Message from Joyce Gordon, CEO

What is undeniable about life with Parkinson’s is that change and transition are the norm. And what we have learned is that those who are flexible and adaptable have the best outcomes in managing their disease. That life lesson is relevant to Parkinson Society Canada as we evolve and transform our organization to best serve the Parkinson’s community in Canada.

There is strength in unity. Through partnerships and alliances, we have become stronger in our ability to deliver on our mission as the national voice for Canadians with Parkinson’s. Throughout 2015, we have made positive strides through these trusted relationships with researchers in the scientific community, health care professionals, our pan-Canadian network of regional Parkinson Societies, and coalitions with champions who advocate for change. Recently, we updated you on Bill C-68, a good first step in bringing forward meaningful legislation on genetic fairness, though there was no commitment made by the government regarding regulating the insurance companies to ensure that disclosed genetic information cannot be misused to make unfair decisions regarding premiums and overall eligibility. We will continue to call on government to take appropriate steps to amend this.

Over the past five decades, we have been steadfast in our focus to hold people with Parkinson’s at the heart of all we do. We are grateful to our donors, supporters, volunteers and employees who enable us to bring hope by delivering world-class education, research, advocacy and supportive services and programs to individuals and families in communities coast to coast.

There are many ways to get involved in Canada’s Parkinson’s community whether you share your voice as a Parkinson Ambassador for the upcoming federal election, volunteer and fundraise for events like Parkinson SuperWalk or take an hour of your day to listen to a webinar on the latest developments in treatment in Parkinson’s. We recently invited you to participate in a survey for caregivers and we are sharing some news on the results in this issue. We also presented to nurses about the Canadian Guidelines on Parkinson’s Disease at the Canadian Association of Neuroscience Nurses at their annual conference and how this resource can help improve care for their Parkinson’s patients.

As Parkinson Society Canada celebrates the 50 year milestone in 2015, we will lead the way to strengthen community connections to best serve you while the quest for a cure continues.

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Collaborating for caregiver support

Grace Ferrari and John Parkhurst
Grace Ferrari and John Parkhurst

Parkinson Society Canada (PSC), Alzheimer Society Canada and the Multiple Sclerosis Society of Canada are working together to develop a series of webinars specifically for caregivers supporting people living with any of the three neurological conditions. And who better to advise them of what would be most helpful to these caregivers, than the caregivers themselves.

“We recognize that the caregivers in our three communities have a lot in common,” says Grace Ferrari, Manager, Professional and Public Education at PSC. “And working in a partnership means we can make the most of our resources and our shared knowledge. Together, we can accomplish so much more than any of us can do on our own. We began this process by asking caregivers what information they needed and valued the most.”

Step one was a caregiver survey

An online caregiver survey, conducted between mid-March and the end of April, was developed and promoted by the three organizations to determine what information and topics were important and interesting to caregivers. We asked about priorities, navigating the health care system and other caregiver challenges and about 380 people completed the survey. Respondents were evenly distributed from among the three charities.

More than 55 per cent of responding caregivers are between the ages of 35 and 64, an age when many people are juggling the demands of multiple responsibilities, including working while caring for young children, and managing many other family demands.  Respondents confirmed that loss of income can put a financial strain on their household. Caregivers are often forced to choose between being there for their loved one’s care or being the source of income for the family. These are some of the people for which Parkinson Society Canada has been advocating for extended compassionate care benefits.   We also advocate with other partners, such as the Canadian Medical Association, for broader senior health care access and support within a National Seniors Strategy. And the survey confirmed that a large number of seniors are caring for seniors, reporting that sometimes they are feeling like they have given up their own retirement plans and dreams.  Almost 40 per cent of the survey caregivers, or two out of five responders, were 65 or older and more than 70 per cent were caring for a spouse or partner. Three of every four caregivers surveyed are women.

The survey respondents were receptive to a webinar with more than 83 per cent indicating they would participate in a webinar offering caregiver resources and information. What topics did they think the webinar should address? The top four topics, in order, were:

  1. Mental health and stress;
  2. Finding support in the health and social services system;
  3. Future care planning, and
  4. Financial support and planning.

