Message from the Editor

Marina Joseph

Marina Joseph

It’s been a busy fall at Parkinson Society Canada and we’ve got a packed issue for you with news on the latest education resources, research funding and advocacy initiatives, as well as tips on eating well, recognition of our national volunteer award recipients and an inspiring story on keeping active – the equine way.

Parkinson Society Canada’s first online learning module for family physicians was recently accredited by the College of Family Physicians of Canada. The program is available at no cost charge and we encourage you to pass along the information to the members of your health care team.

And for all the days between visits to your doctor, we’ve got some great tips on eating well with Parkinson’s disease, including what to eat to help alleviate certain symptoms, like constipation.

On the research front at Laval University, neuro-biologist Francesca Cicchetti is investigating the way damaged alpha-synuclein travels from cell to cell, spreading Parkinson’s disease, with funding from Parkinson Society Canada’s National Research Program. This is the first in a series of profiles of the 2014-2016 funded researchers.

PSC is working in a number of areas to achieve positive change for people living with Parkinson’s disease, including those with dementia. We’ve participated in recent initiatives to raise awareness among parliamentarians, global policy makers and the general public about the complex impact of dementia on the Parkinson’s community. Lend your voice and consider becoming a Parkinson’s Ambassador in your riding as we prepare for the 2015 federal election.

Advocating for policy change is just one way our volunteers across the country make a difference. Read about how our National Volunteer Award recipients have improved life, increased awareness and raised funds for the Parkinson’s community.

We invite you to inspire other eParkinsonPost readers and share your personal story. In this issue, Natasha McCarthy, a 37-year-old mother of two young daughters, relates her journey with young onset Parkinson’s disease and her joyous re-connection with horses, the health benefits of riding.

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.  Happy holidays and we will connect once again in 2015.

Tips for healthy eating and to alleviate symptoms of Parkinson’s

  1. 2014_11_27_04_nutritionEat a balanced diet. Read Canada’s Food Guide and select foods from each of the four food groups each day, including vegetables and fruits, whole grains, milk and milk alternatives and meat and meat alternatives. Using the Food Guide as your base, you’ll be well on the way to making sure your body gets the nutrients it needs. The Guide will also tell you about the number of servings required and serving sizes and provides additional information on a healthy diet.
  2. Enjoy your food. Eat the foods you love in the company of family and friends. Take your time eating and limit distractions. Take small bites and clear your mouth fully before taking the next mouthful. Try to schedule your meals for when you have some energy. Your sense of smell, and likewise taste, may be reduced; so tempt your appetite by using more herbs, spices, condiments and sauces.   
  3. Try to eat at least seven vegetables or fruits a day. Choose brightly coloured vegetables and fruits; they contain the most nutrients and anti-oxidants. Purchase them fresh, frozen or canned and eat them raw, cooked, cut up, mashed, pureed or juiced – anyway you like them.
  4. Stay hydrated. Drink plenty of fluids. Aim for six to eight glasses of fluids each day. Alcohol and caffeine are fine in moderation (one alcoholic drink and two cups of coffee per day), but can be dehydrating in greater quantities. Check with your doctor about any further restrictions for alcohol or caffeine consumption in terms of other conditions and medications. Limit fluid intake in the hours before bed to reduce trips to the bathroom at night.
  5. To ease constipation. Eat a diet rich in fibre. Legumes (peas, beans and lentils), other vegetables, fruits and whole grains are all good sources of fibre. But you also need more fluids, especially water, if they are going to help you relieve constipation. Take note that legumes are also high in protein and can interfere with levodopa absorption if taken at the same time (see #7.) Increase fibre and fluid consumption gradually. Additional information on relieving constipation, a common symptom of Parkinson’s disease, is available on Parkinson Society Canada’s website.
  6. To relieve nausea. Some people may experience nausea when they start taking a new medication. Try eating your food cold, or at room temperature. Hot foods have more odours. Try taking your medications with a small snack, like some ginger ale, fruit and soda crackers, if permitted. Eventually, it is best to take levodopa 30 minutes before eating or two hours afterwards (see #7.)
  7. Maximize the effectiveness of levodopa by timing your protein consumption. Protein and levodopa compete for absorption. If taken together, protein always wins. For most people, taking levodopa at least 30 minutes before eating, or two hours afterwards, allows for optimum effectiveness of the medication.  For a few others, usually those who take medication every two or three hours, a protein re-distribution diet, in which most protein is consumed late in the day, may improve the effectiveness of levodopa. This type of diet requires some education and it is best to consult with your physician and/or a dietitian for advice and assistance. You can find more information on this diet on the Live Well with Parkinson’s website.
  8. Maintain your weight. Weight loss occurs in up to 70 per cent of people living with Parkinson’s, most often in the later stages of the disease. Many of the symptoms of Parkinson’s (tremors, constipation, reduced sense of smell, depression, trouble preparing, chewing and swallowing food, etc.) may contribute to weight loss. Try having more frequent meals and snacks and more higher-calorie foods.
    • Some people with Parkinson’s may be overweight and this can adversely affect mobility and cause other health concerns. Try to stabilize your weight by eating nutritious meals, controlling portions and being as active as possible.
    • Compulsive eating (binge eating) can be a side effect of particular Parkinson medications . If you are experiencing this behaviour, tell your neurologist or doctor. Your medication can be adjusted to reduce or control the behaviour.
  9. Drooling, chewing and swallowing issues. Drooling is a common symptom of Parkinson’s. This is not the result of more saliva, but less frequent mouth movements and swallowing. Chewing gum or sucking on hard candy may help, reminding you to swallow.  There are drug treatments available, including atropine and botulinum neurotoxin (Botox). If chewing and swallowing become a problem, discuss it with your physician. You may be referred to a speech language pathologist for a swallowing assessment and to recommend strategies for your chewing and swallowing (dysphagia) issues.
  10. Ask for help. Consider a consultation with a dietitian for an eating plan and strategies. Ask family members for the assistance you need in preparing food, from shopping and cooking to cutting and pouring at the table. Consider prepared foods or cook foods in larger quantities when you have the time and energy and freeze in smaller batches to reheat later.  For more detailed information, visit the Living with Parkinson’s section of the Parkinson.ca website and read the Guide to the Non-Motor Symptoms of Parkinson’s Disease.

