New resources offer advice from those in the know

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Learning you’ve got a chronic neurodegenerative disease like Parkinson’s can be a shocking and very emotional experience, especially when you are not yet 30 years old. Even at 40 or 50, it can wreak havoc on your future plans – physically, mentally, financially, socially and emotionally. That’s why Parkinson Society Canada has funded two educational resources – one for individuals and one for physicians – to help address the unique needs of people who are newly diagnosed with young-onset Parkinson’s disease (YOPD). The new resources were developed by Michael Ravenek, PhD, with funding from PSC’s National Research Program.

Although the average age to be diagnosed with Parkinson’s is around 60, young-onset Parkinson’s (before age 40) occurs in five to 10 per cent of people diagnosed. Twenty per cent of those newly diagnosed are under the age of 50. While some challenges living with Parkinson’s disease are universal, regardless of age, there are a number of additional issues specific to younger people.

The first reaction is often the shock of a diagnosis of YOPD, even though individuals may have been experiencing symptoms to varying degrees. “I think when you get the diagnosis, your life sort of stops,” recalls one of the contributors to the booklet with advice for other patients. “You have to deal with your kids, you have to deal with your job, you have to deal with getting up every day and all the things you’re supposed to do and then deal with this at the same time. And there’s no instruction book on how to do that.”

These latest resources help to fill that gap. Written by Michael Ravenek, PhD, an assistant professor at Western University, the two booklets, Young-onset Parkinson’s disease: Advice for those newly diagnosed from individuals currently living with YOPD (2nd ed.) and Young-onset Parkinson’s disease: Advice for physicians from individuals living with YOPD (2nd ed.) provide advice on topics such as when to reveal your condition to your employer, planning finances for possible disability or early retirement, sharing your diagnosis with young children, teenagers and parents, and sexuality, among several others issues.

With funding from Parkinson Society Canada and the Canadian Institutes of Health Research, Ravenek interviewed 39 people living with YOPD for varying lengths of time drawing on their unique, personal experiences to write the initial editions of the two booklets. Feedback was later gathered from across the country from others with YOPD and their families, as well as health professionals, and incorporated into the second editions.

“There is a big gap in information available to those who face everyday life challenges combined with the unexpected and unique aspects of living with YOPD,” says Grace Ferrari, National Manager, Professional & Public Education, Parkinson Society Canada. “We are very pleased to provide these additional resources in both digital and printed formats, in English and French, to support people with Parkinson’s, their families and their physicians.”

The physician booklet highlights specific areas of the physician-patient interaction that all physicians should consider in their encounters with individuals with YOPD. Both booklets contain a sample “log” for daily medication, meals and exercise, along with a place to record “Questions for my next doctor’s appointment,” to help make the most of self-care efforts and doctor/patient interactions, respectively.

To find out more about living with Parkinson’s disease and the programs and services available near you, call 1-800-565-3000, or visit www.parkinson.ca. Use the interactive map to find support groups, access to local programs and support groups for those newly diagnosed, people with YOPD, exercise and more. Other Parkinson’s news and resources are regularly featured on our Twitter page, @ParkinsonCanada and Parkinson Society Canada on Facebook.

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Transplantation for Parkinson’s disease – Don’t count it out yet!

Dr. Harold Robertson
Dr. Harold Robertson

By Dr. Harold Robertson

Transplantation for treatment of Parkinson’s disease has not been as widely discussed as it once was, but don’t count it out yet! During the past decade there has been increasing evidence that early diagnosis and treatment of Parkinson’s disease will be important in the future. One area where early diagnosis will certainly make a difference is neural transplantation.