The respondents’ comments also offered a rich commentary on their lives and challenges as caregivers.  “The caregiver role changes as neurological diseases progress. There is a delicate balance to care for someone and at the same time to help them maintain their independence,” says Ferrari. “As the caregiver, you have to keep adapting to the needs of your loved one, which usually steadily increase with the advancing stages of the disease.”

Step two: A “Think Tank” to distill and solidify the survey results

Nine people, two caregivers and one staff member from each organization, were guided by a facilitator for three hours, to further consider the survey results and identify the key topics for the caregiver education webinars, as well as offer other ideas for future partnership caregiver projects.  A complementary “Think Tank” was held in French in Montreal.

“It was a very open and participatory session,” says John Parkhurst, care partner for his wife Margot Bartlett for 25 years, and Parkinson Society Canada representative at the meeting. “The struggles of caregivers are a huge problem that is often in the background and this needs to be addressed. Many have lost any sense of their own life and there can be so many unknowns. It can be very isolating. Having some options, some supports, even if you never access them, is important.”

Ferrari found some of the Think Tank sharing very moving. “The demands and uncertainty of caring for a person with neurological conditions puts caregivers under extreme stress,” she says. “Time, finances, navigating the system, other family and work demands and the need for respite were all openly discussed, and now we have a really well-defined set of priority topics for developing information sessions to meet caregiver needs.”


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What’s next?

With the input from caregivers, the three health charity organizations will now develop three national webinars (two in English and one in French) to be delivered in the fall and winter of 2015-2016. These first few webinars will focus on caregiver mental health and navigating the health and social services systems. Webinars are a cost-effective way of delivering education nationally, without time or location restrictions. They do require a computer and internet connection to participate. Participants can listen to the speakers as well as view videos, slides or other content on a screen. The audience can ask questions in real-time through an instant messaging tool that is part of the webinar technology. The webinars will also be available as a recording for those who wish to access the session at a later date or time.

Other suggestions from the caregivers think tank included establishing an ongoing pan-Canadian caregiver advisory group and a newsletter specifically for caregivers. These, and other suggestions, will be considered by the participating partners.

Other caregiver resources

Parkinson Society Canada has a number of resources for caregivers on its website. The Caregiver Network website also houses webinars that are specific to caregivers and/or specific diseases.

Celebrate the efforts of a caregiver you know

Parkinson Society Canada is proud to partner with Canada Cares to recognize family and professional care givers. You may want to check out the Canada Cares website and nominate your favourite caregiver for a Canada Cares 2015 Award. Nominations must be received by September 18 and all the details can be found at www.canadacares.org.

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Dr. Suneil Kalia: The long quest for a Parkinson’s cure

Dr Suneil Kalia
Dr Suneil Kalia

It was an article about the late Wilder Penfield, a neurosurgery pioneer, that sparked a young Suneil Kalia’s quest to become a neurosurgeon three decades ago. “I was fascinated by the fact that the patient was awake while the doctor was operating on the brain,” says Dr. Kalia.

It would take 20 years of post-secondary education and training to reach his goals of becoming a neurosurgeon, a molecular biologist and now also a neuroscientist conducting his own research into the mysteries of Parkinson’s disease. After earning a BSc from McGill, he then graduated from the MD/PhD program at the University of Toronto (U of T). His neurosurgical residency training included a one-year, post-doctoral fellowship at Harvard University in the Mass General Institute for Neurodegenerative Disease (MIND). Today, Suneil Kalia is an assistant professor at U of T, a neuroscientist at Toronto Western Research Institute (TWRI) and a neurosurgeon at Toronto Western Hospital. He is also the recipient of a pilot project grant from Parkinson Society Canada’s National Research Program.

Dr. Kalia inspired hope among the audience who attended the special presentation on June 14th entitled: Parkinson’s disease – moving towards a cure. He gave context to the research and clinical work that has been done in the past, is currently underway and possible future innovations. Probably one of his most telling slides was a visual “map” indicating investigations into Parkinson’s that have been done during past decades. It was packed full with lines and touchpoints that gave the audience a glimpse into the complexities of Parkinson’s research.

On the surgical front Dr. Kalia spoke about deep brain stimulation (DBS) and of research into the development of smaller batteries, which may be placed under the scalp, rather than in the chest, or may even become part of the electrode which is inserted into the brain. And while current DBS therapy is “on” all the time, future iterations may self-adjust to brain stimuli and operate only as needed.

