Archive for June, 2009

Message from the editor

Welcome to the latest edition of E Parkinson Post!

In this issue, we shine a spotlight on balance, a critical factor in Parkinson’s. We begin with a look at research and strategies for improving physical balance and mobility. Some involve modern electronics, such as iPods and video games; others require a swimsuit or trunks and access to a pool.

However, balance is also about life balance – juggling work and home, making time for family and friends, scheduling time for recreation and travel, volunteering in the community. In our First Person feature, Marc Bellefeuille describes how his passion for sports weaves through the many threads of his life.

The Advocacy column addresses the delicate balancing act of using the right strategies and tactics to ensure that our advocacy efforts have maximum impact, such as the federal government’s June 5, 2009 announcement of the first-ever Canada-wide study on neurological diseases.

We congratulate the first Early Bird Winner for SuperWalk for Parkinson’s 2009. Online registration is higher than ever before. If you haven’t registered yet, we invite you to register now.

Comments, questions and story ideas are always welcome. You can send them to editor@parknison.ca

We hope you enjoy this issue.

Marjie Zacks
Editor

editor

Music to walk by . . .

Could walking to music improve gait and balance in Parkinson’s? That’s what Dr. Lesley Brown, a kinesiology professor at the University of Lethbridge would like to know.

Director of the Balance Research Laboratory at the University of Lethbridge, Dr. Brown notes, “One of the major challenges with walking, that leads to instability and falls, is a further slowness when people with Parkinson’s try to multi-task; for instance, walk and talk or walk and carry something. This seems to be detrimental to their ability to maintain balance. We’re trying to see if we can use music to help improve some of the multi-task deficits that people with Parkinson’s experience.”

Dr. Lesley Brown

Dr. Lesley Brown, Associate Professor, Kinesiology, University of Lethbridge

In her small research study, 40 people with Parkinson’s participated in a walking program, 30 minutes a day, three times a week for 12 weeks, while listening to an iPod loaded with the type of music the person liked but carefully selected to match the individual’s walking tempo and rhythm. Participants’ walking abilities were assessed before and after the walking program.

The research data are still being collated but already show some promising results.

As expected, in the pre-test assessment, people with Parkinson’s walked more slowly while listening to music on an iPod than did people in the control group (those who didn’t have Parkinson’s).

However, after the 12-week walking program, “the participants with Parkinson’s were able to walk while listening to music without any detriment to their walking pace,” says Dr. Brown. “That’s exciting because it tells us that this multi-tasking deficit that Parkinson’s patients experience can be alleviated with training.”

Another interesting finding was that for people with Parkinson’s, the ability to walk while doing something that wasn’t movement-related – counting backwards – had also improved. “The hope is that this improvement might be extended to everyday dual-tasking scenarios,” says Dr. Brown. She theorizes that, with practice, participants had learned to distribute their attention to more than one task.

The findings point to the potential for physiotherapists to recommend walking to music as an enjoyable activity for people with Parkinson’s to add to their exercise regimen as an ongoing, alternate therapy for disease management.

Another segment of the study is measuring the participants’ ability to step over obstacles in their path. These results are not yet available.

In the meantime, Dr. Brown cautions against strapping on an iPod and heading to the mall. She stresses that “people need to walk to music on their iPods in a quiet place where they can monitor their own safety until they become comfortable walking to music.”

Dr. Brown’s study was conducted in Lethbridge and Halifax, in collaboration with Dr. George Turnbull, professor of physiotherapy at Dalhousie University and founder of the Maritime Parkinson Clinic. It is part of a large-scale research study centred at the University of Calgary with principal investigator, Dr. Bin Hu.

Water workouts: Freedom to move

Patti Bishop, Water Fitness

Patti Bishop, Water Fitness

By Patti Bishop, B.Sc.

When you think of strength training, you likely think of the gym and activities such as lifting dumb bells or using rubber tubing and cables. However, there’s another place where people with Parkinson’s can have fun, find freedom and work on fitness goals – the water! Water is a fantastic medium for a full body workout.

Here are 10 water exercises to help you stand taller and stronger and move more freely.

Balance and core muscles

Let the water’s continual movement help stimulate your balance receptors and activate your core muscles.

