hi all

At 11:40 2001/03/11 -0500, Greg Leeman wrote, in part:
>...
>I have remained silent long enough on the Ivan situation.  Ivan is a
>good friend, a strong advocate of fellow PWP's and finally and most
>importantly he is a human being ravaged by this insidious disease.  He
>has shown he is all too human at times...
>
>To me Parkinson's disease is like no other in that the typical day for a
>person in a 3+stage becomes very cyclical.  On-off phenomenon is the
>most difficult and unforgiving symptom or occurrence the human mind can
>try to handle. To be functioning in a reasonable way one moment and
>struggling to figure out why you can't move the next.  To me it is the
>same as having a form of bipolar disease.  So much of this disease ends
>up being emotional.  It drains one's energy level  PWP's feel helpless
>to act at that moment to help themselves.  Often panic attacks occur.
>If you ever had to deal with one you surely would not question the fear
>of the inflicted concerns.
>
>The problem for the patient is when the drugs kick back in everybody
>thinks everything is kosher.  Well, while there is temporary relief for
>the patient, there is confusion by laymen and people eager to point out
>that the patient magically comes back from the seriously inflicted.  So,
>therefore a patient may be capable of spastically hitting a golf ball
>around the golf course one minute, the next minute he will pay for it
>with either a long off period or a long and flailing session of
>dyskinesias.
>
>What I experience as most troubling is the directly related mood swings
>I am scowling at everybody when I am off and smiling when the drugs are
>on.  Manic swings that make people question your mental stability and
>leave you lost to explain why.
>
>If you are in fact in your early stages you can not have experienced how
>difficult his symptoms are to manage or even stand.  When I first met
>Ivan I thought he was a bit melodramatic.  But, after having experienced
>some severe emotional strain from on-off phenomenon I do not question
>his abilities from one moment to the next.  It is obviously tougher on
>some than others.  Ivan doesn't receive strong family support, so he
>often relies on newly acquired PCA's to help him manage his difficult
>life.  Combine that with strong doses of Sinemet and one can become very
>paranoid.  So what seems like an overreaction to their actions is often
>another symptom of the disease.
>
>Some may say that the treatment for PD has improved and therefore why
>wouldn't there be corresponding symptomatic relief.  Well they have not
>eliminated off time.  Until they do, PCA remain an important and
>necessary staple in Parkinson's disease treatment.
>
>Greg Leeman 40/30/28


hear hear!

and may i add my own two (cdn) cents' worth ?

one:

PD has to be the only 'disability' which switches 'on' and 'off' several
times a day
which in itself has to be a huge extra challenge in acceptance and frustration
not to mention credibility in the 'outside world'
as compared to other 'disabilities'

e.g. imagine a blind person
regaining her sight and then losing it again, five times in one day, every day

e.g. imagine an amputee regaining and relosing his lost limb ten times in
one day,
two times the next day, not at all the day after that, unpredictably

two:

how do i spell cure?

maybe s-t-e-m  c-e-l-l-s
maybe g-e-n-e-t-i-c-s
maybe p-i-g  c-e-l-l-s
or
maybe even s-y-m-p-t-o-m-a-t-i-c  r-e-l-i-e-f

if i could control the symptoms of pd with no 'down side'
that would be close enough for me to a
c-u-r-e


j-a-n-e-t

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/