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RLS:  One member of our support group with bad RLS has dropped Zoloff and is
now on Wellbutrin.  His RLS is gone.  I do not offer reasons, only one
observation and he is very happy to have it gone.
 
Melatonin:  I use a brand called Melatona.  The tablets are of 3 mg size.
  When my mind is runnning at 110 miles per hour and the rest of my body
wants sleep, I will take three tablets (9 mg) with water.  I than run for the
bedroom less I fall asleep too quickly.  There is no B6 in this brand.  It
shows only "pure" Melatonin.  I do not use this every night, only those
nights when my mind needs to calm down.  I have never experienced any side
effects with Melatona nor is it adictive.  I can buy 60 3mg tablets for about
$16. at a local health food store.
 
 
Just for the record, Dr. Matt Kurth at Barrow Neurological Institute is a
neurologist.  The neurosurgeon is Dr. Andrew Streeter.  They are very
conservative when it comes to surgery in PD.  Dr. Streeter is using the
technique developed at Emory.  The rumor I here is that Emory is finding that
age is a factor in the result of the pallidotomy.  The word I here is those
under 70 years of age seem to do  much better than those over 70.  What I do
not know is how much of this is due to the length of the  procedure.  The
microrecording can take 6 to 10 hours of surgery before any decisions are
made as to lesion placement.  At 54, I would find this stressful.  Contrast
this with 55 minutes for my pallidotomy in Sweden, I can see why Dr. Laitinen
has performed this surgery on older people.  The older we are the more likely
we have other problems of aging.  These other problems can over shadow PD
symptoms.
 
In a separate posting I will list the centers performing Pallidotomy /
thalamotomy that I know about.  The list continues to get longer and longer.
 
I have just started a low impact exercise program that exists at the local
senior citizens center.  It meets three times weekly for an hour.  The cost
is $0.50 per session for residents of the city and $0.75 for non-residents.
 One is assumed 55 years old ( I am 54).  This is proving out to be an excella
nt exercise program for me.  Don't overlook this resource for education and
exercise.
 
Finally one comment about the pallidotomy.  At my last young-onset support
meeting I showed the video of Prime Time Live.  No one at the meeting had
seen it on TV.  I tried to tell them they would see PD in very advanced
stages.  It is not nice to see the ravages of PD.  One member told me he was
in shock.  He had to deal with the emotions that someday he may look like
these patients.  I did not do as good a job as I thought I had in preparing
the members for what they would see.  I know that many at the meeting never
got past the problems shown by these PD patients.  I would like to believe
that those diagnosed in the last few years will have a better alternative to
pallidotomy should their PD progression become bad.  Better medications, gene
therapy and the unknown will greatly benefit those recently diagnosed.  On
the other hand, those of you who are recently diagnosed, we need your energy
to asure proper funding for research exists.  You have the most to gain by
research.  You also have the most energy.  Please do your part  to actively
seek increased funding by the federal government for neurological research
and in particular Parkinson's research.  The life you change, may be yours
(and hopefully mine).
 
Regards,
Alan Bonander ([log in to unmask])
 
PS: AOL offers a discount for AARP members.  Do GOTO AARP for details.