Learning how to get the help you need as a caregiver

What kind of help do I need? Who do I ask for that kind of help? How do I keep track of tasks and appointments and who is doing what? These are just some of the questions that caregivers need to answer – often every day. Navigating the health and social care systems can be overwhelming, especially when caring for a person with a progressive brain disease.

Parkinson Canada, in partnership with the Multiple Sclerosis Society of Canada and the Alzheimer’s Society, will broadcast a second webinar especially designed to meet the needs of caregivers on May 26, from 6 to 7:30 p.m. EDT. “Learning how to get the help you need – a webinar for caregivers on how to navigate the health and social care systems,” consists of a one-hour presentation followed by an interactive question and answer session.

“At the core of this webinar is the recognition that one individual caregiver cannot possibly meet all of the needs of their loved one,” says Robert TerSteege of Parkinson Canada, one of the webinar’s presenters. “We will guide participants through the process of determining what help they need, where they may find it and how to ask for the help they need.”

TerSteege was the primary caregiver for his late fiancé for about a year, seven years ago, and is a Certified Information Referral Specialist (CIRS.) He will be joined by Valerie Borggard, Navigator for the MS Knowledge Network, to provide an overview of how care partners can navigate different systems and consider different resources to help support themselves and their loved ones.

“It can be difficult to first identify the issue you need to resolve and then to target where to find the resources you need,” says TerSteege, “Keep in mind that there are three levels of government in Canada – federal, provincial and municipal – and several departments at each level. There is not really a single system, but several systems to navigate. There are also community and charitable resources available, as well as an individual’s personal support network to call upon. This webinar should give participants some guidance on how to get the help they need.”

To join the live webinar, you need to register in advance. You’ll also need access to a computer and the Internet. Following the broadcast, the webinar will be posted on Parkinson Canada’s website so you can watch and listen at your own convenience. We will also be posting on the website some of the helpful tools introduced in the webinar, like the “Honey Do” List:  for those ‘if there’s anything I can do’ moments and a chart for Planning for When I Will Need Help (appointments, drives, and other ‘no miss’ days.)

If you haven’t watched it yet, you may want to check out the previous webinar for caregivers: Taking care of yourself through the ups and downs of caregiving. Care partners can also find other information and resources on our website or by calling Parkinson Canada’s Information and Referral Centre at 1-800-565-3000.


Parkinson’s and the female brain

Dr. Emily Hawken
Dr. Emily Hawken

Although Parkinson’s disease affects both men and women, women are less likely to develop the progressive neurological disorder, but more likely to experience severe motor symptoms and side effects of treatment.

At Queen’s University in Kingston, neuroscientist Emily Hawken investigates those gender differences. She’s studying the interaction between Parkinson’s disease and hormones that are intrinsic to females, such as estrogen. She wants to know how that interaction affects the transmission of chemicals in the brain. Hawken recently received a two-year, $100,000 Basic Research Fellowship from the Parkinson Canada Research Program to pursue this research.

For example, when women with Parkinson’s are treated with levodopa, the medication used to reduce the symptoms of the disease, they often develop more severe involuntary movements (dyskinesia) than men with Parkinson’s on the same medication.

“What is it about females that make them less likely to develop symptoms of Parkinson’s, yet more likely to be severely impaired by the side effects of the treatment?” she asks.

Using animal models, Hawken will transmit electrical currents through brain cells to measure the activity of those neurons in specific regions of the brain. Then she will observe and record the effect of specific neurotransmitters on the neurons she measures.

Recent evidence suggests estrogen may affect other brain chemicals, such as dopamine, and estrogen may itself become a neuromodulator that transmits information to brain cells. Hawken hopes she will observe  physiological evidence that animals that develop dyskinesia experience changes in their brain cells that  differ depending on the animals’ gender.

If she can pinpoint a gender difference, Hawken hopes her research will inform treatments for Parkinson’s disease that are designed differently for women and men.

“Instead of a blanket treatment … perhaps if we did tailor the treatment for women, it would be equally therapeutic, but with fewer side effects,” Hawken says.

