Raising the Parkinson’s voice on Parliament Hill

Lobby Day

Lobby Day

Our lobby day in Ottawa was an excellent opportunity to identify champions for Parkinson’s and to ensure the needs of Canadians affected by the disease are well reflected in national policy.

Our conversations with MPs and civil servants focused on three priority areas impacting the Canadian Parkinson’s community:

1. Support for caregivers

2. Genetic fairness legislation, and

3. Establishing a comprehensive healthcare plan to address the complex needs of seniors.

Canadians affected by Parkinson’s were also recognized in both the House of Commons and the Senate. MP Wladyslaw Lizon, member of the Standing Committee on Health, and Senator Kelvin Ogilvie, Chair of the Standing Committee on Social Affairs, Science and Technology, each made an announcement to highlight Parkinson’s Awareness Month.

Our sincere gratitude to those volunteers and staff who contributed to this lobby day’s phenomenal success, including representatives from the National Advocacy Committee, Parkinson Society Eastern Ontario and the National Board of Directors.

Parkinson Society Canada is building on the positive momentum of lobby day by continuing to foster relationships with key decision makers and identifying new opportunities to ensure the Parkinson’s voice is heard at public policy tables.

For more information, visit our Advocacy Centre on our website at parkinson.ca.

Canada Guidelines on Parkinson’s Disease – What’s New

2014.08.05.guidelinesVarious allied health professionals hold promise of changing the landscape of clinical practice for their clients by providing consistent standard of care of the treatment and management of Parkinson’s disease. That’s because more and more health professionals have access to the Canadian Guidelines on Parkinson’s Disease (CGPD) disseminated by Parkinson Society Canada (PSC).

Last month PSC attended the Canadian Pharmacist Conference in Saskatoon where pharmacists were introduced to the Parkinson Guidelines for Pharmacists, an article published in the May/June 2014 issue of the Canadian Pharmacists Journal. The article emphasizes the role pharmacists play in the care of individuals living with Parkinson’s. Given the fact that community pharmacists are knowledgeable about how medications work and their side-effects, they can better support both patients and physicians in the ongoing management of medications.

June also saw PSC at the Canadian Neurological Sciences Federation (CNSF) Conference in Banff, Alberta.   PSC supported Drs. Alfonso Fasano and Mandar Jog, an author and reviewer of the CGPD, present a session to neurologists on the most up to date research on the management of Parkinson’s disease. The doctors discussed how the CGPD serve as a guide in assessing drug therapies, identifying appropriate treatment options and/or surgical treatment choices. Delivering consistent care will allow people with Parkinson’s to make better informed decisions regarding their personal treatment choices.

In June PSC continued to build professional partnerships, this time with the Canadian Association of Neuroscience Nurses (CANN) at their annual conference, also held in Banff. Lucie Lachance, a Clinical Nurse Specialist in Movement Disorders at the Montreal Neurological Hospital at the McGill University Health Centre, delivered a workshop to help nurses apply the CGPD to their clinical practice in the management of their Parkinson’s patients.

Topics ranged from early onset Parkinson’s (diagnosis of adults aged 21 to 39 years) to the more advanced stages of the disease, outlining how to best treat and manage Parkinson’s patients based on the recommendations laid out in the CGPD. The workshop utilized realistic scenarios that neuroscience nurses may encounter in everyday practice to identify appropriate interventions that would help maintain a higher quality of life for people living with Parkinson’s.

Professionals in all disciplines offer their unique perspective when treating people with Parkinson’s. Clinicians are encouraged to provide feedback to the CGPD through the online survey available at http://www.ParkinsonClinicalGuidelines.ca.

PSC will continue to expand its continuing education and development activities for health professionals in Canada through established relationships with physiotherapists, occupational therapists and speech-language pathologists.

For resources for individuals visit www.parkinson.ca and visit the Resources section of the website for health professionals at www.ParkinsonClinicalGuidelines.ca. For more information, contact Grace.Ferrari@parkinson.ca, National Manager, Professional and Public Education.

