200 years closer to unlocking Parkinson’s disease

Joyce Gordon, CEO, Parkinson Canada

A message from Joyce Gordon, CEO, Parkinson Canada

It’s been 200 years since English physician James Parkinson first described the brain disease named after him in An Essay on the Shaking Palsy. Since 1817, major advances have been made in Parkinson’s research, including the development of various drug and other therapies to treat disease symptoms. And yet we still do not know precisely what causes Parkinson’s disease, and there is no cure.

For the 200th anniversary of Dr. Parkinson’s essay, and in conjunction with World Parkinson’s Day on April 11, we are proud to join international Parkinson community to #UniteForParkinsons. This global campaign will increase awareness and show our support for those living with the disease.  It aims to inspire new research and treatment initiatives also.

Parkinson families and friends cannot wait another 200 years for a cure. We hear you loud and clear. Research into this complex and life-altering disease is exploding and we must keep up the momentum for a cure. We are proud of the contributions the researchers we fund through the Parkinson Canada Research Program are making every day. Each discovery is critical in that, no matter how small, it brings us closer to the breakthroughs we dream about. Take a moment to read about some of these projects.

Throughout April, Parkinson Awareness Month, Parkinson Canada staff and volunteers host additional fundraising, education and awareness events, reaching out to you and other Canadians living with Parkinson’s. We are in malls and community centres, libraries and church halls, in communities across Canada. While some of these events have already taken place, I encourage you to take a moment to visit the interactive map on our website for local event listings. There may still be activities in your town that you can attend.  And don’t forget to check out the schedule of virtual events, too.

Next week, April 23 to 29, is National Volunteer Week. On behalf of everyone at Parkinson Canada, as well as those we serve, I wish to express our extreme gratitude to each and every one of our hundreds of volunteers, many of whom are people living with Parkinson’s and their family members.  Often, support groups and awareness initiatives are organized and implemented by volunteers. Others participate in and help organize fundraising events, especially our largest fundraiser Parkinson SuperWalk. Some volunteers sell tulips and some work at information booths at health fairs and mall displays. Many volunteers undertake several of these different roles. More than 100 volunteers serve as Parkinson Ambassadors, advocating to governments for changes that meet the needs of the Parkinson community. You are our everyday heroes, and we thank you.

UniteForParkinsons logo
#UniteForParkinsons logo

We are also incredibly fortunate and grateful to receive the services of many highly qualified volunteer experts coast to coast. These individuals lend their time and expertise to shape our future and drive our mission forward. Please join me in acknowledging the contributions of members of our Medical Advisory Committee, Scientific Advisory Board, Research Policy Committee and our Board of Directors. With them, we are able to produce unique resources like the Canadian Guidelines on Parkinson’s Disease and invest in life-changing research to improve quality of life.

This April and beyond, no matter where your Parkinson’s journey leads you, we are a phone call, an email or a computer click away. You can find information, support and resources at www.parkinson.ca or by calling the Parkinson Canada Information and Referral Service at 1-800- 565-3000. I invite you to take the time to reach out and tell us how we have helped you, and how we can better serve your needs. Or simply send a message to communications@parkinson.ca and tell us how you’re living well with Parkinson’s. Thanks to the generosity of our donors, we are able to be here for you, as one united organization offering help and hope at every step along the way.

Peering into the living brain

Christopher Phenix
Christopher Phenix

Diagnosing early Parkinson’s disease is a challenging process that relies largely on the clinical skills of neurologists who are familiar with the symptoms in other patients they have treated.  There is no biological test that can confirm early Parkinson’s – often, it is diagnosed late into its progression.

Researchers now know, however, that early in Parkinson’s onset, levels in the brain of a protein called GBA1 begin to drop significantly. The only way researchers have learned that, however, is by analyzing tissue samples from the brains of people with Parkinson’s disease who have died, or through experiments using human cells.

At the University of Saskatchewan, Christopher Phenix, an assistant professor of chemistry, has invented compounds that could be adapted into radioactive tracers that could attach to GBA1 in people. His goal is to allow researchers and clinicians to use Positron Emission Tomography (PET) to scan images of the brains of living people and study their levels of GBA1, which his tracer and chemical compound will make visible on an imaging scan.

“What we’re trying to do is develop a PET method where we can actually peer into the brain of a living person and study GBA1 activity or levels in real time,” Phenix says. He recently received a one-year, $45,000 pilot project grant from Parkinson Canada’s Research Program to pursue this research.

Not only would PET scans that reveal levels of GBA1 serve as a diagnostic aid for Parkinson’s disease, they could also be invaluable in measuring the effectiveness of drugs designed to increase the activity of the protein. Phenix’s compounds could produce a non-invasive test to see if the drugs are working, and could also help select patients with low GBA1 as good candidates for drug trials.

Being able to understand the underlying structures of Parkinson’s disease and how it progresses before most of the dopamine-producing brain cells have died, will also be critical once other researchers develop a therapy to stop the disease’s advancement.

For Phenix, this research is personal. His grandmother Lucille Sosiak had Parkinson’s disease.

