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.

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.

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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.

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.