Message from the Editor

Welcome to the summer edition of e-Parkinson Post.

It has been an exciting couple of months. We had a very successful Parkinson’s Awareness Month, with many of you joining us in activities such as education sessions, lectures, tulip sales and the opening of the Toronto Stock Exchange, where we raised awareness among the corporate sector.

The Movement Disorder Society brought over 3,000 neurologists, researchers and other healthcare professionals from around the globe to Toronto, in June, to discuss the latest research findings and new directions in treatment at the 15th International Congress of Parkinson’s Disease and Movement Disorders.

The influx of professionals with an interest in Parkinson’s to the city meant that we enjoyed the largest turnout to the 8th Donald Calne Lecture where Judy Hazlett gave a very moving introduction showing us the human side of Dr. Stanley Fahn, this year’s Donald Calne Lectureship Award recipient. Judy’s words underscore the fact that we are in the business of caring about people with Parkinson’s. That’s why we exist. The fact that there was a packed house for the Lecture showed just how keen people with Parkinson’s and their care partners are to learn more about Parkinson’s.

You might enjoy reading Judy Hazlett’s introduction to Dr. Fahn and an article on Dr. Fahn’s presentation on misperceptions and mistakes in the treatment of Parkinson’s. (The full presentation will be available at in mid-July or you may order your own copy of the DVD on request

Also in this issue we bring you up to date on Canadian research in Parkinson’s, including three clinical trials seeking participants in cities across Canada. Read about changes to Sinemet and Levocarb. Find out what the National Advocacy Committee is doing to enhance the lives of Canadians with Parkinson’s and caregivers.

Watch for the September issue of e-Parkinson Post where we will announce the research grant awards for this year.

If you haven’t registered yet for Parkinson SuperWalk, you can register online Please come out and walk for yourself, a family member or friend. Or sponsor someone who is walking. We need your support.

Send us your comments about individual articles and the publication, as a whole. Let us know if there is anything you would like to see included in future issues.

Have a safe and happy summer.

Marjie Zacks

My 31-year experience with Dr. Stanley Fahn

By Judy Hazlett

I’m privileged to know Dr. Fahn as a compassionate physician, one who has treated me as a patient with respect and understanding. Dr. Fahn diagnosed me with Parkinson’s disease 31 years ago almost to the day, so we’ve known each other a long time. No matter how bizarre my behaviours became with Parkinson’s, Dr. Fahn has always been calm and unfazed.

For example, I remember one time I was being examined by a resident who wasn’t very comfortable with my violent dyskinesias. Dr. Fahn came in, sat down and calmly said, “Oh, you’re moving a lot today.” By relating to me as a person rather than dealing only with Parkinson’s he made me comfortable. I was able to relax and confide in him and get the care that I needed.

Another time, I was under a table, immobile, and Dr. Fahn came in the room and he looked at me under the table and got down and knelt beside me. I was amazed and he talked with me, so Dr. Fahn is a down-to-earth man.

Dr. Fahn has devoted his career to improving the plight of people living with this debilitating condition. He has given countless hours to observing and caring for us with compassion and hard work. His participation in the frontiers of Parkinson’s research has always added validity to his advice.

Personally, Dr. Fahn has always seemed to have all the time in the world for me. He’s been extremely curious about how I’ve been, about changes in my condition. Being the scientist that he is, he has insisted that information be gathered consistently and in the proper format. He asks about how I’m doing and about Roger, my husband. He has encouraged me to continue activities which I love, for as long as possible.

Never has he sugar-coated the difficulties which lie ahead, yet he has generally given me hope that a cure or, at least, a new treatment may be on the horizon. He has shared ideas that are taking shape and progress that is being made in research and reports on patients who are doing well.

I have always left my appointments with Dr. Fahn feeling encouraged and renewed. Once when I was really slow and couldn’t walk, he asked me if I would like to run. I said, yes. I ran down the hall and ran back to him. He asked me, “How does that feel?” I scared the whole waiting room myself, by resounding, “Wonderful!” There was a glint in his eye and a big grin on his face. Above all else, he has understood my need to move.