“And while we are able to treat the symptoms of Parkinson’s with  current surgical and medical therapies, and make lifestyle  recommendations to improve the quality of life for our patients,  we are still not able to halt or slow the progression of the disease itself or reverse its effects,” said Dr. Kalia. It is in the field of molecular biology that he believes the route to a cure will be found.

His current research involves studying the causes of Parkinson’s disease – and in particular the proteins involved in the death of dopamine-producing brain cells.  Kalia is focused on so-called “chaperone” proteins, particularly one called BAG5. This protein can accompany another protein called alpha-synuclein. Misfolded or misshaped clumps of alpha-synuclein can accumulate in dopamine-producing brain cells and cause them to die. Since these brain cells are critical to controlling movement, their death causes Parkinson’s disease.

Identifying the role of these chaperone proteins and their relationship to alpha-synuclein would go a long way to solving the puzzle of why the dopamine neurons die, Kalia believes. He thinks “bad” or malfunctioning chaperone proteins cause the alpha-synuclein to clump up in the brain cells. Knocking down these bad chaperone proteins might stop the aberrant process.

Using a type of gene therapy that delivers a virus to dopamine-producing neurons, Kalia hopes to eliminate the bad chaperone proteins and save the brain cells that are so critically involved in the motor symptoms of Parkinson’s disease.

“If we inhibit these molecules, we have the potential of stopping or reversing the degenerative process, and this could be a novel class of therapies for the disease,” Kalia says.

Dr. Kalia’s research into BAG5 is funded by PSC’s National Research Program. “The seed money granted by Parkinson Society Canada is critical to our work,” he says. “There is no doubt that the limiting factor in our progress is funding for research. The PSC grants make a world of difference in getting us started and in helping us apply for other grants.”

Dr. Kalia’s partner in work and life is Lorraine Kalia, a neurologist in the Movement Disorder Centre at the Toronto Western Hospital. She is also an assistant professor at U of T and a neuroscientist at TWRI and Tanz Centre for Research in Neurodegenerative Diseases (CRND). Lorraine Kalia offered clinical perspectives during the question and answer portion of the presentation. With adjoining labs, and complementary clinical practices, the Kalias are among Canada’s elite group of Parkinson’s specialists, dedicated to offering the best of care while advancing the way to a cure for this life-changing disease.

“I look forward to the day when I can tell people living with Parkinson’s that we can halt the progression of the disease and perhaps one day even reverse its effects,” says Suneil Kalia.

Don’t miss Dr. Naomi Visanji’s webinar on August on August 18, 2015, from noon to 1 p.m. EDT. Click here and pre-register to attend.

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Long-time volunteer Jim Long keeps Hope in Bloom

Debbie Davis, left, CEO of Parkinson Society Canada Central & Northern Ontario, presents an award to long-time volunteer and supporter Jim Long.
Debbie Davis and Jim Long.

When Jim Long first agreed to help raise money for the Parkinson’s cause, he found himself at another volunteer’s house helping to arrange masses of tulips into bouquets. Then he and his fellow volunteers headed off to the streets of Toronto to sell these tulips in support of people living with Parkinson’s.

Things have certainly changed since those early days in the 1980s. “Just recently, with my 24 volunteers, we sold 72 boxes of tulips, and raised some $9,000 in a single day at Union Station,” says Jim.

The campaign has blossomed since those first years in Toronto. There are now 26 venues with blooms delivered directly from the growers; no more gatherings in homes to make up bouquets! There are logistics, promotion, and an army of volunteers to organize. As a member of the Hope in Bloom organizing committee, Jim’s executive skills truly shine. A retired housing developer, Jim helps staff and volunteers to grow and improve the campaign that takes place each spring. He’s very proud that the Toronto campaign raised more than $142,000 this year.

Jim has worked with a number of Parkinson Society staff over the years and has even participated in the interview process. He was on the committee when Helen Wong was hired as Community Development Coordinator (Toronto), responsible for the Hope in Bloom campaign. As a dedicated, respected, long-term volunteer, Jim is happy to help new staff and volunteers with their orientation by providing historical information and hands-on advice.

“Jim shared the history of the tulip campaign with me, along with his other knowledge and insights,” says Wong. “He’s been a very helpful guide to this aspect of my new position.”

