Tackling tough issues to improve your life with Parkinson’s

Dr. Oury Monchi speaks to MP Joel Lightbound during a  Parliamentary breakfast in Ottawa on May 4, 2017.
Dr. Oury Monchi speaks to MP Joel Lightbound during a Parliamentary breakfast in Ottawa on May 4, 2017.

Are you uncertain about whether medical marijuana may help you? If you undergo genetic testing, do you have to share the results with your insurer? Will your children? And what about access to a new treatment suggested by your specialist; is the cost covered in your province?

Parkinson Canada, along with more than 100 dedicated volunteer Ambassadors and committee members, shares your concerns and has taken these to elected officials and public servants across the country. Like you, they want to improve your access to drugs, clarify your options, protect your rights and improve services to you and your family.

“Together, with one voice, we are making a difference,” says Jacquie Micallef, Senior Manager, Public Affairs and Partnerships.

Here’s a quick rundown of the advances we’ve all achieved in the last few months, advocating on your behalf about issues that matter to you and your loved ones.

Improving your access to medication

On February 14, 2017, the BC government approved coverage of Duodopa® for people with advanced Parkinson’s, following a successful letter-writing campaign asking the government for public funding of Duodopa.  While inspired by this victory, other parts of Canada still do not cover Duodopa. You can join the current campaign for coverage of Duodopa in Nova Scotia. “There are encouraging signs that coverage of Duodopa will be coming to Nova Scotia,” says Micallef.

Clarifying your options

In response to the increasing demand for clarity and information from the Parkinson Community in Canada, the Parkinson Canada Board of Directors recently approved two new position statements this year, addressing federal legislation, both new and pending.

Marijuana (also referred to as cannabis), is legally accessible in Canada for medical purposes. To date, it has not been conclusively demonstrated by science-based evaluation that marijuana can directly benefit people with Parkinson’s disease. There is a need for larger, controlled studies to better understand the efficacy of medical use of marijuana for Parkinson’s. You can read our position statement on medical marijuana and Parkinson’s and background information here.

On June 17, 2016, Bill C-14 on Medical Assistance in Dying became law in Canada. In response to a demand for information and clarity from the Parkinson’s community across Canada, including: people living with Parkinson’s, their families and the people who provide care for them; Parkinson Canada developed a position statement on the new, federal Medical Assistance in Dying legislation. Background information is also available on the same website page as the position statement.

Parkinson Canada’s position on medical assistance in dying is guided by Canadian federal legislation; our vision, mission and values; and consultation with many sources including, most importantly, the Parkinson’s community.

Sprague Plato shares his story at a Parliamentary breakfast in Ottawa on May 4, 2017.
Sprague Plato shares his story at a Parliamentary breakfast in Ottawa on May 4, 2017.

A dementia strategy and improved caregiver support in Ontario

Last month the Ontario government announced two major investments with impact for Ontarians living with Parkinson’s and those who care for them: The latest Ontario budget includes $100 million over three years for a provincial dementia strategy and the government announced $20 million for caregiver respite services, caregiver education and training and a new, streamlined Ontario Caregiver Tax Credit. (You can read the Ontario government’s news release here.)

The development of the dementia strategy will be guided by the Ontario government discussion paper released in September 2016. This discussion paper was based on consultations that Parkinson Canada engaged in every step of the way. In fact, Parkinson’s disease is explicitly described in the discussion paper: Click here. We are also pleased that the strategy includes the following language: “Alzheimer’s or other dementias,” and “Ontarians with a physical or cognitive condition, injury or chronic life-limiting illness.”

Both initiatives were included in the the Ontario Caregiver Coalition (OCC) submission and presentation to the Ontario Standing Committee on Finance during the pre-budget consultations in January. Parkinson Canada is a leading member of the OCC and, along with the Alzheimer Society of Ontario, wrote the OCC’s budget request. Parkinson Canada and a representative from the Alzheimer Society of Ontario, on behalf of the OCC, presented the request.

A special thanks to Sprague Plato, John Parkhurst, Chris Hudson, Sandie Jones, Robert TerSteege and Dr. Susan Fox for participating as working group members on the development of the dementia strategy. We would also like to extend a thanks to the many volunteers who participated in roundtables across the province, as well as Ambassadors and community members who participated in the letter writing and social media campaigns demanding a  dementia strategy in 2017 (sponsored by Alzheimer Society of Ontario and promoted through Parkinson Canada’s networks).