Historically, most health research has been conducted using men and a male model of disease, Hawken points out. “We could be completely missing something just by looking at the male model,” Hawken says. “Women are suffering as a consequence, because they generally don’t present the same symptoms. Their treatments are often subpar because our knowledge base isn’t adequate in terms of how the female brain operates.”

Read about other researchers recently funded by the Parkinson Canada Research Program.


Family, faith and a sense of humour help Cindy cope with Parkinson’s

Cindy Smith with her grandson Morgan.
Cindy Smith with her grandson Morgan.

“You should have seen me back then. I’d be sitting on the tailgate of the station wagon with the youngest on my lap. My middle son would be tearing around on his tricycle and we’d be watching my eldest boy play baseball; cheering him on,” remembers Cindy Smith as she looks back on her days as the mother of three young sons, with her husband Tim away with the Navy. That was just before learning she had Parkinson’s disease, at 35 years of age.

In 1996, she’d gone to her family doctor about a jiggling finger on her left hand. She thought maybe she had a wonky muscle or tendon. She was surprised when her doctor referred her to a neurologist. The specialist said he knew by the way she walked into his office, with limited arm movement, that she had Parkinson’s disease. There is no simple blood test or other diagnostic tool to confirm a diagnosis. They did several tests, including an MRI, to rule out other possibilities.

“I was taken aback,” says Cindy. “I didn’t know much about Parkinson’s, except that it was something old people got.”

For the first year or two, Cindy didn’t take any medication and carried on as a busy Mom with a husband in the navy. She didn’t have too many symptoms at the time that affected her lifestyle. Eventually, she started taking levodopa and within four years, the family moved from Dartmouth to Hilden, close to Cindy’s family and her husband Tim got a job on land. “We knew that eventually I was going to need more help.” Her eldest son Tim says the move was not too tough on the children, since they were still quite young and had lots of cousins as built-in friends at their new school.

Aside from close family and friends, Cindy did not announce her disease to others and she didn’t have to deal with telling an employer. She and her husband did tell the children about Cindy’s diagnosis and tried not to make it sound like a big deal. But her son Tim remembers the announcement.

“I remember having a conversation in the car as we were all driving across the bridge, about the possibility of Mum having Parkinson’s, but they were going to do more tests. I think I was about eight years old. I heard the word ‘disease’ and I knew it was serious. My parents explained how it might affect her, that she might be a bit shaky. It was scary at the time,” recalls Tim.

Cindy’s disease progressed fairly slowly and son Tim agrees that their mother’s Parkinson disease did not have a huge impact on the day-to-day lives of the three boys. “It was a busy time,” says Cindy. “There were beavers, cubs and scouts; sports and school. We did it all. Everybody pitched in and Tim was no longer at sea. He is always such a great help. We just got on with life.”

She always made jokes about her tremors, says her son Tim. “She would threaten to give us haircuts herself, if we didn’t behave. And in the hardware store, she’d joke that they should hire her to mix the paint, instead of using the machine.”

Cindy did go to a Parkinson’s support group – once. She was by far the youngest person there and most of the participants were using walkers or wheelchairs and Cindy just found it frightening and depressing. (Writer’s note: Today, there are Parkinson Canada support groups especially for people with Young-onset Parkinson’s disease (YOPD.)

By the time Cindy was 50, and in her second decade living with the disease, she was finding it much more difficult to cope. She was taking pills every two hours to deal with her symptoms. “I’d have very short windows of time to do anything. I could take a shower, or hang some clothes on the line, or peel the potatoes. I would start something and then I’d have to get someone else to finish it. Some nights, I’d have to wake Tim to help me move in bed to get comfortable. I couldn’t move on my own.”

Eventually, Cindy was put on the list for a procedure called deep brain stimulation (DBS) surgery. It is brain surgery that is performed while the patient is awake; placing electrode stimulators precisely within the brain. The battery pack that sends voltage to the stimulators device is implanted in the chest (like a pacemaker). Cindy keeps her remote controller that is used to adjust the battery pack voltage going to the brain in her purse.

