Judy Price says the hardest part about being diagnosed with
Parkinson's disease was knowing, at that point, she was at the
beginning of a steady decline.
The Blue Ridge resident was 50 when she was diagnosed with the
chronic, progressive disease that affects the central nervous
system.
"They gave me a good 10 years, which was pretty devastating,"
said Price, now 55.
Now, Melissa Johnson wants to start a local support group for
people such as Price with early onset Parkinson's.
Parkinson's is a very individualized disease that affects more
than 1.5 million people in the United States, and can complicate
spontaneous movements and balance and cause muscle rigidity and
tremors among other symptoms. It is more common in people over 60
years old, but there is an alarming increase of younger patients,
according to the American Parkinson Disease Association.
The new group will address the unique issues associated with
being diagnosed at an earlier age, including trying to manage the
disease's disruptive and painful symptoms while still raising a
family and holding down a job.
Johnson envisions that the new group will complement an already
existing Parkinson's support group that meets on the third Tuesday
of each month at the Ronald McDonald House in Roanoke. The new group
will start this Saturday and be held on the first Saturday of each
month at the Vinton Library so that younger working people can
attend.
Johnson, 38, is the youngest person who attends the Roanoke
support group. The Bedford County resident estimated that 95
percent of the people who attend that group are 55 years old or
older and said the new group will be the only one for people with
early onset Parkinson's on the western side of Virginia.
Johnson and other early onset people say it's often hard to watch
people in more advanced stages of the disease and know that their
own symptoms will get progressively worse.
Johnson knows how frustrating it can be to be young and suffer
from the disease. Her symptoms began when she was only 25 with a
slight tremor in her little finger.
Over the next 10 years, she started to struggle to get out of her
seat and began losing her balance. Her legs and hands became rigid,
and her tremors became uncontrollable.
Doctors couldn't understand what was wrong, especially because
she was so young. She even underwent six hours of psychological
testing after a doctor suggested that her symptoms may be caused by
a psychiatric disorder.
Johnson was 35 when she was finally diagnosed with Parkinson's in
2005. She was relieved, but such a diagnosis can be devastating for
many younger patients.
The new group will provide information about medications and
disease management and help people to cope.
Larry Warstler, 56, said that he had no idea what Parkinson's was
when he was diagnosed. At the time, he was wheelchair-bound and
there were days he had to crawl to his front door to leave for work.
"You're learning to cope with the card you're dealt," the Vinton
man said.
Price said that people unfamiliar with the disease often don't
understand how debilitating it can be. For instance, they might not
know what it feels like to be middle-aged and unable to tie your own
shoes.
Still, she recognizes that the disease has inspired her to
maximize her time and kicked her travel plans into high gear. After
she was diagnosed, she decided to see all 50 states by the age of
50. She traveled to Sweden in May and plans to visit Greece in
September.
"I want to experience as much as I can now," Price said.
Young Onset Parkinson's Support Group
Where: Vinton Library, 800 E. Washington Ave., Vinton
When: First Saturday of each month at 10 a.m.
Contact: Melissa Johnson at 947-5194 or youngonsetparkie@aol.com
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