and 6 Permax 0.25 mg daily.  I think my schedule was one of each every three
hours.  This made the Sinemet start to work again and some of the roller
coaster effect I was experiencing leveled out.
 
I might add that since you have been taking high doses of carbidopa, your B6
should be non-existent.  I would recommend taking 50 to 100 mg of B6 just
before bedtime.  This is very cheap.  I paid about $4.00 for 100 of the 50 mg
size.  That is a three month supply.  The use of B6 is currently in the UPF
Newsletter.  I have not seen it yet.  I have been taking B6 for about 4
weeks.  I find I sleep better and longer, am less depressed and have been
able to reduce daily medication about 10%.  Not bad for a $0.04 pill.
 
D.  I have had a pallidotomy.  As wonderful as they are, most of the top
pallidotomy centers will first adjust your meds more or less along the lines
of the suggestions I have made.  If you are still experiencing wild
fluctuations from an OFF state to an ON state with dyskinesia, you will be
the ideal candidate for the surgery.
 
Regards,
Alan Bonander
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