Message from the Editor

Marina Joseph

Marina Joseph

Welcome to the fall issue of eParkinsonPost for 2014. First up is a reminder to register today for our latest Parkinson Webinar. about New Parkinson’s Treatments Available in Canada since the publication of the Canadian Guidelines on Parkinson Disease. The presentation features experts who led the clinical trials so you may understand treatment options, safety and more. It’s on Wednesday October 22, 2014, from noon to 1:00 pm (Eastern Time.) The Parkinson Webinar is free and you must register in advance, so visit www.parkinson.ca/webinar2014 to sign up now!

We are pleased to announce 29 new research awards for 2014 to 2016. Together with the 11 research awards now in their second year, the national Research Program is currently investing a total of $2,015,332. Parkinson Society Canada and it regional partners have funded more than 450 research awards, totalling more than $24 million since 1981.

Some of the research funding comes from the efforts of everyday heroes who participate and donate to our largest, Canada-wide fundraising event Parkinson SuperWalk. Find out about the latest results, which team is out in front so far and how close we are to our $3 million goal for 2014. The event website will be open until December 12 to accept donations.

On the advocacy front, a report on a ground-breaking study provides vital information on the impact of Parkinson’s disease in Canada. We now have all-Canadian, evidence-based information to help us press forward with advocacy plans to help improve the lives of Canadians living with Parkinson’s. Find out how results from the National Population Study on Neurological Conditions increases the chances of policy change and government investment, from increased funding for research to more support for caregivers.

Some of the information in the study report touches on the psychosocial impacts of Parkinson’s disease. And the recent death of Robin Williams also shone a spotlight on the link between depression and Parkinson’s disease, resulting in some confusing media reports. We provide you with some straight answers on this topic.

Finally, we ask you to get involved and prepare for the 2015 federal election and beyond. Now is the time to take on the role of Parkinson’s Ambassador. Consider being a champion for those living with Parkinson’s in your community.

We encourage you to share this newsletter with friends, family and your Parkinson’s health care team. And let your voice be heard by providing comments to the articles in this issue. If you have an idea for a future story, send it to editor@parkinson.ca.

Ground-breaking study provides vital information on the impact of Parkinson’s disease in Canada

Joyce Gordon, President and CEO of Parkinson Society Canada (centre-right, holding report), and Health Minister Rona Ambrose (centre left, beige jacket), attend a group photo session with representatives of other members of the Neurological Health Charities of Canada after the Minister announced the release of the report on the National Population Health Study of Neurological Conditions in Canada during a related event in Ottawa on September 11, 2014.

Parkinson Society Canada now has all-Canadian, evidence-based information about the impact of Parkinson’s disease to press forward with advocacy plans to help improve the lives of Canadians living with Parkinson’s. Having the relevant facts at hand increases the chances of policy change and government investment, from larger funding of research to more support for caregivers.

And the facts come from the report on The National Population Health Study of Neurological Conditions, released September 11. The four-year, $15 million study investigated the scope of 14 neurological conditions, including Parkinson’s disease, and how they affect Canadians, as well as related risk factors, economic costs and the use of health services. It involved 130 researchers and clinicians from 30 institutions across Canada, as well as 177,000 Canadians affected by neurological conditions who offered their insights and personal experiences. The study was co-managed by the Public Health Agency of Canada and Neurological Health Charities Canada (NHCC). Parkinson Society Canada (PSC) played a pivotal role in the study through our leadership role in NHCC.

Two of the most significant findings (link to ‘Key findings’ subhead at end of article) of the study concerning Parkinson’s disease are about its dramatic increase in prevalence in the near future.

  • The number of Canadians over 40, living with Parkinson’s disease, will increase by 65 per cent, from 99,000 in 2016 to 163,700 by 2031.
  • The number of Canadians over 65, living with Parkinson’s disease, will more than double to 148,800 by 2031.

For Yvon Trepanier the completion of the study and the publication of the report is the culmination of a long, tough challenge; almost equal to his life with early onset Parkinson’s disease.

“When I was chair of the PSC Advocacy Committee, we just didn’t have the Canadian data we needed to convince government that people with Parkinson’s needed more support. Even our first request for funds to collect data on the numbers and impact of Parkinson’s, was dismissed as insignificant. I knew we had to join forces with others to get what we all needed,” said Yvon.

It wasn’t until PSC joined forces with other 23 other neurological charities and formed the NHCC that the federal government agreed to invest in the now completed study. Most importantly, the federal, provincial and territorial governments will continue to gather data and report on the prevalence and impacts of neurological conditions in Canada, including those of Parkinson’s disease.

