Education Update: New book available and thanks for your input

New book available

Parkinson Canada is very pleased to be able to offer you Parkinson’s Disease: An Introductory Guide, a new book developed by Dr. Ron Postuma and Dr. Julius Anang in collaboration with McGill University Health Centre. You can read and download the PDF of the book here.

Joyce Gordon, Dr. Ron Postuma, Julie Wysocki

This guide will help you better understand Parkinson’s disease. It describes the illness, changes in your body over time, treatment and care options, and possible health problems. There are also quick tips, including information about when and where you can find more help.

As a practical introduction to Parkinson’s disease, it is meant to help you learn about:

  • Symptoms of Parkinson’s and how you can spot them
  • Treatment and care options
  • Tips and strategies for you to take charge of your health
  • Possible problems to watch out for
  • When and where you can find more help.

It’s an excellent resource to review with your family and to bring to appointments with your health care team. You can also obtain a print copy of this comprehensive book by contacting Parkinson Canada at 1(800) 565-3000 or by email at education@parkinson.ca. (Quantities are limited.)

Educate PD project survey summary

Our sincere thanks go out to the 881 individuals who completed a recent survey for the Educate PD project, supported by Parkinson Canada. Respondents shared their thoughts on the sorts of issues relating to Parkinson’s disease that they need help understanding and explaining. Valuable insight from 450 people living with Parkinson’s, 335 caregivers and 96 health care professionals were compiled and analyzed.

Educate PD project investigators Dr. Sean Udow and Dr. Connie Marras find that: “In our clinical experience, people living with Parkinson’s and their care partners often have trouble understanding various aspects of PD. This understanding may be restricted by the complexities of PD itself and the ability of a health care professional to explain the complexities.”

Educate PD is a project aimed at designing a visual educational tool to help explain and understand Parkinson’s disease. This survey was a critical step in determining what issues the visual aid should address.

The Educate PD questionnaire was designed through a collaborative process between seven clinicians from four Canadian institutions, each with expertise in PD. The investigators categorized PD issues into seven main areas: basic science, diagnosis, motor symptoms, non-motor symptoms, cognitive symptoms, treatment and prognosis. The survey asked people living with Parkinson’s and caregivers to rate how well they understand and how satisfied they were with explanations of each of these areas. The survey asked health care professionals to report how often they encounter patients who have trouble understanding these areas, and how likely they are to use a visual aid to explain these issues.

Results of the survey indicate that the majority of people with Parkinson’s and their care partners do not think they fully understand most issues in PD and are not very satisfied with how their health care providers explain these issues. Similarly, the majority of health care professionals think it’s important for patients to understand PD and the majority would use a visual tool to discuss PD if one was made available.

The main areas of PD identified as poorly understood and poorly explained by all groups included cognitive issues and non-motor symptoms. Treatment, prognosis and basic science were also identified as important, though not as strongly. This study therefore recommends a heavier focus on these areas when designing a visual tool to help discuss Parkinson’s disease.

There was a general lack of understanding and low satisfaction in the explanation of all areas of PD. Overall, the results of this survey support the need to develop a visual tool to help discuss PD. Drs. Udow and Marras plan to use the results of this survey to focus on the content areas identified as the most important to understand and currently the least satisfactorily explained. Since there was a general lack of understanding and low satisfaction in all areas, the investigators will also try to be comprehensive in the creation of this educational tool.

Drs. Udow and Marras expressed their appreciation to all those who responded to the survey.  Parkinson Canada will keep you informed about the development of the Educate PD tool for health care professionals to use with people living with Parkinson’s and their caregivers.

Chasing the culprit in Parkinson’s disease

Joel Watts
Joel Watts

When Joel Watts was 10 years old, his father died of Creutzfeldt-Jakob Disease (CJD), a rare brain disorder caused by the strange behaviour of a class of proteins called prions. These agents later became notorious as the cause of the now infamous brain-wasting condition dubbed “mad cow disease.”

But Watts, whose father died in the early 1990s, did not connect his father’s loss to any specific neurodegenerative disorder until much later, when he was studying at university. Today, the biochemistry professor at the University of Toronto is on the cutting edge of investigating the similarities between prions and the way other proteins spread through the brain and compromise its functions.

“What I’m trying to do is take something that is known about prion disease and apply it to Parkinson’s research,” Watts says. This research is being funded by a two-year, $90,000, Pedaling for Parkinson’s New Investigator Award from the Parkinson Canada Research Program.

Instead of prions, he studies a protein called α-synuclein, which is directly involved in the development of Parkinson’s. The comparison with prions lies in the way accumulations or clumps of α-synuclein spread throughout the brain.

“This aggregate might start in one cell and then somehow get out of that cell and make its way into a neighbouring cell,” says Watts. “These little pieces of aggregated protein can then start the process in the next cell.”

Just as the mis-folded arrangement of prions damages brain cells, so too does the shape of α-synuclein affect brain cells and contribute to Parkinson’s disease. Watts is categorizing these various shapes and their role in the development of this disorder. His ultimate goal is to shed light on mechanisms that a new therapy could target.

Watts emphasizes that the infectious diseases prions cause, such as CJD, are entirely distinct from brain disorders like Alzheimer’s or Parkinson’s, which have never been identified as contagious or communicable. Nevertheless, Watts remains eager to build on the body of knowledge that surrounds prions, which he believes will lead to fresh insights about Parkinson’s.

“With prions, the protein exists on the outside of the cell so it’s very easy for it to touch another cell,” he says. “Whereas α-synuclein is inside the cell, so how does it get out of one cell and get into another cell? That’s one of the hottest areas of research right now.”

This spring, Watts presented an update on his research to the Parkinson community in Parry Sound, Ontario, where the Pedaling for Parkinson’s event is held each summer. Previous Parkinson Canada funded researchers will ride alongside other riders on July 14 to 16, as part of the seventh annual Pedaling for Parkinson’s event. Join them at pedalingforparkinsons.ca.

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

Save the date: The Victory Summit® is coming to Toronto

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 Toronto, Canada. Thanks to generous sponsors and local donors, this event is offered free of charge with complimentary lunch served.

Mark your calendar now for Saturday, October 14, 2017 at the Toronto Congress Centre, 650 Dixon Road.

Advance registration is required and opens in mid-July 2017. Visit www.parkinson.ca closer to that time and check your email inbox for registration details.

Join the Davis Phinney Foundation, Parkinson Canada and other organizations from the Parkinson’s community for a day of information and inspiration. Featuring researchers, clinicians and  physical therapists  in the field of movement disorders, The Victory Summit® event provides essential tools and resources that people with Parkinson’s can use to live well today.

The Toronto event will include an exhibit hall with complementary therapies, local resources and national organizations. The breakout sessions include:

  • Living Well with Parkinson’s
  • Exercise and Movement
  • Cognition and Non-motor Symptoms

Read more in this promotional flyer. Also, take note that the next Victory Summit® in Canada will be held in Winnipeg, Manitoba on April 7, 2018.