• Stand with both feet together and scull your hands in front of your body (moving hands side to side as if smoothing two piles of sand).
• Stand on one leg and scull your hands in front of the body.
• Stand on one leg. Scull with the opposite hand and lift the other hand out of the water.
• Take 5 steps, stop and stabilize on either one foot or both.
• Lean forward in the water until your feet rise off the pool floor. Push your arms down and pull your knees in until you can bring your feet underneath you and stand up tall.

Resistance and strength training

Use the resistance provided by the density of the water to increase the power of your workout and strengthen the muscles along the back of your body.

• Stand with your feet hip-width apart and palms together in front of the body. Push arms away from each other as if giving someone a big hug. Throw your arms out and slowly bring them back together.
• Stand with your feet hip-width apart, palms up and elbows at your sides. Press your hands down into the water until your arms are straight. Return your hands slowly to the starting position.
• Place your hands at your sides and scull the water for balance. Let one leg lift to a 45-degree angle in front of you. Push it down and behind you slightly.

Gait improvement

Let the buoyancy of the water help you naturally lift your legs and take bigger steps. Work your gluteal (butt) muscles as you push each leg down to the floor.

• Practice walking forward, backward and sideways. Use the lines on the bottom of the pool as a guide.
• Practice starting and stopping.


Health and safety tips

Footwear. Wear water shoes with good support. They will give you traction and better balance on the pool floor.
Handwear. Try swim mitts. They stabilize you in the water, by increasing the surface area of your hands, and provide resistance which helps build upper body strength.
Partnering. Work out with a partner. This will help you feel comfortable and safe in the water.
Hydration. Fill up on fluids beforehand. Keep a water bottle nearby to avoid dehydration which can cause dizziness and fatigue.

Patti Bishop, B.Sc. is a personal trainer, at North Star Fitness Inc., who specializes in working with people with movement disorders.

Does playing video games benefit people with Parkinson’s?

Beth Holloway, St. John’s Newfoundland

Beth Holloway, St. John’s Newfoundland

Beth Holloway held a Wii bowling tournament in her St. John’s, Newfoundland home, recently, with six friends who, like Beth, have Parkinson’s disease. She also performs a tightrope walk, regularly, using her Wii Fit balance board. She says, “I can’t say these video games help my balance because I just don’t know. But I like the fun of it. Anything that gets a person moving, as far as I’m concerned, is a good thing.”

She is possibly on the right track, judging from current research into the usefulness of Wii games in helping people with Parkinson’s.

• Canadian research
• US research

Canadian research

In a small study at the University of Ottawa, Dr. Louis E. Tremblay, associate professor, in the School of Rehabilitation Sciences, and four of his physiotherapy undergraduate students* designed a 45-minute activity program that they asked people to do at home, three times a week, for six weeks.
• 30 minutes of Wii Fit, starting with simple yoga postures, then progressing to balance games such as ski slalom, ski jump and table tilt
• 15 minutes of Wii Sports – bowling or golf

“The goal of the project was to determine if the use of the Wii console and the Wii Fit game with its balance board could help in the rehabilitation of people with Parkinson’s disease,” says Jean-François Esculier, a newly graduated physiotherapy student who was on the research team.

“People with Parkinson’s are usually taken care of by the healthcare system in the late stages of the disease. The goal of the study was to establish a program to help people take care of themselves and slow down the decline of functional disabilities, such as balance problems, from the very beginning.”

The 20 people in the study were tested before and after the six-week program.
• 11 had Parkinson’s: 5 women, 6 men; average age – 62 years; with an average Unified Parkinson’s Disease Rating Scale (UPDRS) motor score of 2.2. (The range is 0 to 5.)
• 9 were healthy subjects: 4 women, 5 men; average age – 63.5 years; some were partners of the participants with Parkinson’s

Here is a sampling of the results for the participants with Parkinson’s:

Test Description Result after Wii training
Static balance Standing on one leg. 53% improvement on left leg

58% improvement on right leg

Sit-to-stand Sit on a chair. Stand, sit and repeat as many times as possible in 30 seconds. 45% improvement
Timed up-and-go Stand from a seated position. Walk three metres. Turn. Return to the chair and sit. 23% improvement
Community balance and mobility assessment A series of 13 tasks that evaluate a wide range of balance and mobility skills. 21% improvement
Gait speed Measurement of walking speed over 10 metres. 16% improvement
Force platform Stand on a platform device while a computer measures the movement of the person’s centre of gravity. no statistically significant improvement

Esculier notes, “An overall 55% improvement in the one-leg stance is great because, in one phase of walking, you have to stand on one leg; so, if you can improve that, you have more stability. The 45% change on the sit-to-stand test indicates improvements to both balance and leg strength.”

