Get active. Stay informed. Those are the key messages in Parkinson Society Canada’s new Awareness Month materials. For April, Parkinson’s Awareness Month, we are focusing on the many benefits of physical activity for people with Parkinson’s.

In this issue of e-Parkinson Post, you will read how one person with Parkinson’s has successfully incorporated exercise into her daily life. You will discover what elements help make a good physical activity program for Parkinson’s. You can download a copy of the new tip sheet on Physical Activity and Parkinson’s Disease Parkinson Society Canada has launched with the Canadian Physiotherapy Association.

You will also find information on A Guide to the Non-Motor Symptoms of Parkinson’s Disease, a new booklet to help people with Parkinson’s recognize non-motor symptoms and learn about strategies to manage them.

We share some of the articles we have recently submitted to other publications:

• Can exercise help improve cognition, language, voice or swallowing in Parkinson’s? (Canadian Association of Speech-Language Pathologists and Audiologists)
• Parkinson’s research: Achieving quality of life (National Post supplement)

We also bring you up to date on the advocacy activities not only for Parkinson’s Awareness Month but for National Brain Awareness Month in March.

We invite you to join our webinar on cognitive impairment in Parkinson’s, featuring one of our researchers, Dr. Oury Monchi. We also invite you to take a look at the latest copy of our Research Highlights (2011 -2013).

Throughout April, there are lots of exciting educational and recreational events happening in communities across Canada, including some scheduled for April 11^th, World Parkinson’s Day. See the calendar of events at www.parkinson.ca to find out what is happening in your region. You can also contact your regional Parkinson Society for resources on physical activity and exercise.

Online registration is now open for Parkinson SuperWalk. Visit parkinsonsuperwalk.ca to find the walk location nearest to you and sign up today.

We want to know what you think about the newsletter and articles. Please leave a note in the Comments section. Your feedback will make this publication better. Don’t forget to pass along the link to someone you know so that they may enjoy it too.

Marjie Zacks
Editor

Carole Hartzman

Five mornings a week, Carole Hartzman and her exercise buddy take a 50-minute stroll along the waterfront. Twice a week, she attends a seniors’ fitness class.

Carole, 70, has always been physically active, but after she was diagnosed with Parkinson’s disease in November 2003 and evaluated at the Maritime Parkinson Physiotherapy Clinic in Halifax, she stepped up her exercise program and bought an elliptical trainer and universal gym machine to work out at home.

“I try to do three things a day. A walk, an exercise class and a session on the elliptical trainer. Or maybe sessions on both machines plus a workout video. Anything that catches me that day, I do it,” says Carole.

The benefits are immediate and wide-ranging. “You move. Keeping the core body firm and tightening it allows me to get up from my chair. The stronger the body, the stronger everything else. Everything works better if I’m strong.”

Carole now has difficulty sometimes initiating movement. “I freeze in place, so I have to think, how I am going to get started again? If I want to go from the stove to the refrigerator, I have to consciously tell myself, look at a point that’s closer to the refrigerator, pick up your left foot, now start moving it. Once I release that frozen state, I move, but I have to march myself through the steps.”

Knowing that the clinic will assess her mobility, flexibility and balance every six months, Carole says, “I want my score to be high, so I do my best to do well on those exercises. It’s a motivator.”

She credits the late Dr. George Turnbull, a co-founder of the clinic, with setting her on the right track. “He emphasized that you have to exercise and you have to choose activities you’re enthusiastic about because if you don’t, you won’t continue them.”

Carole enjoys dancing, has taken voice therapy and singing lessons, learned tai chi, and anticipates adding her recently-acquired Nordic walking poles to her morning walks. “I do whatever comes to mind to keep me moving.”

Having travelled extensively with her husband, Carole recently took a weekend trip to New York, on her own, deliberately requesting wheelchair assistance at the airport. “I wanted to see what it was like using a wheelchair. It was an interesting experience because, on the one hand, you think the wheelchair is going to make you feel debilitated but, on the other hand, it gave me the opportunity and freedom to travel by myself.”

Carole’s exercise goal is “to keep myself mobile forever so that I may continue to enjoy the world outside my home.”