Naseem Jamal, now Manager, Major & Planned Giving, Parkinson Society Central and Northern Ontario, worked with Jim for more than three years on the campaign, and echoes that sentiment. “Jim will just do whatever is needed. He is kind hearted and tenacious,” she says. “He helps train and assist new venue captains. He scopes out new sales sites and meets with property managers. He does whatever it takes to make life easier for the rest of us.”

No surprise then that Jim finds the toughest thing about volunteering with the organization is the desire to bring more immediate relief to those living with the disease. He remembers the challenges faced by his sister Pat, who was diagnosed with early onset Parkinson’s disease in 1972. “I took her to a Parkinson’s education presentation once. She was in a wheelchair by then, weaving and bobbing with dyskinesia and in pain. She was embarrassed being in public and at the end of the presentation, she asked me: ‘What are they doing for me?’”

Jim keeps his sister’s question in mind when he makes his contributions to the Hope in Bloom campaign. “The money we are raising is used for research for a cure and to give people with Parkinson’s and their families the information and support they need. We’re just doing it by selling tulips to raise the necessary funds.”

There is also something fundamentally satisfying about selling flowers in the spring. “We love the grey weather days,” says Jim. “There are more people coming by our indoor venues and the fresh, colourful blooms are hard to resist.” Jim remembers one customer who gathered up about 15 bouquets to distribute to people in his office. “We saw how pleased he was to be giving them out, and you could just imagine how happy the people would be who received a bouquet.”

Jim is also compelled to spread the springtime blooms around. By 1997 Pat resided at North York Senior Health Centre and Jim purchased several boxes of tulips himself and delivered them to the centre, as well as other senior centres in the area. He has continued to make these donations every year since. Sometimes the tulips provide a welcome touch of spring around the residences. And other times the centres sell some of them to raise funds to improve life for their residents.

“We all win,” says Jim. “The Parkinson Society gets the money I pay for the tulips and the senior centres and their residents enjoy the beauty of the flowers and raise funds for their own initiatives. We all help to increase awareness of Parkinson’s disease.”

At 84 years of age, Jim is concerned about recruiting future volunteers. He serves as a venue “Captain” for the campaign, usually working a day at Scotia Plaza downtown, as well as doing the organizing committee work. His daughter Julie and grandson Matthew have helped out on occasion. He likes to encourage others, young and older, to get involved and give back to society.

“For the young, volunteering is a great habit to embrace and it can be a wonderful family activity. For older and retired people, volunteering keeps them active and they can interact with all kinds of people.” says Jim. “This is my time to give back and make a difference.”

Did you know…  On April 11, 2005, the Red Tulip was launched as the worldwide symbol of Parkinson’s disease at the 9th World Parkinson’s disease Day Conference in Luxembourg. 

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Advocacy in action: Good news for the Parkinson community in the 2015 federal budget

There was plenty of good news for the Parkinson community in the 2015 federal budget announced in late April, including support for seniors, caregivers and funding for investigations into aging and brain health, and palliative care. But with all the good news, there are still hurdles to address in the lead up to the federal election this fall and beyond.

The expansion of the country’s Compassionate Care EI benefits from six weeks to six months was a big win for us and our partner organizations, which collectively fought for this change. Parkinson Society Canada specifically made this request in our pre-budget submission to the Standing Committee on Finance. We also discussed the need for expanded compassionate care benefits in our meetings with 16 MPs, senators and policy makers during our visit to Ottawa on March 31st, to launch Parkinson Awareness Month last April.

While we know this is a great step forward for caregiver support, concerns still remain about how accessible this benefit is to members of the Parkinson’s community. Currently, many people with Parkinson’s have difficulty receiving an end-of-life prognosis from their physician, which is a requirement for their caregiver to be eligible for this benefit.

Parkinson Society Canada is looking for members of our community who are willing to share their experiences in attempting to access the Compassionate Care EI benefit. If you, or someone you know, would like to share your story to help us advance this advocacy priority, please contact us at advocacy@parkinson.ca.

Other good news in the budget included the government’s decision to provide up to $42 million over five years, to help establish the Canadian Centre for Aging and Brain Health Innovation. This research investment may lead to better diagnostic tools and more effective treatments for Canadians affected by Parkinson’s or other neurological conditions. The government is also allocating an additional $14 million over two years for the Canadian Foundation for Healthcare Improvement to evaluate and disseminate data about best practices regarding palliative care services.

