Share your creativity through Parkinson Canada

The Hope on Display Calendar is a wonderful opportunity to showcase your creativity through artistic expression. Parkinson Canada invites individuals living with Parkinson’s to submit their artwork for consideration for our Hope on Display Calendar, inspiring hope for others.

If you are a visual artist of any kind (painter, photographer, jewelry maker, quilter, woodworker, sculptor, etc.), and you would like to be considered for the 2018 calendar, please send an email to Diane at diane.newmanreed@parkinson.ca before August 8, 2017. Tell us about yourself and include a high-resolution image of your creation.

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Education Update: New book available and thanks for your input

New book available

Parkinson Canada is very pleased to be able to offer you Parkinson’s Disease: An Introductory Guide, a new book developed by Dr. Ron Postuma and Dr. Julius Anang in collaboration with McGill University Health Centre. You can read and download the PDF of the book here.

Joyce Gordon, Dr. Ron Postuma, Julie Wysocki

This guide will help you better understand Parkinson’s disease. It describes the illness, changes in your body over time, treatment and care options, and possible health problems. There are also quick tips, including information about when and where you can find more help.

As a practical introduction to Parkinson’s disease, it is meant to help you learn about:

  • Symptoms of Parkinson’s and how you can spot them
  • Treatment and care options
  • Tips and strategies for you to take charge of your health
  • Possible problems to watch out for
  • When and where you can find more help.

It’s an excellent resource to review with your family and to bring to appointments with your health care team. You can also obtain a print copy of this comprehensive book by contacting Parkinson Canada at 1(800) 565-3000 or by email at education@parkinson.ca. (Quantities are limited.)

Educate PD project survey summary

Our sincere thanks go out to the 881 individuals who completed a recent survey for the Educate PD project, supported by Parkinson Canada. Respondents shared their thoughts on the sorts of issues relating to Parkinson’s disease that they need help understanding and explaining. Valuable insight from 450 people living with Parkinson’s, 335 caregivers and 96 health care professionals were compiled and analyzed.

Educate PD project investigators Dr. Sean Udow and Dr. Connie Marras find that: “In our clinical experience, people living with Parkinson’s and their care partners often have trouble understanding various aspects of PD. This understanding may be restricted by the complexities of PD itself and the ability of a health care professional to explain the complexities.”

Educate PD is a project aimed at designing a visual educational tool to help explain and understand Parkinson’s disease. This survey was a critical step in determining what issues the visual aid should address.

The Educate PD questionnaire was designed through a collaborative process between seven clinicians from four Canadian institutions, each with expertise in PD. The investigators categorized PD issues into seven main areas: basic science, diagnosis, motor symptoms, non-motor symptoms, cognitive symptoms, treatment and prognosis. The survey asked people living with Parkinson’s and caregivers to rate how well they understand and how satisfied they were with explanations of each of these areas. The survey asked health care professionals to report how often they encounter patients who have trouble understanding these areas, and how likely they are to use a visual aid to explain these issues.

Results of the survey indicate that the majority of people with Parkinson’s and their care partners do not think they fully understand most issues in PD and are not very satisfied with how their health care providers explain these issues. Similarly, the majority of health care professionals think it’s important for patients to understand PD and the majority would use a visual tool to discuss PD if one was made available.

The main areas of PD identified as poorly understood and poorly explained by all groups included cognitive issues and non-motor symptoms. Treatment, prognosis and basic science were also identified as important, though not as strongly. This study therefore recommends a heavier focus on these areas when designing a visual tool to help discuss Parkinson’s disease.

There was a general lack of understanding and low satisfaction in the explanation of all areas of PD. Overall, the results of this survey support the need to develop a visual tool to help discuss PD. Drs. Udow and Marras plan to use the results of this survey to focus on the content areas identified as the most important to understand and currently the least satisfactorily explained. Since there was a general lack of understanding and low satisfaction in all areas, the investigators will also try to be comprehensive in the creation of this educational tool.

Drs. Udow and Marras expressed their appreciation to all those who responded to the survey.  Parkinson Canada will keep you informed about the development of the Educate PD tool for health care professionals to use with people living with Parkinson’s and their caregivers.

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Chasing the culprit in Parkinson’s disease

Joel Watts
Joel Watts

When Joel Watts was 10 years old, his father died of Creutzfeldt-Jakob Disease (CJD), a rare brain disorder caused by the strange behaviour of a class of proteins called prions. These agents later became notorious as the cause of the now infamous brain-wasting condition dubbed “mad cow disease.”

But Watts, whose father died in the early 1990s, did not connect his father’s loss to any specific neurodegenerative disorder until much later, when he was studying at university. Today, the biochemistry professor at the University of Toronto is on the cutting edge of investigating the similarities between prions and the way other proteins spread through the brain and compromise its functions.

“What I’m trying to do is take something that is known about prion disease and apply it to Parkinson’s research,” Watts says. This research is being funded by a two-year, $90,000, Pedaling for Parkinson’s New Investigator Award from the Parkinson Canada Research Program.