Nominate your caregiver for a Canada Cares award

2014.08.05.bruce.ireland

Bruce Ireland (l), receives first National Family Caregiver award.

Canada Cares, a not-for profit organization dedicated to celebrating family and professional caregivers, is calling for nominations for its 2014 Canada Cares awards. It’s a great way to show your appreciation to your own caregiver and to help recognize the contributions of all those who care for others in our communities.

Five family caregivers and five professional caregivers from four regions of Canada (Western, Central, Atlantic and Northern) will be selected to receive a Canada Cares Award. One of the regional award winners in each category (family or professional) will be chosen as the Canada Cares National Caregivers of the Year.

Bruce Ireland, Past-Chair of Parkinson Society Canada’s Board of Directors was the inaugural recipient of the National Family Caregiver award in 2013. Bruce is caregiver to his wife Karen, who lives with Parkinson’s.

Additional Canada Cares awards include the One Wish Award, which awards $10,000 to one caregiver to make a care giving wish come true; the Caregiver-Friendly Workplace Award and a Caring Communities Award.

To find out more and to nominate your family or professional caregiver for a Canada Cares award, visit canadacares.org. Contest closes September 15, 2014 and winners will be announced in November, 2014.

What’s New in Research?

2014.08.05.research

Katherine McDonald, York University, right, with Julie Wysocki, Director, National Research Program, PSC

Parkinson Society Canada attends CPIN Day 2014 at University of Toronto

You are never too old to go back to school. That’s what Parkinson Society Canada discovered when it supported the 2014 Collaborative Program In Neuroscience (CPIN) Research Day and International Symposium on Synaptic Plasticity and Brain Disorders. The event, held at the Medical Sciences Building, University of Toronto as well as the Mount Sinai Hospital Auditorium, was like speed-dating. But instead of mini-dates with prospective partners, the conversations revolved around the more than 80 poster presentations from students in disciplines ranging from biochemistry to cell and system biology to psychology.

Among the presenters was Vincent Lam, pharmacology & toxicology, University of Toronto, whose supervisor is Parkinson Society Canada-funded researcher Ali Salahpour. Lam’s project was titled, “TAAR1 as a new Target for Treatment of Parkinson’s Disease: The Discovery of Novel Chemical Compounds Through the use of in silico Screening and in vivo Testing.” Katherine McDonald, Department of Psychology, York University also presented her work on, “A Dance Intervention for People with Parkinson’s Disease: Investigating Short-term and Long-term Impacts of Dance on Physical Functioning and Quality of Life.” This project is part of Dr. Joseph DeSouza’s Parkinson Society Canada-funded project in partnership with Canada’s National Ballet School.

This year, the Symposium was held in honour of Professor John C. Roder’s contribution to science and education. The evening featured a tribute honouring the achievements of Dr. John Roder, and his career, in which he has devoted more than 25 years to investigating the molecular processes underlying synaptic regulation and mental disorders. He has made major contributions to the field of synaptic plasticity and brain function.

CPIN’s goal of fostering a strong and proactive collaborative neuroscience training program is well aligned with PSC’s National Research Program mandate to build neuroscience research capacity. We look forward to the 2015 event.

2014.08.05.research2Save the date:

The 2015 Donald Calne lecture will take place in conjunction with the Canadian Neurological Sciences Federation (CNSF) annual conference in Toronto on Thursday, June 11, 2015 at the Fairmont Royal York Hotel. Details to follow.

Watch for the National Research Program 2014-2016 funding announcements in the next issue of eParkinsonPost.

Message From the Editor

Marina Joseph

Marina Joseph

Welcome to the summer issue of eParkinsonPost for 2014. We continue to work together with our national network of partners to provide support, services and programs to Canadians living with Parkinson’s disease.

You can read about our recent participation in the Collaborative Program in Neuroscience (CPIN) Research Day at University of Toronto’s Medical School and International Symposium on Synaptic Plasticity and Brain Disorders at Mount Sinai Hospital. A number of the more than 80 poster presentations from students in disciplines ranging from biochemistry to cell and system biology to psychology were related to Parkinson’s research, a testament to the complexity of the disease and its profound impact on quality of life.