Parkinson Society Canada was also pleased to see budget policies aimed at boosting saving mechanisms for seniors, which can help with financial security. The minimum withdrawals for Registered Retirement Income Funds (RRIFs) will be reduced, permitting seniors to preserve more of their retirement savings. In addition, the annual contribution limits to Tax Free Savings Accounts (TFSAs) will increase from $5,500 to $10,000. This is great news for seniors as neither the income earned in a TFSA, nor withdrawals from it, affect eligibility for federal income-tested benefits and credits such as Old Age Security (OAS), the Canadian Pension Plan (CPP), Guaranteed Income Supplement benefits and the Goods and Services Tax Credit.

We also welcomed the Home Accessibility Tax Credit for seniors and people with disabilities to help offset some of the costs of ensuring their homes remain safe, secure and accessible. The credit is worth up to $1,500 for those spending up to $10,000 on things like wheelchair ramps, walk-in bathtubs and grab bars.

Looking ahead to the 2015 federal election

As we move closer to the 2015 federal election scheduled for October, Parkinson Society Canada (PSC) will continue to present our policy priorities to current MPs and public servants as well as candidates from all parties. And we can use your help.

Elected officials and candidates must pay attention to the opinions of the voters in their riding, especially at election time. You can help move Parkinson’s issues forward during the 2015 election campaign and beyond by becoming a Parkinson’s Ambassador in your riding. Whether you are a person living with Parkinson’s, a caregiver to someone living with the disease, or simply want to help with the cause, you can be a champion in your community by being the voice for Canadians with Parkinson’s!

As a representative of the Parkinson’s community, you will meet with your local MP and candidates to discuss issues impacting the Parkinson’s community, in advance of the 2015 federal election. We will provide you with the training and support you need to ensure that you are fully prepared for the election campaign. If you’d like more information, please contact us at advocacy@parkinson.ca.

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It takes more than two to tango to study the benefits for people with Parkinson’s

Dr. Silvia Rios Romenets
Dr. Silvia Rios Romenets
It’s no surprise that when Dr. Silvia Rios Romenets released the results of her recent study on tango dancing as a therapy for Parkinson’s disease, the media eagerly picked up the story. After all, the Argentine tango has an emotional connotation with its sensual Latin rhythms and depictions on TV and in film.

More important than the feelings it inspires, the Argentine tango involves complex steps and requires “cognitive and multi-tasking skills to gradually integrate previously learned steps, as well as forward and backward movements and stopping and starting,” explains Rios Romenets, a behavioural neurologist and specialist in movement disorders conducting research at the Movement Disorders Clinic at The Neuro and Montreal General Hospital. “It has been used in previous studies to assess the ability of dance to improve motor symptoms in people with Parkinson’s.”

Dr. Rios Romenets’ study involved about 40 men and women, divided into two groups, and assessed both motor and non-motor symptoms. The control group followed their current exercise regime or if they were not already active, they were asked to follow Parkinson Society Canada’s recommended Exercises for people with Parkinson’s, at home, on their own. The other group participated in 24, one-hour, Argentine tango classes with their own partners (spouse, family member, friend or volunteer) and two instructors in a dance studio over 12 weeks. Participants in both groups underwent a series of motor and non-motor symptom assessments and completed questionnaires to determine the results.

“Although the core motor features of Parkinson’s disease such as tremor, slowness and rigidity were unchanged, we found an improvement in balance and possible modest improvements in cognition and fatigue in the tango-dancing group,” reports Dr. Rios Romenets. “Participants also found the tango classes highly enjoyable. Part of that pleasure may come from this positive bonding experience for couples who are more often dealing with the negative consequences of the disease.”

Overall, this study adds to the body of knowledge that indicates that regular exercise has both motor and non-motor benefits for people with Parkinson’s. “Adding music to the exercise mix, also appears to have additional benefits,” Rios Romenets. “In which case, learning the Argentine tango and regularly dancing can be a good option for physical activity for those with Parkinson’s.”

As a behavioural neurologist and specialist in movement disorders, Rios Romenets is drawn to research to ameliorate the suffering of people dealing with this complex disease, as well as help their families. “Working with patients with Parkinson’s can be frustratingly difficult, because you cannot offer a cure. On the other hand, helping these people and their families makes me more determined to continue my research into this difficult disease.”

