Readers: This is my (Maryhelen's) response to Bernard JOLY's response to the
above captioned subject:
vvvvvvvvvvvvvvvvv
Thank You Bernard. I read your message as encouragment for me and others to
come out of hiding. I haven't always 'seemed' shy, as those who know me
could tell you that once I 'open my mouth', whether it's on the list or
otherwise, it's difficult for me to stop before I cause some damage (sounds
like my PD walk - freeze theen run into, or over things! Ha! Ha!).
Participation on the list lessened due to the progression of physical
ability.
And, the stress that tags along with all the energy it takes not to give to
this dang-blasted condition. Most of my ennergy last year was hanging on the
leg of dear friends of the list that I grabbed on to as I felt myself going
down. And I can feel the truth, that the strength of friendship from the list
is real - - their support has really helped me!!
The list and it's people are the best medicine. Sometimes some of us can't
interact as much as we'd like, and other times we can. I used to pay a high
school student to come over and type for me - because interaction is critical
to all of us. As I'm thinking about list participation, I'll share my
thoughts of some special non-interacting participants. There are many others
who cherish the list but can't interact at all. When I can, I print copies
of the list messages to read to PD friends in rest homes and they hang on
every word. I can no longer understand my friend Richard when he tries to
talk. I have to believe he understands me. But up to the point where
communication was still barely possible, I know he somehow felt avenged when
I told him of progress the PD community is making to "kick the A_ _" of the
stupid disease that has silenced and imprisoned him. I believe hearing about
others fighting for research, trying to understand what's causing the trouble
in our heads, and supporting each other, is some comfort for him. We must
remember our silent ones when we fight again for the Udall Bill..
We're in it together
Maryhelen
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