In message <[log in to unmask]> Parkinson's Disease - Information
Exchange Network writes:
> 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 Robert Wood Johnson Medical Center in New Jersey) Ropinirole was withdrawn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
IIan - Welcome to the list. I was very interested in you remarks re Ropinirole.
My wife was markedly sensitive to bromocriptine so use of ergot-like materials
has been out of the question. I shall pursue this possibility.
Again, thanks and welcome! Bob Howard
Bob Howard, occasionally known formally as:
Robert B. Howard <[log in to unmask]>
1320 Wisconsin St.
Hudson, WI 54016
Voice phone (714) 386 3596
