Dear Alan: You are so right in saying taking drugs for PD (or other chronic
diseases) is an art, not a science. Please do elaborate.
I am still fighting Ekbom Syndrome (Restless Leg Syndrome). It seems that
Sinemet CR is the only thing that really works and you know what that means
over the long haul with Sinemet - ON/Off - dyskinesia - loses its efficacy.
Besides the usual symptoms of PD reappearing, the painful shocks and spasms
of RLS will become constant. I'm not sure I will be able to take it. I may
have to try marijuana. The usual treatments (other than Sinemet) for RLS
just don't seem to work for the severe type. The guess is that there are
about ten million Americans with RLS - one million with the severe hard
(impossible?) to treat type. People with PD don't get RLS at a rate any
different than other people. Thank goodness! PD and RLS together are
difficult to deal with - mentally and physically.
I think it is about time for some reports from patients who have had
pallidotomy. Nothing much has been mentioned after the initial cheers of the
first six months.
Best regards,
Barbara Yacos
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