Dear Barb:  There are many interesting things happening in the world of
visual cues.  This is both in problems associated with akinesia, freezing and
festination and in problems of dyskinesia.  What you saw or didn't see on the
NEXT STEP program was actually taped about three months ago.  Since then some
very interesting observations have been made including putting on a pair of
glasses when in dyskinesia and have your dyskinesia disappear almost
immediately.  Not only does the dyskinesia disappear but the facial mask
disappears, arm swing returns, walking is normal, and mental acuity returns
(that caused by dyskinesia).  What is being raised are a lot of questions
that the research community has never been asked.  Our eyes may be the source
of much of our problems.  As you already know, our eyes need dopamine.  It is
thought that this dopamine is also reduced in PD.  How much and the effects
are under study.  Wouldn't it be wonderful if someday we would start the day
with some eye drops?
 
As to SSRI's I am not very knowledgeable.  We hear a lot of negative and
possitive results of the use of Prozac for non-PD patients.  If one looks on
the medical BB on AOL you will find many people commenting on the use or
abuse of Prozac, Paxil and zoloff.  We do know that seratonin is out of order
in PD.  We also know that lowered seratonin levels may cause some PD symptoms
and may cause depression.  With these being the cases, it would make sense to
take a medication that raises the levels of a deficient neurotransmitter.  I
take Paxil, 20 mg, daily.  It lowers my sometimes angry temper and makes me
more tolerant of my PD symptoms.  Here is the results from one user of
Prozac.
 
"HI ALL! I just wanted to add a good word about the wonderful effects I have
gotten from Prozac in the last 3-4 months. I am always UP and sometimes I run
into a situation that use to throw me into a depression. I can recognize the
trigger but I no longer follow up with the old result. I only take one a day
I really am acting more like a normal person. I have become enthusiastic
about walking. DON'T FAINT! Whenever my husband asks if I want to walk down
at the
beach, I am not grumpy about it but cheerfully say yes and we have stepped up
the length of our walks even. Today we walked 4 miles.
My husband is so proud of me and I am proud too.  I know Prozac has received
a lot of bad publicity but my Neurologist said it
is the best medicine that has come out in 50 years and I'm a believer. But I
think the best medication in the last 50 yrs is Sinemet
signed _________"
 
As to the use of cyproheptadine hydrochloride for the control of tremor.
 This is a very low profile study.  This drug is dirt cheap but still
requires a prescription.  So far it is showing about an 80% success rate.
 Following is an E-mail from an excited user.
 
"Dear Alan,
_____  is having some success with the cyproheptadine-the first med in a long
time other than Sinemet that he's found useful and that seems to have mimimal
side effects. Thanks so much for the suggestion! Do you know exactly how it's
being administered? He's been taking it, under the tongue as you said, 2-3
times a  day, a.m.,p.m. and in between when he remembers.
Gratefully, ________"
 
There is a lot in the newsletter.  Some information is implied because I was
not able to say directly the true statement. There are people in this world
who think they are doing a great service to the PD community.  From the
inside looking out, some of these people are actually doing a disservice.
 However, when confronted with facts they run for cover.  My objective is to
enlighten the PD community about the problems and ask the PD community to
vote by their pocket books.   This is very difficult to do without hurting
someone.
 
Sometime ago on the PD list service a lady wrote from England about the
allocation of money between "to find a cure" and "to ease the burden."  We
need to help those suffering from the disease and their families and at the
same time search out the cure.  The lady from England did a very find
analysis of the problem and I will refer those interested to read her
message.  (I think it was a lady.  If I am mistaken, I apologize.)
 
Yes, I am tried after putting out the newsletter.  Messages like yours and
the many calls I get tell me it is important, well read by patient,
carepartner and researcher.  It is not always the popular point of view or
the sugar and candy side of PD.  I have been told for ten years that a cure
was just two or maybe three years away.  I no longer believe it.  The cure is
maybe five to ten years away; however, in the mean time, new drugs, surgery,
treatment will be available.  This is important in easing the burden.
 
Regards,
Alan Bonander  ([log in to unmask])