Read more Stories from the Front on Parkinson Society Canada’s website.

Janet Millar

Battling Parkinson’s disease? Fight back with exercise. That’s the message emerging from a growing body of research finding that people with Parkinson’s who exercise fare better over time than those who are not active.

“Exercise is not just beneficial for people with Parkinson’s, it’s essential,” says Janet Millar, Clinical Director and Physiotherapist at the Maritime Parkinson’s Physiotherapy Clinic in Halifax. “In our clinic, we tell people that exercise is as important as medication. We say this because recent literature suggests that exercise can and does improve Parkinson’s symptoms.”

Typical symptoms include slowness and stiffness, impaired balance, muscle rigidity and stooped posture. “These movement issues become impossible to deal with, at some point, if people with Parkinson’s do not keep themselves in good physical condition,” says Millar.

Noting that almost any kind of physical movement can be beneficial, if done properly, Millar recommends to her clients with Parkinson’s:

Exercise regularly, meaning daily. Make it challenging. “Those are the two criteria in which the literature tells us Parkinson’s can be slowed down.”

Focus on five key areas: endurance, flexibility, balance, posture, strength. “Walking is one of the most beneficial activities. It addresses several of those five issues and it provides opportunities to pay attention to stride length, gait pattern and arm swing, which are all affected in Parkinson’s.”

Emphasize the anti-gravity muscle group. “These are the muscles that straighten you or make you taller.” Back extensors, knee straighteners, triceps – the muscles at the back of the elbow that straighten the arms, enabling you to reach up, to the side and behind the back, shoulder blade squeezes. “These work against the typical stooped posture in Parkinson’s.”

Make exercise a lifelong habit. “There is something every single person can do – right from the person who can work out in the gym alongside everyone else to the person who may be confined to a bed and need extra support and intervention.”

Get active and stay active. People who enjoy group exercise can look for classes at community recreation centres. If not, they may find something they can do on their own or with a buddy. Millar: “Find physical activities that the person likes or will, at least, tolerate. I think that is the secret to compliance.”

Parkinson Society Canada, in partnership with the Canadian Physiotherapy Association, has created a new Physical Activity and Parkinson’s Disease tip sheet that explains why aerobic, strengthening, flexibility and balance activities are important in Parkinson’s and gives examples of activities within each category. It also includes a handy log to help you stay on track with your physical activity routines.

For more information about physical activity and exercise, see Exercise.

Parkinson Society Canada is hosting an hour-long free webinar on Cognitive Impairment and Parkinson’s disease, on Tuesday, April 17, 2012 at 1 p.m. EST.

In recent years, research has identified cognitive changes, such as dementia, depression and psychiatric symptoms, as part of the progression of Parkinson’s disease. This webinar provides an opportunity for both people living with Parkinson’s and health care professionals to recognize cognitive changes and learn how to manage them.

Dr. Oury Monchi

The presenter, Dr. Oury Monchi is an Associate Professor in the Department of Radiology at the University of Montreal. He also directs the Parkinson Cognition Action and Neuroimaging laboratory at the research centre of the Institut universitaire de gériatrie de Montréal. A major goal of his research is the early prediction of dementia in Parkinson’s and how it relates to that found in other neurodegenerative disorders.

You must register, in advance, online at www.parkinson.ca/webinar to participate in this live webinar.

This webinar is made possible through a Canadian Institutes of Health Research Knowledge Translation Grant.

(An article on a similar topic was submitted to the Canadian Association of Speech-Language Pathologists and Audiologists)

Angela Roberts-South, Speech-Language Pathologist
National Parkinson Foundation Centre of Excellence, London Health Sciences Centre
PhD Student, School of Communication Sciences and Disorders
University of Western Ontario
London, Ontario

Angela Roberts-South, Speech-Language Pathologist

Exercise is accepted as a part of a healthy lifestyle. Of late, researchers are questioning the value of exercise in actually preventing and slowing the progression of Parkinson’s disease.

Traditionally the role of exercise has fallen under the realms of physiotherapy, occupational therapy and nursing. However, new research suggests that exercise may have a role in remedying areas that speech-language therapy traditionally targets, such as cognition, language, voice and swallowing in Parkinson’s.

