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Dear Don:
 
Thanks for the info re Hydergine.  None of the usual stuff  helps my RLS
(restless leg syndrome).  I even stopped taking Sinemet for a day recently,
thinking that  might be the culprit - it wasn't, and the constant leg shocks
and spasms didn't let up for a minute until I started taking Sinemet again.
 I just hate being addicted to levadopa for PD and yet another disease.  I
take 50 mg Sinemet every three hours around the clock.  RLS is that bad.
 
Interesting that you wonder what effect a pallidotomy would have on RLS.  Dr.
Laitinen said it would not be impossible to get substantial improvement
because most PD patients get relief from muscle cramps and sleep improves -
and since levadopa helps RLS it may be logical to think that also pallidotomy
would have similar effects - it makes patients more sensitive to L-dopa.
 
RLS is a progressive disease like PD and even less is known about it.  I've
had a mild case since high school days.  It was getting worse before I had
the pallidotomy (right side).  It disappeared  after the pallidotomy.   It
started up again last fall.
 
I was talking  to a neighbor who said she had RLS (no PD) for years and one
day it just disappeared completely.  I've read that.  I wish!!!
 
Me?  Loma Linda? Pallidotomy on second side?  It is tempting as it would give
me  matching sides.  However, I could not get an MRI as I'm too
claustrophobic.  I had a CAT scan in Sweden and that did just fine.  I'd need
to take levadopa the day of the procedure as I don't believe I could keep my
legs quiet.  You told me once that this wouldn't be a problem.
 
I just talked to Moira in Halifax.  Its been almost three weeks since Dr.
Iacono did her bilateral pallidotomy and she feels fine.  Peter told me she
pinches herself as she can't believe how well she feels.  She went to her
support group yesterday and they were amazed  at her improvement.  She wore
high heels for the first time in years.  She is tired and sleeps a lot but
that is expected - I slept a lot too because it was so wonderful to stretch
and turn in bed and to be comfortable and get cozy.  And what a pleasure to
hug softly again.
 
Is pallidotomy an answer to treating this miserable PD?  You bet your life it
is.  We don't know yet how long the benefits last, and  we do find some
little regression, but I don't mind putting up with a little voice slurring
or drooling when I'm tired, and if all came crashing down tomorrow I know,
and my family knows, I had a wonderful 25 months.  Who knows - maybe we'll
get a few more good years.  Every good day is a bonus.
 
Best wishes,
Barbara Yacos