Fighting for your right to genetic fairness

Parkinson Canada and its Ambassador Network were elated this past March, when Bill S 201, an act to prohibit and prevent genetic discrimination, was passed by the House of Commons. It has since also passed the Senate and is currently awaiting Royal Assent.

The excitement, however, has been dampened as the Justice Minister and Attorney General of Canada Jody Wilson-Raybould maintains the bill intrudes on provincial jurisdiction to regulate the insurance industry, which has fiercely opposed the bill. Only three provinces — Quebec, British Columbia and Manitoba — have expressed reservations about the bill, despite a letter from the federal justice minister inviting other provinces and territories to register their objections.

The legislation will prohibit any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services to, entering into or continuing a contract or agreement with, or offering specific conditions in a contract or agreement with, the individual. Exceptions are provided for health care practitioners and researchers. The enactment provides individuals with other protections related to genetic testing and test results.

Wilson-Raybould said the government will wait until the bill clears a final hurdle in the Senate before launching a reference to the Supreme Court for advice on the constitutionality of the genetic fairness act — a process that could leave the legislation in limbo for two or more years.

Parkinson Canada will continue to work closely with the Canadian Coalition for Genetic Fairness and our government champions until all Canadians living with Parkinson’s are ensured of genetic fairness.

Advocating for improved care

On World Parkinson Day, April 11, 2017, Parkinson Canada Ambassadors and delegates hosted a very successful Advocacy Day at Queen’s Park, Ontario’s Legislative Assembly. Almost 50 guests attended the breakfast presentation. Along with additional meetings, Parkinson Canada representatives connected directly with 40 MPPs in total or nearly 40 per cent of all MPPs.

In Ontario, Parkinson Canada is urging the government to do the following:

  1. Fund targeted physiotherapy and various forms of tailored exercise programs.
  2. Implement the “Get it on Time” program in hospitals and long-term care homes.
  3. Stop the inappropriate use of antipsychotic medications for people with Parkinson’s in long-term care homes.
  4. Enhance health care professionals’ understanding of Parkinson’s disease by promoting the use of the Canadian Guidelines on Parkinson’s Disease (due to be updated this fall.)

Read more about our Plan for Parkinson’s in Ontario here.

Coordinating Parkinson’s research across Canada

Earlier this month Parkinson Canada representatives and Ambassadors met with MPs and federal public servants during a “Hill Day.” Our discussions included our request for government support for a Canadian Parkinson Network (CPN). CPN will bring together Canada’s best in Parkinson’s research and will give them a platform to share information and make new connections.

The Network will include:

  • a patient registry with comprehensive clinical information;
  • a database with information from diagnostic (imaging tests, MRI, PET scans), anatomical (neuroimaging, sleep, behavioural and neuropsychological information) and functional measurements;
  • a biobank, i.e. patient biomaterials such as blood samples and DNA for genetic studies.

The Network will better coordinate world-class Parkinson’s research happening across Canada and would create transformational change for people with Parkinson’s and their caregivers to live well in their communities through effective use of health, social and economic resources.

As a leading member of Neurological Health Charities Canada (NHCC), Parkinson Canada also urged the federal government to support the NHCC’s call for a Canadian Action Plan for the Brain.

The Action Plan includes a focus on:

  • Equitable and affordable access to drug treatments;
  • Caregivers who are supported in their role through job protection and income enhancements;
  • Improved palliative and end-of-life care services;
  • Workplace supports and income security;
  • Stigma and barriers to inclusivity ensuring they are addressed through public awareness;
  • Increased funding in neuroscience research to better understand cause, prevention, management and cures.

For more information about Parkinson Canada’s recent proposals to the federal government, download this summary document (PDF).

Parkinson Canada, along with more than 100 dedicated volunteer Ambassadors and committee members, has been taking your concerns to elected officials and public servants across the country to improve your life with Parkinson’s. Many of those involved have Parkinson’s themselves and find that advocating for the Parkinson community helps improve their quality of life.

Consider joining the movement to live well with Parkinson’s and find out how you can become an Ambassador, participate in a letter-writing campaign, or make a donation to help us continue this important work.