Health care professionals looking for more information about the Canadian Guidelines on Parkinson’s Disease and related topics, can contact Grace Ferrari, National Manager, Professional and Public Education at Parkinson Society Canada.

The tiny bubbles that may spread Parkinson’s disease

Neuro-biologist Francesca Cicchetti is investigating the way damaged alpha-synuclein travels from cell to cell, spreading Parkinson's disease.

Neuro-biologist Francesca Cicchetti is investigating the way damaged alpha-synuclein travels from cell to cell, spreading Parkinson’s disease.

Research into the causes of Parkinson’s disease has increasingly begun to focus on damaged forms of a protein called alpha-synuclein that can form clumps in dopamine-producing brain cells and kill those cells, which are a critical part of motor control.

At Laval University, neuro-biologist Francesca Cicchetti is investigating the way damaged alpha-synuclein travels from cell to cell, spreading Parkinson’s disease, with funding from Parkinson Society Canada’s National Research Program. Her investigations are centred around tiny little bubbles, called microvesicles, that can extract themselves from cells. Many researchers already believe that Parkinson’s begins long before people start to experience problems with stiffness, tremors or balance – and those problems may originate outside the brain.

Microvesicles can travel long distances and may be carrying the toxic alpha-synuclein protein and spreading it to dopamine-producing brain cells. Cicchetti and her colleagues will examine the differences in microvesicles in the blood of people with Parkinson’s disease, compared to the microvesicles in samples from people without Parkinson’s. If they discover differences, such as larger numbers of microvesicles, that information would be a biomarker that could form the basis of an early diagnostic test for the disease. Discovering that microvesicles are responsible for spreading alpha-synuclein would also give researchers who develop drugs a new target for a medication or therapy that could stop the spread of the disease.

“This is a new avenue that has not really been explored ­- to think that tiny entities originating from blood cells have the capacity to carry these larger proteins and contribute to the spread of the disease,” says Cicchetti.

