Make 2018 Your Parkinson’s Year

webinar imageHave you committed to making 2018 the year you learn how to live your best with Parkinson’s? If so, Parkinson Canada has another productive, event-packed year that continues to bring help and hope to those of you living with Parkinson’s across Canada.

The newly redesigned Parkinson Canada website at www.parkinson.ca is a tremendous resource for you, your family and your care team to quickly and conveniently access everything from online informational resources (facts sheets, handbooks, etc.), local education and fundraising events, and support groups in your community. The website is also your central hub to register and replay webinars presented by some of Canada’s leading PD experts.

Expert Webinar Series – 2018

Be sure to mark your calendars for these upcoming webinars featuring experts and topics you will not want to miss:

How to Keep Intimacy Alive in Parkinson’s Disease

Tuesday, February 13

 Live-Stream in Person Event highlighting Parkinson’s Disease: An Introductory Guide

Friday, March 16

Falls Prevention 365 Days a Year

Tuesday, May 8

Advanced Parkinson’s Therapies: DBS and Duodopa

Tuesday, June 12

Alternative Parkinson’s Therapies: Music & Dance

Tuesday, August 14

Parkinson’s Toolbox: All You Need to Manage PD

Tuesday, September 11

PSP and Multiple System Atrophy (MSA) – Signs, Symptoms and Treatment

Tuesday, November 13

Incontinence and Voiding Dysfunction in PD

Tuesday, December 11


Podcasts with Parkinson Canada’s Information and Referral Specialist

Robert TerSteege
Robert TerSteege, Parkinson Canada

Complementing the expert webinar series this year, Parkinson Canada Information and Referral Specialist, Robert TerSteege, will provide comprehensive information on the spectrum of Parkinson’s disease.

January: Early Stage Parkinson’s

April: Mid-Stage Parkinson’s

July: Late-Stage Parkinson’s

October: Caregiving through the Stages of Parkinson’s


All webinars and podcasts are at no charge to register, and further information can be found online by visiting The Knowledge Network on the Parkinson Canada website at: www.parkinson.ca/knowledge.

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Establishing a new link between brain and body

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Dr. Simon Wing,
McGill University

A disease of the brain can become a disease of the entire body, as the breakdown of neural pathways often leads to a loss of muscle mass. Dr. Simon Wing, a professor in McGill University’s Department of Endocrinology and Metabolism, is eager to examine this potential connection as it applies to Parkinson’s disease. He has only recently discovered the possibility of such a link, but it could offer a new perspective on some of the most fundamental aspects of this condition.

“Through my research over the last 15 years I found a gene that encodes an enzyme that appears to be important in muscle wasting,” he explains. “This gene is called USP19.”

Wing was already studying the behaviour of this gene when he was contacted by a U.S. researcher who discovered that USP19 may also be tied closely to a problematic aspect of Parkinson’s disease. At the heart of this problem is a protein called α-synuclein, which forms clumps of disruptive material within brain cells. Not only does this material interfere with the ability of these cells to produce dopamine, these affected cells also appear to transmit α-synuclein to other brain cells, so that the disease spreads and causes more disability.

“Our work is based on a model where Parkinson’s disease spreads because α-synuclein is transferred from a sick neuron to a healthy neuron,” says Wing, recipient of a one-year $45,000 Porridge for Parkinson’s (Toronto) Pilot Project Grant. “However, nobody really knows how α-synuclein gets out of the neuron.”

That detail is crucial, because if researchers can identify and block the transmission mechanism, it might be possible to design a treatment to stop α-synuclein from leaving affected cells – stopping Parkinson’s in its tracks.  Wing’s U.S. colleague was therefore interested in USP19, which appears to serve as a mediator of this process. More importantly, Wing’s laboratory was already home to mice that have been genetically altered to remove USP19.

“If we look at our mice that do not have USP19 and so presumably cannot use this pathway to push α-synuclein out of the neuron, are they protected against the progression of Parkinson’s disease?” asks Wing. If so, then this finding would pinpoint this gene as a valuable target for possible therapies.

Wing admits that this prospect remains an open question, but one worth exploring because of its novelty and exciting possibilities. He also acknowledges that this foray into Parkinson’s disease has been a learning experience for him, one that has led him to work with some of the top people in the field at the Montreal Neurological Institute.

“It could be quite transformative,” he concludes. “There are groups already working on developing drugs to block USP19. We could be able to move fairly quickly over a few years into clinical trials if our hypothesis is correct.”

Editor’s note:

The most recent Porridge for Parkinson’s biennial event was hosted on November 12, 2017 in Toronto, raising in excess of $200,000. Proceeds from this year’s event support four grants through the Parkinson Canada Research Program, in addition to the novel work of Dr. Wing with the USP19 gene, the following researchers and projects will benefit from the support of Porridge for Parkinson’s (Toronto):

  • Dr. Alexandre Boutet – two-year Porridge for Parkinson’s (Toronto) Graduate Student Award in Honour of Isabel M. Cerny
  • Cricia Rinchon – two year Porridge for Parkinson’s (Toronto) Graduate Student Award in Honour of Delphine Martin
  • Anita Abeyesekera – two year Porridge for Parkinson’s (Toronto) Graduate Student Award

Read about other researchers recently funded by the Parkinson Canada Research Program by visiting the research section of www.parkinson.ca.

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Sniffing out Parkinson’s disease

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Dr. Johannes Frasnelli, Université de Montréal at Trois-Rivières

Losing their sense of smell is an early symptom that most people with Parkinson’s disease experience. That’s why some researchers are targeting the olfactory system, to use it to predict who will develop the disease.