“We are incredibly proud of the contributions made by Canadians living with Parkinson’s disease and the role our organization played in this outstanding achievement,” says Joyce Gordon, President & CEO of Parkinson Society Canada and Chair, Neurological Health Charities Canada (NHCC), the partner in the study.

For Bruce Ireland, past Chair of PSC, working on a micro simulation to determine the costs associated with Parkinson’s disease for the study was incredibly personal. His wife Karen, who lives with Parkinson’s, completed one of the person-affected surveys.

“This is a ground-breaking study,” said Bruce, “giving us our first, evidence-based, overview of Parkinson’s disease and its impacts for Canada as well as clear indications of the gaps in care, data and research that we must address right away. We are now a key priority on the government’s agenda.”

The report points out the lack of information on the risk factors or causes of most neurological conditions, including Parkinson’s. Reliable data collection and ongoing research are the best ways to address such gaps. It also highlights the physical, financial and emotional burdens faced by those living with Parkinson’s disease and their families. Parkinson Society Canada’s national advocacy campaign is looking for real improvement on all these fronts.

“Having the facts means that it is now essential for the government to take action,” says Gordon.

In 2014, members of Canada’s Parkinson’s community asked the federal government to enact legislation against genetic discrimination by employers and insurance companies, as well as extending Compassionate Care Benefits to caregivers who are providing support to people with a serious chronic or episodic medical condition. In addition, the National Advocacy Committee and other stakeholders consistently request increased investment in research and improved access to quality health care.

If you are interested in joining other Canadians to advocate for government action on the results of this publicly-funded study, send a letter today to your MP. Supporting information and tools, can be found online at Parkinson Society Canada’s Advocacy Centre at www.parkinson.ca.

Key findings of the study regarding Parkinson’s disease include the following:

 

  • The number of Canadians over 40, living with Parkinson’s disease, will increase by 65 per cent, from 99,000 in 2016 to 163,700 by 2031.
  • The number of Canadians over 65, living with Parkinson’s disease, will more than double to 148,800 by 2031.
  • Parkinson’s has the third highest level of direct health care costs, after Alzheimer’s disease and other dementias (which are grouped as one condition in the study) and Epilepsy.
  • People living with Parkinson’s disease have the highest use of prescription medication.
  • Annual, out-of-pocket expenses for each person with Parkinson’s is $1,100 on average.
  • The level of stress doubles when caring for an individual living with neurological conditions and is greater if the neurological condition is accompanied by cognitive impairment or behavioural issues, which affects many people with Parkinson’s.
  • Forty per cent of respondents with Parkinson’s disease experience thinking and problem-solving limitations; and 50 per cent experience memory limitations.
  • More than half of those who reported having Parkinson’s disease have fair or poor general health.
  • The number of days in residential care is highest for those with Huntington’s, Alzheimer’s and other dementias, cerebral palsy and Parkinson’s disease.

Everyday heroes bring extraordinary hope to Parkinson SuperWalk as they aim for $3 million target.

The parks and streets in 114 communities were filled with heroes of all ages and abilities when folks set out to raise $3 million in the 24th Parkinson SuperWalk. The top team will be announced after the final tallies come in, but as of today, Mississauga Warriors is in the lead with $26,041.75 raised, led by team captain Jim Wilkinson.

“This year, our Mississauga Support Group members joined together with other community groups for our most successful team effort in three years,” said Jim. “And, every team member went out and gathered donors and other walkers from among their friends and family for this important cause,” said Jim, who lives with Parkinson’s disease.

Parkinson SuperWalk in Saskatoon was a fun, family event with the serious purpose of raising awareness and funds for support, advocacy, education and research into Parkinson’s disease, just like the 113 other Parkinson SuperWalks held across the country on September 6 and 7, 2014. Photo credit: mjand.co


Thanks to all the individuals who shared their inspirational stories and nominated their hero in the Everyday Heroes Facebook contest. Read about Daphne Norman Bowers from Pacquet, Newfoundland, whose winning entry received 497 votes.

Proceeds from Parkinson SuperWalk funds educational resources like information sheets about medication and booklets about living with Young Onset Parkinson’s disease. Proceeds also support services provided by Parkinson Society Canada and its regional partners to people living with Parkinson’s from the pacific coast to Atlantic Canada and many places in between.

The success of this single largest fundraiser also means that more money can be invested in the National Research Program that enables Canadian Parkinson’s scientists to learn more about the causes of Parkinson’s, develop better treatments and seek a cure for this brain disease. For Canadians like Tim Hague, Sr., aged 49, the importance of taking positive action is heightened.

