Different needs greet disease's early onset
Sunday January 26, 2003
By Earl Hodges
Contributing writer
Two years ago, when Michelle Lane was diagnosed with Parkinson's
disease, the 34-year-old Harahan wife and mother of three felt her world
had collapsed.
"I was devastated," Lane said. "I had to quit work and I knew that my
life would never be the same again."
But in a few months, Lane decided she would fight back.
"I knew my children needed me. I couldn't quit," she said. "I started
reading everything I could find about Parkinson's disease and attending
all kinds of meetings."
Along the way, Lane had a desire to help other people who have
Parkinson's, especially those 55 and under. This led to her recently to
be named the Louisiana state representative for the Young Onset
Parkinson's Association.
YOPA is a nationwide organization formed about a year ago. It is
dedicated to addressing specific issues facing Parkinson's patients 55
and younger.
As the state representative, Lane is responsible for forming local
support groups, participating in fund-raisers, leading various forums
and symposiums and keeping the public as well as elected officials aware
of the needs of younger Parkinson's patients.
"Younger Parkinson's patients have issues that are different from older
patients'," Lane said. Many of the younger patients "are still trying to
work and raise their families. Since we have no young support groups in
Louisiana, my goal is to spread the word about this new organization and
develop a membership to help each other with support and updated medical
and legislative information."
Marcie Gruenewald of Seattle is the secretary for YOPA, which is
headquartered in Albuquerque, N.M., and has about 500 members in 40
states. Gruenewald is also one of the group's founders.
"A group of us had attended a Parkinson's Action Network meeting in
Washington, D.C., and we were at the airport waiting for our flights
home," said Gruenewald, 38. "We started brainstorming and talking about
the need for an organization that would address the needs of younger
Parkinson's patients. From there, we formed YOPA."
Parkinson's disease is a disorder of the nervous system that reduces
muscular control. Major symptoms of the disease were first described in
1817 by Dr. James Parkinson, an English physician who originally called
it "shaking palsy."
Dr. Jay Rao is director of the Parkinson's Center at Louisiana
University State University Medical Center in New Orleans. The center
treats more than 1,000 patients a year.
"Groups such as YOPA are very important for Parkinson's patients because
they have so many problems to deal with," said Rao, who has been
treating Parkinson's patients for 33 years. "When they go to their
doctor, he or she talks to the patient with Parkinson's about medical
issues and not always about the things they have to go through day to
day."
Rao said YOPA and support groups provide a place where Parkinson's
patients can encourage one another.
"When they get together, they can share notes," he added.
For her part, Lane said each day she becomes more determined to fight
Parkinson's disease by assisting in fund-raising for research,
supporting younger patients and by making the public aware of their
needs.
"I know that one day a cure will be found," Lane said. "But until that
day comes, I'm going to keep working and doing everything I can to
help."
For information about YOPA, call Lane at 915-3072.


Thomas Berdine
President
Young Onset Parkinson's Association
www.yopa.org
Founder
www.youngparkinsons.com


The Young Onset Parkinson's Association is a legal corporation,
incorporated as a not-for-profit in New Mexico and headquartered in
Albuquerque. We are in the middle of applying for our 501C(3) federal
tax exemption status and expect to have it within 2 - 6 months. If this
exemption is not approved, at first, your donation may not be tax exempt
until the time that we are approved federally.



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