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Hope and determination drive Parkinson SuperWalk to success

Published September 13, 2011 September 2011 2 Comments

Parkinson SuperWalk 2011Parkinson Society Canada congratulates and thanks all the many participants who came together  – walkers, volunteers and donors, bringing a spirit of hope to raise funds for Parkinson Society Canada at its annual Parkinson SuperWalk, the largest fundraising event for Canadians living with Parkinson’s.

“Parkinson SuperWalk is my way of connecting to people in our community living with Parkinson’s,” says Alain Garçeau, dedicated Parkinson SuperWalk participant, diagnosed at age 45. “On this day we honour those living with the condition and show gratitude to those like my wife and children who are such a tremendous source of support to me, and whom I cannot thank enough for their strength and love.”

Walkers of all ages, and even some four-legged canine friends, joined forces as they were cheered on by family members, loved ones and neighbours in the annual walk which has raised $2.4 million so far this September.

Parkinson SuperWalk 2011“Being heard, being understood and sharing one’s experiences can make a huge difference in the lives of people with Parkinson’s,” says Joyce Gordon, president and CEO of Parkinson Society Canada. “We want Canadians touched by Parkinson’s to know that there is a huge network of support, where people can speak freely about their condition with someone who understands; we want Canadians with Parkinson’s to know that they are not alone.”

Proceeds from the event allow Parkinson Society Canada to fund a broad range of resources and support, in person, in print and online, for individuals, like Alain, to help them along their Parkinson’s journey, in communities all across Canada.

Parkinson Society Canada gratefully acknowledges the generosity of Parkinson SuperWalk national sponsors: Teva Canada Innovation, Naturegg, Sharp AQUOS® and Roots.

Online donations for Parkinson SuperWalk will continue to be accepted until October 3, 2011 at parkinsonsuperwalk.ca.

Walking for people living with Parkinson’s

Parkinson SuperWalk 2011“Months after meeting a new friend whose grandmother has Parkinson’s, I found myself taking part in Parkinson SuperWalk at McGuire Lake Park. Together with dozens more people dressed in the year’s event T-shirt, we walked not only to raise awareness, but many had raised funds for the Parkinson Society. Many from the Sicamous Eagles (hockey team) were present, helping seniors from the surrounding seniors’ homes, as they pushed their wheelchairs around the small lake. Informational pamphlets were widely available to anyone who wanted to learn more about Parkinson’s disease or Parkinson Society and its mission. Refreshments were available to participants who stood around afterwards to mingle and converse, many of them sharing stories about how Parkinson’s had touched their lives.” New Parkinson SuperWalk supporter and Facebook fan, Ben Stewart of Salmon Arm, B.C.

Read more of Ben’s story in his blog post (original content available in English only): http://www.shuswapgroove.com/arts-culture/community/parkinsons-superwalk.html.

National research program – 28 new awards

Published September 13, 2011 September 2011 Leave a Comment

Together with our partners, Parkinson Society Canada is proudly supporting 28 new grant, fellowship and student awards, as of July 1, 2011:

  • 12 Pilot Project grants
    (3 funded by Parkinson Society Ottawa, Parkinson Society Southwestern Ontario, and Parkinson Society Quebec)
  • 3 New Investigator Awards
  • 2 Basic Research Fellowships
  • 1 Clinical Movement Disorders Fellowship
  • 1 Clinical Research Fellowship
  • 7 Graduate Student Awards
  • 1 Psychosocial Doctoral Award, in partnership with the Canadian Institutes of Health Research (CIHR) – Institute of Neurosciences, Mental Health & Addiction
  • 1 Psychosocial Research Grant, in partnership with CIHR – Institute of Neurosciences, Mental Health & Addiction

Click here for more information on these awards, including project titles and amounts.

20 participants needed for study of Parkinson’s diagnosis disclosure in the workplace

Published September 13, 2011 September 2011 Leave a Comment

This research study is looking at the choices people with Parkinson’s make regarding disclosing their diagnosis in the workplace – disclosure vs. non-disclosure, timing and reasons, to gain a better understanding of the issue for future education and advocacy efforts.

In Phase I, the study was piloted by Parkinson Society Central & Northern Ontario, in January 2011, with participants from Ontario. Phase II, launched in June, has expanded the research to include people from communities across Canada. 20 more participants are needed.

For details and contact information, see Disclosure of Parkinson’s disease diagnosis within the workplace, Phase II.

Medication timing critical in Parkinson’s disease

Published September 13, 2011 September 2011 7 Comments

(This article appears in the September 2011 edition of Hospital News)

A one-week disruption of his Parkinson’s medication schedule resulted in nearly three months of distress for Lorne Collis after he returned home from a brief hospital stay for a kidney ailment in December 2009. “My tremors were uncontrollable,” says Collis. “My restless legs syndrome was extremely uncomfortable. It took about three months of getting back on my medication routine and exercising before my body felt normal again.”