Winner of the inaugural Amazing Race Canada, Tim was diagnosed with Parkinson’s disease in February 2011 at the age of 46. As a nurse it became evident almost immediately of the need for enhanced Parkinson’s Wellness Programs and so he reached out to his local Parkinson Society in Winnipeg, Manitoba and has never looked back.

“I commit a considerable amount of time pursuing activities that will help people with Parkinson’s live better, like raising awareness and raising funds through Parkinson SuperWalk,” says Tim, Sr.

Visit www.parkinsonsuperwalk.ca to see the roster of top fundraisers and top teams online. Kudos to more than 50,000 volunteers, walkers and donors for making a difference! Thanks to national sponsors Teva Canada Innovation, Naturegg Burnbrae and Roots Canada. Remember, you can continue to donate online until December 12, 2014.

Be a Parkinson’s Ambassador in your riding

2014-09-24-ambassadorDo you want to make a difference in the lives of Canadians affected by Parkinson’s disease? If so, we invite you to join our Parkinson’s Ambassador Network. You and other volunteers will play an important role in the upcoming 2015 federal election as representatives of the Parkinson’s community in political ridings across Canada.

Parkinson Society Canada will help connect each Parkinson’s Ambassador with their local Member of Parliament and candidates to discuss issues affecting the Parkinson’s community. We will support our ambassadors throughout the campaign, providing online training, briefings on policy priorities and ongoing guidance to ensure ambassadors are fully prepared for their responsibilities during the election. Parkinson’s Ambassadors may also have an opportunity to participate in other national and provincial advocacy initiatives beyond the election. For more information, visit our website.

Whether you are a person 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!

Contact Caphan Lieu, Coordinator, Public Affairs and National Programs, at Caphan.Lieu@parkinson.ca or toll-free at 1-800-565-3000 ext. 3478 to find out more.

Scientists seek greater understanding of complex disease with funding from the National Research Program

2014-09-24-researchParkinson Society Canada (PSC) and its regional partners have great expectations for the 29 new grant, fellowship and student awards funded to advance our knowledge of Parkinson’s, a complex disease. One of the most promising of this year’s recipients is Dr. Jean-François Trempe, assistant professor at McGill University, who received a New Investigator Award.

Trempe, whose great-uncle had Parkinson’s, wants to solve the puzzle of Parkinson’s through basic understanding about the way the disease works. He is studying the structure and shape of PINK1, a protein that plays a critical role in familial Parkinson’s disease. Learning the shape of this protein could eventually help researchers develop a drug to repair the protein when it is damaged, to help it do its intended job of keeping brain cells healthy.

“Medical history tells us that whenever we get the structure of a molecule, it gives us so many ideas about how to fix it,” says Trempe. “There is a saying that a picture is worth a thousand words – a structure is worth a thousand experiments.”

Parkinson Society Canada (PSC) is the only health charity that specifically funds Parkinson’s research in Canada; funding research that investigates most aspects of the disease, including: causes, complications, cognitive impairment, biomarkers, neuroprotection and quality of life.

Funding for this cycle totals $1,645,332 to support new Parkinson’s research projects in Canada over the next two years. Parkinson Society Canada’s National Research Program is currently committed to investing a total of $2,015,332, including 11 research awards now in their second year. The National Research Fund has now funded more than 450 research awards, totaling more than $24 million since 1981.

The 2014 to 2016 research awards* include:

  • 10 Pilot Project Grants
  • 2 Psychosocial Pilot Project Grants
  • 3 New Investigator Awards
  • 4 Basic Research Fellowships
  • 2 Clinical Movement Disorders Fellowships
  • 6 Graduate Student Awards
  • 1 Psychosocial Doctoral Award
  • 1 Psychosocial Research Grant

* A detailed list of the researchers (link to Funded Research page 2014-2016 list on PSC website), their project titles, affiliations and funding amounts is available on Parkinson Society Canada’s website at http://www.parkinson.ca.

Another newly funded researcher is immunologist Patrick Flood at the University of Alberta. Dr. Flood is investigating a drug compound that has been shown to stop the inflammatory process involved in killing the brain cells that produce dopamine and regulate movement. Flood and his colleagues are using proteins to deliver that drug directly to the affected area of the brain, and hope eventually not only to stop the death of dopamine-producing cells, but also to regenerate them to reverse the destruction.

If we can convert the inflammatory response from destruction to regeneration, there’s a possibility we will regenerate at least enough dopamine-producing neurons that people won’t suffer symptoms,” says Flood.

Individual research project profiles will soon be added to the website at www.parkinson.ca. So check back later to learn more about the award recipients.