Cindy underwent two procedures in the spring of 2012, one for her left side, and three weeks later a second procedure to address the right side of her body. “My head was shaved and painted orange from the disinfectant,” says Cindy. “I was quite a sight. The neurosurgeon had a sense of humour and after he opened my skull, I remember him saying: ‘Well, Cindy, this is a good looking brain you’ve got here.'” Cindy continued to joke with him through the operation. “I had to keep saying my name and my address, while he was working. Sometimes I’d say a different name, or address, just to lighten things up.”

Once the stimulation device was calibrated, Cindy had a bit of a rough patch. She was still taking her medications. She tells a story of doing the “funky chicken” in a restaurant while under the combined effects of her medications and the DBS. The neurologist was thrilled, says Cindy. It meant the surgery was a success, because I was overstimulated by the combined effects of the medication and the DBS. Cindy was then able to stop taking her medications at the direction of her neurologist.

“The surgery was totally worth the risk. I had very few symptoms and took no medication for a few years.” Unfortunately, DBS does not stop the progression of the disease. Cindy now takes some medication and is dealing with other health issues, but she still feels better than before the surgery.

Cindy credits her sense of humour, the support of her family, especially her husband Tim and her three sons, as well as her church family, with her ability to cope with this complex disease. She does worry about the future, especially the possibility of dementia, which is a common symptom of Parkinson’s, especially in its later stages.

In the meantime, she is grateful for the research that has provided medications and treatments like DBS, which have improved her quality of life. She looks forward to the discovery of a cure for Parkinson’s. For now, she enjoys time with her grown sons and her grandson Morgan. As a grandmother, Cindy just laughs when her son Tim, who now has his own young son, asks her how she did it all when they were young.


Days of hope and recognition during Parkinson Awareness Month

Joyce Gordon, CEO, Parkinson Canada
Joyce Gordon, CEO, Parkinson Canada

Joyce Gordon, Chief Executive Officer, Parkinson Canada

There is no doubt that Parkinson’s changes everything. One person living with the condition explained its impact this way: “Parkinson’s disease affects EVERY aspect of my life. From the moment I open my eyes in the morning to when I fall asleep at night, my mood, physical abilities and quality of life, depend on how well my medications, stress management and exercise are working to help diminish the effects of Parkinson’s.”

While everyone’s Parkinson’s journey is unique, help and hope in navigating that journey is available to you, from many sources. You do not have to deal with Parkinson’s alone. From friends and family to health care professionals and from donors and volunteers to resources at Parkinson Canada; information, support and advocacy are available. We know that it takes a community to support people living with Parkinson’s and their families. And while we are supporting you, we take comfort knowing there is a robust scientific community in Canada and around the globe who are collaborating in the search for a cure.

Throughout Parkinson Awareness Month, Parkinson Canada groups across the country are reaching out to their communities to promote public awareness and understanding of this complex condition. While some of these events have already taken place, 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.

Many of these events and awareness campaigns are organized and implemented by community volunteers. Last week was National Volunteer Week and several of our community groups made the effort to recognize and thank these dedicated individuals. Other Parkinson Canada groups will formally recognize their volunteers once the intense activity of Parkinson Awareness Month is over. Our organization, and those we serve, are deeply grateful to each and every one of our volunteers and recognize that the help and hope we offer relies upon their continued contributions and commitment.

About 100 of our volunteers are Parkinson Ambassadors, helping us represent the Parkinson’s community in our efforts to influence provincial and federal government policy. We are pleased that our advocacy efforts so far have resulted in marked progress in federal legislation to end genetic discrimination — Bill S-201. We hope this Bill will be passed soon, so that Canadians will enjoy the same protection from genetic discrimination as citizens of all of the other G7 countries. Not only will genetic fairness legislation outlaw genetic-based discrimination by employers and insurers; its protections should also encourage greater participation in genetic research.

Representatives from our Parkinson Ambassadors were introduced to the members of the Ontario legislature at Queen’s Park on April 11, World Parkinson Day. They were recognized by MPP John Fraser, who also made a statement that day about Parkinson Awareness Month. And on April 18, Celina Caesar-Chavannes, MP, Parliamentary Secretary to the Prime Minister, made a statement in the House of Commons about Parkinson Awareness Month. In addition, Senator Ogilvie made a similar supportive announcement in the Senate. And in communities close to you, several local Parkinson Canada groups were successful in having their municipalities proclaim April as Parkinson Awareness Month. Awareness leads to understanding, and brings hope to people living with this life changing disease.