Cicchetti, who is also involved in research into Huntington’s disease, is encouraged by the amount of collaborative research occurring in various fields. That collaboration is sparking new ideas and new approaches to finding causes, diagnostic tests and potential treatment targets. In the 12 years that she has been working on these diseases, Cicchetti has seen major progress in researchers’ growing understanding of the basic molecular mechanisms that result in these illnesses.

“Grouping various disciplines and encouraging collaborations between fields has really changed the landscape of our research,” she says. “I am very hopeful that progress will be made even faster.”

Parkinson Society Canada is bringing research to life on its website at www.parkinson.ca.  Be sure to check out the updated research section where you can read about the National Research Program and 28 other newly funded researchers. Check back for new stories, profiles and upcoming research events as content will be added regularly.

Getting the Parkinson’s voice included in dementia initiatives

Minister of Health Rona Ambrose speaks at the Canada-France Global Dementia Legacy Event.

Minister of Health Rona Ambrose speaks at the Canada-France Global Dementia Legacy Event.

Parkinson Society Canada is working diligently to achieve positive change for people living with Parkinson’s disease, as well as dementia. Up to 70 per cent of people with Parkinson’s disease will develop some form of cognitive impairment or dementia in their lifetime. The following are some of our recent initiatives to raise awareness among parliamentarians, global policy makers and the general public of the complex impact of dementia on the Parkinson’s community.

Café Scientifique

The Canadian Institutes of Health Research, in collaboration with Alzheimer Society of Canada and Parkinson Society Canada, hosted a Café Scientifique on September 4, 2014 in Ottawa for a public discussion on dementia. Patricia Doucette, caregiver to her husband Dennis with Parkinson’s and dementia, was part of the expert panel sharing insights and first-hand experience about life with dementia.

G7 meeting on dementia

Joyce Gordon, President & CEO, was joined by Parkinson’s researchers Drs. Susan Fox and Oury Monchi at the Canada-France Global Dementia Legacy Event on September 11and 12, 2014 in Ottawa. The event, which stemmed from the G8 Dementia Summit in London, UK, last spring, explored how partnerships between industry and academia can be leveraged to support the global fight against this pressing health issue. The National Population Health Study of Neurological Conditions was also released at the meeting, providing new information on the impact of Parkinson’s disease in Canada.

Guest editorial in Show Me the Evidence

The Canadian Institutes of Health Research invited Joyce Gordon to write a guest editorial in their online publication Show Me the Evidence. The guest editorial was featured in the fall issue and emphasized the power of partnerships and collaboration in the discovery of research breakthroughs in dementia and Parkinson’s disease. To view the full article, click here.

Moving forward with a national dementia strategy

The Minister of Health Rona Ambrose’s recent announcement about the development of a national dementia strategy provides Parkinson Society Canada the opportunity to continue collaborating with the Government of Canada. We look forward to working with government representatives on this initiative to develop a comprehensive and integrated response to the needs of all Canadians affected by dementia, including those living with Parkinson’s.

Honouring extraordinary volunteers

Jenna Sigurdson, 13, with Marc Pittet, Parkinson Society Manitoba (PSM) Board Chair, at the Parkinson SuperWalk in Winnipeg, where she received the Spirit of  Philanthropy National Volunteer Award. Jenna has raised more than $40,000 for PSM.

Jenna Sigurdson, 13, with Marc Pittet, Parkinson Society Manitoba (PSM) Board Chair, at the Parkinson SuperWalk in Winnipeg, where she received the Spirit of Philanthropy National Volunteer Award. Jenna has raised more than $40,000 for PSM.

There was plenty of applause at three Parkinson Society gatherings in Winnipeg, Ottawa and Montreal this fall when our National Volunteer Award recipients were honoured for their outstanding contributions to the Parkinson’s community in Canada. The National Volunteer Award program recognizes extraordinary volunteers, nominated by people in their own communities.

