Father's diagnosis a call to action

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Jenna Sigurdson, 11, has raised $5,518 for the Parkinson SuperWalk Manitoba after her father, Blair, was diagnosed with Parkinson's disease. The SuperWalk takes place Sept. 8. (COLE BREILAND / WINNIPEG FREE PRESS) Photo Store

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When 11-year-old Jenna Sigurdson found out her father had been diagnosed with Parkinson's disease, she put pen to paper a half-hour later and wrote a speech.

It wasn't long or drawn out detailing every ebb and flow of a young girl's life, but something more precise and close to her heart. And when she was done writing, she went out into her community, knocked on every door, and within the first two hours had raised $567 for the upcoming Parkinson SuperWalk scheduled for Saturday, Sept. 8.

"'Hi, I'm doing fundraising for the Parkinson's SuperWalk and I was wondering if you could sponsor the many people living with the disease, including my Dad? The money raised goes towards funding and care.' That's what I would say. I came up with it all on my own," Jenna says with confidence.

Her father, Blair Sigurdson, was diagnosed with young-onset Parkinson's disease (YOPD) last year, just days after his 50th birthday. The father of two -- Jenna and a nine-year-old son, Tyler -- says he noticed a slight tremor in his leg in his late 30s, but he didn't think much of it.

There was some weakness in his arm, some rigidity and pain in his muscles, but he attributed it to a car accident he had been in a few years back. But then he started having trouble getting up in the morning and moving. He decided to seek medical attention.

Sigurdson says he was shocked to hear the diagnosis.

"It was devastating," says Blair. "I never met anybody, let alone anybody my own age, living with Parkinson's. The only person I knew of with the disease was Michael J. Fox."

Young-onset Parkinson's disease (a diagnosis of Parkinson's between the ages of 21 and 50) accounts for 20 per cent of cases of Parkinson's. What Blair soon found out is people living with YOPD face a different set of challenges, including raising young families and trying to continue to work to retirement.

"At Parkinson Society Manitoba we have introduced a young onset support group that meets once a month," says Howard Koks, chief executive officer of Parkinson Society Manitoba. "It's an opportunity for those with young-onset Parkinson's, like Blair, to share their stories and inspire each other."

At the first meeting of the support group, Blair was finally able to talk about something that had been troubling him -- how to tell his young children about his diagnosis.

"We didn't tell the kids for a year that I had Parkinson's -- you don't want to bring it in negatively. You want to have your head straight, you want to make sure you're being positive with it," says Blair.

"Another gentleman there had a son who was nine years old when he was diagnosed, and he told me that he had told his son and that everything was fine. So that's when we decided it was time. Jenna immediately asked if there was anything she could do... if there was any kind of fundraising to do for Parkinson's."

Blair, wanting to bring awareness to Manitobans about YOPD and inspired by the newly formed support group, decided to form a young-onsets team for the Parkinson Society SuperWalk 2012. Jenna became his first teammate. To date, she has single-handedly raised $5,518.

"Last week she wanted to get to $5,000 before her 11th birthday," Blair says proudly. "So she went out and raised $2,000 in one week in order to make it to $5,000. That was her birthday wish."

Her mother, Karren Sigurdson, notes with a laugh Jenna has already gone through one pair of shoes with all the walking she's done. Jenna is the first child to raise over $1,000 for Parkinson's Canada and she is the first single walker this year to raise over $5,000 in Manitoba.

Jenna says someday she would like to meet Michael J. Fox, but has a much bigger goal in mind.

"I hope someday they will find a cure for Parkinson's."

To learn more about how to get involved or sponsor someone in the Parkinson SuperWalk, please visit www.parkinsonsuperwalk.ca. To learn more about the services and resources offered by Parkinson Society Manitoba, please visit www.parkinsonmanitoba.ca.

If you know a special volunteer who strives to make the community a better place to live, please contact Carolyn Shimmin at carolynshimmin@gmail.com

Republished from the Winnipeg Free Press print edition August 20, 2012 B2