The messages delivered to legislators included the fact that right now in Canada some 100,000 individuals with Parkinson’s are struggling with the stigma and daily challenges of living with this complex neurological disease. By 2031, the Parkinson’s population will double. With more than 10 people diagnosed every day in Canada, chances are someone you know or love will be affected.

We at Parkinson Canada are working more cohesively than ever, to deliver the best possible support to people living with Parkinson’s. It is our number one core value: To put people with Parkinson’s first. Our heartfelt thanks go to everyone who helps us, especially during Parkinson Awareness Month, to create a better life with a brighter future for Canadians living with Parkinson’s today and a world without Parkinson’s tomorrow.

Your voice matters. 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 celebrating living well with Parkinson’s.

Joyce Gordon, CEO, Parkinson Canada


Testing a new way to treat dyskinesia

Dr. Philippe Huot
Dr. Philippe Huot

One of the biggest challenges in treating Parkinson’s disease is finding ways to reduce dyskinesia, the involuntary movements most people eventually develop as a side effect of being treated with L-DOPA, the medication that reduces or controls their stiffness, tremors and rigidity.

Dr. Philippe Huot, a neurologist and neuroscientist, sees the effects of dyskinesia on the people with Parkinson’s he treats at the Centre Hospitalier de l’Université de Montréal’s Movement Disorders Clinic. He was recently awarded a one-year, $45,000, Lawrason Foundation pilot project grant by Parkinson Canada’s National Research Program to investigate a new treatment for dyskinesia.

“For some people it can be really debilitating,” he says. “They cannot write. They have trouble eating. They have trouble getting dressed. It can be really disturbing and undermine their quality of life.”

That’s why Huot is studying a new chemical compound he hopes will alleviate dyskinesia. He’s investigating a compound that modulates glutamate, one of the most abundant neurotransmitters, or naturally occurring chemicals, in the brain. Glutamate helps regulate movement and is also involved in generating these abnormal movements, Huot says.

Using an animal model of Parkinson’s disease, Huot is comparing the severity of dyskinesia in animals who receive the new compound in addition to L-DOPA. He is also testing the effect of simply receiving the new compound on its own, or against a placebo.

“What I hope I will demonstrate is that it is possible to alter the signalling of this chemical to achieve a reduction of dyskinesia, without altering the (beneficial) action of the current treatment,” he says.

The new compound has not yet been approved for use in humans, but similar chemicals have been tested in clinic – meaning that if it works, it might not take too long to secure funding to start small, proof-of-concept, clinical trials, Huot hopes.

“This is exciting, because maybe future clinical trials could be undertaken by me and my colleagues at my centre, and then we could move from molecules to bedside in a single centre. We can dream!”

Combining a research and a clinical career helps Huot understand not only what is happening at the cellular level in Parkinson’s disease, but how those events manifest themselves in the lives of his patients.

“I learn what the expectations, the fears and the hopes of the patients are,” he says. “This is a constant source of inspiration.”

Read about other researchers recently funded by Parkinson Canada’s National Research Program.


Communities across Canada are gearing up for Parkinson SuperWalk 2016

Brian Hawryluk
Brian Hawryluk

It takes a community to support a person living with Parkinson’s and search for a cure; from family and friends to healthcare professionals and from dedicated volunteers to researchers. Across the country more than 10,000 of these everyday heroes will once again don their super hero gear to participate in the 26th annual Parkinson SuperWalk, taking place from coast to coast on September 10 and 11.

Thousands more Canadians will sponsor walkers in support of Canadians living with Parkinson’s, raising funds for support services, education, advocacy and research. Two everyday heroes participating again this year will be Brian Hawryluk and his wife Michelle. Brian, a retired music teacher and still a performing keyboardist with the Blackboard Blues Band, was diagnosed with Parkinson’s six years ago when he was 54. Last summer he was invited to perform with David O’Hearn at a meeting of the Parkinson Canada support group in Mississauga. He became a regular member of the support group and last year participated in his first SuperWalk as part of the Mississauga Wilkinson Warriors SuperWalk team. The team placed first in Canada among the fundraising teams of 2015, raising more than $45,000.

