e-Parkinson Post is giving you more news, more often

Beginning with this issue, e-ParkinsonPost will be coming to your inbox on the third week of every month. Just like your Parkinson’s medication, getting helpful information on time is important. So, if you are looking for tips on living well, or you want to know the latest discoveries from the National Research Program, what we are doing to make an impact on health policies, and how we are engaging with our constituents, we will keep you connected to what’s happening in the Parkinson’s community in Canada.

There are other ways to stay connected between issues. We hope you will follow us on Twitter @ParkinsonCanada, and like our Facebook page at Parkinsonsocietycanada, or visit our website http://www.parkinson.ca. In addition, there are lots of helpful resources for health professionals at http://www.ParkinsonClinicalGuidelines.ca.

We welcome your feedback and your submissions at editor@parknson.ca.

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.

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

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 our donation page or contact research@parkinson.ca.

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 to Brent 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.

Message from the Editor

Marina Joseph, Editor

Marina Joseph, Editor

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.

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 at www.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.

Health professionals are paying it forward with Parkinson’s learning module

Online education tool for physicians helps identify Parkinson’s signs and symptoms.Health professionals across Canada, and even internationally, are completing Parkinson Society Canada’s (PSC’s) first online learning module based on the Canadian Guidelines on Parkinson’s Disease and then recommending it to colleagues and using the information at professional seminars and in classrooms.

Joanie Gourde-Bellerose, Pharm, D., works in a busy pharmacy in Abitibi, Quebec. She also teaches nursing degree students at a local university.

“Although our community only has the services of one neurologist, we’ve recently had about four new patients diagnosed with Parkinson’s. I took this online learning module to review any new treatments,” she says. “It was also very valuable when I was preparing a lesson on Parkinson’s treatments for my nursing students. I’ll be recommending the program to them.”

Gourde-Bellerose also believes the program would be of great benefit to family physicians. “It often takes a while to see a specialist, so if the family physician can begin the process of diagnosis and treatment, the patient can get symptom relief that much more quickly. As well, the family physician can follow the progress of their patient with a true understanding of the knowledge at hand and work more closely with the specialist,” says Gourde-Bellerose.

Dr. Andrés Venegas is one of those specialists – a neurologist – who trained in Calgary for two years and now practices in Mexico, his native land. Earlier this month he was invited to give a lecture to family physicians in his community. His advance preparation led him to the PSC website developed for healthcare professionals, and the learning module.

“I thought it would be a useful training tool for family physicians and general practitioners – and it was,” he said. “My lecture to about 70 doctors was a great success.”

Dr. Venegas has translated some of the guidelines and adapted them to the local health system and resources, which were well received in his health care community. Ultimately, it is the people living with Parkinson’s who benefit the most when health care professionals have the latest knowledge.

Since the module launched last December, about 25 per cent of those who received a personal email announcing the training opportunity, have registered and completed the module. It is based on the recommendations in PSC’s Canadian Guidelines on Parkinson’s Disease and has been accredited by the College of Family Physicians of Canada for continuing medical education credit. It is currently available to all allied health professionals at no cost.

The module uses case scenarios accompanied by questions and answers throughout the session making it an interactive and effective learning tool. The module focuses on how to identify, treat and manage the motor and non-motor symptoms of Parkinson’s disease.

We encourage you to pass along this information about this accredited learning module to your professional colleagues and to the members of your health care team. If you have completed the module and would like to provide feedback, contact Grace.Ferrari@parkinson.ca, National Manager, Public and Professional Education.

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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.

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