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FINDING A SPECIAL KIND of SUPPORT ONLINE |
Can you imagine this: A young woman, married just 8 years with a 3 year old
son who notices some numbness and tingling in her left arm and right foot.
As time passes there is a slight tremor in her left hand. She notices some
deterioration of fine motor skills in the left hand--it doesn't seem as
strong and just doesn't work as well. Then she is pregnant with a second
child, a girl, and symptoms seem to improve until about 6 months after the
baby is born.
This is how Parkinson's Disease started for a friend of mine at age 32. It
took her five years of going from doctor to doctor before she was finally
diagnosed with Young Onset Parkinson's Disease (YOPD) in Feb. 2004 at the
age of 37. Although her life has been shaken by the diagnosis of YOPD she
has decided to help others cope with and understand this disease. The reason
I know this is because I also have YOPD, and met my friend, Ann Marie, in an
online PD support chat group. Annie (as we call her) has started her own
website for PD support. Annie is an amazing example of someone determined to
make the most out of life even while struggling with a debilitating disease
and who is encouraging others along the way. She was recognized in her
community as one of several "Women Who Make Magic" in June 2005.
Let me tell you some more about Annie and you'll probably agree what a
wonderful magical spirit she has. Annie graduated from the John Casablanca
modeling school, was a contestant in the Miss NJ USA pageant, had a
professional career, got married and now lives in a Jerzee suburb. She
became a stay-at-home mom after her first child. When her symptoms began she
thought it was probably just a pinched nerve and proceeded to seek an answer
to her medical problem. Never did she imagine it would take 5 years and
several misdiagnoses including "stress, conversion reaction, and MS" before
seeing a movement disorder specialist who diagnosed *YOPD. At that point
Annie was relieved to finally have a diagnosis, and then she got online to
find support and learn more about PD. She joined a couple of online support
groups and in May 2005 started an online support group herself called USA PD
PALS that is open to anyone, anywhere.
In April 2005, Annie and several of her family and friends walked in the Unity Walk in Central Park and raised over $1000 for PD research. Her desire to help others is exemplified in her positive attitude, her willingness to be a voice in the PD community to promote research and education, and her desire to encourage newly diagnosed patients as well as those living with PD, their families and friends. Annie's message to newly diagnosed patients is "You are stronger than you think, you will get through this time with the help of other PWP's (people with Parkinson's). Joining a support group is one of the most important things to do when newly diagnosed. Try to stay positive because attitude is half the battle. PD WILL CHANGE YOU, YOU CHOOSE HOW!"
She is not letting PD change her attitude...maybe if anything it is
challenging her to new personal heights. For the 2006 Unity Walk, Ann Marie
has a personal goal to raise $10,000, and has a placed some promotional
containers in her town that tout Pennies4Parkinsons as a fundraiser for the
walk.
Ann Marie is still running the kids to their activities, exercising, working
on a side-line business of gift baskets with a friend, being a wife, friend,
room-mom, going to doctor appointments, taking medicine, and hosting and
managing a website most evenings to provide support and encouragement or
just a kind 'hello'. Parkinson's disease has not stolen the magic of life
from this woman that I am proud to call my friend, or most often "Annie" or
"ajerzeegirl" (her online screen name).
*Young Onset Parkinson's Disease