Survey reveals gaps in health services available for people with Parkinson’s

Impact on caregivers and health professionals increases as disease progresses

Ipsos survey imageParkinson Canada, the definitive voice of the Parkinson community in Canada for over 50 years, recently conducted a survey through Ipsos Public Affairs, to better understand the challenges faced by three stakeholder groups:

  • Individuals diagnosed with Parkinson’s disease
  • Those who personally provide care to someone living with Parkinson’s
  • Health care providers and those who work with people with Parkinson’s or with care partners.

Findings confirm what Canadians living with Parkinson’s along with their caregivers and health care providers have faced for some time. Access to specialized Parkinson’s care is often not available in a timely fashion. Other health services that improve the quality of life for both patients and caregivers can be limited.

“People with Parkinson’s often suffer from complex physical and non-motor health disorders, which can affect the whole family. We know that caregivers are heavily burdened, financially and emotionally. Our mission is to help close the gap for them and build awareness of Parkinson’s disease,” says Joyce Gordon, CEO of Parkinson Canada.

Survey Highlights

  • Limited access and long wait times: 2 out of 10 waited more than one year for a diagnosis; 3 in 5 came to Parkinson Canada or one of its support groups, for additional information.
  • Caregivers are burdened: more than 1 in 4 caregivers have full-time jobs while taking care of a loved one; 4 in 5 are married or living with their partner.
  • Mental health: 4 in 10 people surveyed with Parkinson’s report experiencing depression, anxiety, stress, and loss of confidence.
  • Financial burden: 4 in 10 agree that it is difficult to pay for health care bills relating to Parkinson’s disease, like medication, exercise, physiotherapy, and specialized services such as speech therapy.

“It’s important that individuals receive a correct diagnosis as early as possible and have adequate access to ongoing specialized care. Even this care is limited and follow-up visits are too far apart,” adds Dr. David Grimes, lead author of the Canadian Guidelines on Parkinson’s Disease and Head, Division of Neurology, The Ottawa Hospital. “If the survey shows that Canadians are experiencing considerable gaps and delays to care, this hinders health care professionals from effectively recommending treatments and lifestyle changes that would help patients better manage the disease.”

This month is Parkinson Awareness Month and we share the results with governments and other stakeholders, in order to raise awareness of these gaps in care.  The organization continues to advocate for improved access and reduced wait times. The organization will further share these results with the general public and donors, to seek more support.

Additional investment is needed for exceptional research, to provide programs and services for people living with Parkinson’s, and to provide educational opportunities and resources for health care professionals.

With more than 25 people newly diagnosed each day in Canada, the demand for Parkinson Canada services and those of the health care system are increasing dramatically. It is critical that new investments are made now to expand services that ensure those living with Parkinson’s and their families, can live their best life possible. And research efforts must continue to increase our knowledge, improve treatments, and ultimately find a cure for this devastating disease.

To view the entire press release, et pour de plus amples informations en français, click here.

To view a summary of the survey, visit https://www.ipsos.com/en-ca/news-polls/Parkinson-Canada-stakeholder-survey-2018

To read recent coverage from Global News Online, click here

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Pedaling for Parkinson’s and Hope

July 13th-15th, 2018 in Parry Sound, ON

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David Newall and Peter Istvan
Founders of Pedaling for Parkinson’s

When the duo started the ride in 2011, Peter and David said the hope was to raise $100,000 and never did they expect to reach a cumulative total of over $1 million. This gave Pedaling for Parkinson’s the distinction of being the first community fundraising event in Canada to raise more than $1 million for Parkinson Canada.

In 2011, friends Peter Istvan and David Newall founded Pedaling for Parkinson’s – an annual cycling fundraising event in support of Parkinson Canada. Pedaling for Parkinson’s spans three days, and cyclists pedal over 100,000 strokes, representing one for each Canadian living with Parkinson’s.

In 2017, Peter and David’s event reached a significant lifetime milestone. Together with riders, volunteers, and sponsors, Pedaling for Parkinson’s surpassed over $1,000,000 dollars raised.