In the 2011-2013 funding cycle, Dr. Rios Romenets was awarded a two-year, $100,000 clinical fellowship from Parkinson Society Canada’s National Research Program.  She participated in five research projects, including the 2012 publication of the Physician Guide Non-motor Symptoms of Parkinson’s Disease, which has a companion piece for patients, A Guide to the Non-motor Symptoms of Parkinson’s Disease.  Dr. Rios Romenets felt very fortunate to be a PSC fellowship recipient and her recent tango study was also funded in part by PSC’s National Research Program and the Fonds de recherché santé Québec.

When she began to practice as a neurologist in Colombia, Rios Romenets worked towards combining her clinical practice with research. Describing herself as half-Russian, half-Peruvian, she learned English to improve her chances of pursuing research in her field. It’s no surprise that Rios Romenets also enjoys tango dancing in her free time and has participated in dance-related fundraising events.

In the future, Rios Romenets would be interested in doing a larger study of Argentine tango as a complementary  therapy for Parkinson’s, over a longer time frame of six to 12 months. “I’d also be interested in focusing on the cognitive and other non-motor benefits of dancing,” she says. “And perhaps add neuro-imaging to the study.”

To learn more about Parkinson Society Canada’s National Research Program and to support more projects like this with a donation, go to ourdonation page or contact research@parkinson.ca.

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Everyone’s a winner with Parkinson SuperWalk

Brent Graham
Brent Graham
Our first three winners

Parkinson SuperWalk 2015 has awarded prizes to three contest winners, and you’ll have several more chances to win before the walk weekend September 12 and 13.  Congratulations toBrent Graham of Scarborough, Ontario, who won the Early Bird Draw and a $500 gift card from Roots. Graham participated in his first Parkinson SuperWalk last year in honour of his mother Elva Graham. She passed away a month later at the age of 73 after living with Parkinson’s disease for five years. “I have made a pledge to Mom and myself that I will complete the Parkinson SuperWalk each year in her honour,” says Graham.

Our “Good Egg” Katie Stammler of Windsor, Ontario, received a golden prize pack (worth approx. $200) courtesy of our national sponsor Burnbrae Farms after a contest on our Facebook pages. Stammler wrote: “My mom is a golden egg for being a fabulous caregiver to my dad. Another golden egg goes to him for his amazing positive attitude and perseverance.” Burnbrae Farms awarded the same prize package to Valerie Caldicott of British Columbia, from its online community.  Caldicott tries to do a random act of kindness each day. In addition to prizes, Burnbrae Farms is donating $2 for every like or comment received during the contest, up to a maximum of $5,000.

Burnbrae Farms has also created “Shelli Parker” a returning virtual walker, to walk on behalf of all the eggs and people who can’t participate, but still want to support Parkinson SuperWalk!  Watch for Shelli’s picture on cartons of Naturegg Omega 3 Brown and Naturegg Nature’s Best cartons this summer.

Winning fashions

If the prize of a gift card from Roots really gets you excited, you’ll want to check out our Parkinson SuperWalk 25th Anniversary Collection of premium items for sale, all made by Roots. This high-quality collection consists of a limited quantity of hoodies, scarves and toques, so order now and you won’t be disappointed. You can have your order delivered to your home or pick it up in September at your Parkinson SuperWalk location.

New for 2015: Super Friendraiser Draw

Register online for Parkinson SuperWalk and send out emails to your contacts through the Participant Centre! And send them out soon, before friends, colleagues and family members start heading off for summer holidays. For every 25 email addresses that you send an email message to through the Participant Centre, you will receive one ballot for a chance to win a Sharp TV. Contest closes June 30th. You’ll also receive badges for sending emails. Check out the variety of badges you can earn. For more information on this contest, visit our Prizes and incentives page.

More to come

Stay tuned this summer for announcements of exciting contests on the Parkinson SuperWalk Facebook page, like our Everyday Hero contest and the Pets for Parkinson’s contest.  And don’t forget to use the Share feature to tell your friends about the contests too! After all, we all win with Parkinson SuperWalk, a fun family event raising funds to help those with Parkinson’s live their best possible life and to continue the quest for a cure for this complex disease.