Get it on timeIt’s a common experience. People with Parkinson’s enter hospital for reasons that may or may not be related to Parkinson’s and find that the hospital’s drug rounds do not coincide with their own medication regimen. However, in Parkinson’s, a minor change in medication timing can have major negative effects on symptom management and general recovery.

The uneven release of dopamine can result in a person suddenly not being able to move, get out of bed or walk down a corridor. It can also lead to serious complications such as aspiration pneumonia and bowel obstruction.

“When Parkinson’s symptoms get out of control, it tends to exacerbate the reason why the person is in hospital.” says Barbara Snelgrove, director of education and support services for Parkinson Society Canada. “It also makes care of the person more difficult for healthcare professionals.”

To address these issues, Parkinson Society Canada is the first Parkinson’s organization in North America to introduce Get it on time, an innovative education and awareness program designed to ensure that people with Parkinson’s receive their medication on time, every time, whether they are in emergency rooms, hospital wards, or long-term care facilities.

Get it on time was developed and implemented successfully by Parkinson’s United Kingdom. Parkinson Society Canada has adapted it to the Canadian healthcare environment, with financial support from the Canadian Institutes of Health Research and the Canadian Patient Safety Institute.

Launched in January 2011, the program uses the voices of people with Parkinson’s and their care partners to target the Get it on time message to nursing staff and front line health professionals through in-service training and communication tools such as information kits, posters and Get it on time stickers to attach to patients’ charts or care plans.

The program also has a self-advocacy component, encouraging people with Parkinson’s to bring their own medication to the hospital or care facility and inform staff about their precise medication needs, using the Get it on time medication card.

“We’re approaching this on many layers,” says Debbie Davis, chief executive officer of Parkinson Society Central & Northern Ontario, one of the regions piloting the national program. “We know that it can improve quality of life for people with Parkinson’s while they are in hospital or in a care facility. We also know that the people caring for them will have an easier time if they are educated as to what Parkinson’s is and what they can do to make people’s lives better.”

To date, over 50 Get it on time presentations have been made to long-term care facilities, retirement residences and Parkinson’s support groups in Ontario. The campaign will expand to Ontario hospitals, this fall.

Get it on time is also being piloted in communities in Saskatchewan. In French, it is called Le prendre à temps. Parkinson Society Canada is seeking funding to roll out the program nationally.

Lorne Collis has already benefited from Get it on time. In hospital recently for complications relating to Crohn’s disease, he says, “Because of my knowledge of the Get it on time program, I advocated for myself. I said, ‘these are the times I take my pills – 6 a.m., noon, 5 p.m., 9 p.m.’ One nurse had a relative with Parkinson’s, so she understood. She spoke to the charge nurse. They allowed me to take my own pills at my scheduled times. When I left hospital, this time, my Parkinson’s symptoms were fine and totally under control. It made a huge difference.”

For more information about Get it on time, contact info@parkinson.ca.

Real advocacy outcomes for Canadians living with Parkinson’s

Published September 13, 2011 September 2011 Leave a Comment

By Yvon Trepanier, Chair, National Advocacy Committee

Yvon Trepanier, Chair, National Advocacy Committee

Yvon Trepanier, Chair, National Advocacy Committee

In 2010, Parkinson Society Canada began talking to government officials and staff about the need for a national brain strategy with the goal of effecting policy change and investment in seven key areas:

  • brain research
  • access to care
  • caregiver support
  • income security
  • genetic fairness
  • public education and awareness
  • prevention

The Government of Canada responded, in June 2011, with significant commitments in the areas of brain research and caregiver support. Similarly, provincial governments are beginning to answer the call to support brain research and to examine the broader issues facing people living with brain conditions like Parkinson’s disease. Governments across Canada have made important investments. They are also beginning to look at policy with an understanding that living well with a brain condition is much more than a health issue.

Increased and accelerated science

Research drives innovation – the kind of innovation that leads to new treatments and, ultimately, a cure for neurological conditions like Parkinson’s. Over the next decade, the government of Canada will invest up to $100 million in brain research. These funds actually represent a significantly larger investment because the government funds will match donor funds. The net result is a minimum of $200 million in new funding to be invested in brain research over the coming 10 years.

Support for family caregivers

Caregivers play such an important role for the loved ones they care for and for society overall. It is critical that this role be recognized, appreciated and supported with meaningful measures that provide real assistance. In the recent federal budget (June 2011), the government of Canada committed to a new caregiver tax benefit of $2000 a year.

