Dear Bill:
You are concerned with the practicalities of this heinous disease, as it
progresses and steadily assumes control over our physical functioning. You
will receive many kind and extremely knowledgeable opinions from this list
of companions. I, too, am usually fluid with my speech, thoughts, ideas.
So far the disease has only hinted at attacking this area in my own body.
However right now, as I sit at this keyboard with my tremoring fingers, and
think of you trying to do the one thing which for the first two years after
diagnosis kept me sane - separating what I could control from what I could
not - I am at a loss.
I want to say.... go ahead and have a contingency plan, a Plan B just in
case. Make the arrangements to turn over the operation you are engaged in,
but don't throw the switch. This is hard to say, but I need to. I have
known despair, and the vastness of the open chasm which has become my
future, during the past 2 1/2 yrs. But this disease is so unpredictable.
It is so unique. So individualized. For me, it is akin to feeding the
chasm to try to nail down the rate at which I will progress. I am seriously
studying the effect that mental attitude has on healing, and when I can, I
consciously attend to it. I have now separated my experiences (again) into
2 different spaces - healthy and toxic. I work at uncovering and giving to
healthy situations and I clear out of the toxic ones. Sounds a little too
simple, I know. But it works often enough to keep me sane now.
I, too, have professional and personal obligations and responsibilities.
But today I believe that the individual to whom I have the primary
responsibility is me. I will stop here before I begin to run on. But after
these years since the diagnosis of trying to squeeze my life into the
restrictions of this disease, I am throwing off the halter. I will not go
gentle. This is not everyone's answer, not everyone's way. But for me, for
now, it is mine. Barb Rager
-----Original Message-----
From: William Isbell <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Tuesday, August 25, 1998 7:58 PM
Subject: Are Communication Losses Typical?
> This is a message to Craig Mellinger, in response to a
communication he
>recently posted. But I would appreciate comments from any and all. I'm
>just beginning my new life with PD and need some answers.
>
>Craig -
> Your recent message told of your inability to communicate.
Diffficulty in
>presenting my ideas was my tipoff that something was wrong with me. I have
>been known as a person who could spin bullstuf into a Persian carpet (to
>almost quote from a recent movie). And, since I earn my living by
>communicating my ideas for new scientific projects, I need to know what I
>may expect in the future.
> I would appreciate a description of how and, especially, how
rapidly your
>problems progressed --- speaking, writing, thinking, typing, organizing
>your thoughts. I need to plan now if I am to turn my duties over to other
>staff members.
>
> And for the rest of you who may read this message, are problems in
>communication a "usual" part of PD? Currently, my symptoms include
>mushmouth, cramped handwriting, lack of volume control, hushed voice, etc.
>No tremors, no lockup. Sinemet helps. I'm back to where I was perhaps 1-2
>years ago.
>
>Bill 64/2mo.
>
