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Suburban mom uses Facebook to educate on Parkinson’s

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Updated: July 1, 2012 11:41AM

Jo-Ann Golec, an outspoken and active advocate for Parkinson’s Disease, approaches her disease the same as she approaches life: “I think the glass is always half full, and I don’t deviate from that.”

Parkinson’s is a progressive disorder of the nervous system that affects movement and is now associated with celebrity patients Michael J. Fox and Muhammad Ali. Rolling Meadows resident Golec admits the Parkinson’s diagnosis 16 years ago was “a hard pill to swallow” (she told her family and friends but asked them to never again discuss it). Now the 71-year-old mother of three and grandmother of five proudly states the hope she offers to Parkinson’s patients and their caregivers has become her “calling in life.”

To help with her mission, Golec is sharing her story nationally on Facebook with a new social media tool for those with Parkinson’s called “Parkinson’s More Than Motion.” The online video series allows Parkinson’s patients and their friends and families to interact and add their voices to the conversation about the many symptoms of Parkinson’s as well as learn about Golec’s commitments to exercise, a movement disorder specialist, and how to control her own medical care.

Golec hopes that her advocacy will help others avoid what occurred in her life when she struggled for seven years with symptoms — a lost sense of smell, a very stiff and rigid body, and a right arm that wouldn’t swing — before being diagnosed with Parkinson’s in 1997. Even the fact her late father had Parkinson’s didn’t sway examining physicians.

“I don’t have any tremors — Parkinson’s affects everyone differently, and that doesn’t help with a diagnosis,” Golec says. Symptoms may include tremors, slowed motion, rigid muscles, impaired posture and balance, speech changes (speaking more softly, more rapidly or in monotone or sometimes slurring or repeating words), or the loss of automatic movements (blinking, smiling, swinging arms while walking).

Golec, who heads an annual Parkinson’s community education program with medical experts , has raised more than $60,000 for Parkinson’s awareness through annual PD walks dating to 2001.

“Thanks to exercise, I’m in the best shape I’ve ever been in,” says Golec who performs a broad repertoire of exercise (weight training, free weights, heart-healthy aerobics, biking and treadmill) 90 minutes a day five days a week. She takes medication, limits her protein, and avoids vitamin B-6.

The avid Cubs fan — who says there’s little she’s unable to do other than asking John, her husband of 49 years, to help open jars — still enjoys shopping and organizing lunches and dinners for friends. “I refuse to let this get to me; so far, I’ve been successful at it,” Golec reasons.

“Parkinson’s is not a death sentence. You don’t die from Parkinson’s — you die with it,” she adds, stressing the importance of a positive attitude. “A friend of my daughter asked me why I’m always smiling and I replied, ‘It’s better than crying.’ I’m really an upbeat person, and that’s helped me in this fight.”

Sandy Thorn Clark is a local free-lance writer.

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