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Managing Parkinson’s symptoms with exercise

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.”

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Message from the Editor

Marina Joseph
Marina Joseph

April is Parkinson’s Awareness Month and during this 50th anniversary year, more than ever we are determined to put Parkinson’s on the map. While the global quest for a cure continues, closer to home Parkinson Society Canada representatives will meet with key policy makers in Ottawa to present the key priorities of the Parkinson’s community to the federal government. And volunteer Parkinson Ambassadors will mobilize across the country to advocate for key issues that matter to them and their families.

In this Parkinson’s Awareness Month issue, we demonstrate how the National Research Program is helping to grow Parkinson’s researchers. Read how Dr. Jean-François Trempe is pursuing new knowledge and potential treatments for Parkinson’s with support from the National Research program. You may also enjoy learning about Neuroscientist Jessica Grahn and her work involving listening to music to help people with Parkinson’s improve their stride and move faster as they walk.

We also share feedback from family physicians, specialists and allied health professionals who are turning to PSC for accredited education through our first online learning module based on the Canadian Guidelines on Parkinson’s Disease.

And we are pleased to report that the government has added Parkinson’s disease to the Canadian Chronic Disease Surveillance System (CCDSS), an ongoing database that will give researchers, medical practitioners and policy makers access to a wide range of substantive data on Parkinson’s.

These advances in education, advocacy and research would not be possible without the dedication of thousands of supporters, including those who take part in Parkinson SuperWalk, launching today. Community spirit across the country has helped this national event reach its 25th anniversary this year.

In this year of anniversaries, we salute everyone who continues to pursue our vision of a better life with a brighter future for Canadians living with Parkinson’s today and a world without Parkinson’s tomorrow. We are grateful to be on this journey with you.

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Growing a scientist

Dr. Jean-François Trempe and his wife Véronique Sauvé in earlier days in Oxford. Both were lead authors on a significant paper on Parkinson’s disease research, published in Science in 2013.
Dr. Jean-François Trempe and his wife Véronique Sauvé in earlier days in Oxford. Both were lead authors on a significant paper on Parkinson’s disease research, published in Science in 2013.

For Dr. Jean-François Trempe, building a research career is a life-long passion and a family affair. With funding from Parkinson Society Canada National Research Program, Dr. Trempe, 37, along with his wife Véronique Sauvé, were the lead authors on a significant paper related to Parkinson’s disease published in Science in 2013.

The two McGill researchers, collaborating with teams directed by Dr. Edward (Ted) Fon and Dr. Kalle Gehring, unlocked a new door to developing drugs to slow the progression of Parkinson’s disease. The paper described the three-dimensional structure of the protein Parkin. Mutations in Parkin cause a rare hereditary form of Parkinson’s disease and are likely to also be involved in more commonly occurring forms of Parkinson’s disease. The Parkin protein protects neurons from cell death due to an accumulation of defective mitochondria. Mitochondria are the batteries in cells, providing the power for cell functions. This new knowledge of Parkin’s structure has allowed the scientists to design mutations in Parkin that make it better at recognizing damaged mitochondria and therefore possibly provide better protection for nerve cells.

When the work on the Parkin structure was underway, Dr. Trempe was a post-doctoral fellow funded by the PSC National Research Program. “In the same way that a picture is worth 1,000 words; a structure is like 1,000 experiments,” says Dr. Trempe explaining the significance of the Parkin structure discovery.

Dr. Edward Fon, Chair of PSC’s Scientific Advisory Board and Director, McGill Parkinson Program, first met Dr. Trempe when he was working in Dr. Gehring’s lab. “What struck me was how J-F (Jean- François) stepped right up and took responsibility for this collaborative Parkin project,” he says. “He’s also unique in that he’s not limited by his own field of structural biology, but is able to add other dimensions, such as cell biology, to complement his background and harness both areas to take research into new directions.”

The publication in Science has been a turning point in the career of this promising young researcher, and one of the most significant discoveries to come out of a Parkinson Society Canada National Research Program funded project. Recently, Trempe has been invited to present his work to Parkinson researchers and drug developers at international conferences. “These were great opportunities to exchange ideas and discuss our work with other researchers in the Parkinson’s field.