“It’s a pretty devastating disease, so when you have a personal connection to it, it really helps you stay focused on your research and your goal to help people with Parkinson’s disease,” Phenix says.

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

There is hope in our walk

Blake Bell
Blake Bell

Blake was 50 years of age when he was diagnosed with Parkinson’s disease. At first he reacted like many — experiencing denial and withdrawal. He also suffered from depression, a common symptom of Parkinson’s. That was a decade ago. Over the last 10 years he has rebuilt his life: he started a construction estimating company and went back to work part-time. He also revived his social life. Bell even began exercising, taking up boxing with others. He says it helps relieve his symptoms and provides him with peer support.

“I can hardly hold a screwdriver now, where before I used to swing a hammer like it was nothing,” Bell says of the impact of Parkinson’s on his life. “And it’s hard to multi-task; your brain doesn’t work that way anymore.”

Fearing the stigma of the disease, Bell had a hard time explaining to people why he was shaking, or why he might be slower and unable to do the things he used to do so easily. It took years before he decided to share his diagnosis widely with others. But two years ago, he decided to let everyone know. “It’s hard to explain, I just knew it was time — it felt right.”

Bell posted his news on Facebook in 2015 and was joined by 25 friends supporting him in Parkinson SuperWalk 2016. He attributes part of his healing journey to participating in the walk. Voted the event’s first “National Hero,” he cried when he read some of his nomination letters.

“You don’t realize the impact you can have, just by being yourself,” he says.

You can watch Blake’s story here. Blake says he’d like a cure for Parkinson’s tomorrow. “Not necessarily for me, but for people who are just getting it. It would be wonderful.”

In the meantime, Blake calls on you and everyone for understanding, for those dealing with a chronic disease or disability. “I want people to treat other people, the way I treat them. That’s all I want.”

You can join Blake by becoming an everyday hero, inspiring extraordinary hope for Canadians living with and affected by Parkinson’s disease. Register online today at www.parkinsonsuperwalk.ca or by calling 1-800-565-3000.

You can help develop a visual tool to discuss Parkinson’s

We are calling on people living with Parkinson’s, family members and caregivers and health care professionals who care for people with Parkinson’s, to tell us what you need.

We invite you to participate in Educate PD, an exciting new project designed to help improve the way health care providers communicate with patients and caregivers about Parkinson disease.

Parkinson disease (PD) is a complicated condition associated with many symptoms managed by many medical treatments. “In our experience, discussing various issues in PD in the clinic setting can be complicated, limited by the ability of the health care provider to explain these issues and the capacity of patients and their caregivers to understand what is being explained,” says Dr. Sean Udow, one of the Educate PD study investigators.

The researchers would like to know what issues relating to PD you need more help to understand or explain. In order to gather this input, the investigators Dr. Sean Udow and Connie Marras, in a joint project of the University Health Network (UHN) and Parkinson Canada, invite you to complete this anonymous survey. Your responses will provide them with the information they need to make a tool designed to improve communication between patients, caregivers and health care providers.

The tool will make use of illustrations to improve both the ability of health care practitioners to explain, and the ability of patients and caregivers to understand, complicated issues in PD.

Feel free to invite other caregivers, family members or other people living with Parkinson’s disease to participate in this survey by sending them this link: https://www.surveymonkey.com/r/educatepd.

The survey will take between 15 and 20 minutes to complete and your participation is voluntary. Thank you for sharing your thoughts and your time before May 12th!

Research forum coming to Ottawa

Intro GuideYou are invited to attend a Parkinson Canada Research Forum on Friday, May 5, from 3 to 5 p.m. at the Lord Elgin Hotel in Ottawa. You’ll learn about how discoveries lead to innovative resources that can help people with Parkinson’s every day.

Presenters include Dr. Ron Postuma, Chair, Parkinson Canada Scientific Advisory Board and Associate Professor of Neurology and Neurosurgery, Faculty of Medicine, McGill University and Dr. Silke Appel-Cresswell, Assistant Professor and Neurologist, University of British Columbia and a recent recipient of a one-year Pilot Project Grant from the Parkinson Canada Research Program.

Dr. Postuma will talk about the Parkinson Canada Research Program, the role of the Scientific Advisory Board, and how discoveries made by funded researchers lead to knowledge translation and new resources that can help you live well with Parkinson’s. Dr. Postuma will showcase two important tools including the Guide to Non-Motor Symptoms of Parkinson’s Disease and his newest book Parkinson’s Disease: An Introductory Guide.

Dr. Appel-Cresswell will talk about her newest project, Investigating fungi: A new frontier in Parkinson’s disease. Dr. Appel-Cresswell is concentrating on changes to the olfactory system and the gut that occur long before the tremor, stiffness and walking difficulties that are the classic motor symptoms of Parkinson’s. You can read more about her project here.

For more information and to register for this free event, please contact Margaux Wolfe at 1-800-565-3000 ext. 3425 or by email at margaux.wolfe@parkinson.ca. Advance registration is required.