Help that is just a phone call, email or click away

National Information & Referral Centre

Since Parkinson Society Canada initiated the National Information & Referral Centre – 1-800-565-3000 – in 2001, over 12,000 people have been directly counselled and given up-to-date information on Parkinson’s disease, the latest research findings, treatment and care management.

In addition, the Parkinson Society Canada’s  bilingual website,  www.parkinson.ca, receives thousands of visitors every year who access educational, support and advocacy materials and use the site as a gateway to their regional Parkinson Society for direct service and ongoing support. The website is growing in popularity every month, and additional educational resources are added regularly.

Parkinson’s not only affects over 100,000 Canadians diagnosed with Parkinson’s, but affects their friends, families, care partners, health care professionals and the greater community. Every one of these groups needs specific and highly tailored information on Parkinson’s, treatment, care management and recent research findings. The National Information & Referral Centre ensures this critical information is available, both through direct contact by email or phone, or through the PSC website.

The National Information & Referral Centre allows people living with Parkinson’s to empower themselves by learning more about the disease. As one caller, diagnosed with Parkinson’s at age 53, described: “Being informed gave me a sense of control at a time when everything seemed to be out of control”.

Since it was launched in 2001,  clients have changed the way they interact with the Centre: email inquiries increased by 400% from 2005 to 2008, and the majority of people who contact  us learned about the resource from the PSC website. To accommodate these changes, PSC re-designed its national website in 2008, resulting in traffic increasing 100% in 2009. Over the past 8 months, the Support and Education section has received over 7,000 hits: visitors are downloading pamphlets, brochures, watching our webinars and making inquiries to the general information mailbox. Visitors are also using the national site as a gateway to finding support services and programs in their communities.   In the past 8 months, over 27,000 visitors accessed their regional Parkinson Society.

Since 1965, Parkinson Society Canada has been the national voice of Canadians living with Parkinson’s, working to bring about change in government policies and decisions that affect the lives of people with Parkinson’s and their families. Whether it’s at the federal, provincial or local level, we also work to ensure that you have opportunities to speak out and make your own individual voices heard.
Yvon Trepanier
Yvon Trepanier Chair, National Advocacy Committee

Advocacy
As part of our promise to represent people with Parkinson’s, we brought the World Health Organization’s Global Declaration on Parkinson’s Disease to Canada in 2003. This charter of rights for people with Parkinson’s calls on governments to acknowledge that people with Parkinson’s have the right to:

  • be referred to a doctor with a special interest in Parkinson’s disease;
  • receive an accurate diagnosis;
  • have access to support services;
  • receive continuous care; and
  • take part in managing the illness

The document has been signed by numerous members of Parliament and hundreds of members of the Parkinson’s community. Its principles are embedded in our support programs across the country.

Our long history of speaking on behalf of the over 100,000 Canadians living with Parkinson’s includes visiting Ottawa on numerous occasions to lobby for recognition of the need to change legislation and policies that affect the day-to-day lives of people with Parkinson’s.

We have identified key policy issues. We have also advocated to have stem cell legislation passed in Canada and are currently lobbying the federal government to create legislation protecting against genetic discrimination.

Through our national advocacy efforts and national communications strategies we are working with our regional Parkinson organizations to expand our reach and influence, grow our networks and continue to play a leadership role.

We have been instrumental in launching Neurological Health Charities Canada (NHCC) and are encouraged by the fact that, through our advocacy efforts at PSC and our leadership efforts on NHCC, we will continue to attract the attention of government.

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SuperWalk for Parkinson’s Raises Record $2.46 Million

SuperWalk for Parkinson’s raised a record $2.46 million this year. Lauren Collins, star of Degrassi: The Next Generation, unveiled the new look SuperWalk for 2010 at this year’s Toronto walk.

“I want my dad to know how much I support him in his every day struggle with this disease. He’s my hero and I am 100 per cent behind him,” said the 23 year old actress. Lauren’s father, Stan Collins, was diagnosed with Parkinson’s just after she was born. “I have never known a time when my dad was not struggling with this debilitating disease. Every day presents new challenges with balance, walking, speaking. I want to help any way I can,” said Collins.

Thirteen thousand walkers turned out across the country to support Parkinson Society Canada to raise funds for education, support, research and advocacy on behalf of the over 100,000 Canadians who have Parkinson’s.

“This has been the biggest turnout ever,” said Paul McNair, Associate National Director of SuperWalk. “We are very excited to launch our re-brand for next year which will be the event’s 20th anniversary.”

Photo Gallery>> 

Star of Canadian television hit Degrassi: The Next Generation, Lauren Collins, unveiled the new look for SuperWalk 2010 at the Toronto SuperWalk for Parkinson’s Sunday. Collins, left, walked with her mother, Sari, for her father who has been living with Parkinson’s for over 20 years.
Star of Canadian television hit Degrassi: The Next Generation, Lauren Collins, unveiled the new look for SuperWalk 2010 at the Toronto SuperWalk for Parkinson’s Sunday. Collins, left, walked with her mother, Sari, for her father who has been living with Parkinson’s for over 20 years.
Global Television's Bill Coulter left leads off Toronto SuperWalk's largest turnout ever, with Celebrity Lauren Collins (right) under sunny skies.
Global Television's Bill Coulter left leads off Toronto SuperWalk's largest turnout ever, with Celebrity Lauren Collins (right) under sunny skies.
PSC President & CEO Joyce Gordon and celebrity Lauren Collins with mom Sari Collins with the

 

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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.

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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.

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