hi maryhelen

you [and that darn cranky keyboard] wrote:
[and ms busybody editor from hell 'neatened'
so that none on this multi-lingual list
would miss your message]

>Can't sleep.  my..... thoughts....
>Tell me what ever you want,
>but I'm going to "DC" for the 4th time,
>in honor of and in gratitude to those PWP
>who came before me, and who are now gone.
>
>They are dead or helpless in "care" facilities trapped in a living death.
>Those who suffered without Sinemet, before Levodopa.
>Those who sacrificed for us - people they'd never meet.
>They fought knowing that they had a "future without hope"
>so that we could have hope.
>
>When "they" were diagnosed (if they were ever diagnosed)
>they were utterly hopelessly doomed.
>They learned that quickly.
>But they still sacrificed.
>They sacrificed what little human dignity that PD didn't get first,
>to serve as medcal testers for us
>to pass to us the knowledge
>to pass to us the responsibility to "carry on" and to "finish the job".
>
>We have the responsibility passed to us to "stop it now".
>WE don't have the luxury of time to waste.
>We haven't reached the finish line yet.
>We aren't yet safe from the hell that Morris K Udall is in NOW.
>He is still alive -- have we forgotten?
>Is he invisible to us?
>"There but for the Grace of God go  I"
>can we say that yet?
>Are we so safe yet?
>Get up, all of us around the world
>and hold our heads up with the dignity we have,
>ours and that we inherited from our PD family before us.
>Dignity of those whose lives were raped by PD.
>No, so what if "officially" no one "Died" of PD - so it's said,
>But those with progressed PD know that PD takes life
>- a slow cruel way... an inch at a time.
>We know better and so we call all parkies
> . .... don't think of it too long .
>Charge in ....... with what dignity   we have lelft,
>with whatever we can use,
>letters, newspapers, music, poems, rocks, sticks,
>anything God's given us to use,
>don't ask permission
>just use what  PD hasn't taken yet....
>use it, support each other,
>strengthen each other and fight PD..
>Stop it..
>
>If PD lasts a second longer than it had to,
>we should hang our heads in shame.
>
>Because the time is now.
>It's our job.
>We know that.
>
>Maryhelen

maryhelen, you've written a deeply moving message
it rings with your spirit and your determination
and your sensitivity

my perspective is similar to yours
although there are differences

>Those who sacrificed for us - people they'd never meet.

i don't really believe that those who had pd before us
were anything other than ordinary human beings like we are

are we such heroes that we are sacrificing for those who come after us?
are those brave souls who undergo brain surgery/implants/whatever
having holes drilled in their heads out of heroic sacrifice
or simply in hope that their own suffering might ease?

that is not to say that looking after your own health as a primary motive
is selfish
but i do think it is
self-love

and
that is not to say that not sacrificing oneself for others
is selfish
but i do think it is
human

when i think of those who have had pd before me before sinemet
i cannot assume guilt for their 'sacrifice'
or for their past or current suffering

that doesn't mean that i have no empathy or understanding
for what they have been through
and are still going through

i can feel blessed that i have access to the medical help that i do

we each have to face our own individual 'tests'
as well as we can
with the tools available to us at the time

i can feel empathy for stephen hawking's 'suffering'
or for christopher reeve's 'suffering'
but i do not have to feel guilt
and i suspect that they might brush away
any sympathy i might try to offer

>We have the responsibility passed to us to "stop it now".

we have the responsibility of accepting the challenges given to us
sometimes just figuring out what the challenge is
is the challenge

i didn't begin to figure out what my challenge was
till i was diagnosed with pd ten years ago
that diagnosis was my 'wake up call'

the past ten years have been a tremendous period
of growth and change for me in many ways

if i hadn't heard the 'wake up call'
i wouldn't be here sharing all of this with you

and i would be so much the poorer

so i can't look at my pd as a scourge to be banished

but that's my perspective
based on how i see my challenge

>"There but for the Grace of God go  I"
>can we say that yet?

yes, we can say that now
it doesn't have to be a one way view

i could look at someone in a wheelchair
['worse off' than me]
and say 'there, but for the grace of god, go i'
and/or
i could look at someone in a private jet
['better off' than me]
and say 'there, but for the grace of god, go i'

makes no difference
i go nowhere without the grace of god
now
today
every day

>Are we so safe yet?

yes
we are
we all are

but feeling safe
does not preclude feeling your passion
and answering your own 'calls'
and facing your own custom designed challenges

we are here to learn some powerful lessons
powerful pain
and
powerful joy

i've taken one slow, small step


with much love from your cyber-sibling

janet


janet paterson aka calendar control supervisor
51/10 - sinemet/selegiline/prozac - [log in to unmask]
quotations: http://newww.com/cgi-bin/do_cal?c:newvoice
pwp event calendar: http://newww.com/cgi-bin/do_cal?c:pwpc
a new voice: http://www.newcountry.nu/pd/members/janet/index.htm