Death of Robin Williams shines spotlight on Parkinson’s and depression

2014-09-24-depression

Photo credit : istock

The suicide of actor and comedian Robin Williams last month and the subsequent revelation that he was newly diagnosed with Parkinson’s disease gave rise to a flurry of rumour, speculation and confusion about the relationship between Parkinson’s and depression. Parkinson Society Canada and our regional partners responded to many calls from media, individuals living with Parkinson’s and their family members.

The reality is that depression is one of the known non-motor symptoms of Parkinson’s disease; as many as 50 per cent of people with Parkinson’s experience the symptoms of clinical depression at some stage of the disease. Unfortunately, the stigma of mental illness, in addition to others’ perceptions of Parkinson’s disease, and lack of information about the connection between depression and this neurological disease, keeps many people from seeking and receiving help for their physical and mental symptoms.

Bill Rea of Orangeville, who has been living with Parkinson’s disease for four years, and until now had shared this knowledge only with family and close friends, wrote to us about his reaction to the death of Williams. He mentioned to his wife that it was a shame that Williams had not lived to help raise awareness and funds for Parkinson’s research. “Yes, Robin could have done a lot to increase awareness and raise funds for PD research…” he wrote. “But I can too.” Since that self-revelation, Bill has given up his preoccupation with keeping his diagnosis a secret and this year organized a Parkinson SuperWalk team called Captain Kawagama in Orangeville.

Although living with Parkinson’s presents its challenges, and the diagnosis can be frightening at first, depression in people with Parkinson’s may be caused by the chemical and physical changes in the area of the brain that affect mood, as well as movement. In fact, depression may be an early symptom of the disease, with some people experiencing depression up to a decade or more before experiencing any motor symptoms of Parkinson’s.

Bill too experienced a bout of depression after learning of his diagnosis in his mid-forties. “I was at home taking prescription anti-depressants and sleeping pills, and watching marathon sessions of Cake Boss.” Bill did emerge from his depression with the loving support of his family and friends, as well as the information and support he received from Parkinson Society Canada, his doctors and his pharmacist.

Depression can be one of the most disabling symptoms of Parkinson’s disease. And, it is important to know there are effective treatments. As much as possible, remain socially engaged and physically active. Resist the urge to isolate yourself. For information on PD support services in your community, call our toll-free Information and Referral line at 1-800-565-3000 or find a regional office near you.

Seek medical help to manage the symptoms as soon as you notice them. You may want to consult a psychologist and there are medications that help relieve depression in people with Parkinson’s. For more information on PD and depression, refer to pages 28-29 of Dr. Ronald Postuma’s A Guide to the Non-Motor Symptoms of Parkinson’s Disease for patients.(link to Patient Guide, pages 29-30.)

You may also want to recommend to your health care professional the Canadian Guidelines on Parkinson’s Disease and related resources at www.ParkinsonClinicalGuidelines.ca.

Seek out the emotional, physical and psychological supports that are right for you as you live your life with Parkinson’s disease. As Bill says, “for now I choose to live my life and not let it [Parkinson’s disease] control me… for now I choose to enjoy life to the extent that I can and take things one day at a time.”

Raising the Parkinson’s voice on Parliament Hill

Lobby Day

Lobby Day

Our lobby day in Ottawa was an excellent opportunity to identify champions for Parkinson’s and to ensure the needs of Canadians affected by the disease are well reflected in national policy.

Our conversations with MPs and civil servants focused on three priority areas impacting the Canadian Parkinson’s community:

1. Support for caregivers

2. Genetic fairness legislation, and

3. Establishing a comprehensive healthcare plan to address the complex needs of seniors.

Canadians affected by Parkinson’s were also recognized in both the House of Commons and the Senate. MP Wladyslaw Lizon, member of the Standing Committee on Health, and Senator Kelvin Ogilvie, Chair of the Standing Committee on Social Affairs, Science and Technology, each made an announcement to highlight Parkinson’s Awareness Month.

Our sincere gratitude to those volunteers and staff who contributed to this lobby day’s phenomenal success, including representatives from the National Advocacy Committee, Parkinson Society Eastern Ontario and the National Board of Directors.

Parkinson Society Canada is building on the positive momentum of lobby day by continuing to foster relationships with key decision makers and identifying new opportunities to ensure the Parkinson’s voice is heard at public policy tables.

For more information, visit our Advocacy Centre on our website at parkinson.ca.


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All material related to Parkinson's disease contained in Parkinson Post is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflect the opinion of the writer and are not necessarily the opinion of PSC.

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