Making connections closer to home

Community Development Coordinators
Community Development Coordinators

Are you a caregiver and need someone to listen to you for a few minutes or connect you with respite care services? Would you welcome the chance to meet with others like you living with Parkinson’s? Are you looking for a Parkinson’s exercise class in your community?

Whether it’s helping you to navigate what you need within the healthcare system or connecting you with education, support and comradery within your community, Parkinson Canada is growing to serve you better.

Across Canada, community-based individuals, called Community Development Coordinators, work with individuals like you in your community to connect you to Parkinson support groups, education sessions and local services. In speaking with you, they may be able to determine the availability of existing services and assist in defining gaps. They also build relationships with local members of provincial legislatures  and municipal representatives to advocate for issues important in your local Parkinson community. Most importantly, they build a local volunteer, service and funding network, with you at the centre. No two communities are the same, so the kinds of programs and services will vary.  What we know for sure is that as the population grows and ages, there is always a need.

Recently, Parkinson Canada received a grant for $637,300.00 from the Ontario Trillium Foundation to fund the expansion of our service delivery in the province by adding three new community development positions for the next three years: Margaux Wolfe, based in Ottawa will serve Eastern Ontario; Marielle Henderson, based in Thunder Bay will serve North West Ontario; and Paul Scibetta, based in Brantford, will serve Southwestern Ontario. We have received many requests from individuals and families in these areas, and now, with the new staff, you have additional community resources who can help you live well with Parkinson’s.

As many as 40,000 Ontarians live with Parkinson’s. This initiative aims to alleviate social isolation and create connections for more than 1,200 people. Even in mid-size communities, ranging from 20,000 to 100,000, access to Parkinson’s programs and services may be difficult. By linking individuals with appropriate programs and services, the daily challenges of Parkinson’s can be better managed. Now, there is help and hope closer to home.

Across the country, staff and volunteers, serve communities in a similar fashion. If you, or someone you know, are looking for answers or support, connect with Parkinson Canada. We encourage you to reach out and make a connection.

A great place to start is www.parkinson.ca. Use the map to “Find help near you.” You’ll find contact information for local offices, events and activities, including support group meetings, educational conferences and exercise classes. Also, you can find a wealth of fact sheets and other resources. If you have a bit more time, why not watch webinars and listen to podcasts, available any time you need them; simply access the website at a time convenient to you.

If you prefer to speak to someone, call our Information and Referral Centre at 1-800-565-3000. And if you are asked to leave a message, please do so.  Our trained and compassionate associates will respond to you as quickly as possible.

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Annual Saskatchewan fundraiser surpasses half-a-million dollar mark

Travis Low, right, presents the 2016 proceeds to Marlin Stangeland and Todd MacPherson, Parkinson Canada.
Travis Low, right, presents the 2016 proceeds to Marlin Stangeland and Todd MacPherson, Parkinson Canada.

Congratulations to the more than 6,000 participants, volunteers, sponsors and community members in Saskatoon, Saskatchewan, who have come together during the past eight years to be part of the annual Lows in Motion fundraiser.  The community event raises funds to improve the lives of people living with Parkinson’s in Saskatchewan. Including the 2016 event held in November, they have raised a total of $516,000.

Over the years, the Lows in Motion contributions have helped Parkinson Canada hold five annual education conferences in the province; expand the number of support groups in Saskatchewan to 13 – most holding monthly meetings; and make annual contributions to the Parkinson Canada Research Program, which has funded more than 500 Parkinson research projects, totaling more than $26 million, since 1981.

Travis Low founded the event in 2009 in honour of his grandfather who had Parkinson’s disease and his father who was newly diagnosed at that time. Lows in Motion generously donates all proceeds to Parkinson Canada to continue to bring help and hope to people living with Parkinson’s.

“There is so much to be hopeful for though. Hope that we will continue to progress our understanding of the disease. Hope that new treatments will allow those living with the disease to live a better quality of life,” says Travis. “And the biggest hope that we will one day find a cure!”

The annual event is more than your typical gala; supporters are treated to first class entertainment, while knowing they are giving to a great cause.  And they get to learn about what life with Parkinson’s is really like. You can check out two moving videos from Lows in Motion: Beneath the Tremors, which debuted at the 2015 event, as well as the most recent video Smiles of Hope.

Make a note in your calendar and watch for details about the next Lows in Motion shaker event in November, 2017.

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Promising research addresses quality of life for those living with Parkinson’s disease

Dr. Philippe Huot
Dr. Philippe Huot

An enduring fascination with the brain, and the desire for answers and solutions for his patients living with Parkinson’s, motivates Dr. Philippe Huot in his Parkinson’s research. As a Movement Disorder Neurologist at the Centre Hospitalier de l’Université de Montréal, he understands how patients and their families struggle with dyskinesia and hallucinations, two of many Parkinson’s disease complications.