Parkinson Society Canada is partnering with Canada Cares to celebrate caregivers who play an important role in supporting people with Parkinson’s. Read about how you can nominate a family member or professional caregiver for a Canada Cares Caregiver award.

Also in this issue, we share updates on Parkinson Society Canada’s outreach in Canada targeted to support family doctors and other health professionals with resources to apply the Canadian Guidelines on Parkinson’s Disease in daily practice. Recently, we participated in three major conferences: the Canadian Pharmacist Conference in Saskatoon, the Canadian Association of Neuroscience Nurses (CANN) and the Canadian Neurological Sciences Federation Conference, held in Banff, Alberta.

We invite you to join us for a webinar presentation featuring two of Canada’s leading movement disorder specialists who will update you on new treatments in Parkinson’s since publication of the first Canadian Guidelines on Parkinson’s Disease. Register online at www.parkinson.ca/webinar2014.

During the coming months, Parkinson Society Canada will be building on the positive momentum of lobby day by continuing to foster relationships with key decision makers and identifying new opportunities to ensure the Parkinson’s voice is heard.

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.

Message from the Editor

Welcome to the April issue of eParkinson Post. At this time every year we celebrate the accomplishments of our volunteers, colleagues and cutting-edge researchers while raising awareness of Parkinson’s disease. Every day we are grateful for the everyday heroes who inspire extraordinary hope, working tirelessly to educate, fundraise, support, treat and research Parkinson’s. Take a look at six inspirational stories from among our many heroes across Canada.

We’re proud to share Parkinson Society Canada’s new National Advocacy Framework. This core document provides a snapshot of what drives our advocacy efforts, the people involved in our initiatives, the actions we are taking, and what we hope to achieve for Canadians affected by Parkinson’s disease.

We are pleased to announce Dr. Ali Rajput as this year’s recipient of the Donald Calne Lectureship award. In 2012, Dr. Rajput and an international team of neurologists and scientists discovered an abnormal gene in certain Saskatchewan Mennonite families that leads to Parkinson’s disease. This breakthrough could lead to new treatments, diagnostic tests and possibly, a cure for Parkinson’s. Mark  May 26th on your calendar for the by invitation event which takes place during the Canadian Association for Neuroscience’s (CAN) annual conference, in Montreal, Canada.

We are also pleased to partner with the Canadian Association of Neuroscience Nurses during their 45th Annual Meeting and Scientific Sessions, which will be held in Banff, Alberta from June 3rd – 6th, 2014. Parkinson Society Canada will be  working with clinical nurse specialist Lucie Lachance to present a two-hour plenary workshop for neuroscience nurses that will help them implement the Canadian Guidelines on Parkinson’s Disease in clinical practice.  And if you can’t join the conference, there are other professional education opportunities available via webinar – check the website and register today.

Marina Joseph

Marina Joseph

We invite you to join us in celebrating extraordinary heroes during Parkinson’s Awareness Month. Join others who are giving back and help us move the cause forward through 2014 and beyond.  And don’t forget to check in with our partners across Canada to find out what’s happening in a community near you.

Everyday Heroes. Extraordinary Hope.

At Parkinson Society Canada, we celebrate the everyday heroes who help improve the lives of people with Parkinson’s. Regardless of their personal or professional background, these doctors, health care professionals, volunteers and people with Parkinson’s go the extra mile to inspire extraordinary hope for the greater Parkinson’s community.

During Parkinson’s Awareness Month (April), we invite you to read their inspirational stories.

Jessica Lewgood, stepped up to run her local SuperWalk in 2013 when the previous organizers were unavailable. Pictured above with SuperWalk supporter Rosemarie Burgess.

Jessica Lewgood, stepped up to run her local SuperWalk in 2013 when the previous organizers were unavailable. Pictured above with SuperWalk supporter Rosemarie Burgess.

Getting Connected to the Parkinson’s Cause

More familiar to working with elite athletes in need of a training program or exercise regimen, Jessica Lewgood was forced outside her comfort zone when she was approached to run a Parkinson’s specific exercise program in Regina, Saskatchewan.

