Experts meet to tighten grip on disease

January 16, 2008
http://ottawasun.com/News/OttawaAndR...75253-sun.html
By ANN MARIE MCQUEEN, SUN MEDIA


Shelby Hayter didn't skip a beat when she got her Parkinson's disease diagnosis three years ago.

Within 48 hours, she was making calls about fundraising. A month later, she was running the Boston Marathon for which she'd already qualified.

She had also managed to raise $36,000 for Parkinson's research from friends, neighbours, hockey teams, church groups and family members.

"I just thought, 'Well, what am I going to do about this?" said the 43-year-old mother of three. "And just refocused really quickly."

Hayter was later asked to join the board of the Parkinson's Research Consortium, a group of 17 scientists affiliated with the Ottawa Hospital, the Ottawa Health Research Institute, the University of Ottawa and the National Research Council.

On Friday and Saturday, the consortium will host a meeting of about 40 top Parkinson's scientists and clinicians.

EXPAND SCOPE

It's the first time such a key group of people will gather, said Dr. David Grimes, co-chairman of the Parkinson's Research Consortium.

"The scientists can get very focused on one very narrow area, and the idea is if we can expand the thinking process a little bit ... we can hopefully get things done faster," he said.

Parkinson's is a neurological disease that causes slowness of movement, tremors, balance problems and stiffness.

Recent research has cast doubt on the prevailing belief that a lack of dopamine is the sole cause. Scientists now know Parkinson's can be triggered when other cells throughout the brain die, too.

"It's a very complicated process and in any one person the progress isn't going to be the same," said Grimes. "But there are common pathways where these cells are dying where we can interfere."

Hayter didn't stop her fundraising and awareness efforts after the marathon. Last year she took a doctor and a researcher into nine local schools to give a two-day, participatory seminar. This year, it's up to 14 schools. She's also raised another $14,000.

Despite seeing her disease progress -- Hayter has tremors in her left side now, a limp in her gait and a slight slide in her left foot -- she felt compelled to keep speaking up.

"For me the biggest hurdle is that Parkinson's affects the older generation, so there's such a weak voice ... young onset you have to focus on your family, your job, maintaining your health," she said. "That leaves not that many people who have the time and the energy, who are willing to be public about it."