TO: ALL PARKY PEOPLE INTERESTED IN ONE PARKY PAL'S EXPERIENCE AND OPINION
ABOUT SINEMET.
FROM: ART
Strange to say one loves a non-breathing synthetic blue/yellow/tan pill, but
that's how I feel about sinemet a/k/a/carbidopa-levodopa. MY opinion base on MY
experience follows. I don't argue for or against it....for anyone else. And I
recognize opinions are like navels - everyone has one! I don't intend to
invite controversy, agreement or disagreement or rebuttal. I'm not in to that,
but I do hope someone out there will find this information useful -perhaps even
the author(s) of the inquiry which prompts me off the bleachers and at least
into the bullpin. (..excuse the baseball metaphors...still hard to believe we
in the Rocky Mountains have professional baseball...Went there for father's day
arranged by my daughter)
Letme recap me and parkinsonism. I first noticed symptoms in Dec.92 at age 41.
Right leg limp/drag <--more ways than 1. Rigidity began to set in..upper body
especially shoulder. Tremors...gradual...but increasing under stress. To the
doctor in the summer '93. Ruled out a host of "nasties", including stroke,
brain tumor (..putting my "affairs" in order *knowing* a) there was a
tumor..b)it was malignant c)it was inoperable or operable with marginal or
shorterm prognosis. Do any of your minds work this way ever?
This when I was 1st introduced to sinemet...1st used as a diagnostic tool.
Primary doc then rendered a tentative diagnosis "parkinsons syndrome" in
November '93. Continued on sinemet. Requested and received a referral to a
movement disorder specialist and was examined, whereupon the good doctor
proclaimed: "You don't have parkinsons syndrome!" Quite relieved and eager to
tell my primary doc that he had cried wolf, my mind immediately fantasized that
this expert/specialist was gonna say somethin like...."take 2 aspirin and go
home and call me in the morning...and when you wake up tremor free, ready to
run the boston marathon -- go instead on the 3 week Himalayan trek you had
planned for the Fall '94 ---because Brother! you are healed." Instead of
feeding my denial based illusion....the doc follow in stacatto succession with
the statement. YOU HAVE PARKINSONS. Various parts of my anatomy reacted to
this statement....(autonomic and non-automic)....by reporting: "And you are
lucky....this ain't (even docs will use this word in the wild wild west of the
USA) a syndrome. It is parkinsons....early stage and classic presentation for a
young parkinsonian." Collecting myself somewhat...I said something like
"LUCKY>>>>???!!!!...what are ya, crazy?" And he says in an equally wild
western way.."Yup!" Having been born and lived all my life in Wyoming, I was
familiar with the implications of that term.. And although not medically
schooled myself....that unequivocal word represented a confirmation of the
diagnosis of parkinsons disease.
Now, why and how could one, who is experiencing these disrupting and
debilitating symptoms, be "LUCKY" to have PD? The doctor explained that *we*
know how to treat you and we take over mangagement of your case, your symptoms
are can be removed allowing you to live an active, productive and useful life
and at your age and given the pace and progress on the research horizon, you
will probably only have to put up with this disease for 5 to ten years by which
time *we* expect a cure!!
And a productive and useful life I intend to lead, my friends and parky
soulmates! Believing that this physical existence is transitory and temporary
in the broader realm of "existing" does not mean that I find this husk
existence to be unimportant. I intend to ENJOY life to the maximum degree
obtainable. I also intend to be USEFUL to my fellow human beings and to this
mother planet we share. I will use this body and augment with available
medical science to achieve these twin objectives.
So I say: "L' chai im!" How I am able to enjoy life and derive *its meaning*
and reach its fruition...can be illustrated by looking over my past several
days of life's activities:
4th of July celebration - picnic in the park...a leading role in a play
performed in the park (preceded by a 2 week rehearsal schedule at 2 hrs/per
day) Drove out to the "hills" ( some would call mountains..we don't) and shot
off our own fireworks..Back to the Public fire works display and to a concert
in the football stadium.
5th and 6th of July -- 3 hrs per nite rehearsals for the upcoming musical
production..Fiddler on the Roof....opens August 1. Afterwards, played and
worked on the computer. Bedtime about 11:30 pm.