“The team was incredible and they raised a phenomenal amount of money,” says Brian. “And the money raised helps to fund many support groups like ours, and research into better treatments and a cure for this disease.”

Last fall Brian attended a research event featuring presentations by some of the researchers funded by Parkinson Canada’s National Research Program and was able to see how his fundraising efforts are being used to invest in help and hope.

“While some of it was beyond me, they were inspirational as they explained how their work may lead to better treatments to improve the lives of people living with Parkinson’s and advance our knowledge towards a cure,” says Brian.

The first-hand contact with researchers meant Brian was very receptive when he was asked to participate in a clinical study being conducted at the movement disorders clinic where he receives treatment. He is now taking part in a three-year ONDRI (Ontario Neurodegenerative Disease Research Initiative) study.

You can join Brian and the rest of the Mississauga Wilkinson Warriors and become an everyday hero, inspiring hope for Canadians living with Parkinson’s as well as their families and care givers. Register today for a fun, family outing with a special purpose. Or contact Parkinson Canada at 1-800-565-3000 for details on a SuperWalk location near you.


Dr. Robert L. Nussbaum to present the 12th Donald Calne Lecture

Dr. Robert L. Nussbaum
Dr. Robert L. Nussbaum

Parkinson Canada is pleased to announce that the 12th Donald Calne Lecture will be presented by Dr. Robert L. Nussbaum on Tuesday, May 31, at 7 p.m. in conjunction with the Canadian Association for Neuroscience annual conference being held in Toronto. His presentation will be about genetics and Parkinson’s and will be suitable for both the public and the scientific community.

Dr. Nussbaum received his training in medicine in the Harvard-MIT Joint Program in Health Technology, his internal medicine training at Barnes Hospital/Washington University, and his genetics training at Baylor College of Medicine. He is board certified in internal medicine, clinical genetics and clinical molecular genetics.
Dr. Nussbaum directed the original research that led to the discovery of mutations in alpha-synuclein in hereditary Parkinson disease in the mid-1990s and has been studying its role in Parkinson disease ever since. Dr. Nussbaum is currently the Chief Medical Officer for Invitae, a genetic testing and information company, based in San Francisco, U.S.A.

Be sure to save the date. Advance registration will be required as space is limited. More details will be posted on www.parkinson.ca as they become available, including how to register. The presentation is co-sponsored by Abbvie Canada.

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.


Virtual reality brings real life Parkinson’s awareness

Neuroscientist Kaylena Ehgoetz Martens
Neuroscientist Kaylena Ehgoetz Martens

Canadian neuroscientist Kaylena Ehgoetz Martens has more than an academic interest in uncovering the reasons why almost half of everyone in the advanced stages of Parkinson’s disease experiences terrifying moments of being unable to move.

For three years, Ehgoetz Martens worked at an exercise rehabilitation program with a woman with Parkinson’s disease who experienced severe freezing of her gait. Three times a week, she helped the woman master a series of sensory-based and coordination exercises at the Movement Disorders Research and Rehabilitation Centre at Wilfrid Laurier University. At the end of their work together, the woman went from being largely wheelchair bound to walking short distances. More importantly, her less frequent falls and increased independence improved her outlook on life.

“It totally changed her mood,” Ehgoetz Martens says. “Whenever she was able to walk unassisted, her mouth would be open, smiling from ear-to-ear. It was really important to me that we were able to change how independent and worthwhile she felt for those last few years.”

The woman has since died, but she inspired the neuroscientist’s determination to pursue a research career focused on freezing of gait. Ehgoetz Martens pursued a PhD that demonstrated the link between anxiety and freezing.

Using virtual reality tools, she studied the gait of people with Parkinson’s who walked across a plank that was lying on the floor. When participants wore a headset that created a virtual environment, the program would suddenly “drop” the floor from under the plank, so the participants appeared to be walking nine metres above a deep pit.

