ntro
To fellow Parkies,
I just signed up on the PARKINSN list yesterday after urging from others and
getting specific instructions from my PD Support Group (a super group in
Santa Barbara, CA). Barbara Patterson suggested I introduce myself... so
here goes:
I am 52, diagnosed 4 years ago, misdiagnosed 5 years ago ("...too young for
PD, must be a familial tremor..) was working as an R&D Director at AT&T Bell
Labs in NJ at the time. An increasingly demanding work schedule and my
progressive slowness conspired to reduce my hours of sleep to 3-4 a night,
sympotms got worse, I got slower,.. The vicious cycle was broken when, with
my employer's support I gave up my resposibilities at work, moved to Santa
Barbara, worked (telecommuted) as a consultant, used up many deferred
vacation days to delay a disability retirement until last month. I still
consult at a distance, but less and less. So now I have the time to read the
PARKINSN E-mail in place of the 30-40 messages a day I used to get at Bell
Labs.
My PD symptoms are still well controlled thanks to an experimental drug
(Ropinirole from SmithKline Beecham - a Dopamine Agonist, non-Ergot
derivative -works on B2 dopamine receptors...) that has done wonders for me.
It allowed me to go without Sinemet for 3 years (my neurologist initially
predicted 1 year) and enabled me to write again (my most prominent
disability) and reduced the shakes. After the 1-year clinical trial (out of
Robert Wood Johnson Medical Center in New Jersey) Ropinirole was withdrawn
(there was no commitment to a compassionate use program) but appeals from my
neurologist and personal appeals got me back on Ropinirole under the
supervision of the USC Dept of Neurology in LA. So I consider myself very
fortunate - PD progress very slow (or at least maked by a combination of
Eldepryl, Sinemet CR and Ropinirole), living in sunny Santa Barbara (walking
outdoors daily), able to continue to contribute professionally to Bell Labs
product developmetn teams and have the excellent support of AT&T in medical
benefits and other ways so that life is very busy.
I live by the guideline "not to worry or spend energy on those things I can't
change or about an uncertain future yet I do my best every day." I do
manage to live life to the fullest, keep a cheery disposition and count my
blessings - a caring wife, two wonderful children (23, 26), living in a
California paradise, and many friends and caring relatives nearby...
Question to PARKINSN readers: Anyone else with experience with Ropinirole?
Any knowledge of prospects for FDA approval?
Looking forward to sharing experiences and learning from all of you.
Ilan Levi ([log in to unmask]) Santa barbara, CA