Interestingly, when participants rated their own performance, they did not think their balance had improved, although the objective tests showed that it had. Esculier suggests the subjects’ under-estimation could be a good thing because it could guard against taking unnecessary risks and increasing the likelihood of falls. Participants did report that they were walking a bit more easily than they did before.

The fun factor was undisputed: 83% of participants enjoyed the activity program much or very much; the remaining 17% were moderate in their praise; no one reported disliking the program. In conversations with participants after the study had ended, the researchers found that people have continued using the Wii because they like it, they find it helpful and they enjoy playing the video games with their grandchildren.

Esculier recommends that, before powering up the Wii for exercise, people with Parkinson’s should see a physiotherapist for a balance and mobility assessment. The balance exercises on Wii Fit require standing on a balance board but the Wii Sports can be done sitting or standing.

(* The student researchers were Patrick Bériault, Jean-François Esculier, Karine Gagnon and Joanie Vaudrin.)

US research

At the Medical College of Georgia, Dr. Nathan (Ben) Herz, assistant professor of occupational therapy and his colleague, Dr. John Morgan, assistant professor of neurology and director of the Movement Disorders Program’s National Parkinson Foundation Center of Excellence are also doing groundbreaking research on the use of Wii in Parkinson’s.

Dr. Herz visited Canada, in May, to address conferences hosted by Parkinson’s Society of Southern Alberta and PSC Southwestern Ontario Region.

Here are few of the points Dr. Herz shared with his Canadian audiences:

• The Wii promotes exercise that can be meaningful and purposeful.
• Some games can even be used for rehabilitation therapy to improve functional abilities in activities of daily living, such as, filling a pot with water or cracking an egg.
• Wii Sports, in particular, address many of the areas that need rehabilitation.
• The games keep people occupied without them realizing its therapeutic benefits.
• Success in Wii activities is closely tied to people’s ability to integrate their movements.
• The physical, cognitive, psychological and social aspects of playing with the Wii can have positive impacts on the health and wellness of participants.

Contact your regional Parkinson Society, to see Dr. Herz’ research presentation and Wii demonstration on DVD.

Advocacy

Yvon Trepanier

Yvon Trepanier

By Yvon Trepanier,
Chair, National Advocacy Committee

Effective advocacy – a balancing act

Effective advocacy is a balancing act involving many people and three key activities: lobbying, use of media, and grass-roots action. Each appeals to different audiences and requires careful thought and planning to ensure coordinated effort and maximum impact.

Lobbying is activity aimed directly at policy makers with the objective of influencing their decision-making. This function is undertaken by an organization and involves communicating with elected politicians, political staff, and bureaucrats. In the case of Parkinson Society Canada, senior staff and volunteers work together to lobby the Government of Canada, Members of Parliament and the Senate, and staff within the federal bureaucracy for investment and policy change relevant to the Canadian Parkinson’s community.

Media profile is noticed by government decision-makers and offers much-needed support to the lobbying effort. At the same time, large portions of the community become informed about, and potentially engaged in, the issue. Organizations generate media coverage, but so, too, can local stakeholder groups and individuals. Letters to the Editor are a very effective way to get messages out – and can be done in a coordinated, strategic manner so we have visibility in a community or national paper.

Grass-roots advocacy action is essential to raising the profile of issues on a large scale. It brings the voice of individuals to the forefront and allows elected politicians to hear directly from their constituents. Grass-roots action reinforces the messages communicated by the organization and brings the issue to life in real terms through personal experience. When well coordinated, grass-roots campaigns facilitate communication with all elected representatives at the same time, thereby creating a buzz about a specific issue at a specific time.

Parkinson Society Canada has an active National Advocacy Committee made up of volunteers and staff. This committee works to ensure that our approach to advocacy is balanced and offers opportunities for everyone to get involved. To date, our national network of grass-roots advocates covers over 100 ridings. Our goal is to have at least one volunteer in each of the 308 ridings across Canada so we need your help. To learn how you can lend your support to this effort, visit the PSC Advocacy Café.