Dr. Fahn has been a remarkable partner, supporting me in facing the challenges of living with Parkinson’s. He has fundamentally bettered my life. Thank you Dr. Fahn

Donald Calne Lecture: Individualized treatment best approach in Parkinson’s

Parkinson’s disease is a complex disease that requires individualized treatment. “No two people are alike. You have to decide what each person needs and treat accordingly.” That was the over-riding message of the 8th Donald Calne Lecture delivered by Dr. Stanley Fahn, the H. Houston Merritt Professor of Neurology and Director of the Centre for Parkinson’s Disease and Other Movement Disorders at Columbia University in New York.

Dr. Fahn, who is the Scientific Director of the (American) Parkinson’s Disease Foundation and Past President of the American Academy of Neurology, addressed over 150 attendees at the Donald Calne Lecture on Tuesday, June 7th in Toronto at the Hyatt Regency Toronto Hotel, with his presentation titled, Misperceptions and Mistakes made by patients and doctors in treating Parkinson’s disease. The event was hosted by Parkinson Society Canada and Parkinson Society Central & Northern Ontario.

Starting with the most common misperception on the part of patients that Sinemet lasts only 5 years or levodopa loses its effectiveness after 5 years, Dr. Fahn noted, “Levodopa never loses its effectiveness. What happens is that Parkinson’s disease worsens over time. The early-stage symptoms such as tremor, slowness of movement and rigidity are responsive to levodopa. However, the late-onset symptoms such as difficulty with posture, loss of balance and freezing of gait are areas that levodopa doesn’t touch. Levodopa never did treat those symptoms.”

Dr. Fahn then proceeded to expose a variety of myths and mistakes relating to starting therapy for Parkinson’s – when to start, when to delay, which drugs are effective and for which age group, whether there are relationships between Parkinson’s medications and disease progression, if and when combining medications is effective – all the while backing up his assertions with findings from published studies.

Dr. Fahn also addressed motor complications such as dyskinesias and “off” states in Parkinson’s – possible causes, susceptibility, strategies for reducing them. With a show of hands from audience members with Parkinson’s, he debunked the notion of many doctors that Dyskinesias are more of a problem for the patient than “off” states. He said, “I haven’t yet had a patient who would rather be “off.” They all want to be “on” and have the ability to move.”

In response to an audience question about non-drug therapies for Parkinson’s, Dr. Fahn cited the benefits of exercise and the availability of surgery such as deep brain stimulation (DBS), explaining what it is, when and why it is used. He also discussed the potential of continuous dopaminergic stimulation, using infusion therapies such as DuodopaTM, to pump levodopa directly into the small intestine and deliver it evenly throughout the day, to minimize and/or prevent motor complications. The intervention is widely used in Europe. It is approved in Canada on the condition that additional clinical trials are carried out to verify benefits. See Medication Info Sheet at

Looking ahead, Dr. Fahn anticipated there will be better drugs and better surgical techniques for Parkinson’s. He said, “We’ve solved most of the motor problems, with surgery and medicines. Now, we have to find ways to solve the intractable problems in Parkinson’s, such as the cognitive decline that comes with age.” He expressed hope that ongoing research into pathogenesis – understanding the mechanisms underlying neurodegenerative diseases like Parkinson’s – will unlock the key to understanding why dopamine neurons decline and die in Parkinson’s and provide a basis for finding ways to stop the process.

Thanks to Abbott Canada and Rx&D who sponsored this year’s Donald Calne Lecture.

The Donald Calne Lecture was recorded. Look for it online at by mid-July. Or order a copy, by contacting

The Donald Calne Lectureship was established in 2002 to honour Dr. Donald Calne for his outstanding service to the Parkinson’s community as Professor of Neuroscience, University of British Columbia and past chair and long-time member of the Scientific Advisory Board, Parkinson Society Canada. Each year, Parkinson Society Canada awards this lectureship to a distinguished neuroscientist of international reputation, whose work is primarily in the area of Parkinson’s disease.

Exciting new Parkinson’s research in Canada

Several new and innovative research projects are underway or recently completed. For example:

Dr. Michael Schlossmacher

An international study led by Dr. Michael Schlossmacher, who holds the Canada Research Chair in Parkinson’s disease at the Ottawa Hospital Research Institute and the University of Ottawa in Ottawa, has provided the first link between the most common genetic risk factor for Parkinson’s and the hallmark accumulation of a protein called alpha-synuclein within the brains of people with Parkinson’s. This study provides important new insights into Parkinson’s and paves the way for new avenues for clinical trials. Dr. Schlossmacher is a neurologist at The Ottawa Hospital and a member of the Parkinson Research Consortium. See Study provides first link between two major Parkinson’s genes.

