Challenges with movement only half the story in Parkinson’s

New Handbook reveals the non-motor side

Toronto, March 21, 2012 – People with Parkinson’s disease have a new tool to help them identify the non-motor symptoms they are experiencing with their Parkinson’s disease.

A Guide to the Non-Motor Symptoms of Parkinson’s Disease, the first of its kind in Canada, is a user-friendly, educational booklet, designed to help people with Parkinson’s recognize non-motor symptoms such as cognitive impairment, sleep problems and compulsive behaviours and learn about treatments and strategies to manage them.

The 50-page booklet, available in English and French, is the result of a partnership between Parkinson Society Canada and the CIHR Institute of Neurosciences, Mental Health and Addiction. The author, Dr. Ronald Postuma is a researcher in neurosciences at the Research Institute of the McGill University Health Centre (MUHC) in Montreal.

Postuma says that the booklet is intended to help people with Parkinson’s identify their non-motor symptoms, record what they are experiencing using the Non-Motor Symptoms Questionnaire at the back of the booklet, and discuss these symptoms with their doctor. He cautions it is not intended to replace the advice or instruction of a professional healthcare practitioner, or to substitute medical care.Citing a typical example, Dr. Postuma says a man with Parkinson’s may present with a urinary problem that is initially thought to be a prostate issue when, in fact, it may be related to Parkinson’s. “Many patients do not realize that urinary problems, constipation, insomnia and other symptoms are linked to Parkinson’s disease. As a result, they go untreated,” says Postuma who is also a neurologist at the MUHC and an Associate Professor of Neurology and Neurosurgery in the Faculty of Medicine at McGill University. “The booklet is a simple, pragmatic tool that I hope will improve patient care,” he added.

“This is an excellent example of the practical application of evidenced-based research that benefits clinical care,” says Joyce Gordon, President  & CEO, Parkinson Society Canada.

A Guide to the Non-Motor Symptoms of Parkinson’s Disease is available at www.parkinson.ca/NonMotorGuide.

Parkinson Society Canada’s national research program is dedicated to improving the quality of life for Canadians living with Parkinson’s. Its 10 regional partners and 240 chapters and support groups, have been providing education, support, and advocacy on behalf of over 100,000 Canadians living with Parkinson’s since 1965. To learn more visit www.parkinson.ca.

The Canadian Institutes of Health Research (CIHR) is the Government of Canada’s health research investment agency. CIHR’s mission is to create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened Canadian health care system. Composed of 13 Institutes, CIHR provides leadership and support to more than 14,100 health researchers and trainees across Canada. www.cihr-irsc.gc.ca

Advocacy Update

By Joyce Barretto and Yvon Trepanier, Co-Chairs, National Advocacy Committee

Brain Awareness Month – March 2012

Joyce Barretto
For Brain Awareness Month, an announcement recognizing March as Brain Awareness Month was read in the House of Commons, Senate and the Ontario legislature. A Brain Awareness information package was sent to all members of Parliament, senators, and members of the Ontario’s legislature. Vanessa Foran and Celina Chavannes, Neurological Health Charities Canada, provided testimony during the first of three federal Standing Committee on Health hearings on neurological conditions. Understanding brain disease in Canada, an article on the National Population Health Study of Neurological Conditions and the need for a National Brain Strategy, was published in the March issue of Abilities magazine and in a March 22, 2012 National Post supplement on Canada’s bio-economy.

Parkinson’s Awareness Month – April 2012

Yvon Trepanier
At time of publication, the following activities were scheduled for Parkinson’s Awareness Month: An announcement of April as Parkinson’s Awareness Month was to be read in the House of Commons, the Senate and the Ontario legislature. Parkinson’s Awareness information packages were to be sent to all members of the House of Commons, Senate and the Ontario legislature. Fresh tulips were to be delivered to all members of the Ontario legislature. Members of the Ontario Ambassador Network were to connect with their local MPPs during the week of April 9-13 (constituency week) to raise awareness of Parkinson’s and discuss key advocacy issues such as access to quality care, programs and treatment. Parkinson’s experts were to provide testimony as the federal Standing Committee on Health hearings on neurological conditions continue.

Research highlights 2011-2013

For a look at projects currently funded under Parkinson Society Canada’s National Research Program in the areas of

  • causes of Parkinson’s
  • complications of Parkinson’s
  • cognitive impairment and Parkinson’s
  • biomarkers
  • neuroprotection
  • quality of life
  • clinical fellowships that enable medical specialists, neurologists and neurosurgeons to acquire specialized expertise in Parkinson’s and other movement disorders

See Research Highlights 2011-2013.