News Releases – June 5, 2009

► Government of Canada Announces First-ever National Study on Neurological Diseases

► Health Charities Applaud Government of Canada’s Research Investment in Neurological Conditions

► Joyce Gordon, Chair, Neurological Health Charities Canada: Response to Ministerial Announcement of $15 million to fund 4-year national population-based study of neurological conditions in Canada

Back Row:  Patrick Brown, MP Barrie; Femma Norton, Canadian Alliance of Brain Tumor Organizations; Tim Irwin, Huntington Society of Canada; Derryn Gill, Spina Bifida & Hydrocephalus Association of Ontario; Rosie Wartecker, Tourette Syndrome Foundation Canada; Janet MacMaster, March of Dimes Canada; Diane Gillespie, Dystonia Medical Research Foundation Canada; Yves Savoie, MS Society of Canada; Kent Bassett-Spiers, Ontario Neurotrauma Foundation; Debbie Bezenkowski, Alzheimer Society of Canada.  Front Row: Catherine Sherrard, Muscular Dystrophy Canada; The Honourable Leona Aglukkaq, Minister of Health for Canada; Bobbi Greenberg, ALS Society of Canada; Inez Jabalpurwala, NeuroScience Canada; Joyce Gordon, Parkinson Society Canada.

Back Row (left to right): Patrick Brown, MP Barrie; Femma Norton, Canadian Alliance of Brain Tumor Organizations; Tim Irwin, Huntington Society of Canada; Derryn Gill, Spina Bifida & Hydrocephalus Association of Ontario; Rosie Wartecker, Tourette Syndrome Foundation Canada; Janet MacMaster, March of Dimes Canada; Diane Gillespie, Dystonia Medical Research Foundation Canada; Yves Savoie, MS Society of Canada; Kent Bassett-Spiers, Ontario Neurotrauma Foundation; Debbie Bezenkowski, Alzheimer Society of Canada. Front Row: Catherine Sherrard, Muscular Dystrophy Canada; The Honourable Leona Aglukkaq, Minister of Health for Canada; Bobbi Greenberg, ALS Society of Canada; Inez Jabalpurwala, NeuroScience Canada; Joyce Gordon, Parkinson Society Canada.

Joyce Gordon, President & CEO of Parkinson Society Canada with The Honourable Leona Aglukkaq, Minister of Health for Canada

The Honourable Leona Aglukkaq, Minister of Health for Canada (left) and Joyce Gordon, President & CEO of Parkinson Society Canada

First Person

Staying engaged
By Marc Bellefeuille

As 2006 was drawing to a close, I noticed that something was not right, especially when I was running. I have always tried to keep in shape with a core set of activities – running, hockey, cross-country skiing and cycling. In fact, sports are an important part of my socializing with friends. So when I started a new job, in early 2007, I was thrilled to discover that some of my colleagues also enjoyed running.

However, when we went running at lunchtime, a few times a week, I began hiding the fact that my leg would get stiff barely seven minutes into our run. And on the way back to the office, I often tried to conceal that I was limping. In addition to these subtle physical changes, I found it increasingly difficult to keep up with conversations in social and business settings.

In my bid to find out what was going on, I went to a physiotherapist, a chiropractor and finally to my family doctor who sent me down the path of X-rays and MRIs, all of which came back negative. Then, in October 2007, I had an appointment with an EMG specialist* who referred me to Dr. David Grimes at The Ottawa Hospital. In November 2007, at the age of 45, I was diagnosed with Parkinson’s disease.

My first reaction was a kind of denial. I kept searching the Internet to see if anything else could be causing my symptoms, until someone said to me, “What if it is some other disease, what will you do then?” That brought me back to accepting the diagnosis.

I attended my first Parkinson’s support group meeting in January 2008, and introduced myself, uncertain of what to say, but I listened to the discussions. By the next meeting, I had the perfect intro. My wife, Tracy, had pointed out similarities between Michael J. Fox and our family: aside from the Parkinson’s connection, our wives have the same name, our teenaged sons have the same names and we each have a set of twin daughters. The parallels served me well when I made a presentation at the recent Perspectives on Parkinson’s event in Ottawa.

In retrospect, 2008 was a year of adjustments, as I finally settled in with a stable cocktail of medications and overcame the challenge of sharing my diagnosis with family and friends.