Instead of prions, he studies a protein called α-synuclein, which is directly involved in the development of Parkinson’s. The comparison with prions lies in the way accumulations or clumps of α-synuclein spread throughout the brain.

“This aggregate might start in one cell and then somehow get out of that cell and make its way into a neighbouring cell,” says Watts. “These little pieces of aggregated protein can then start the process in the next cell.”

Just as the mis-folded arrangement of prions damages brain cells, so too does the shape of α-synuclein affect brain cells and contribute to Parkinson’s disease. Watts is categorizing these various shapes and their role in the development of this disorder. His ultimate goal is to shed light on mechanisms that a new therapy could target.

Watts emphasizes that the infectious diseases prions cause, such as CJD, are entirely distinct from brain disorders like Alzheimer’s or Parkinson’s, which have never been identified as contagious or communicable. Nevertheless, Watts remains eager to build on the body of knowledge that surrounds prions, which he believes will lead to fresh insights about Parkinson’s.

“With prions, the protein exists on the outside of the cell so it’s very easy for it to touch another cell,” he says. “Whereas α-synuclein is inside the cell, so how does it get out of one cell and get into another cell? That’s one of the hottest areas of research right now.”

This spring, Watts presented an update on his research to the Parkinson community in Parry Sound, Ontario, where the Pedaling for Parkinson’s event is held each summer. Previous Parkinson Canada funded researchers will ride alongside other riders on July 14 to 16, as part of the seventh annual Pedaling for Parkinson’s event. Join them at pedalingforparkinsons.ca.

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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Save the date: The Victory Summit® is coming to Toronto

Parkinson Canada is excited to partner with the Davis Phinney Foundation to bring The Victory Summit® educational event for people living with Parkinson’s to Toronto, Canada. Thanks to generous sponsors and local donors, this event is offered free of charge with complimentary lunch served.

Mark your calendar now for Saturday, October 14, 2017 at the Toronto Congress Centre, 650 Dixon Road.

Advance registration is required and opens in mid-July 2017. Visit www.parkinson.ca closer to that time and check your email inbox for registration details.

Join the Davis Phinney Foundation, Parkinson Canada and other organizations from the Parkinson’s community for a day of information and inspiration. Featuring researchers, clinicians and  physical therapists  in the field of movement disorders, The Victory Summit® event provides essential tools and resources that people with Parkinson’s can use to live well today.

The Toronto event will include an exhibit hall with complementary therapies, local resources and national organizations. The breakout sessions include:

  • Living Well with Parkinson’s
  • Exercise and Movement
  • Cognition and Non-motor Symptoms

Read more in this promotional flyer. Also, take note that the next Victory Summit® in Canada will be held in Winnipeg, Manitoba on April 7, 2018.

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Yvonne Morgan tells it like it is about her life with Parkinson’s

Yvonne Morgan, back, centre, surrounded by her four children. Sandra is left, front.
Yvonne Morgan, back, centre, surrounded by her four children. Sandra is left, front.

Yvonne Morgan was already familiar with tragedy when she was diagnosed with Parkinson’s disease at the age of 52, a decade ago. Her first husband died of a brain tumour at 38, leaving her with four children aged 10 to 17 to raise on her own in the village of Addison, just outside of Brockville, Ontario. While it was a struggle, Yvonne had plenty of family in the area to lend a hand and “the kids were great,” she says. She was also fortunate to meet her second husband David and remarry in 2001. Between them, they have eight children and 11 grandchildren.

When Yvonne was diagnosed, she was a working as an administrative assistant at the Brockville Psychiatric Hospital. She also had previous experience working with homecare and long-term care patients. “I knew what Parkinson’s could do to you,” she says. She’d also watched her sister Irene cope with her own Parkinson’s diagnosis 10 years earlier.

Yvonne first connected with Parkinson Canada by participating in an exercise class. She later joined the Brockville support group and has taken part in their local Parkinson SuperWalk. “The support group is a great way to connect with others in a similar situation. Sometimes David will even attend alone, when I can’t make it,” says Yvonne. The members meet up with one another outside of meetings too. “And SuperWalk has bonded us all even more. It is a chance to meet the families of our group members.”

Read on as Yvonne shares her own personal account about living with Parkinson’s; following Yvonne’s reflection, her daughter Sandra Villeneuve tells the story through her eyes over the years.

What it is like to live with Parkinson’s

When I was first diagnosed, I didn’t think why me? I thought why not me? My sister Irene had been living with Parkinson’s disease for years and kept such a positive attitude towards life. Couldn’t I do the same? Parkinson’s disease hits every one differently. Irene had trouble with gait freezing, not being able to move. I noticed my handwriting was small and although I had always been a fast, accurate typist, I was getting many red lines on-screen showing I was making mistakes. How could this be? I realized my one hand was typing faster than the other and everything was out of sequence. I also became so tired I could hardly stay awake in the afternoon at work. People started to notice. It was a fatigue like I had never experienced before. I saw a marked difference in my lack of expression and I had a slight tremor in my jaw.

