I thought I would share comments appearing on America Online by a wonderful
contributer on that service.  She has been fighting to save the PD program at
U. of Nebraska Medical Center and hit the politics of medicine in higher
education.  These comments are a result of myself and others commenting on
the frustrations with the status quo in PD.
 
NOISE
By Rita Weeks
 
I agree that we have to make noise and we have to make it now.  Yes, I go out
and face the world and pretend that I do not have major problems with PD.  I
refused to tell my husband for over a year after my diagnosis because I
didn't think it was a problem!!
Contrary to your comment Alan, I think we have complaints about the medical
community.  I have experienced a neurologist who told me ABSOLUTELY nothing
about PD and gave me no information about support groups, national
organizations, along with my diagnosis.  I went on for a year with the
information from him thinking that the tremor in my right hand was my only
problem and I had learned to live with that years before (so I thought!).
When I asked a physical therapist about exercises and support groups for PD,
she sent me a couple of the exercise sheets we are all so familiar with.  In
reference to support groups she said, "I don't think there are any.  In the
early stages you don't need one.  In the later stages it would take those
people three days to get ready to go to one anyway!"
The medical  community could do a better job of education within its own
confines.  I have not known a nurse or hospital technical employee outside of
a neurologist who began to have a clue as to what PD was unless it was in
their own family.  Part of what we do is hide our problems to protect
ourselves.  Part of what we do is to protect our spouses / children /
caregivers / and our own aging parents.  Most of what we do truly damages our
own cause from a PR standpoint!!
I do not understand the seeming alienation between ADPA and NPF . . . perhaps
I am too much on the outside or too naive.  Having worked for the American
Cancer Society for several years I do know what strength can be gathered and
mustered by a national group for publicity purposes.  I am glad to see PAN
(Parkinson Action Network) with a newsletter that will keep us somewhat
informed on a somewhat timely manner.  (I am not being critical . . . it has
been frustrating to me not to know what was going on and how to do something
as I sit in the mid continent wanting to shout from the rooftops and not
being able to access CURRENT information.)
As a single voice, I am not heard.  I can rally the local troops around here
and we can make a splash that will be heard all of the way across our
property line.  We need an organized voice that can be heard as a chorus
raising the rafters day after day.
I have been through denial, anger, frustration and thanksgiving.  Yes, I look
normal while I am sitting in a chair . . . if you didn't know me a couple of
years ago, you wouldn't recognize the masking.  I became an expert at hiding
the tremor in my right arm years ago.  Yes, I can still drive a car.  Yes, I
traveled to Asia last Fall.  Yes, I can function without household help.  No,
I don't have severe pain.  No, I am not afraid that I will die tomorrow.
However, I never know if I will be able to stand up and walk across the room.
Will I be able to pick up a pen and write my name on a check after I walked
all around the grocery store?  Will I be able to walk to the mail box 50 feet
from my door if the outside temp is 85F or warmer?  Will I choke on dinner
tonight?  Will I be able to remove clothing in the restroom, if necessary?
These are the things I think about today.
I was angry last year when I realized that I would not have the career dreams
fulfilled.  I had held these out in front of me like a dangling carrot while
I raised our four children and my husband pursued his career goals.  This
year we asked each other if he will continue chasing his career dreams at the
same pace, or will he slow down so that we have some time together.  This PD
has effected not only my goals but also his goals.  How many contributions to
society will we NOT make?  How do I fulfill my desire to contribute to the
world when my career is cut by 20 years.
Mohammed Ali could gather some publicity for us but I think most people think
that his is induced by fighting.  Billy Graham unfortunately appears quite
normal in the spots that I have seen on TV in recent months.  The Nova
special with Dr. Langston was great except that idiopathic PD was hardly
mentioned.  Why don't we have a more solid front on talk shows?  Has anyone
tried?  Are we not newsworthy?  Some of us have probably had excellent
experience as public speakers, science backgrounds; rational sane individuals
who have been dealt a crappy hand and have learned to live with it quite
well.  We have learned to accept the fact that most of our questions are
answered by the doctors as "I'm sorry we don't have any answers for that
problem."  We give our bodies for clinical trials in hopes that we might be
helped and our children or grandchildren won't experience our frustration.
We make things for our grandchildren who are not yet conceived so that they
will have a gift from "grandma."  We write stories and poetry so that our
children and grandchildren and their spouses will know something about us in
the days when we smiled and laughed and played like the rest of the world.
We hope that our spouses will have failing eyesight so that they will always
see us as we were and not as we struggle today.  We worry about their sanity
when they assume all of the responsibilities that were once ours.
I am getting carried away.  I will stop.  But please someone, help us to find
a way to get our united voice out there and get it heard.
 
Rita Weeks
Lincoln, Nebraska
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Regards,
Alan Bonander ([log in to unmask])