No small feat for a passion project inspired mostly by a close friend of Peter along with David’s father, both of whom were living with Parkinson’s disease. These pedaling heroes, supported by their families and what feels like a community’s worth of volunteers, have helped to fund innovative research projects by some of the brightest minds in Canadian Parkinson’s disease research, through the Parkinson Canada Research Program.

National Volunteer Week promoTo date, they’ve raised funds to support twelve research projects within the Research Program. Projects like those of Dr. Joel Watts, who is a recipient of a Pedaling for Parkinson’s New Investigator Award. Dr. Watts is investigating how specific prion proteins may spread through the brain and he is applying this knowledge to identify the underlying molecular processes of Parkinson’s disease. His work could lead to new therapeutic targets for stopping the spread of Parkinson’s disease. Click here to watch a video message from Dr. Watts on our YouTube channel.

The founders have set out to achieve a lofty goal for the ride in 2018: $500,000. Individual riders and sponsors will be key to keeping this legacy alive, long after this summer’s ride, the last for the Parry Sound location.  Find out more and register online today.


Parkinson Canada offers a wide range of materials to help individuals, families and health professionals learn about Parkinson’s disease. Operating since 1965, Parkinson Canada provides support services and education to the Parkinson’s community, and advocates on issues that concern Parkinson’s patients in Canada.

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Predicting the risk of Parkinson’s disease

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Dr. Michael Schlossmacher

The idea of creating a mathematical model to predict who will develop Parkinson’s disease struck Dr. Michael Schlossmacher as he read Brilliant Blunders, a book about the significance of the mistakes five great scientists made.

“The book is about understanding how errors are made, in part by quantifying risks,” says Schlossmacher, a neurologist and professor at the University of Ottawa. “That made me think of other things we have already quantified and calculated in life … and I became intrigued by whether we could do that for Parkinson’s risk.”

Schlossmacher is convinced that by entering known risk factors for Parkinson’s into his model, it is indeed possible to predict who will get the disease.

Researchers already know that age, chronic constipation, a reduced sense of smell, family history, chronic inflammation such as hepatitis or certain types of gastritis, certain environmental exposures, chronic infections, and gender are all risk factors. Men, for example, are 1.5-2 times more likely than women to develop Parkinson’s.

Schlossmacher and his colleagues, including Dr. Tiago Mestre and Dr. Doug Manuel, are combing through databases that include case files and histories of people doctors have followed over time. By entering data points they collect from those files into the model, and then comparing that to a subsequent diagnosis, they’ll test the accuracy of their predictive scores.

If the predictive model works, doctors could then work with people who have high scores to modify some of the risk factors, and potentially delay or avoid developing Parkinson’s altogether.

“We could then tell people – you have to fix your constipation – or you have to treat your chronic sinusitis more aggressively,” Schlossmacher says.

In the future, if researchers develop medicines or other interventions that could slow down Parkinson’s progression or remove other risk factors, then it will be important to know who is most at risk in order to target them for the interventions, he adds.

National Volunteer Week promoRevising his model until he gets it right is one of the tasks Schlossmacher has set himself, just as the scientists portrayed in Brilliant Blunders did.

“That’s part of the scientific journey, to have an idea, to test it, and then to revise it,” he says.

Although Schlossmacher did his initial scientific training by studying Alzheimer’s disease, he moved to Parkinson’s research because he wanted to help speed up the progress into discovering causative genes and understanding the molecular mechanisms that produce it.

Later, he learned that his grandfather and his aunt died of Parkinson’s and dementia, and a cousin has the early-onset form of the illness. He’ll factor those different forms of Parkinson’s into his predictive modelling, convinced of its practical application.

“It’s not only a mind exercise, it’s a very doable project,” Schlossmacher 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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Shortening the path to a successful treatment

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Alexandre Boutet

For many people with Parkinson’s disease who undergo deep brain stimulation, the treatment can appear nothing short of miraculous. The procedure involves surgically implanting a transmitter within the brain, to allow the application of electrical impulses that reduce or eliminate tremors and restore motor control.