Several provinces are also introducing new policy to better support caregivers:

  • In Manitoba, Bill 42, the Caregiver Recognition Act was tabled this spring. The purpose of the legislation is to increase recognition and awareness of caregivers, acknowledge the valuable contribution they make to society and help guide the development of a framework for caregiver recognition and caregiver supports.
  • In Ontario, a Private Member’s Bill was tabled, in June 2011, to establish an annual $1200 provincial tax credit for caregivers. In tabling the motion, Ontario MPP Dave Levac said, “In doing some research, it looks like it would cost $41 billion across Canada if we started to pay for the caregivers who do this for their loved ones. It’s a testimony to their commitment and we should try to offset it (the cost) a little bit.”

Your support is critical

Recent advances at federal and provincial levels are an excellent beginning but much more is needed to improve the quality of life of more than 100,000 Canadians with Parkinson’s, and more than 5 million Canadians with neurological conditions.

We are seeing positive signs that the issue of genetic fairness is beginning to garner support from federal and provincial representatives. We will continue to advance recommendations to improve income security for families living with Parkinson’s. And we are always working to increase public awareness about Parkinson’s disease so that Canadians with Parkinson’s benefit from greater understanding and inclusion in their communities.

Your support for this work is critical. To learn more about Parkinson Society Canada’s advocacy program, please visit the Advocacy Centre.

In the news

Published September 13, 2011 September 2011 Leave a Comment

Living with Parkinson’s

New insights into Parkinson’s

UBC Scientist appointed to Dr. Donald Rix B.C. Leadership Chair in Genetic Medicine

Medication Update

Making the most of Parkinson’s

Canadian Medical Association report on the National Dialogue on Health Care Transformation

Message from the Editor

Published June 23, 2011 June 2011 Leave a Comment

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 www.parkinson.ca in mid-July or you may order your own copy of the DVD on request to communications@parkinson.ca.)

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 at www.parkinsonsuperwalk.ca. Please come out and walk for yourself, a family member or friend. Or sponsor someone who is walking. We need your support.

MarjieZacksSend 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
Editor

My 31-year experience with Dr. Stanley Fahn

Published June 23, 2011 June 2011 1 Comment

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.

Dr. Stanley Fahn and Judy Hazlett. “Once a patient of Dr. Fahn, always a patient of Dr. Fahn. I know I can always call on him.”

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

Published June 23, 2011 June 2011 Leave a Comment
Dr. Stanley Fahn

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 parkinson.ca.

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 www.parkinson.ca by mid-July. Or order a copy, by contacting communications@parkinson.ca.

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.

Dr. Ted Fon, Chair, Donald Calne Selection Committee and Chair, Parkinson Society Canada Scientific Advisory Board presents Dr. Stanley Fahn with the Donald Calne Award.

L to r: Eli Pollard, World Parkinson Congress; John Parkhurst, Chair, Parkinson Society Central & Northern Ontario (CNO); Leslie Turcotte, Rx&D (sponsor); Dr. Stanley Fahn; Bruce Ireland, Chair, Parkinson Society Canada; Debbie Davis, CEO, CNO; Judy Hazlett; Joyce Gordon, President & CEO, Parkinson Society Canada; George Wielgosz, Abbott Canada (sponsor), Dr. Ted Fon, Chair, Donald Calne Selection Committee and Chair, Scientific Advisory Board, PSC; Susan Mattingly, Abbott Canada (sponsor).

Movement Disorder Society holds Congress in Toronto

Published June 23, 2011 June 2011 Leave a Comment

The 15th International Congress of Parkinson’s Disease and Movement Disorders was held in Toronto, from June 5th to 9th. To see Parkinson’s-related news from the Congress, visit Movement Disorder Society Toronto 2011 Congress – News Releases.

Exciting new Parkinson’s research in Canada

Published June 23, 2011 June 2011 Leave a Comment

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

Published June 23, 2011 June 2011 2 Comments

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 parkinson.ca and read Medication – Sinemet changes.

In the News

Published June 23, 2011 June 2011 Leave a Comment

Parkinson’s isn’t a homogenous disease
• An interview with Dr. Francesca Cicchetti, Associate Professor and researcher at Laval University, in Tandem, the English-language complement to Corriere Canadese, Canada’s Italian newspaper.

New insights into Parkinson’s
• Parkinson’s Disease: Why Dopamine Replacement Therapy Has a Paradoxical Effect On Cognition
• Potential Cause of Severe Sleep Disorder Discovered, Implications for Parkinson’s Disease

Research looks into current drugs that may be helpful in Parkinson’s
• Leukemia drug holds promise for Parkinson’s
• Ibuprofen could cut Parkinson’s risk by a third: Study
• Parkinson Society Canada response

The case for exercise in Parkinson’s continues to build
• Treadmill Walking Improves Parkinson’s Symptoms
• Low Intensity Treadmill Exercise Is Best to Improve Walking in Parkinson’s, Study Suggests

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Publication of e-ParkinsonPost in 2011 is generously sponsored by EMD Serono.
Charitable registration number 10809 1786 RR0001
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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