Dr. Huot recently completed two research projects funded by the Parkinson Canada Research Program. The first is a two-year, $89,984 New Investigator Award and the second is a $45,000, one-year Lawrason Foundation Pilot Project Award. His early results have been so promising that he and three colleagues have received a three-year, $1.4 million research grant from the Weston Brain Institute to continue this research.

Huot began these investigations by studying hallucinations, a form of psychosis that affects up to 60 per cent of people with advanced Parkinson’s. These frightening experiences sometimes lead to a person needing specialized attention and ultimately living in long-term care.

“It’s a very important problem that has serious detrimental impact on patients and their caregivers’ quality of life,” says Huot.  “One patient I met had visual hallucinations and when she tried to grab something she thought she saw on the stairs, she fell and injured herself quite badly.”

Although there are other forms of psychosis, hallucinations are the most common manifestation in Parkinson’s disease, so  patient samples were available for  study, explains Huot.

He measured the levels of a protein that regulates glutamate, in post-mortem tissue samples from the brains of people with Parkinson’s disease (PD). He then compared them to samples from the brains of people who did not have Parkinson’s disease. Glutamate is an amino acid in the brain that transports signals from one brain cell to another.

He then observed the impact of psychosis-like behaviours in monkeys when modulating glutamate and blocking specific serotonin receptors at the same time. Huot demonstrated that this treatment combination was effective in reducing such behaviours.

“Basically we identified a new target and a new method to alleviate psychosis and proceeded to apply it to dyskinesia in another research project, with similar results,” says Huot. “We found that two very different conditions – psychosis and dyskinesia – could be alleviated in a similar way.”

One of the biggest challenges in treating Parkinson’s disease is finding ways to reduce dyskinesia, the involuntary movements most people eventually develop as a side effect of being treated with levodopa. Levodopa is the medication that reduces or controls stiffness, tremors and rigidity in people with Parkinson’s.

“For some people, dyskinesia can be really debilitating,” says Dr. Huot. “They cannot write. They have trouble eating. They have trouble getting dressed. It can be really disturbing and undermine their quality of life.”

Huot treated monkeys similarly to the way he had for psychosis to observe the impact on dyskinesia. The results were similarly encouraging – the approach effectively alleviated dyskinesia.

Huot will submit abstracts on both research projects for the Movement Disorders Society conference to be held in June 2017 in Vancouver, British Columbia and for the Society for Neuroscience conference to be held in November 2017 in Washington D.C.  He has also presented his research findings to his colleagues at The Neuro in Montreal.

Huot is grateful for the funding he received from the Parkinson Canada Research Program. “It is very difficult to get that first research grant,” he says. “The funding I received from Parkinson Canada has been critical. It launched my research program. I could not have pursued this research without the investment from Parkinson Canada and its donors.”

The results from his Parkinson Canada-funded projects also made it possible for him to successfully apply for and receive a substantial $1.4 million grant from the Weston Brain Institute to continue his research.

“I hope that we will have drug treatments to alleviate psychosis and dyskinesia from Parkinson’s disease in clinical trials within the next five to six years,” says Huot.

And while Huot’s research is focused on new treatments to improve the quality of life for people living with Parkinson’s, he agrees that all research that expands our knowledge of the disease advances the search for a cure.

“Until then, I am pleased to be making a contribution to help the patients I see every day in the clinic and offer them hope for an improved quality of life.”

To learn about the most recent Parkinson Canada Research Program funding recipients, visit the Research section at www.parkinson.ca.

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Discovering a way to put Parkin to work

Jacob Aguirre
Jacob Aguirre

Researchers now know that when a gene called Parkin is damaged, it can cause the familial form of Parkinson’s disease. Parkin’s role within brain cells is critical in making sure those cells produce energy and stay healthy.

What researchers need to know more about – and what biochemist Jacob Aguirre is investigating – is the chemical structure of Parkin. At the University of Western Ontario, Aguirre, a biochemist, uses a form of imaging called Nuclear Magnetic Resonance to study the structure of Parkin, right down to its foundation: Parkin’s atomic structure. Aguirre recently received a two-year, $30,000, graduate student grant from the Parkinson Canada Research Program to conduct his research.

“Our hope is that if we can get a firm understanding of Parkin’s atomic structure, that this can provide clues into its function in the cell and why these mutations are causing dysfunction for this protein, resulting in disease,” Aguirre says.

Pinpointing the chemical description of Parkin would help other researchers design new drugs that could either stimulate or block the protein’s function in brain cells.