Parkinson’s research: Achieving quality of life

Reprinted from the Media Planet Supplement in the National Post, March 22, 2012.

Parkinson’s disease affects over 100,000 Canadians. They all want a cure. But, in the meantime, they want to live the best lives possible with their disease. Research is likely the quickest way to get there.

Improving mobility

With symptoms such as tremor, slow movement, muscle rigidity and walking difficulties, people with Parkinson’s have impairments in coordinating posture, motion and navigation.

At the University of Western Ontario, Dr. Mandar Jog, director of the Movement Disorders Program at London Health Sciences Centre and his team, in collaboration with Dr. Michael Katchabaw, an associate professor in the Department of Computer Science, are building virtual reality scenarios to study how people with Parkinson’s navigate spaces such as an apartment interior and a grocery store aisle.

While wearing virtual reality (VR) goggles, the subjects will perform tasks like watering plants or picking up grocery items, as the basis for a VR-based rehabilitation program that correlates directly to activities of daily living.

“Cleaning the house and shopping are activities you can’t train for with standard rehabilitation techniques,” says Jog. “We want to create a rehab program that people can implement on their own, using the software we provide.”

The original pilot project was funded by Parkinson Society Southwestern Ontario through Parkinson Society Canada’s national research program.

In a longer-term project, Jog is using a technology-enhanced suit to understand the dynamics of human motion. The suit is a multi-sensor device that will relay critical information about how people with Parkinson’s move their arms, legs, heads and bodies to coordinate action as they move throughout their own homes.

“If the mobility suit can give us, say, three sensors that are the most predictive of mobility dysfunction in Parkinson’s,” says Jog, “we could possibly have a portable, easy-to-use, in-home mobility assessment system, in a few years’ time.” Together with the VR-based rehabilitation program, it makes a neat package.

Funding for the pilot “suit” project was provided by Parkinson Society Canada. The project continues to be funded by the Canadian Institutes of Health Research.

Managing non-motor symptoms

Parkinson’s is considered primarily as a movement disorder. However, some people tell their neurologists that the non-motor symptoms create the greatest disruption of quality of life. Others are not even aware that loss of smell, constipation, urinary problems, insomnia and depression are linked to Parkinson’s, so they don’t mention it.

Dr. Ron Postuma, a neurologist at the McGill University Health Centre, hopes to change that. He has developed a guide with a questionnaire to help people identify the non-motor symptoms of Parkinson’s and to discuss treatment options with their doctors. “The idea is to put the information into the hands of patients so they can seek medical help and to give them clues about what they may be able to do about these symptoms, on their own.”

The booklet resulted from a psychosocial research partnership between Parkinson Society Canada and the CIHR’s Institute of Neurosciences, Mental Health and Addiction. Postuma says it’s a perfect example of how clinical care can be improved by research.

Investing in research

“Innovative research has given us these three practical applications that will help people with Parkinson’s improve their quality of life. They are concrete examples of the need for ongoing investment in research.” says Joyce Gordon, President & CEO, Parkinson Society Canada.

To learn more about Parkinson’s research in Canada and to download a copy of A Guide to the Non-Motor Symptoms of Parkinson’s Disease, visit www.parkinson.ca.

World Parkinson Congress 2013

Montreal is the place to be on October 1-4, 2013 when Parkinson Society Canada welcomes the international Parkinson’s community to World Parkinson Congress 2013.

The World Parkinson Congress (WPC) is the only global Parkinson’s conference that brings together the entire Parkinson’s community – people with Parkinson’s disease, those who care for them, medical and health professionals and dedicated researchers working toward a cure and better treatments. Over 3,000 delegates from 70 countries attended WPC 2010 in Glasgow, Scotland.

Here’s what some delegates had to say about WPC 2010:

“I not only learned new things – scientific research issues – but more importantly, it was a reminder that the drive of my learning is to benefit those affected by Parkinson’s. I was inspired by the people with Parkinson’s who attended, sent videos and presented.” Clinician

“Every session was filled with a brilliant head of the field scientific researcher who explained (their topic) in a straightforward, comprehensive manner.” Researcher

“I could see how everyone, from the best scientists to the individual Parkinson’s sufferer, can have a real role to play in helping to overcome this disease. I had thought that the scientific research was further advanced than it is. I also saw that there are great possibilities for developing ways to improve the quality of life for people with Parkinson’s.” Person with Parkinson’s

Start planning now to attend WPC 2013:

November 2012: Opening date for submission of videos for the WPC 2013 video competition
December 2012: Opening date for submission of abstracts
January 2013: Registration opens for conference sessions and accommodation
July 2013: Early Bird registration ends