Subjects involved in the study included a control group of people without Parkinson’s, and two groups of people who have Parkinson’s: those that experienced freezing of their gait; and those that did not. The latter group were classified as either high anxiety or low anxiety, through a questionnaire. Those with low anxiety reacted closer to people without Parkinson’s, and those with high anxiety reacted similar to those people with Parkinson’s who experience freezing of gait.

“The study demonstrated that anxiety provokes movement breakdown, slower walking and freezing in Parkinson’s disease,” says Ehgoetz Martens. Researchers are beginning to investigate more how the non-motor symptoms of Parkinson’s have an impact on the motor symptoms of the disease.

Last fall Ehgoetz Martens co-authored a research paper with Eric Beck and Dr. Quincey Almeida titled: “Freezing of Gait in Parkinson’s disease: An Overload Problem?”1. Partially funded by Parkinson Canada, the study involved a series of experiments to better understand the underlying causes of freezing of gait and to explore the interaction between cognitive function and sensory-perceptual influences, in this case visual cues. Beck was the primary investigator of the experiments at Wilfrid Laurier University, which were part of his ambitious undergraduate thesis.

Experiment pathways with and without visual cues and a devise to block the sight of leg movements.
Experiment pathways with and without visual cues and a devise to block the sight of leg movements.

Two groups of people with Parkinson’s – one group of “freezers” and one group of “non-freezers” – walked a straight path towards and through, a doorway. In one instance they also had to count the number of times they heard two digits spoken aloud while they walked (dual-task.) Sometimes the path they walked was marked into segments (visual cues) and sometimes the view of their legs moving was blocked from their vision. (See photo, right.) The gait and gaze of the participants was measured during these tasks.

The study found that freezing of gait (FOG) in people with Parkinson’s may be the result of an overload of processing resources in the brain. “The basal ganglia section of the brain, which is affected by Parkinson’s, contains a lot of our “core processors,” explains Ehgoetz Martens. “If they are damaged, our processing capacity is diminished. Visual cues may decrease the demand on the basal ganglia’s processing resources by promoting gait control though alternative pathways in the brain.”  However, Ehgoetz Martens acknowledges that most of us eventually “habitualize” visual cues, so they may no longer be helpful. Further investigation may help with effective strategies to alleviate freezing.

While attending an International Movement Disorder Congress in 2013, Ehgoetz Martens met associate professor Simon Lewis of the University of Sydney and director of the Parkinson’s Disease Research Clinic at the Brain & Mind Research Institute. The Australian researchers are some of the leaders in freezing of gait, reports Ehgoetz Martens.

When she completed her PhD in Canada, Ehgoetz Martens investigated research positions in Australia. She was awarded a two-year, $80,000 Basic Research Fellowship from Parkinson Canada’s National Research Program and is now living and working in Australia at the University of Sydney. “This funding from Parkinson Canada is absolutely critical,” says Ehgoetz Martens. “I could not have pursued this research without it and I am incredibly grateful!”

She will be investigating how anxiety triggers freezing in Parkinson’s by conducting research on patients participating in virtual reality scenarios while they are in a functional magnetic resonance imaging machine. As they manipulate foot pedals to simulate walking, the fMRI will scan their brains to chart the brain structures active during freezing.

It is hoped that the research will result in a new model to determine what causes freezing of gait and new ways to treat and reduce the anxiety that triggers it because part of improving quality of life and even disease severity, comes from treating these non-motor symptoms.
You can read more about this research, along with profiles of other projects funded by Parkinson Canada, at www.parkinson.ca.

1 Beck EN, Ehgoetz Martens KA, Almeida QJ (2015) Freezing of Gait in Parkinson’s Disease: An Overload Problem? PLoS ONE 10(12):e0144986. doi: 10.1371/journal.pone.0144986


Communities are stepping up for Parkinson Awareness Month this April

It Takes a Community to educate, advocate for, and support people living with Parkinson’s and their families, as well as continue the search for a cure. From advertising to webinars and from a wing-eating contest to a research presentation, Parkinson communities across the country are gearing up now for Parkinson Awareness Month this April.