Because there are many other reasons besides Parkinson’s that people lose their sense of smell, however, Dr. Johannes Frasnelli is hoping another sensory system will provide better diagnostic clues. Frasnelli, a neuroscientist and professor at the Université de Montréal at Trois-Rivières, is focused on the trigeminal chemosensory system. The trigeminal system – which most people aren’t even aware they use – is a part of the nervous system that helps us perceive the spiciness of hot peppers or the freshness of peppermint.

Frasnelli is trying to pinpoint patterns of impairment affecting the trigeminal system that are specific to Parkinson’s disease. Recognizing that pattern could form the basis of a diagnostic test or marker.

“The benefit of early detection would be to develop tools so we could at least stop the progress of this disease,” Frasnelli says.

The trigeminal system consists of receptors in the nose and mouth that are independent of our sense of smell and taste. Typically, though, someone who has lost their sense of smell would also become less sensitive to spiciness, burning and cooling sensations.

But Frasnelli suspects people with Parkinson’s disease do not have a reduction in the trigeminal system, meaning they can still perceive those sharp and spicy sensations. He’s comparing groups of people who have lost their sense of smell for another reason to those with Parkinson’s disease, and to healthy people, to try to isolate a unique pattern or profile of those who are at risk of developing Parkinson’s.

If he discovers that people with Parkinson’s can’t smell most odours but can still perceive the fresh, burning or spicy sensation, testing that might provide a good diagnostic marker.

“We will then have a better way of evaluating who is most at risk and those who are less at risk,” Frasnelli says.

That evaluation is critical because by the time Parkinson’s is diagnosed, most people have already lost 60 percent of their dopamine-producing brain cells.

Frasnelli, who trained as a doctor in Germany, prefers research to clinical work with patients because he can satisfy his curiosity about problems that affect people, including those with Parkinson’s he says.

“With research, you can ask questions where there is no answer, and you have to find the answer yourself,” he says. “That’s extremely interesting.”

Dr. Johannes Frasnelli received a one-year, $40,000 Pilot Project Grant for his research about chemosensory impairment in Parkinson’s disease. Read about other researchers recently funded by the Parkinson Canada Research Program by visiting the research section of www.parkinson.ca.

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The Victory Summit® is coming to Winnipeg, Manitoba

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Movement Break at the Victory Summit®, Winnipeg

Register online today

Parkinson Canada is excited to partner with the Davis Phinney Foundation to bring The Victory Summit® educational event for people living with Parkinson’s to Winnipeg, Canada. Thanks to generous sponsors and local donors, this event is offered at no charge to attendees and includes complimentary lunch.

Whether you are living with Parkinson’s, or a care partner or family member, you’ll find this one-day only event is moving and inspirational. Join us to participate in sessions featuring dynamic presentations from leading movement disorder specialists and other health experts.

The Victory Summit® event provides essential tools and resources that people with Parkinson’s can use to live well today.

Join us Saturday, April 7, 2018, from 9:30 a.m. to 3 p.m. at The Victoria Inn, 1808 Wellington Ave. Winnipeg, Manitoba. Advance registration is required so register online today.

Questions about the event? Contact grace.ferrari@parkinson.ca.

P.S. If you’re in the Winnipeg area and want to help on the day of the event, click this link to volunteer.

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Join our Parkinson’s family

Joyce Gordon, CEO, Parkinson Canada

You never have to face your Parkinson’s journey alone. While people living with Parkinson’s, and their caregivers, rely on the supportive network of family and friends, they tell me how important they find the unique support that only their Parkinson’s family can provide. That’s because they feel no one knows better the real impact of this chronic condition than others who also live with it day in and day out. And for those who are separated from family and friends by distance or circumstances, our Parkinson’s family can be a true lifeline.

As Parkinson’s disease progresses, many aspects of daily living change. Moving, eating, and talking become more difficult. The physical symptoms of Parkinson’s can feel embarrassing or uncomfortable in social settings. That can lead to withdrawal and isolation, which may lead to depression and feelings of helplessness. Your own family and friends understand your difficulties, and so does your Parkinson’s family. Few things make us better than helping another in need. We are all stronger when we overcome our challenges together.

Parkinson Canada is here for you offering help, hope and vital connections to the Parkinson community. Our first Parkinson SuperWalk National Hero Blake Bell says he has a more expanded view of family. He talks about his immediate family and then his “Parkinson’s family,” full of strong people he has connected with through support groups, activities for people with Parkinson’s, events and fundraising. Watch Blake’s story here.

Many people describe getting involved with Parkinson Canada as part of their healing and adjustment to living with the disease. Jamie Fobert became a spokesperson after a chance meeting with a member of his community. He thinks of his Parkinson’s family as part of his therapy, as life-altering as taking his medication and exercising. Hear Jamie’s story here.

Caregivers too can find connections and support with us. Former Board member Joyce Baretto enjoys her role as Parkinson Ambassador. Her mother Lena has been living with Parkinson’s for more than two decades. While Lena’s extended family supports her, Joyce advocates to elected officials and public servants to improve life for the entire Parkinson community. Watch Lena’s story here.

You can count on Parkinson Canada to help you make connections. Call our helpline for information, referrals and support. We are your hub to the Parkinson’s community across Canada and we extend a warm welcome to you and to everyone touched by this life-changing disease. We are able to provide extensive resources and supportive connections thanks to our generous supporters and donors.

Join our Parkinson’s family today. Visit our website at www.Parkinson.ca for a wealth of information and resources. Attend a Parkinson Canada support group or event in your community. Get involved and you’re sure to meet members of our Parkinson’s family. Become a volunteer or make a donation. As one of our donors told me recently, “You never lose when you give.”

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