>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Robert Wood Johnson Medical Center in New Jersey) Ropinirole was withdrawn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
>
Ilan,
Welcome, you and your family seem to have the right attitude on this. It is
good to hear such cheery news today.
You asked if anyone else had experience with Ropinirole. Fuad was on the
Ropinirole for a year also. We found that it really stopped the progression
and even reverse the disease. We regretted it very much when he had to be
taken off. It has been 15 months since he was taken off. I heard that it
is close to approval. We are waiting also.
Fuad now take Permax, Eldepryl and Sinemet CR but not doing as well.
Barb CG for Fuad CP 61/3+ Greensboro, MD
[log in to unmask]