Recruitment is underway in Quebec City, Gatineau, Ottawa, London, Saskatoon and Edmonton, for 60 men and women between 35 and 75 years old who have been diagnosed with Parkinson’s within the last two years, to participate in a phase II clinical trial to test the efficacy, safety and tolerability of CoganeTM (PYM50028) in treating early-stage Parkinson’s. Cogane is a new compound that modulates proteins in the brain that help the survival, development and function of nerve cells. The research will study whether Cogane could slow down or modify the progression of Parkinson’s. If successful, Cogane could represent a new approach to treating Parkinson’s. The study, sponsored by Phytopharm plc in the United Kingdom, is recruiting 400 participants worldwide. For more information, see Clinical Trials: Studies Seeking Participants.

Dr. Isabelle Boileau
Dr. Isabelle Boileau

At the Centre for Addiction and Mental Health in Toronto, clinical research scientist Dr. Isabelle Boileau is seeking 60 men and women with Parkinson’s over the age of 40 in the Greater Toronto Area and surrounding communities who are taking levodopa (Sinemet or generic), to participate in a brain imaging study using PET scan and MRI to understand better the relationship between long-term levodopa treatment and treatment-induced side-effects. The study is funded by Parkinson Society Canada, Ontario Mental Health Foundation and Canadian Institutes of Health Research. For more information, see Clinical Trials: Studies Seeking Participants

Medication Alert: Major changes to Sinemet and Levocarb

If you take Sinemet or the generic form Levocarb, please be aware that, over the past 18 months,

  • the supply of Sinemet and Levocarb has changed;
  • the markings on the Sinemet CR (controlled release) and Sinemet IR (immediate release) pills have also changed. These changes include new colours, shapes, markings, non-medicinal ingredients and storage conditions. The changes also affect how people take the drug and how physicians prescribe it, as the newly marked pills are no longer scored for splitting.For full details, visit and read Medication – Sinemet changes.

In the News

Parkinson’s isn’t a homogenous disease

New insights into Parkinson’s

Research looks into current drugs that may be helpful in Parkinson’s

The case for exercise in Parkinson’s continues to build

Educational resources now available in additional languages

  • Parkinson’s: the Facts
  • Progression of Parkinson’s Disease Information Sheet
  • Parkinson’s Medications – What you need to know!
  • Taking Control – 10 steps to help you cope with a recent diagnosis of Parkinson’s

These resources are now available online in Chinese, German, Italian, Punjabi and Spanish, in addition to English and French, making them accessible to thousands more Canadians. Read them online via Parkinson Society Canada’s Other Languages web page.

Advances in Parkinson’s: Rethinking a challenging disease

By Amanda Strong, Medical Writer, Montreal, QC

This article was scheduled to be published in June in Dimensions, the online magazine of the National Research Council of Canada.

Recent progress in our understanding of Parkinson’s disease is challenging long-established beliefs and may even pave the way for a cure.

Not long ago, Parkinson’s disease was a bit of a mystery. Although scientists knew it was a neurodegenerative disease linked with a lack of the neurotransmitter, dopamine, no one really understood what triggered it or how it progressed.

In recent years, many clues have been found, leading to changes in how we think about Parkinson’s — from the core cause to the early warning signs to how the disease spreads in the brain. And while the mystery of Parkinson’s is far from solved, this “re-thinking” is opening new avenues for prevention and treatment.

Genetic mutations provide exciting clues
One of the critical turning points in our understanding came in 1997, when researchers discovered an abnormal gene that appeared to be responsible for early-onset Parkinson’s. The discovery gave birth to a whole new direction in Parkinson’s research.

“Fifteen years ago, people were saying that genetics is not involved in Parkinson’s,” says Dr. Edward Fon, Chair of the Scientific Advisory Board of Parkinson Society Canada and Director of the McGill Parkinson Program. “So it’s a huge paradigm shift.”

Since then, researchers have identified mutations in seven genes that are directly linked to developing Parkinson’s. Genetic variability in at least five more genes is associated with an increased risk of developing the disease. Although pathogenic mutations (those that cause disease) account for only a small percentage of all Parkinson’s cases, they provide clues to our understanding of the disease, as well as targets for potential treatments.

