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Yen,

I take exactly the same medication that you take, 6 Sinemet 25/100, 3
bromocriptine 2.5 mg, and 1 seligeline 5 mg per day, and it has a similar
effect.  I break two of the Sinemet tablets in two and take them about
every 1-1/2 hour.  The difference is in years.  I am 63 and was diagnosed
4-1/4 years ago, although I had significant symptoms for several years
before that.  Also, I still have my job.

Although I never get so off that I can not move, I do get pretty slow.
Sometimes I can not move the mouse.  My writing is illegibly small.  I can
not select a single paper from a small pile.  I have dystonia and cramps,
mostly in my feet and legs.

Many people have the same symptoms, and I can live with them.  My symptoms
come and go, not only as the medicine kicks in and out, but also from week
to week or month to month.

 The biggest problem I have is the dyskinesia I experience when I have not
taken enough medication on just the right time schedule.  It happens both
just before the medication kicks in, and as the medication wears off.  It
happens in my toes, feet, legs, and pelvis---especially in my legs.  It is
chaotic rather than rhythmic.  It can get pretty violent.  It is worse when
I am sitting down, so when it happens I stand up, but that does not stop it
completely.  The dyskinesia is not entirely involuntary:  with effort I can
reduce it somewhat, but at times I can not stop it completely.  I try to
have it not happen at work.  When it does, I stay in my office and hope
that no one comes in until it goes away.

I mentioned to my neurologist that I was having trouble turning over in
bed, and that I was not getting enough sleep at night.  He prescribed
Sinemet CR 50/200 in addition to the medication listed above.  I tried it
once and didn't get any sleep; the dyskinesia was at times quite violent
and it lasted almost all night.  Some of it may have been a peak-dose
dyskinesia, which may be different from my usual coming-on or wearing-off
dyskinesia.  I have not taken any of these pills since then.

The dyskinesia seems to have come when my PD progressed enough that my
neurologist put me on the bromocriptine in addition to the 6 Sinemet 25/100
I was taking at the time.  The few times I have forgotten to take my
evening bromocriptine, I had a quiet night and slept better than I
sometimes do after taking my usual dinner dose.  But then the Sinemet I
took the next day was not enough to prevent the dyskinesia, and I had a bad
day.  I have not yet sorted out the confusing evidence and come up with an
entirely successful medication schedule.

One thing I have learned is that there is a strong correlation between the
effectiveness of the levodopa I take and when I eat.  There is a lesser
correlation with what I eat, although fruit does seem not to reduce the
effectiveness of the levoddopa at all.  Most other foods contain a
substantial amount of protein---even vegetables.  The protein increases the
concentration of amino acids in the blood stream, and the amino acids
compete with levodopa for transport across the blood / brain barrier.
 Probably the most effective competition is from tyrosine and to some
extent phenylalanine , which are amino acids with similar or somewhat
similar structures, but other amino acids may also compete strongly.

I suspect that the transport across the blood / brain barrier is probably
the rate-limiting process in the levodopa pathway.  I have not tested this
hypothesis with careful experiments, but what I have observed seems to be
consistent it.  The trouble is that I do not know what to do about it.

Baldwin, 63/4

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From:  Yen Hau
Sent:  Monday, October 06, 1997 6:52 AM
To:  Multiple recipients of list PARKINSN
Subject:  How to solve the "ON" and "OFF" problem?

I am a twenty-seven year old parkinson patient. I was diagnosed I have
this disease two years ago.  I have been taken 6 Sinemet 25/100
per day, bromocriptine 2.5mg three time per day, jumex(selegiline) 5 mg
one in the mnorning.  However, I have this significant "on" and "off"
effect happen that influence my daily function.  I was forced to resign.
Somehow, the sinemt that I took after meal doesn't turn me "on". The
side effect, excessive movement cause me a lot of trouble.
Does anyone have similar symptons as I do?  Please share your experince
with me!!  Thanks a bunch!


Yen

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