Celina Chavannes, MP Whitby and parliamentary secretary to the Prime Minister, will make a statement in the House of Commons on April 11, World Parkinson Day. Several MPPs and MLAs and a senator are being asked to make statements recognizing Parkinson Awareness Month. Local Parkinson Canada groups are also approaching municipal officials to publicly proclaim April as Parkinson Awareness Month.  For a more complete schedule of what’s happening in your community, visit the interactive map on our website for local event listings.

You may see Parkinson Canada ads in your local newspaper or on TV. You may hear them on your favourite radio station. There may be posters in your neighbourhood, promoting local awareness, education and fundraising events throughout April. The following are just a sampling of the many events planned across the country for next month. Take note that some require advance registration as spaces fill up quickly.

Join us online for a cross-Canada webinar. Voice and communications therapies in Parkinson’s disease: Evidence, timing and techniques. Presented by Dr. Angela Roberts, speech-language pathologist and Parkinson Canada-funded researcher. April 15, noon to 1 p.m. EDT. Computer required. Advance registration required.

Celebrating Life art gala. Friday, April 15, 7 to 9 p.m. Saskatoon Inn, 2002 Airport Dr., Saskatoon, SK. $25 per person. For more details, visit the online event calendar and to register, contact michelle.carlson@parkinson.ca or 306-933-4481. Registration deadline is April 8.

Celebrating Life education conference. Saturday, April 16, 9:30 a.m. to 3 p.m. Saskatoon Inn, 2002 Airport Dr., Saskatoon, SK. $65 per person. For more details, visit the online event calendar and to register, contact michelle.carlson@parkinson.ca or 306-933-4481. Registration deadline is April 8.

Wingin’ It for Parkinson’s. Hosted by Tim Hague Jr., who along with his father Tim Hague Sr, won the first Amazing Race Canada. This fundraising event features wing-eating relays, on Saturday, April 2 at the King’s Head Pub in Winnipeg. For more details and to register a team today, visit winginit.ca.

Contents under Pressure conference.  Enjoy expert speakers, an exercise break, good company and a hot lunch. April 23, 10:30 a.m. to 3 p.m., Viscount Gort Hotel, 1670 Portage Avenue, WinnipegRegistration and payment must be received by April 18.

Hope in Bloom. In centres large and small across Ontario, volunteers will be selling tulips, a traditional sign of spring and the international floral symbol of hope for people living with Parkinson’s. Pots of tulips and bouquets of cut stems will be sold for $10 each in public venues, raising both awareness and funds.

Comedy night for Parkinson’s. Parkinson Canada proudly partners with Yuk Yuk’s for a laugh- out-loud fundraising event, April 2, in Ottawa. Pre-show social and silent auction at 6:30 p.m. in the Atrium with cash bar and snacks for sale by Sue’s Sweets. More details and tickets at Centrepointe Theatres Box Office. To purchase accessible seating, please call 613-580-2700.

Public lecture on sleep disorders and Parkinson’s. Parkinson Canada (Québec) and the Cummings Centre (Gelber Centre) will co-present a public lecture by Dr. Ron Postuma on sleep disorders and Parkinson’s disease on Thursday, April 7, at the Cummings Centre, 5700 Westbury Avenue, Montreal. The presentation will be in English and Dr. Postuma will field questions in either English or French. Doors open at 1 p.m. and the lecture will begin at 1:30 p.m. Light refreshments will be served. Admission is $10 and advance registration is required. For more information and to register, call 514-342-1234, ext. 7201 or register online.

French webinar for caregivers. Thursday April 28, 2016, 6:30 p.m. to 7:45 p.m. Taking care of yourself while looking after a close one can be a real challenge for caregivers. Social worker Jennifer Héroux-Bourduas meets Cecilia Gaudet, who overcomes the daily hardships of caring for someone living with an progressive neurological disease, and who has found coping strategies to keep control of her life (jointly presented with the Federation of Quebec Alzheimer Societies and the Multiple Sclerosis Society of Canada, Quebec Division). Free registration: www.lereseauaidant.ca. Information: Danielle Blain (Quebec office), tel. 514-357-4291, toll free 1-800-565-3000 ext.3397, danielle.blain@parkinson.ca.