“We’re tantalizingly close to a therapeutic and that is the biggest prize of all,” says Dr. Matt Farrer, Canada Excellence Research Chair in Neurogenetics and Translational Neuroscience at the University of British Columbia (UBC).

For example, the most common mutation involves a protein called LRRK2, which may become overactive. By blocking the protein’s function, some researchers believe they can protect patients against the neurodegeneration associated with Parkinson’s.

Identifying patients at risk
Another thing that has become clear in recent years is that Parkinson’s is not just a dopamine disease. Although the debilitating symptoms (such as trembling and rigidity) appear to be caused by the death of dopamine-releasing cells in a particular region of the brain, scientists now believe that changes are happening in other areas of the brain long before these symptoms appear.

Brain imaging studies of patients who are at high risk of developing Parkinson’s due to family history or ancestry seem to support this theory. But short of routine brain scans, how can doctors identify people who may have Parkinson’s but don’t yet display any visible symptoms?

It turns out that many patients with Parkinson’s have a medical history of loss of smell, abnormal REM (rapid eye movement) sleep, excessive sleepiness, chronic constipation, or other conditions.

“Many of these non-motor manifestations of the disease occur years or decades before, and so it may be a way to identify patients before it’s too late,” says Dr. Fon.

At the McGill University Health Centre in Montréal, Dr. Ron Postuma is looking at these connections, with funding from Parkinson Society Canada. So far, one of the most promising appears to be REM sleep behaviour disorder (RBD). About a third of Parkinson’s patients have a history of RBD. Studies have shown that after 10 years, about 20-35 percent of people with RBD develop Parkinson’s.

“The knowledge that has been gathered about Parkinson’s over the past dozen years has increased tremendously. Canada’s research scientists have contributed so much to furthering our knowledge of the disease, which we now understand is very complex. We know there is not one cause, but many potential culprits.” – Joyce Gordon, President and CEO, Parkinson Society Canada

Although not everyone with RBD will develop Parkinson’s, the strong association between the two suggests that RBD patients should be routinely monitored for Parkinson’s. What’s more, they make an ideal group for studying what might be happening in the early, presymptomatic stages of the disease.

“Our goal is to develop cost-effective screens to identify patients and stop the progression of the disease before symptoms appear,” says Dr. Postuma.

Does Parkinson’s spread like an infection?

Another relatively new idea about Parkinson’s relates to how it spreads in the brain. One theory gaining attention suggests that it may be a prion-like disorder, similar to mad cow disease.

Traditionally, researchers thought that neurons in people with Parkinson’s die because the mechanisms managing natural cell death go awry. In stark contrast, prion diseases are considered infectious: abnormal proteins spread from cell to cell, eventually destroying their host cells.

Recent research suggests that this may be the reason that an abnormal form of a protein called alpha-synuclein accumulates in the brains of Parkinson’s patients. Cellular damage due to this accumulation is “probably one of the most important mechanisms for getting Parkinson’s disease,” says Dr. Fon.

If this is true, it may be possible to develop drugs that stop or slow the spread of this abnormal protein. “If you could put a halt to that, you might be able to get the disease to slow down significantly,” says Dr. Fon. Once again, intervening early — before the disease becomes symptomatic — could be critically important.

“It is an exciting time to work in Parkinson’s disease, says Dr. Fon. “ I think we have a real opportunity to take advantage of some of these leads. Hopefully there will be drugs now that will start to get at some of the underlying mechanisms.”

“Many labs in Canada and elsewhere are working on understanding how defects in these genes and the pathways that they’re involved in could be responsible for Parkinson’s disease.” – Dr. Edward Fon

Genetic discrimination bill introduced in Ontario legislature

On May 18, 2011, Liberal MPP Mike Colle (Eglinton-Lawrence) introduced a private member’s bill in the Ontario legislature to amend the Ontario Human Rights Code to include “genetic characteristics” as a prohibited ground of discrimination, along with race, marital status and disability. If passed, the bill, would prohibit insurance providers from denying coverage or charging higher premiums based solely on a genetic predisposition to disease. It would also prohibit employers from taking into account employees’ genetic background in hiring, firing or promoting.

Colle’s support for the cause arose subsequent to his attendance at a Neurological Health Charities Canada (NHCC) Joint Brain Strategy meeting at Queen’s Park. The issue of genetic discrimination received widespread media coverage, including this Toronto Star/ article, Young woman faces insurance hoops due to father with Huntington’s.