janet paterson wrote:
>
> hi all
>
> At 21:57 2001/02/28 EST, : Kate Yamokoski wrote:
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> >Greg,
> >I was reading something you posted a while ago where you
> >mentioned having a 2nd pallidotomy this past summer. Would
> >you mind sharing about your history? I noticed that you are
> >only 40 and have had this disease since you were 28. Did you
> >take Sinemet? My husband is 48, dx. 3 years ago, and is
> >fearful of Sinemet. He's been on several dopamine agonists
> >and Symmetril and Selegaline. His major problem is rigidity
> >with muscle spasm and imbalance. I think we're both afraid
> >that he might not benefit from Sinemet and if not, there's
> >not much they can do at this point, until stem cell replacement
> >someday, hopefully. We're also fearful of dyskenesias from
> >Sinemet and I'm just fearful cuz the disease seems to really
> >be progressing.Any input is helpful. Thank you, Kate
>
> fwiw
> in my experience
> sinemet was and still is a miracle drug
i would like to interject here--
if the agonsts are working...
it would seem that sinemet would work better.
he is already taking dopamine agonists
substitutes for the real thing (dopamine)
is this too obvious? :-)
i have been diagnosed for a similar time and age,
and feel progression
on another track--
to the heart of the matter
what is really bothering you--
fear
?
someone once said,
"we have nothing to fear, but fear itself".
most of us have gone through that time of fear,
some of us may still live with it each day and can't shake it
the diagnosis
the time of progression faster than expected
losing
our friends contacts
our family difficulties
the thought of lieing in a nursing home
unable to move
intellectually still bright
but trapped
contemplating our mortality
religion and philosophy come to mind
somehow, you have to face your own inner demons
there is one life
that you are ultimately responsible for
and each day is a gift
find a way to
make the best of it
or live the nightmare
i wish you the best
ray
ps:
keep going wih this
answer some of janet's queries
knowledge and experience
are abundant on this list
just reach out
>
> your husband should not be afraid of it
> nor should he be denied its benefits
>
> whose decision is it not to take it?
> what type of medico made the diagnosis and when?
>
> fine tuning the med timing and amount becomes more critical
> after several years of a 'honeymoon' period with sinemet
>
> dyskinesia is primarily a sign of over-medication
>
> our brains need to be fine-tuned like a maserati
> and not with a sledgehammer
>
> try searching on my website for "sinemet" and "honeymoon" or "miracle"
> for more details
>
> i am disturbed that your message seems to
> reflect feelings of hopelessness and helplessness
>
> imho
> nothing could be further from the truth
> not about parkinson's and not in this millennium
>
> every situation is unique etc etc
> but pallidotomy seems to be falling out of favour;
> i think it should be an absolute last resort
>
> try reading the current science reviews at joe bruman's site:
> http://www.geocities.com/joebruman/
>
> my first symptoms appeared when i was 38; i am now 53
> and feeling stronger than ever
> in all sorts of ways
>
> what is your husband's name?
> will he be joining us?
> have you joined the caregivers' list?
>
> janet
>
> ps
> may i suggest that you turn MULTI-PART MESSAGING off
> in your e-mail software? it sometimes makes the listserver burp!
>
> janet paterson, an akinetic rigid subtype parkie
> 53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd
> TEL: 613 256 8340 SMAIL: PO Box 171 Almonte Ontario K0A 1A0 Canada
> EMAIL: [log in to unmask] URL: http://www.geocities.com/janet313/
--
Ray Strand
Prairie Sky Design
-----------------( on the Edge of the Prairie Abyss )---------------
when the sky is clear
the ground is visible
49/dx PD 2 yrs/40? onset/retired