7th of July -noon --> drove 50 miles for medical appointment. 3pm-->
attended and participated in a ceremonial function. 5pm--> drove 100 miles to
the BIG CITY for pre-arranged dinner, then dancing 'till the wee hours. Up at
6am on the morning of the 8th---> hottub....breakfast...shopping, then 3 hour
drive back home for 3 hr play practice :"Maseltov!" Barbeque...this
aft...street dance tonite...
Sunday the 8th....to rest (the creator is said to have done so in some
important accounts of history and faith....)....go slow activities..
Now, I recognize EACH of Us has different impacts, attitudes, reactions,
restrictions, severities "gifted to us" as a result of sharing this progressive
disease depending on its severity, symptomotology and stage of progression. The
Dealer has dealt each of us different hands. (Although, I must confess to an
amazing number of parky pals whom I have gotten to know at some more than
surface level as a result of joining THIS BULLETIN BOARD.....who holds very
similar cards to mine----almost EERILY SO!!! in a couple of instances
(whisper:----->..you "guys know who you are.") ). Recent postings exhibit
remarkable similarities.....ie. similar age onset, one sided impact, tremoring,
leg drag limp....etc. So c'mon on in and SWIM!! you new guys. Write! Post! Send
private emails (upon consent)....talk on the phone (upon consent). YOU ARE
NOT ALONE! *WE* are outhere! *We* are facing similar life's challenges as you
are. And *we* are also thoughtful at times...we hurt....we laugh...we cry....we
hope.....we love.....we get the blues.....we medicate...we recreate.....we go
to doctors...do clinical trials ---one for all and all for one PARKY PALS!
WOW!!! SORRY...guess I wanted to get some things off my chest...! Time to go
recreate. (By the way...in case you think I am either independently wealthy or
an irresponsible recreator/devil may care guy..who "rocks and rolls" thru life
being a raconteur and thespian. I have other "serious" kinds of pursuits which
I tend to: I live alone and maintain my house, laundry, yard (some help at
times) including gardens and shrubs which I tend and replenish. I parent 2
mostly grown children -- traveling frequently 400 miles in one direction the
see the senior in high school...and traveling *very* frequently to see my
recently married college graduate at a distance of 120 miles. I do my own
lifting and try to pull my own weight in other social, recreational and
professal activities (although my muscles are growing thinner and weaker and
more prone to needing attention in a hottub milieu. And OH!...almost forgot...I
have a "day job" ---by any objective standard...demanding, potentially stress
riden and usually consumptive of 40-45 hrs per week plus travel.
BACK TO THE FUTURE!!!! and to my opinion on the matter at hand and which
prompted this diatribe and you having to see it on the screen (at least), scan
though it, DELETE it without inquiry or inspection, OR DELETE IT AT ANY STAGE
OF PERUSAL:
I could not have done 10% of those things which I am blessed to be able to
do IF IT WERENT FOR SINEMET. As for this 24 hr interval and the preceding
several and perhaps some of the future 24 hr(s) - I ATTRIBUTE the successful
treatment of this disease to date TO SINEMET. (btw I own no stock nor am I
affiliated in any way with the stuff) I augment now with permax and eldepryl
for several reasons. But I AM ABLE TO DO< TO ENJOY< TO HOPE and "L' cha im!"
because of these tan/grey and blue pills (CR and REGULAR sinemet...at intervals
and according to "body" sense.....and under regular consult with my good DOC.
I have to date suffered NO = NONE =<NOT!> =ANY = NADA......side effects
which in any way interfere with or diminish my life.
A final observation: I know there are differing opinions on the
commencement, postponement, discontinuation, efficacy , longevity, and
advisability of various and several treatment and medicine modalities.
Mine is not to engage in a medical, theoretical, scientific, political
continuing dialogue on this matter. I thank others for sharing and I respect
your opinions and appreciate your postings. But *for me* only and for the
foreseably near term 24 hour intervals which I may have the opportunity to
experience.....I am gonna travel (slowly at times...in molasses and mud during
those "off" intervals which inevitably happen when I over do or when space out
a dosage at its proper time) down this road to happy destiny -pills in hand,
openness in mind, hope in my heart and all of *YOU* in my prayers....until we
lick this thing.....
after that ......u r on ur own.........*smile*
art
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movement disorder specialist and was examined whereupon he announced: "