Most researchers believe Parkin’s role is positive – that it turns on a recycling function to rid cells of damaged mitochondria, the energy producers within all cells. Aguirre, a PhD student, is focused on finding a way to activate Parkin when it is mutated, to restore that positive recycling function.

“We’re hoping that we can use a rational drug design method to come up with small molecules or drugs that might activate this protein,” Aguirre says. “This is a much more targeted form of drug discovery, rather than just serendipitous drug discovery.”

For Aguirre, the search for a drug that could address the fundamental causes of Parkinson’s disease is personal. Alzheimer’s disease and Parkinson’s disease affected his great-grandfather and his grandmother. He knows too well the devastating effects of these progressively debilitating illnesses.

“When you are exposed to it at a young age, it makes you really want to try to get involved in the research,” Aguirre says.

He hopes his research into Parkin’s atomic structure could not only led to new drugs but might be applied to new techniques like gene therapy.

“This has a lot of potential,” Aguirre says.

The search for new drug targets can sometimes be a frustrating quest, but he is motivated by his genuine excitement about the work and the thrill of discovery.

“It’s really an exhilarating thing to find something new,” Aguirre says. “To be able to do that in a field that I’m also personally affected by is just the cherry on the top.”

Watch our interview with Jacob Aguirre and read about other researchers recently funded by the Parkinson Canada Research Program.

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Mark your calendar and resolve to live your best in 2017

Kimberley Singian, RN, MSN

Every month, we have an opportunity for you to take charge of Parkinson’s and learn to live your best. Whether you are a person with Parkinson’s or sharing a home with someone living with the disease, why not make 2017 the year to learn more about how to live your best each day.

Topics cover understanding depression, medical marijuana, nutrition tips, and Parkinson’s disease and driving, among others. We’ve got a full year of podcasts (audio only) and webinars (visuals and audio), geared to topics that you won’t want to miss.

Give us one hour of your time each month and we’ll deliver insights from leading Canadian experts.  And you’ll be able to ask questions each session, too!

Mark your calendar now to make 2017 your year of learning!

February 14: Parkinson’s disease and the emotional rollercoaster; podcast with Sandie Jones, Parkinson Canada.

March 14: Medical Marijuana; webinar with Jonathan Zaid, founder and executive director of Canadians for Fair Access to Medical Marijuana (CFAMM). Zaid is recognized as a leading industry expert on medical cannabis, with a specialization on cost-coverage.

April 11:  World Parkinson’s Day – 200 years; podcast with Sandie Jones, Information and Referral Associate, Parkinson Canada.

May 11: Parkinson’s disease & nutrition; webinar with Nicole Shuckett, registered dietitian, from the Jeff and Diane Ross Movement Disorders Clinic and the ALS clinic at Sunnybrook Hospital.

June 13: Advanced stages of Parkinson’s; podcast with Sandie Jones, Parkinson Canada.

July 11: Physiotherapy and Parkinson’s; webinar with physiotherapists and founders Jan Goldstein and Rebecca Gruber of One Step Ahead Mobility.

August 8: Young onset Parkinson’s disease; podcast with Sandie Jones, Parkinson Canada.

September 12: Parkinson’s disease and driving; webinar with Beth Robertson, Occupational Therapist, McGill University Health Centre.

October 10: Build your PD health team; podcast with Sandie Jones, Parkinson Canada.

November 14: PD stress management; webinar with social worker Elaine Book, Center Coordinator and Clinic Social Worker for the Pacific Parkinson’s Research Centre, an NPF Center of Excellence, at the University of British Columbia, Vancouver, Canada.

December 12: Surviving the holidays; podcast with Sandie Jones, Parkinson Canada.
All of the one-hour sessions begin at noon (ET) and are delivered by experts on the topic of discussion. You will require access to a computer and you must register in advance at parkinson.ca/webinars for each individual session you plan to attend.

The January session, on PD and Depression, with Kimberley Singian, RN, MSN, and Dr. Zahra Goodarzi, was broadcast yesterday, and you can replay it in the coming days by going to parkinson.ca/webinars. All of the podcasts and webinars will be archived for playback a few days following their broadcast date.

Sandie Jones, an Information and Referral Associate at Parkinson Canada, will present each podcast, broadcast every second month in 2017, beginning in February. These sessions require only a telephone for access on the day of broadcast. You can choose to access the podcast using your computer.

Instructions to connect to podcasts only by phone:
Call 1(866)850-3418 or callers in the Greater Toronto Area may dial 416-915-8692. The participant code is 9415905.

Instructions to connect to podcasts only by computer
Log into the call using this link. Once you have opened the link, choose to enter as a guest. Turn on your speakers. Please send in any questions for Sandie Jones, in advance of the podcast, to education@parkinson.ca.

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