RESEARCH.
If the NPF initiative will help me with that goal, I will support them as
they are the leading organization in the dollar amount raised and applie=
d to
research in the private sector.
I will keep and open mind to any and all suggestion presented at the
conference and to all of you who may pass an idea to me for consideration.
It is apparent that no effort on my part will persuade the National
Organizations to unify and become one but they all can be used in their
distinct rolls to futher my goals and the needs of the Parkinson communit=
y.
We have three national organizations and several strong regional that bri=
ng
their individual skills to the PD Community. We are all working to try =
and
improve the lives of people with PD and to eradicate this disease. All
though I would not consider myself a supporter of NPF last year I did not
hesitate to use their Mohammed Ali post cards and inscribe messages and
direct the cards at the suggestion of the PAN. When I needed information=
to
lobby Senator Frist in Tennessee I did not hesitate to contact APDA for h=
elp
locating people in Tenn. through their strong Support Group archives. Wh=
at
ever it takes get it DONE NOW.. There is strength in numbers.
I do not care who takes the credit I want to maintain the momentum. And t=
o
all who have counseled me to try to delay this conference, I say, Your ha=
nds
are not shaking on the keys this morning, you foot is not twitching as yo=
u
sit, you are not sitting staring into space you are not wondering if it s=
afe
enough for you to drive to the store etc.=20
For PWPD the time is now a day delayed is a day lost
Lets Rally around the doers=85. who cares who takes the kudos.
My inspiration comes from a women I've never met who sent me the followin=
g
letter to present to Congressmen when I called upon them.
She can not wait six months with her life on hold for some nebulous act o=
f
unity to be adopted
" My name is . I have been diagnosed with a Parkinson Plus Disease calle=
d
Multiple System Atrophy' or what some call Shy Drager. My symptoms began=
to
progress rapidly around age 30. Presently, I am 38 years old and I have =
a
Masters degree in Speech Language Pathology. I am a former school
speech language therapist in the Cleveland Public Schools. I have a=20
brilliant 14 year old son who has been planning to go to Harvard Medical
School since age 5. My Husband is a Full Professor in Civil and Mechanic=
al=20
Engineering at a well known university. We live in an affluent suburb. W=
e=20
thought we had everything!!!!! I added these THINGS and HUMANS into my s=
tory
because I want the congress people to realize that this disease can happe=
n to
anyone at anytime. When Parkinsons or Parkinson's Plus (Multiple System
Atrophy) hits, it is hell!! =20
=09
This is our life with Parkinson Plus/M.S.A. .....
I wake up at 4:30 A.M. I can not move too well if at all. I wait. I wait=
for
7 AM to come. My husband then gets up to give me my medicines so that I c=
an
move my body, and speak. He has to lift my upper body and head up so
that I can take my medicines. My husband takes my son to school then goe=
s=20
to work. Oh...But every two days I have to have a warm water=20
edema so that I do not get obstipated (severe constipation) and end up in
the emergency room. =20
=09
My aide comes at 8 A.M. to assist me. Each day I do my range of motion
exercises, and 3 times a week I go to the Clinic for P.T. and O.T. I hav=
e
come along way since a new blood pressure medicine was approved by the FD=
A in
December. The new drug enables my B.P. to be maintained, thus I can walk
with my walker a bit each day and I will be able to see my son graduate 8=
Th
grade!!! =20
Without research money this and future findings would /will not take=20
place. =20
=09
My diet consists of strained baby food meats, pudding and sustical
because my digestive system is deteriorating. My whole body, except for =
my
intellect, is deteriorating. My blood pressure, my motor strip, my bowel=
=20
and bladder systems, my whole autonomic system is shutting down. With th=
e
passage of the UDALL Bill, researchers will find new medicines and eventu=
ally
a cure that would help human beings afflicted with these Parkinson's
diseases.
=09
Well, I have to stop now. My body is getting stiff. My dopamine
is getting depleted. Only my fingers are able to somewhat move now. I ju=
st
wanted to send this letter. Hoping that it would be read and thought abo=
ut
by Congress. If the researchers could only find a cure for
Multiple System Atrophy and Parkinson's disease, it would enable me or
another human beings to continue to be a productive and contributing memb=
er
of this great country. PLEASE vote for the UDALL BILL. My family and I
would be extremely thankful and appreciative for your support. THINK abou=
t
it.
Thank you for your time."
The Serenity Prayer
=20
God grant me the serenity to accept the things I cannot change:
Courage to change the things I can: and
Wisdom to know the difference.
Living one day at a time; Enjoying one moment at a time:
Accepting hardship As the pathway to peace.
Acceptance of life as we must live it is a CHOICE.
And so my friends, I ask can't we get behind the people with a vision and=
the
strength to act on their dreams in our behalf and accept one and all with=
out
rancor and dissention who try to improve our Lot.
On a purely personal note I owe a debt of thanks to Joan Samuelson for he=
r
vision of an advocate mission, to Robin Elliott for his unfailing suppor=
t of
the Parkinson Community in a personal and professional capacity and to Ji=
m
Cordy for his friendship and in your face leadership of the Grass Roots
Lobbyists. I have met all but one of my fellow conferees and I sit in awe=
of
their accomplishments and ask myself why am I invited into this prestigio=
us
group.
I also sit in admiration of all those people who post so little or not at=
all
on this list but have contributed to our recent victories=85without their=
help
the leaders visions would not have born fruit.
I've said my piece and probably to wordy at that but it is a common
professional failing of most of those in my profession.
Dale Severance
=20