Together, with one voice, we are making a difference!

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Dr. Andrew Lees to deliver the 13th Donald Calne Lecture

Dr. Andrew Lees
Dr. Andrew Lees

Parkinson Canada is pleased to announce that the 13th Donald Calne Lecture will be presented by Dr. Andrew Lees on Sunday, June 4, at 12:45 p.m. in conjunction with the 21st International Parkinson’s Disease and Movement Disorders Congress being held in Vancouver. His presentation will be suitable for both the public and the scientific community.

Dr. Lees is a professor of Neurology at the National Hospital for Neurology and Neurosurgery, Queen Square, London and University College London. In 2011 he was named as the world’s most highly cited Parkinson’s disease researcher with over 23,000 citations since 1985.

Dr. Lees was responsible for the introduction of the use of apomorphine to treat advanced complications of Parkinson’s disease including dyskinesias and complications of the use of levodopa. In 2006 Dr. Lees received the American Academy of Neurology Movement Disorders Life Time Achievement Award for his outstanding achievements in the field of Parkinson’s disease and other movement disorders. In 2012 he was awarded the Dingebauer Prize by the German Society of Neurology for his outstanding achievement in the field of Movement Disorders.

Be sure to save the date – advance registration and onsite check-in are required as seating is limited. The lecture will be held in Meeting Room 11, East Building, the Vancouver Convention Centre, 999 Canada Place in Vancouver.

Register online at: www.parkinson.ca/calne by May 26, or email Lee.nichols@parkinson.ca or call 1-800 565-3000, ext. 3378.

About the Donald Calne Lecture
Finding better ways to detect, diagnose, treat and ultimately, cure Parkinson’s requires cooperation from a global scientific community. The Donald Calne Lectureship, established in Canada in 2002, honours research that makes an impact on the world stage. Each year, the award celebrates a distinguished neuroscientist whose research is helping us learn more about how to understand, diagnose, and treat Parkinson’s. The recipient gives a speech, on the state of Parkinson’s research, to Canadian scientists, medical professionals, people with Parkinson’s and their families. To learn more about this event and past recipients, visit www.parkinson.ca.

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Leave a Legacy

Leave a Legacy

Did you know that May is officially Leave a Legacy month?

Leave a Legacy is a national, community-based public awareness campaign of the Canadian Association of Gift Planners (CAGP). This campaign encourages people to consider leaving a gift in their Will, or another type of planned giving vehicle, to a charity or cause that is meaningful to them.

Leaving a gift to Parkinson Canada in your Will is a simple and powerful way to be remembered. You have the ability to provide hope for people living with Parkinson’s and create a legacy that will last forever.

You and your family are invited to join us for a free webinar on Will planning at 1:30 p.m. on Wednesday, May 24, 2017, presented by Stephen Offenheim, B.A., L.L.B., of Plan Your Will, and Parkinson Canada. Stephen will provide a step-by-step guide of everything you need to consider before writing your Will. The webinar will begin promptly at 1:30 pm (EDT) and you will have the opportunity to ask questions during the 45-minute session.

Register now for our Preparing to Write Your Will webinar on Wednesday, May 24, 2017 at 1:30 p.m.

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200 years closer to unlocking Parkinson’s disease

Joyce Gordon, CEO, Parkinson Canada

A message from Joyce Gordon, CEO, Parkinson Canada

It’s been 200 years since English physician James Parkinson first described the brain disease named after him in An Essay on the Shaking Palsy. Since 1817, major advances have been made in Parkinson’s research, including the development of various drug and other therapies to treat disease symptoms. And yet we still do not know precisely what causes Parkinson’s disease, and there is no cure.

For the 200th anniversary of Dr. Parkinson’s essay, and in conjunction with World Parkinson’s Day on April 11, we are proud to join international Parkinson community to #UniteForParkinsons. This global campaign will increase awareness and show our support for those living with the disease.  It aims to inspire new research and treatment initiatives also.

Parkinson families and friends cannot wait another 200 years for a cure. We hear you loud and clear. Research into this complex and life-altering disease is exploding and we must keep up the momentum for a cure. We are proud of the contributions the researchers we fund through the Parkinson Canada Research Program are making every day. Each discovery is critical in that, no matter how small, it brings us closer to the breakthroughs we dream about. Take a moment to read about some of these projects.