Jenna Sigurdson, 13, is the youngest person ever to receive a National Volunteer Award and has raised more than $40,000 for Parkinson Society Manitoba (PSM) since 2012.  She has educated thousands of people about Parkinson’s disease by visiting homes in her neighbourhood, arranging assemblies at her school, appearing on TV and telling her story to radio and print journalists. She also launched a school-wide fundraising program.

“When I found out my Dad had Parkinson’s, I wanted to do whatever I could to help him and to help everyone else who has Parkinson’s,” explains Jenna.  “I wanted to help find a cure and to tell people about Parkinson’s.”

The Sigurdson family is an inspirational team with father Blair leading the Young Onset Support Group and mother Karren organizing various events. Together, the Sigurdson family are recipients of the Spirit of Philanthropy Award, which honours volunteer leadership in raising funds and awareness of Parkinson disease in Canada. The award was presented to Jenna at the Parkinson SuperWalk in Winnipeg on September 6.

“I was surprised and honoured to receive the award,” says Jenna. “I hope it motivates others to do the same. And it shows that kids can make a difference too.”

Richard Côté receives his award from Nicole Charpentier, Executive Director, Parkinson Society Quebec during a bi-annual meeting of the Society held at Restaurant Le Manoir in Trois-Rivières on October 24.

Richard Côté receives his award from Nicole Charpentier, Executive Director, Parkinson Society Quebec during a bi-annual meeting of the Society held at Restaurant Le Manoir in Trois-Rivières on October 24.

Another recipient of the Spirit of Philanthropy Award is Richard Côté of Longueuil, Quebec, who received his accolades at a provincial gathering on October 24. Richard was honoured for his consistent volunteer leadership and his important role in raising funds for Parkinson’s disease in Canada. His work with Parkinson Society Quebec and his contributions as a board member of Parkinson Society Canada are complimented by his history as a founding member of the Fonds Quebecois de Recherche sur le Parkinson (FQRP). The FQRP secured $2 million for research over four years thanks in large part to Richard’s efforts.
Like Jenna, Richard believes that one person can make a difference. Although he does not have a personal connection to anyone with Parkinson’s disease, he has found his work for the cause to be a “very worthwhile experience – a growing experience. Like many people, I am convinced that giving of your time and talents can make a difference and directly benefit others.” When Richard learned he was receiving a National Volunteer Award, he was “very touched.”

Alice Templin, centre, receives her award from Dennise Taylor-Gilhen, CEO, Parkinson Society Eastern Ontario, left and Vanessa Foran, VP, Public Affairs & National Programs, Parkinson Society Canada.

Alice Templin, centre, receives her award from Dennise Taylor-Gilhen, CEO, Parkinson Society Eastern Ontario, left and Vanessa Foran, VP, Public Affairs & National Programs, Parkinson Society Canada.

Our third 2014 National Award recipient Alice Templin of Ottawa, Ontario, has touched many people with Parkinson’s in a very direct way. She received the Mimi Feutl Award at a celebration on October 28. A retired physiotherapist, Alice has managed the resource library of Parkinson Society Eastern Ontario (PSEO) for more than seven years and has been an active and dedicated education and support services volunteer since 2006. She has helped PSEO provide interesting and well-attended education days that have covered broad topics focused on living well, research and Parkinson’s challenges and solutions. In 2011, Alice served on the program planning committee (comprehensive care) for the World Parkinson Congress 2013 in Montreal.

“I volunteer for PSEO because I share its vision of hope and its values of collaboration and empowerment of those living with Parkinson’s,” says Alice. “I feel overwhelmed and humbled to have been selected for this award. There are so many people who have inspired me to do what I do.”

The Mimi Feutl Award is given to an individual who, through compassion and provision of information and support, has made life better for people with Parkinson’s and their families.

Become a Parkinson’s Ambassador in your riding

Joyce Barretto, co-Chair, National Advocacy Committee, Parkinson Society Canada

Joyce Barretto, co-Chair, National Advocacy Committee, Parkinson Society Canada

Do you want to make a difference in the lives of Canadians affected by Parkinson’s disease? If so, join our Parkinson’s Ambassador Network and play an important role in the upcoming federal election.