Cognition and language

Cognitive impairment is a Parkinson’s symptom with substantial effects on quality of life. Cognitive changes may begin early in the disease and may even precede motor symptoms for some people. These changes may affect language functions in ways that are evident on language assessments and particularly noticeable in conversation and in dual-tasking activities such as walking and talking.

While there is research showing that exercise is beneficial for cognition in Alzheimer’s disease, to date, there are no large randomized controlled trials to help answer this question in Parkinson’s. However, a few studies provide some insight into the potential benefits of exercise on cognition and language in Parkinson’s.

• Nocera, et al. (2010) reported the case of a woman with Parkinson’s who showed improved cognitive and language function following an exercise program that included 20 minutes of stationary bike riding, three times a week for eight weeks. In addition to substantial gains in executive function, working memory and verbal fluency, the researchers reported language improvements, such as more efficient and effective communication. The subject produced fewer grammatical errors and showed an impressive reduction in fluency interruptions and fillers (e.g., “uh”; “um”), which may reflect a reduction in word retrieval difficulties.
• In a study published by Cruise, et al. (2011), 34 people with Parkinson’s were allocated to either an exercise group or a control group. The exercise group participated in a 60-minute exercise session (cardiovascular and strength training) twice a week. In cognition and language areas, such as spatial working memory, verbal fluency and semantic fluency, the researchers reported that the exercise group showed gains that met statistical criteria for clinical substantial benefit.

These studies suggest a potential benefit of general exercise on cognition and language that is worth further investigation.

Voice and swallowing

Angela Roberts-South and Professor Scott Adams work at the University of Western Ontario on techniques to optimize communication for individuals with Parkinson's disease

Voice and swallowing problems are common in Parkinson’s. There are no published studies evaluating the effect of general physical exercise programs, such as cardiovascular and strength training, on improvements in voice and swallowing in Parkinson’s. However, Russell, et al. (2010) published an excellent comprehensive review of targeted exercise programs in Parkinson’s. General physical exercise programs do not target a specific muscle group or motor target. Russell, et al. defined targeted physical exercise as the “systematic, repeated and controlled activation of particular groups of muscles for particular sequences of goal-directed actions.”

• Lee Silverman Voice Treatment^® (LSVT) is probably the most prominently reported targeted exercise program. It is an intensive exercise program performed by an LSVT-certified therapist. It involves following a prescribed exercise and stimulus protocol targeting the laryngeal and respiratory systems and mouth opening. Many studies have reported the benefits of LSVT on voice intensity. Recent research suggests that LSVT may also benefit swallowing (Sharkawi, et al., 2002).
• Expiratory Muscle Strength Training (EMST), developed by Dr. Christine Sapienza, is another targeted exercise program. (The expiratory muscles are used in coughing.) EMST uses a specially-developed device and a prescribed exercise program to improve expiratory muscle function, which may have benefits for respiration and swallowing in Parkinson’s (Saleem, et al. 2005, Pitts, et al. 2009, Troche, et al. 2010). While EMST requires a special device, it can largely be completed at home unsupervised. A therapist is needed to calibrate the device and evaluate or re-set therapy targets.

Outside of LSVT and EMST, the literature on targeted, systematic exercise programs for voice and swallowing in Parkinson’s is sparse. There are other exercise programs reported in the literature but they have either failed to meet expected gains or failed to demonstrate carryover into functional activities. This makes it difficult for health professionals to apply them effectively in clinical settings.

Summary

There is a shortage of evidence on the benefit of exercise programs for cognition, language, voice and swallowing in Parkinson’s. Exercise targets, intensity and duration differed in the studies reviewed, however, there were some promising improvements in cognition and language with general exercise/fitness programs. As well, certain targeted exercise programs appear to demonstrate benefit.

Physical exercise programs are not often considered a companion to traditional speech-language therapy in Parkinson’s. However, it is possible that, as more research is completed, speech-language pathologists may need to increase their knowledge of both the application and development of targeted exercise programs and their knowledge of the adjunctive benefits of general physical exercise so they can incorporate it into therapy plans for people with 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.

Dr. Ron Postuma

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.

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.

“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

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.

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.

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.

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