The following testimony was given by Iowan  Don Schneider,  at
Wednesday's Senate Appropriations  LHHS Subcommittee Hearing on
Parkinson's Disease. It may not have received much press coverage, if any
-- but  it should have. Don did receive loud and sustained applause from
the PWP in the hearing room, grateful to him  for telling his story (and
our stories) so eloquently .
Linda
FROM:
http://www.senate.gov/~appropriations/releases/record.cfm?id=182885

-- Testimony of Don Schneider, Parkinson's Patient, Clinton, Iowa
TESTIMONY OF DON SCHNEIDER

BEFORE THE SENATE APPROPRIATIONS SUBCOMMITTEE

ON LABOR, HEALTH AND HUMAN SERVICES, EDUCATION AND RELATED AGENCIES

MAY 22, 2002

Thank you, Chairman Harkin, for holding this important hearing today on
Parkinson's research. As a fellow Iowan, I am especially honored to be
here today to speak to you about Parkinson's disease both the incredible
toll it takes on its victims and their families  and the great urgency of
providing the federal resources necessary to cure this dreadful disease.

Fifteen years after my diagnosis, Parkinson's is continuing to slowly but
surely chip away at my quality of life. It has forced me to leave a job
that I loved, placed a heavy burden on my family and at times each day
renders me unable to walk, read a book or even dress myself. For someone
raised as an independent farm boy, I cannot express the frustration that
accompanies this disability.

Let me begin by giving you a little background about myself. I was born
in Clinton, Iowa and raised on a farm in Mt. Carroll, Illinois. After
graduating from high school, I attended radio school at Brown Institute
in Minneapolis, Minnesota. At age 19, I went to work as a night announcer
for KROS radio in Clinton. After serving in a number of capacities at the
station -- everything from Announcer to Program Director -- I purchased
stock in the company and was named General Manager in 1987.
Professionally, I was active in the Iowa Broadcasters Association and
served as President of the Iowa Radio Network. I was also very active in
the local community -- a member of the Kiwanis Club, helping the United
Way's Board of Directors for the Clinton Substance Abuse Council and was
involved in countless fundraisers for various worthwhile projects in the
Clinton area. In addition, I have always enjoyed working with young
people. I was inducted into the Junior Achievement Hall of Fame for
serving as an Applied Economics Advisor. I have always had a deep love of
sports, especially basketball. I tried to share that with youngsters by
coaching junior football and basketball. Later, I even took up the
stripes as a high school basketball official.

It was in 1988, during a basketball game I was refereeing, I held out two
fingers to indicate two shots when I noticed shaking in my left hand. My
family had begun to notice a blank stare on my face and I began
experiencing slowness of movement and pain in my neck. One visit to the
clinic and I was diagnosed with Parkinson?s at the age of 35. For five
years after my diagnosis, I hid it from all but my family. When people
asked, I simply said, "I have a neurological condition". I could relate
very well to the feelings expressed by Michael J. Fox when he was first
diagnosed with Parkinson's. You don't want to believe this is happening
to you and you certainly don't want anyone else to know what is happening
to you. What would they think? How would they treat me? It was extremely
difficult after being someone that was always in charge to be forced to
depend on others to help me.

At first, with the help of my medications, I was able to continue living
a relatively normal life. As long as the medicine was working, I could do
just about anything. But eventually, progression of the disease and side
effects of the medications left me no longer able to count on being fully
functional at work. My condition became so unpredictable that I was
forced to end my broadcasting career in 1999.

Today I reside in rural Clinton with my wife, Rita, and three youngest
children, Joseph 17, Sam 14 and Anne 10. My two oldest children are now
finished with school and living on their own. Katie, 21, is serving our
country in the U.S. Army. She is stationed in Ft. Polk, Louisiana where
she currently works with a mobile medical unit. Sarah, our oldest,
recently graduated from the University of Iowa and is now at University
Hospitals and Clinics working as a registered nurse in the Neurology
Department , something that certainly takes on added significance given
my condition. I am very lucky to have a strong, supportive family that
has stood by me from the beginning.

That's not to say it has been easy. I can still recall the profound
sadness in the eyes of my family members and the uncertainty and sense of
dread we all felt when word came of my diagnosis. I cannot deny that each
day I worry about what our future will be like. On the one hand, great
progress has been made and many new medications have become available in
just the short time I have been affected. On the other hand, there is
still no known cause and the possibility of being trapped with an alert,
active mind in a body I cannot control is more frightening than I can
describe.

Since giving up my job, we have had to rely on my wife's income from her
job at an accounting firm and Social Security to get by. Fortunately, she
makes a good living, but there is no question that Parkinson's has taken
an economic toll on our family. We are facing the prospect of soon losing
our health insurance with prescription coverage. With a cost of over $700
a month for my prescription medication, we will certainly have to make do
with a lot less. I often think about all that my family is missing
because of Parkinson's Disease.

I have tried to channel some of my anger over being diagnosed with
Parkinson's into something positive. I started a Parkinson's support
group in Clinton several years ago, which I still facilitate. This group
of over thirty families has been a great help to me in facing the daily
struggle of life with Parkinson's.

No one knows why or how I got this terrible disease. Is it genetic? Two
of my great uncles had Parkinson's but one was on my maternal side and
the other was on my paternal side. Does the environment play a role? I
grew up drinking farm water, but so did the rest of my family and no one
else has Parkinson's. The bottom line is we just don't know what causes
Parkinson's. But, I am hopeful that we will have answers soon. Scientists
have made remarkable progress and with adequate funding could find new
treatments and even a cure in my lifetime.

I am not a quitter and I refuse to give up hope. I have always had a love
of old cars, and have used as a motto a line from an old car movie "The
Gumball Rally". In that movie as the race is about to start, a driver in
a Ferrari turns to his co-pilot, tears off the rear view mirror, and
says, "now the first rule of Italian driving -- what's behind me does not
matter". I try to do the same. Keep looking ahead rather than worry about
what I've lost and remember all I have to be thankful for , most
importantly my wonderful family. I hope that by staying involved and
active in the fight for a Parkinson's cure, I can make a difference in my
destiny and that of the million other Americans suffering from this
dreadful disease.

Again, I thank you for the opportunity to be here today.

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