And last year, Trempe established his own lab at McGill University, employing two graduate students, one post-doctoral fellow and a research technician. Undergraduates also work and study in the lab as part of their training. Trempe received a New Investigator award of $90,000 over two years, through PSC’s National Research Program. This support meant he could hire the post-doctoral fellow in his lab.

Currently Dr. Trempe’s team is studying the structure and shape of PINK1, a protein that plays a critical role in familial Parkinson’s disease. About 10 per cent of people with Parkinson’s have a genetic form of the disease. Learning the shape of this protein could help develop a drug to repair the protein when it is damaged, to help it do its job of keeping brain cells healthy.

“PINK1 activates Parkin,” explains Trempe. “Once we have the structure for PINK1, I’d like to build on our work on PINK1 and Parkin towards drug development.”

How does a young scientist get to the point of ground-breaking discoveries? For Trempe there was an early interest in science, followed by undergraduate and graduate degrees in biochemistry. From 2002 to 2007, he studied at Oxford in the United Kingdom, under renowned researchers Dr. Jane Endicott and Dr. Iain Campbell – who pioneered the use of NMR (nuclear magnetic resonance) to determine protein structures.

“It was an inspiring and a very collegial place to study and work,” says Trempe, “with everyone sharing information.”

He found a similar spirit of collaboration, when he returned to Canada and worked with Drs. Gehring and Fon at McGill. “They are both very open to collaboration and work to expand our knowledge of Parkinson’s and to help their patients,” Trempe said. In turn, Dr. Fon found Trempe had a “true passion for science. He is enthralled by figuring out how things work.”

Why Parkinson’s research? “It’s still such a medical mystery. We still don’t know why some people get it. We still don’t know the cause, or causes. For me, there is the curiosity, to find the answers to those questions. And of course Parkinson’s is a huge and growing burden, for the people living with it, and as a pressing health issue for society,” Trempe says.

Since he began his research on Parkinson’s, Trempe has had more exposure to people living with the disease, through Dr. Fon, who regularly talked about cases and at Parkinson Society events. “Listening to patients is something of a reality check and helps motivate you in your work. You realize the potential impact your research may have,” says Trempe.

Working with Dr. Fon also helped Trempe recognize that not all people with Parkinson’s are the same; that there is a wide spectrum of the disorder with seemingly various sub-types and categories. “We need more data on individuals, and it’s difficult to accomplish this with limited resources.”

In addition to a commitment to scientific rigour, working with Dr. Fon taught Trempe the importance of good communication skills. “It’s not enough to acquire the knowledge, you need to share it with others, in excellent papers and presentations,” Trempe says.

And the funding process today demands both scientific rigour and communication skills. “Not only do you need to publish great papers and write funding proposals, you need to explain the impact of your research – for further research and towards the ultimate goals of better treatments and a cure.”

It’s all about building a reputation for excellence. Trempe acknowledges that earlier funding from PSC’s National Research Program has helped him develop this reputation. Discovering the structure of Parkin helped him acquire further financial assistance to keep trying to unlock the mysteries of Parkinson’s. He has since received funding from McGill to establish his own lab and was awarded the Canada Research Chair in Structural Pharmacology, worth $100,000 over five years. He’s cautiously optimistic about a funding application to the CIHR for a “substantial” sum. And, he has received the latest funding from PSC for the PINK1 project.

“The funding from the Parkinson Society Canada has been essential,” says Trempe. “Not only have we made great strides in our knowledge, but we are developing young scientists and other funders recognize the potential of our endeavours.”

Dr. Fon, who chairs PSC’s Scientific Advisory Board, says one of the research program’s goals is to draw people into the field of Parkinson’s research. “Our fellowships, pilot project grants and other awards, can be critical in attracting scientists like J-F to apply their talents to Parkinson’s.”

“I see my work expanding beyond structural studies to biophysical studies and drug development, as well as continuing with basic science,” says Trempe. “We still need to pursue the basics to understand various phenomena.”

“And our progress is accelerating,” explains Trempe. “I believe we are on the right track and that advances will continue to be made.”

To learn more about Dr. Jean- François Trempe’s current project funded by Parkinson Society Canada National Research Program, visit online atwww.parkinson.ca.

You can help us continue to support researchers like Dr. Trempe, by making a donation today to Parkinson Society Canada and its National Research Program.

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