Julie, who lives in Toronto with her husband, also went last year for a brain scan to be used by the same group of Krembil scientists.
The team is led by world-leading Parkinson’s disease neurologist Dr. Anthony Lang, director of the Edmond J. Safra Program in Parkinson’s Disease and holder of the Lily Safra Chair in Movement Disorders.
Julie had to travel to Buffalo for the scan because the particular machine used in the study is not available in Canada. It’s a lot to give and do for research. But for her, it’s a way of fighting back against the disease she was diagnosed with five years ago.
“It took about a year to find out what was wrong with me, but in the end, the conclusion – which I had already suspected myself – was that I have Parkinson’s disease,” says Julie, who is 56 years old and recently retired from an executive role in a national, not-for-profit land conservation organization.
The research project Julie contributed to last year – she’s been involved in five other previous studies – is called the Systemic Synuclein Sampling Study or S4, for short.
The object of the study is to identify the best biological indicators for Parkinson’s disease by tracking the levels of a protein called alpha-synuclein. This normally occurring protein, which is believed to play an important role in the development of Parkinson’s, has been found in concentrated clumps in the brain cells of people with the disease, within substances called Lewy bodies.
“There are suggestions that Parkinson’s disease doesn’t begin in the brain at all, and that by the time patients present with the disease, we may be trying to treat them too late, because the disease is already well established,” says Dr. Lang, the S4 lead investigator at Krembil.