Achieving good results, though, calls for a great deal of fine-tuning. Alexandre Boutet, who is currently completing his doctorate in neuroscience at the University of Toronto, has seen some individuals take as long as a year to adjust to the implant. That’s because it needs to be tuned to emit just the right amount of electricity to achieve the desired result in a patient’s brain. For people who often travel across the country to gain access to this specialized treatment, the challenge is frustrating and expensive

“The post-op period is often not as easy as patients hope it will be, because of all those logistical issues,” he explains.

Boutet is addressing this problem with another powerful technology, the imaging system known as functional magnetic resonance imaging (fMRI). This specialized MRI technique allows a strong magnetic field to compose a useful picture of blood flow, which also reveals those brain cells that are activated at any given moment. Depending on the type of stimulus — such as when an individual is reading, speaking, or listening to music — different parts of the brain “light up” accordingly in an fMRI image.

National Volunteer Week promoThis same strategy makes it possible to map out which parts of the brain DBS will activate as the DBS is turned on. If doctors could identify the optimal settings for the device with an MRI after surgery, it could reduce a patient’s adjustment period – maybe even to a single day.

“If we can cut down that first year to a one-day MRI, that would be great,” Boutet says.

The imaging technique also provides patients with highly accessible images so they can see exactly how DBS will help them.  “It’s very intuitive to understand,” he says.

Boutet also believes fMRI, combined with DBS, will have the potential to treat mental illness, the field where his research began. His original interest in the use of DBS for mental ailments drew him into the study of Parkinson’s disease, which is in fact the most common reason for the use of this technology. He finds it satisfying that the innovation he is exploring could benefit patients facing all these different types of problems.

“The whole goal of this research is very patient-oriented,” he says.  “It’s to make their lives much better.”

Boutet’s project is possible thanks to a two-year $30,000 Porridge for Parkinson’s (Toronto) Graduate Student Award in Honour of Isabel M. Cerny. 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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April is Parkinson Awareness Month

This April, we are heading into communities near you, to raise awareness and share information about living well with Parkinson’s disease.  We invite people living with Parkinson’s, care partners, and health care professionals to join us in spreading the word.

4-6 April 2018 – Vancouver, BC
Parkinson Canada joins The Parkinson’s Foundation and the Movement Disorders Society in Vancouver, BC at the Allied Team Training for Parkinson’s™ (ATTP) for health professionals.  Find out more online.

7 April 2018 – Winnipeg, MB
Join Parkinson Canada and other Parkinson organizations at the Davis Phinney Victory Summit® in Winnipeg.  Advance registration online.

10 April 2018 – Dorval, QC
Join Parkinson Canada and The Cummings Centre for an afternoon of learning about The Parkinson’s Bladder and Bowel, with experts on the subject – Dr. Lysanne Campeau, Urologist and Dominique Longpré, Dietician.  $10 at the door with advanced registration required at infoQc@parkinson.ca or 514-734-1819.

11 April 2018 – World Parkinson Day
Happy Birthday to Dr. James Parkinson. Follow us on Facebook and Twitter. Together, we will #UniteforParkinson’s. Help spread the word online.

24 April 2018– Ottawa, ON
Parkinson Canada is heading to Parliament Hill. Want to be a Parkinson’s Ambassador? Find out more and register online today.

26 April 2018 – Lanark North Leeds, ON
Parkinson’s Education Event: Two sessions per location – session will be broadcast to selected Ontario Telemedicine Network (OTN) sites. General public session begins at 10:00am. Health professional session begins at noon. Register online today as seating is limited.

27-28 April 2018 – Saskatoon, SK
Inspired Movement – our 2018 Education Conference in Saskatoon, featuring dance, exercise, and yoga is designed to get you moving and keep you moving.  Find out more and register online today.

And don’t forget to support Hope In Bloom tulip campaigns in your community, or send a virtual greeting at: http://donate.parkinson.ca/april.

Our mission is to transform the lives of People Living with Parkinson’s. We do this through: research leading to the end of Parkinson’s; advocacy bringing the voices of Parkinson’s to the forefront; support helping people living with Parkinson’s live well through programs and education.

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