My family doctor diagnosed me with Parkinson’s disease, but made me an appointment with a neurologist Dr. David Grimes in Ottawa to confirm the diagnosis. He is a wonderful doctor, very thorough and caring too!

Parkinson’s is so much more than having a shake or tremor or even so much more than a shuffling gait. Parkinson’s robs you of the person that you are and the person that you could have been. Every day you notice new things: numbness in the left foot, more dystonia, leg cramps and spasms. Painful to say the least. You may notice your eyes are blurry. You have dreams so vivid you sometimes act them out by kicking, screaming, pushing or jumping out of bed in fear that you are being chased by wolves or snakes, etc. You may have trouble with constipation, or trouble completely emptying your bladder, or experience frequency or sudden incontinence.

Some other symptoms you may experience are depression, anxiety, lack of concentration, onset of Dementia, small cramped handwriting (micrographia), lack of facial expression, the list goes on and on.

The person you had planned to be when you retired is no longer there. Instead there is this person who has to function on a three-hour medication schedule with slowdown periods half an hour before your next pill time, and then another half-hour wait until you are at your maximum level again. You feel like a little old lady with increased poor posture and your neck protruding several inches before the rest of you. It isn’t easy, but then neither is any disease. You feel embarrassment when you meet someone you haven’t seen in a while. They really notice a decline in your health. You want to scream out: “I don’t need your pity. I don’t want your sympathy. I am still alive here in this body.” Although it may seem my body is playing a horrible trick on me, this is still me! I am only 62 years old. I have at least a quarter of my life time to live out yet.

Thankfully there is medication, Levadopa being the gold standard. It gives you your life back for a while, but then it is known to sometimes turn on you. It stops helping, or it gives you nasty side effects like dyskinesia.

All in all, it is not a pleasant thing to have Parkinson’s disease. Now I find myself occasionally saying: “I wonder what the future holds for me.” None of us know. A person could be involved in an accident or develop terminal cancer. I am thankful I have an understanding of my disease and I have heard it said many times: “You don’t die from Parkinson’s, you die with Parkinson’s.”

We have a terrific support group in Brockville. It is a great help to me. I look back in my life and remember those I knew who had Parkinson’s. There were many of them, from all walks of life. I have found the best way to deal with this disease is to do what you can on your good days; take mid-day naps when you feel fatigued; be grateful for the things you can do and try to focus on others instead of yourself and your issues. My faith in God, and knowing I am never alone in my walk through this journey, keeps me going. I am so thankful for my husband David, and my family, for their support.

A special thanks to the facilitators of our Parkinson Canada Brockville support group, Maria Millward and Robin McMillan and to the Community and Primary Health Care centre for the space for our meetings. You are amazing people! Your dedication to our group is really appreciated.

A tribute from Yvonne’s daughter Sandra Villeneuve

When we asked Yvonne’s eldest daughter Sandra Villeneuve for her thoughts on the impact of Parkinson’s on her mother’s life and on the family, and about their plans for Mother’s Day, she sent us this lovely tribute. With Mother’s Day still fresh in our hearts, we thought it fitting to share what she submitted to us.

How Parkinson’s has touched our family?

We grew up watching our mom take on many life challenges – living in the country meant lots of hard work, being a widowed mom of four kids and teens, we saw her go back to school and even move to a new province to pursue more career opportunities.

She has always been strong, funny and above all, very giving to her family and friends and community. So in a way, her Parkinson’s diagnosis was just another one of those challenges that she faced bravely. Where many people diagnosed at a younger age might avoid other people more advanced in the disease, not wanting to associate themselves with people aged by their physical symptoms, one of the first things she did was find a support group and ask for advice. The words of wisdom she took away sum up how she lives her life now – do as much as you can, while you can. Move to the Philippines for a year? Better now than never! She has done lots of travelling, but also uses her time generously to help family and everyone around her. Visiting seniors in a nursing home, babysitting grandchildren, helping us in all our big moves, and volunteering with her church community.

It is hard sometimes to accept her limitations, and I know that even though her kids are now all adults, she still tries to protect us sometimes, scheduling her meds to be at her best for our family gatherings, trying not to complain about the awkward and frustrating symptoms and side effects. But she is open about her struggles; I’m glad she can talk about it with me. There are so many random, weird symptoms to deal with – all the shoes she passes on to my sister and I, trying to find shoes that are comfortable and secure with shuffling and foot cramping. The frustration of seeing peoples’ reactions to her changed facial expressions, or their lack of understanding for the invisible symptom of fatigue.

This Mother’s Day will probably be our usual get together at their house, maybe a BBQ with lots of food and grandchildren everywhere. There will be gifts of flowers for her garden and flowerbeds that she still enjoys working on. It’s a time to celebrate her, my sister and sisters-in-law, who are also moms, and all the great qualities that we associate with moms, that she lives out so well – love, generosity and self-sacrifice, with a big helping of laughter and appreciation for beauty in the everyday. I aspire to be more like her every year, living life to the fullest, doing all you can while you can, appreciating my health and giving back to my family and community like her.

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