A recent issue of Nature (March 5, 2015) drew attention to an article from Ole Isacson’s lab at Harvard. The article appeared in the high-impact Journal Cell Stem Cell and is entitled “Successful Function of Autologous iPSC (induced pluripotential stem cell)-Derived Dopamine Neurons following Transplantation in a Non-Human Primate Model of Parkinson’s Disease”(1). This represents a significant step towards a potential treatment or even a cure for Parkinson’s disease (PD). In the Maritimes, we have heard very little about transplantation of dopamine neurons since the departure of Dr. Ivar Mendez, so it is worth reviewing the current situation.

Neural transplantation for PD was started in the mid-1980’s, flourished from 1990 to 2002 and collapsed in 2002-2003 following reports from two National Institutes of Health (NIH) double-blind, randomized, placebo-controlled trials that showed little benefit and reported emergence of significant graft-induced abnormal movements (dyskinesias) in as many as 50 per cent of patients. It is interesting to note that during the years 2003-2009, centres that were not part of the NIH studies found that transplants provided significant improvements in PD symptoms with few dyskinesias. This led to a call to continue neural transplantation (2) and to the €12 million Transeuro project currently underway in the UK and Sweden (http://www.transeuro.org.uk/). It turned out that the two NIH studies were seriously flawed, but by the time that was realized, Parkinson’s disease research had moved on to glial derived neurotrophic factor or GDNF (which also failed, but that is another story) and other treatments.

But back to the Hallett paper (1). One of the dreams we had in the early days of neural transplantation work was the idea of either stimulating dopamine neuron production in patients or developing ways of taking the patients own cells, changing them into dopamine neurons and implanting the cells back into the patient. Since it is the patients’ own cells, immunosuppression would not be necessary. The advent of iPSC technologies also meant that we would no longer be handicapped because of the supply of tissue. The Cell Stem Cell paper by Hallett et al (1) studied monkeys that had been treated with MPTP to produce PD. They then took skin fibroblasts from individual monkeys and treated them with the factors necessary to convert cells to dopamine neurons. The cells were then transplanted back into the monkeys from which they were derived. The cells survived without immune suppression, re-innervated the putamen and improved motor function.

What does this all mean? Currently there are only symptomatic treatments for Parkinson’s disease so there is a huge unmet medical need for a treatment to halt progression. iPSC-based treatments are a matter of a few years away; I predict that clinical trials will begin in late 2015-early 2016. When and where will these trials be held? That remains to be seen. The Dalhousie – CDHA neural transplantation project that ran from 1985 to 2013 had an enormous lead over the rest of Canada and the results were among the best in the world (see figure 1 in ref 2). Most of that effort has now transferred to Saskatchewan.


(1) Hallett, P.J., Deleidi, M., Astradsson, A., Smith, G.A., Cooper, O., Osborn, T.M., Sundberg, M., Moore, M.A., Perez-Torres, E., Brownell, A.L., et al. (2015). Successful Function of Autologous iPSC-Derived Dopamine Neurons following Transplantation in a Non-Human Primate Model of Parkinson’s Disease. Cell Stem Cell.

(2) Barker, R.A., Barrett, J., Mason, S.L., and Bjorklund, A. (2013). Fetal dopaminergic transplantation trials and the future of neural grafting in Parkinson’s disease. The Lancet Neurology 12, 84-91.


This blog post (March 9, 2015), was written for the website of the Predict Parkinson’s Project by Dr. Harold Robertson and is reproduced with his permission. Dr. Robertson is currently a professor in the department of pharmacology at Dalhousie University’s medical school and is a past member of Parkinson Society Canada’s National Research Program Scientific Advisory Board.

e-Parkinson Post welcomes submissions from readers. Please send your comments and submissions to the editor@parkinson.ca.

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Everyday hero Steve Van Vlaenderen hits the airwaves for Parkinson SuperWalk

Steve Van Vlaenderen
Steve Van Vlaenderen

Parkinson SuperWalk 2015 is weeks away, and Steve Van Vlaenderen, 66, of Winnipeg, has already raised well over $1,000 for the Parkinson cause. He is confident he’ll reach his $2,500 goal before taking part in his first Parkinson SuperWalk on September 12. “I still remember hearing what was said when I was diagnosed in 2011: ‘There is no cure for Parkinson’s,’” says Van Vlaenderen. “We need to fund vital research to find better treatments, and ultimately end this complex disease. We cannot wait for a cure.”