My family keeps moving forward, with the support of new friends with Parkinson’s and the core set of friends we socialize with regularly. Tracy and I have even tried something new – ballroom dancing! In May 2009, our family participated in the Ottawa Race weekend, a 5-kilometre race where, with the help of friends, we raised money for Partners Investing in Parkinson’s Research.

Throughout it all, I remind myself of the importance of staying engaged. My work in the field of information technology is a key part of that. I consider myself lucky that I can still do many of the things I did five years ago, albeit, in a more adaptive way. Some days, I find it difficult to get going, but then I remember a friend’s advice and vow not to let this disease define who I am.

(*An EMG specialist uses an electromyograph, a complex apparatus for nerve and muscle testing.)

Marc Bellefeuille and family at the 2009 Ottawa Race Weekend, raising funds for Parkinson's research

Marc Bellefeuille and family at the 2009 Ottawa Race Weekend, raising funds for Parkinson's research

Ask the expert

Neera Garga, B.Sc., PT is a consultant physiotherapist with Parkinson Society of Southern Alberta

Neera Garga, B.Sc., PT is a consultant physiotherapist with Parkinson's Society of Southern Alberta

Balance and mobility in Parkinson’s
Neera Garga, B.Sc., P.T.
Consultant Physiotherapist, Parkinson’s  Society of Southern Alberta

Why does balance become more of a problem with age?

As we get older, we stop exploring our environments the way we did as kids. For instance, we don’t do headstands or ride on swings. But those are activities that force the brain to integrate various kinds of information; so, when kids stumble, it’s easy for them to regain their balance. However, when an adult trips, the influx of information can overload the brain and the adult loses balance.

Does this mean the difficulty of recovering from a stumble isn’t necessarily a mechanical problem?

It isn’t. It happens because the brain hasn’t incorporated information fast enough to respond appropriately.

How can physiotherapy help improve balance and mobility in Parkinson’s?

People with Parkinson’s and other neurological conditions causing weakness or postural changes are often forced to move in limited ways. Once that happens, it becomes hard for them to explore other types of movements and, if left on their own, many never will. A physiotherapist can recommend exercises that force the body and brain to experience different scenarios that people would never put themselves into. The physiotherapist can also help people retrain their brains to respond more quickly when their balance is disturbed.

How does this balance retraining work?

Balance is a beautiful relationship between
• the visual system, which takes in information through the eyes;
• the proprioceptive system, which takes information from the receptors in your joints and tells your brain if you’re in alignment or out of alignment; and
• the vestibular system, which is located in the inner ear and takes into account head and eye position.

Because vision usually takes precedence, most people have underused one or both of the other systems. However, if you can improve the use of the idle systems, you can achieve some good results.

Try this simple exercise. Stand in front of a counter, rest your hands lightly on the counter and close your eyes. How do you stay on your feet and not wobble? Well, your proprioceptive system kicks in. If you’re out of alignment, it signals the brain which then alerts the muscles to pull you back into alignment. Your vision isn’t doing its usual bossy job, so these other systems have to pick up the slack.

When people with Parkinson’s do this type of exercise regularly, then, the next time they encounter a slight disturbance in their balance or get nudged or trip on the curb, their proprioceptor-brain-muscle pathways are likely to respond sooner because people have had practice integrating the different strands of information.

How does physiotherapy help with posture?

Over time, many people with Parkinson’s develop a stooped posture where their centre of gravity falls in front of the body rather than over the feet. A good physiotherapy routine will include both exercises to strengthen the muscles along the back and counterbalance the tendency to be pulled forward, and exercises to stretch the muscles along the front of the body which tend to contract when a person becomes stooped.

How much exercise is enough?

Set realistic goals. A consistent 20 minutes of exercise a day is worth more than an occasional 45-minute spurt. In fact, exercise should be seen as a Parkinson’s disease management strategy. It can make a big improvement to quality of life, balance and walking; but if you don’t keep it up, you lose all the benefits. Some of my clients say that exercise empowers them with some sense of control over their disease.

What should a person with Parkinson’s look for in a physiotherapist?

If looking for a physiotherapist, ask the clinic how skilled or experienced the physiotherapist is with Parkinson’s disease.


Charitable registration number 10809 1786 RR0001
All material related to Parkinson's disease contained in Parkinson Post is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflect the opinion of the writer and are not necessarily the opinion of PSC.