“Only you can present that personal perspective, whether you live with Parkinson’s or you have family or friends with the disease,” says Joyce Barretto, co-Chair of Parkinson Society Canada’s National Advocacy Committee. Barretto has a deep commitment to the Parkinson’s cause because her mother has been living with Parkinson’s for more than 18 years.

As representatives of the Parkinson’s community in political ridings across Canada, you, along with other volunteers coast-to-coast, will meet with your local MP and candidates to discuss issues impacting the Parkinson’s community. Although the election must officially be held by October 19, 2015, there are indications it will be called early – this winter or in the spring of 2015.

What are we looking for?

  • People living with Parkinson’s and their caregivers
  • Relatives and friends affected by the disease
  • Anyone who wants to help advance the Parkinson’s cause
  • People with five to 10 hours to volunteer during the election campaign
  • Strong public speakers

Parkinson Society Canada will train and provide ongoing support to our ambassadors to ensure they are fully prepared for their responsibilities during the campaign. Parkinson’s Ambassadors may also have an opportunity to participate in other national and provincial advocacy initiatives beyond the election.

“I invite you to be a voice for change and a champion in your community to get our Parkinson’s message heard,” encourages Barretto.

If you are interested in being a Parkinson’s Ambassador or have questions about this opportunity, please visit our website or contact Vanessa Foran, VP, Public Affairs and National Programs, at Vanessa.Foran@parkinson.ca or toll-free at 1-800-565-3000 ext. 3396.

Natasha discovers her perfect therapy at Giddy Up Acres

Natasha McCarthy and TBone get some exercise at Giddy up Acres in PEI.

Natasha McCarthy and TBone get some exercise at Giddy up Acres in PEI.

There is something about the outside of a horse that is good for the inside of a man. Winston Churchill

This quote introduces one of Natasha McCarthy’s recent blogposts about her life with young onset Parkinson’s disease. The 37-year-old mother of two young daughters shares her journey and her joyous re-connection with horses, the health benefits of riding and the helpful coaching of her riding instructor Amanda Tweety. Together, they have provided her with just the right exercise.

Therapeutic riding or equine therapy has been well studied in different patient populations – from people with MS to seniors and from children to people with other neurological conditions – as an effective exercise for improving balance and gait. In addition, the psychological benefits are well-documented and of course, for many, it’s great fun.

As Natasha dealt with the 15-month odyssey to confirm her diagnosis (there is no movement disorders neurologist in PEI where she lives), she did plenty of research about Parkinson’s, connected with Parkinson Society Maritime Region, joined online networks and hunted for possible ways to keep active and improve her muscle control and balance. She stumbled upon therapeutic riding and her interest was sparked.

“I had always had a love of horses and I had done some riding in my teens,” she says. “Why not try to regain and improve my English-style riding?”

Natasha’s daughter had recently taken some lessons from Amanda Tweety at Giddy up Acres, just five minutes from home. Amanda listened to Natasha’s challenges and designed a program for her, starting with a “confidence-boosting” horse named Roy. “He was a fairly lazy fellow,” says Natasha, “but he helped me get my mind wrapped around the art of posting and we practiced some techniques from times gone by.

Natasha progressed fairly quickly to TBone, a faster and more challenging horse. “Some days my poor position and moving body confuse him and frustrate me,” says Natasha, “and when I get off him, I have legs that are like jello and I can barely walk. But that is only some days.”

“It’s very much a mental and physical activity and a sweat fest most days,” says Natasha. “For anyone that’s never ridden, and I don’t mean a trail ride where you just sit back and let the horse take you along, but English-style riding, it is most definitely hard work. Posting has you constantly raising and lowering yourself in the saddle – along with all the other bits, like keeping your legs in position, watching where you’re going, keeping the reins in hand and staying upright in the saddle.”

After six months of weekly, 30-minute lessons, Natasha says there is no doubt that therapeutic riding has been beneficial to her both mentally and physically. “It’s also clear to me that Amanda is part of my care team,” says Natasha. “She may not have a medical background, but she knows why I am there, cares that I get the benefits I require, and adjusts my lessons accordingly.

“I love the horses and they make me feel peaceful and comforted and give me a little fun while I get a good physical workout.”


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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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