In a radio ad promoting Parkinson SuperWalk across Canada, Van Vlaenderen urges all Canadians to participate, or to support one of the 14,000 other participants in more than 100 communities across the country on September 12 and 13. Every day, 10 Canadians are diagnosed with Parkinson’s and by 2031, the Parkinson’s population in Canada is expected to double.

While Van Vlaenderen started his fundraising in May, there is still plenty of time left to register for Parkinson SuperWalk and ask your family and friends to join you in the event, or to support your efforts. It’s a fun family outing, usually held in a local park setting, and doesn’t require any superpowers. And if joining on the day doesn’t fit your schedule, you can still support the cause and register online and fundraise as a virtual walker.

Van Vlaenderen is beyond prepared for most physical challenges, despite living with Parkinson’s every day. He has just returned from a three-week sailing adventure on Lake Winnipeg. And earlier this spring, he placed second in his class in the Manitoba Amateur Body Building Association Championship. He regularly trains at the gym five days a week for two hours a day and eats a healthy diet. This wasn’t always the case.

When first learning of his diagnosis, Van Vlaenderen became very depressed and suffered from anxiety. “I went to the hospital twice with panic attacks thinking I was having a heart attack,” he says. He gained a lot of weight and felt overwhelmed.

“On September 28, 2013, I remember the date, I decided to face Parkinson’s head on and take charge of my life,” says Van Vlaenderen. “I set goals. I started going to the gym. I decided to learn everything I could about my own body and Parkinson’s. It’s a different experience for everyone, so you need to learn to sync your mind and body and stay positive. Today, I consider Parkinson’s an annoyance, rather than a handicap.”

Van Vlaenderen believes goal-setting is very important to taking control of Parkinson’s and staying positive. After Parkinson SuperWalk, he’ll start training for the Manitoba Body Building Association Championships next spring and then on to the Nationals. While he admits his goals may be extreme for most people living with Parkinson’s, he says goals give structure to your day. “Just beginning with a walk around the block one day and then gradually doing more as you set new goals can make a big difference, both physically and mentally,” he says.

By sharing his story and promoting Parkinson SuperWalk, he hopes to inspire others dealing with this devastating disease. Van Vlaenderen was overwhelmed when he received three standing ovations from the huge crowd on hand at the body building competition in the spring. He imagines he’ll feel just as good completing the Parkinson SuperWalk in September by raising awareness and funds for research and community support for those living with the disease.

You can join Steve Van Vlaenderen, and so many other everyday heroes, by registering today for Parkinson SuperWalk 2015. Because a cure can’t wait.

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Dr. Ronald Postuma appointed Chair of Scientific Advisory Board

Dr. Ronald Postuma
Dr. Ronald Postuma

Parkinson Society Canada is pleased to announce the appointment of Dr. Ronald Postuma as the Chair of its National Research Program Scientific Advisory Board (SAB). Dr. Postuma is a neurologist and assistant professor at McGill University, and author of two booklets on the non-motor symptoms of Parkinson’s disease, one for physicians and one for people with Parkinson’s. As Chair of the SAB, Dr. Postuma will also serve on the Research Policy Committee to ensure continuity between the two volunteer committees.

Dr. Postuma has served as a member of the SAB since May 2012. The SAB is a volunteer panel of respected experts from the Parkinson’s scientific community across Canada and conducts a rigorous peer review process using the Canadian Institutes of Health Research standards to determine scientific excellence and relevance to Parkinson’s disease. This ensures that Parkinson Society Canada funds research that is novel, important and scientifically sound.

To find out more about Parkinson Society Canada’s National Research Program and how the funding process works, download this brochure.

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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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