After five years on the job, Jessica has two new families.  Her personal family with a baby due in June, and a new Parkinson’s family, which gave her a newfound perspective on what people with the disease go through on a daily basis.  She’s always been interested in sports related injuries and is very active in various activities in her own time. Working with people with Parkinson’s has let her see another side of physical disability.

“Working with the Parkinson’s exercise group has been a huge learning experience for me. I’ve learned a lot about Parkinson’s and what exercises are beneficial to managing the disease. Some people with Parkinson’s have other health issues like a heart condition. We’re kind of treating their overall condition,” added Jessica.

Click here to read the full story

Contributions Beyond Words

Angelina Batten, a Speech-Language Pathologist working with Western Health in Newfoundland, has gone above and beyond for her tight-knit community of people with Parkinson’s. In addition to running a speech education program, which started in 2009, Angelina launched a related therapy program to help people in need improve their speech, vocal endurance and facial expressions.

“Our group really is like a small family. It’s a personal and professional satisfaction. I get to see improvements in the group personally. We have people who increase their abilities by over 50%. Seeing that progress keeps me centered and helps me keep things in context,” said Angelina.

Click here to read the full story

Not Slowing Down: A One-of-a-Kind Adventure

While many of us see sandy beaches and reclining chairs as the ideal vacation getaway, Linda Jean Remmer, diagnosed with Parkinson’s in late 2009, is much more inclined for remote destinations and adventure.

In December 2013, Linda Jean and Ross, her husband of 44 years, set out on a journey to Uganda and Rwanda to see silverback gorillas in their native habitat.

“I was worried about how long I’d be capable to travel. In 2011, we went to Kenya and Tanzania, but that trip was well organized. We went by plane and jeep to remote locations and game parks. We saw elephants, lions, leopards, rhinos and cape buffalo plus all the major animals,” Linda Jean remembered.

Click here to read the full story

An Everyday Heroine Living with Parkinson’s

As with many people newly diagnosed with Parkinson’s, Noëlla Chicoine thought she had a rare disease that no one else had or could relate to. With a 28 year career as a preschool teacher, Noëlla understood the need to educate herself on Parkinson’s right away. Her research led her to Parkinson Society Quebec (PSQ).

“When I got my diagnosis, I thought I was the only one with Parkinson’s. It felt like my soul fell down. I didn’t feel like I was in control of my life anymore. I always lived life at 120 kilometres per hour; after the diagnosis I slowed down to 30. After getting medication, I sped up to 70 kilometres per hour. I can live well at this pace,” Noëlla insisted.

Click here to read the full story

A Different Approach to Life: One Family’s Young Onset Parkinson’s Journey

When Martin Parker reached out unsuccessfully to touch the ’s’ key on his computer keyboard, he just assumed he was injured. He moved on with his life, hoping as anyone would that he would heal in time with full movement returning to his hand.

As time went on, Martin’s symptoms increased. First his left hand lost dexterity where a tremor soon developed. Later his left foot began to curl involuntarily, reducing his ability to walk. When his speech started to slur, and he couldn’t perform some fine-motor tasks, Martin’s wife Meghan insisted it was time to see the doctor.

“To tell the truth, I ignored the symptoms at first. When it got to the point that I couldn’t get my cellphone out of my pocket, Meghan said it was time to see someone,” Martin recalled.

Click here to read the full story

Helping the Parkinson’s Movement Personally and Professionally

As the only movement disorder specialist in the Montérégie region of Quebec, Dr. Martin Cloutier is a crucial healthcare provider for the local Parkinson’s community.

More than half of his approximate 1000 patients have Parkinson’s disease. Dr. Cloutier, Director of Clinical Medicine at the Neuro Rive Sud, sees most of his patients twice a year, adding additional appointments as needed, while working closely with public clinics and family doctors to provide the highest level of care.

“The patients in our Parkinson’s clinic receive personal attention. We don’t book short appointments. It’s essential that we give our patients the time to tell us what they feel is important for them,” said Dr. Cloutier.

Click here to read the full story


Charitable registration number 10809 1786 RR0001
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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