Throughout April, Parkinson Awareness Month, Parkinson Canada staff and volunteers host additional fundraising, education and awareness events, reaching out to you and other Canadians living with Parkinson’s. We are in malls and community centres, libraries and church halls, in communities across Canada. While some of these events have already taken place, I encourage you to take a moment to visit the interactive map on our website for local event listings. There may still be activities in your town that you can attend.  And don’t forget to check out the schedule of virtual events, too.

Next week, April 23 to 29, is National Volunteer Week. On behalf of everyone at Parkinson Canada, as well as those we serve, I wish to express our extreme gratitude to each and every one of our hundreds of volunteers, many of whom are people living with Parkinson’s and their family members.  Often, support groups and awareness initiatives are organized and implemented by volunteers. Others participate in and help organize fundraising events, especially our largest fundraiser Parkinson SuperWalk. Some volunteers sell tulips and some work at information booths at health fairs and mall displays. Many volunteers undertake several of these different roles. More than 100 volunteers serve as Parkinson Ambassadors, advocating to governments for changes that meet the needs of the Parkinson community. You are our everyday heroes, and we thank you.

UniteForParkinsons logo
#UniteForParkinsons logo

We are also incredibly fortunate and grateful to receive the services of many highly qualified volunteer experts coast to coast. These individuals lend their time and expertise to shape our future and drive our mission forward. Please join me in acknowledging the contributions of members of our Medical Advisory Committee, Scientific Advisory Board, Research Policy Committee and our Board of Directors. With them, we are able to produce unique resources like the Canadian Guidelines on Parkinson’s Disease and invest in life-changing research to improve quality of life.

This April and beyond, no matter where your Parkinson’s journey leads you, we are a phone call, an email or a computer click away. You can find information, support and resources at www.parkinson.ca or by calling the Parkinson Canada Information and Referral Service at 1-800- 565-3000. I invite you to take the time to reach out and tell us how we have helped you, and how we can better serve your needs. Or simply send a message to communications@parkinson.ca and tell us how you’re living well with Parkinson’s. Thanks to the generosity of our donors, we are able to be here for you, as one united organization offering help and hope at every step along the way.

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Peering into the living brain

Christopher Phenix
Christopher Phenix

Diagnosing early Parkinson’s disease is a challenging process that relies largely on the clinical skills of neurologists who are familiar with the symptoms in other patients they have treated.  There is no biological test that can confirm early Parkinson’s – often, it is diagnosed late into its progression.

Researchers now know, however, that early in Parkinson’s onset, levels in the brain of a protein called GBA1 begin to drop significantly. The only way researchers have learned that, however, is by analyzing tissue samples from the brains of people with Parkinson’s disease who have died, or through experiments using human cells.

At the University of Saskatchewan, Christopher Phenix, an assistant professor of chemistry, has invented compounds that could be adapted into radioactive tracers that could attach to GBA1 in people. His goal is to allow researchers and clinicians to use Positron Emission Tomography (PET) to scan images of the brains of living people and study their levels of GBA1, which his tracer and chemical compound will make visible on an imaging scan.

“What we’re trying to do is develop a PET method where we can actually peer into the brain of a living person and study GBA1 activity or levels in real time,” Phenix says. He recently received a one-year, $45,000 pilot project grant from Parkinson Canada’s Research Program to pursue this research.

Not only would PET scans that reveal levels of GBA1 serve as a diagnostic aid for Parkinson’s disease, they could also be invaluable in measuring the effectiveness of drugs designed to increase the activity of the protein. Phenix’s compounds could produce a non-invasive test to see if the drugs are working, and could also help select patients with low GBA1 as good candidates for drug trials.

Being able to understand the underlying structures of Parkinson’s disease and how it progresses before most of the dopamine-producing brain cells have died, will also be critical once other researchers develop a therapy to stop the disease’s advancement.

For Phenix, this research is personal. His grandmother Lucille Sosiak had Parkinson’s disease.

“It’s a pretty devastating disease, so when you have a personal connection to it, it really helps you stay focused on your research and your goal to help people with Parkinson’s disease,” Phenix says.

Read about other researchers recently funded by the Parkinson Canada Research Program by visiting the research section of www.parkinson.ca.

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