Parkinson information and awareness day in Hawkesbury, Ontario. Parkinson Canada is evaluating the need for services and support groups around the Hawkesbury region of Eastern Ontario. Thursday, April 28: French information session 10:30 a.m. to 11:30 a.m., English information session 2:00 p.m. to 3:00 p.m., bilingual session 7:00 p.m. to 8:00 p.m. Quality Inn, 1575 Tupper Street, Hawkesbury, Ontario. Open to Ontario and Quebec residents. Please register with Ginette Trottier, gtrottier@toh.ca or 1-613-722-9238.

Mind over Matter education and awareness conference. A full day of activities broadly encompassing current neurological research, beneficial physical and mental activities, as well as helpful resources for people living with Parkinson’s. Saturday, April 2, from 8 a.m. to 5 p.m. at the Holiday Inn Harbourview, 101 Wyse Rd, Dartmouth, Nova Scotia. Register by March 19 for the early bird discounted fee of $40. Click here for more details and to register.


Coping with a Parkinson’s diagnosis

Jamie Fobert
Jamie Fobert

The details of the moment Jamie Fobert found out that he had Parkinson’s disease at 40 are etched forever in his mind. “I heard the words Parkinson’s disease. I looked down at my watch; it was 10:20 a.m., June 30, 2010. The doctor was wearing a dark dress shirt and khakis. I was bent over, my head down, my elbows on my knees and then it was a blur. The doctor kept talking, but I wasn’t hearing much.”

As a fit, active person, the young-onset Parkinson’s disease (YOPD) diagnosis was a shock. His eldest son first pointed out that he wasn’t swinging his right arm while playing soccer. Subsequent consultations with his family doctor and sports medicine specialists led him to that fateful appointment with the neurologist.

Fobert sobbed during the entire two-hour drive home to Belleville. Over the next few days, he shared his diagnosis with his family and his employers while trying to get on with his life.

Soon after, Fobert made a life-changing connection. He met Stephanie Bruder while she was volunteering at a fundraising event for Parkinson Canada in the local drugstore. Bruder, who also has YOPD, introduced him to the local Parkinson’s community, including a support group. “She’s a small person with a giant heart,” says Fobert.

A two-hour conversation with Bruder and Robert Brown, another local man living with Parkinson’s, did wonders for Fobert’s outlook. He began to understand the words: “I have Parkinson’s. It doesn’t have me.” He realized that living with Parkinson’s, he would be challenged to “step up or step aside” and he chose to step up.

Fobert continued and even increased his physical activity, playing soccer and lifting weights. He takes his medications and physician-approved supplements and monitors his diet and schedule. That’s not to say, he doesn’t slip up sometimes. “One morning I ate a new breakfast cereal without realizing it contained a lot of protein, which can inhibit the absorption of my medication. I was frozen at the kitchen table for quite some time, until my youngest son came by and helped me out.”

Fobert also made some tough decisions in his personal life. His marriage ended. He is now engaged to Beverly, his “true partner.” Between them, their family now includes 21-year-old twins, a 26-year-old son and a daughter-in-law, a 12-year-old son and a seven-year-old granddaughter. “It’s so much easier to live with Parkinson’s when you are supported by good people, who love you. I’m very lucky to have that,” says Jamie.

As a career caregiver working with children and adults with developmental challenges, it didn’t take long for Fobert to seek ways to help others. “I found out I had a talent for getting others to give; if not money, then supplies for our events.” Fobert helps organize events for Parkinson Canada and speaks to media and the public about living with the disease.

He recently became a “partner” for Parkinson Canada’s Life Lists Challenge, a new initiative this year. The Life Lists Challenge inspires others to raise funds while they undertake rewarding bucket list activities like skydiving or zip lining. The partners, all living with Parkinson’s, help to motivate participants in pursuing their adventures and their fundraising.

In his online profile for Life Lists Challenge, Fobert writes about his Superman tattoo. He refers to it as his “inner strength symbol,” explaining that most days Superman is simply Clark Kent, but Superman appears when extraordinary strength is needed. “And some days I need that inner strength when living with Parkinson’s.”

“I believe I have a responsibility to live every day to the fullest, and to not take anything for granted,” says Fobert. “A cure for Parkinson’s isn’t just going to happen; we need to go after it.”