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.

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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.

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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.

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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.

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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

New Framework Driving National Advocacy Initiatives through 2020

Parkinson Society Canada (PSC) is proud to share our National Advocacy Framework. This core document provides a snapshot of priorities that drive 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 from now through the year 2020. The framework will also be used as the foundation for our April 1st lobby day on Parliament Hill.

To view the full framework click here.PSC_ADVOCACY_FRAMEWORK_FEB2014 250 px

Parkinson Society Canada’s Key Advocacy Priorities:

Health Care Access – to ensure timely access to affordable and effective therapies, diagnostics and health services

Caregiver Support- to help caregivers maintain their own physical and mental well-being

Genetic Fairness Protection – to protect Canadians affected by a genetic condition including Parkinson’s disease, from genetic discrimination by employers and/or the insurance industry

Neurodegenerative Research – to receive accelerated and targeted investment in neuroscience and Parkinson’s research

Income Security – to protect people affected by Parkinson’s disease from poverty

Neurological Issues – to ensure the specific needs of those affected by neurological conditions are recognized and addressed

Parkinson Society Canada welcomes feedback from our community to ensure the framework reflects the needs and interests of Canadians affected by Parkinson’s.   Should you have any questions or comments regarding our framework or any of our national advocacy initiatives, please contact us at advocacy@parkinson.ca.

Giving Neuroscience Nurses the Tools for Success

Educating people with Parkinson’s and related healthcare specialists is one of Parkinson Society Canada’s (PSC) top priorities. That’s why PSC is proud to announce our first professional education workshop geared to neuroscience nurses at the 45th annual Canadian Association of Neuroscience Nurses (CANN) Conference in Banff, Alberta on June 3rd, 2014.

Lucie Lachance, Clinical Nurse Specialist in Movement Disorders at the Montreal Neurological Hospital at the McGill University Health Centre

Lucie Lachance, Clinical Nurse Specialist in Movement Disorders at the Montreal Neurological Hospital at the McGill University Health Centre

The two hour workshop will be delivered by expert presenter Lucie Lachance, a Clinical Nurse Specialist in Movement Disorders at the Montreal Neurological Hospital at the McGill University Health Centre.  The workshop will help nurses apply the Canadian Guidelines on Parkinson’s Disease (CGPD) to their clinical practice in the management of their Parkinson’s patients.

Topics range from early onset Parkinson’s 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 will utilize realistic scenarios that neuroscience nurses might encounter in everyday practice, teaching them how to work through clinical features of the disease as well as identifying interventions that would help maintain a higher quality of life for people living with Parkinson’s.

The Canadian Association of Neuroscience Nurses sets standards of practice and promotes continuing professional education and research. Members collaborate with individuals, families, interdisciplinary teams and communities to prevent illness and to improve health outcomes for people with or at risk for neurological disorders including Parkinson’s disease.

For more information, please contact Grace Ferrari, Education Manager at grace.ferrari@parkinson.ca.

Donald Calne Lectureship Awarded to Dr. Ali Rajput

Parkinson Society Canada (PSC) is proud to award Dr. Ali Rajput, Professor Emeritus Neurology, Royal University Hospital in Saskatoon, with the 2014 Donald Calne Lectureship. The lecture will be delivered on May 26th during the Canadian Association for Neuroscience’s (CAN) annual conference in Montreal, Quebec.

Dr. Ali Rajput, Professor Emeritus Neurology, Royal University Hospital in Saskatoon, is the 2014 Donald Calne Lectureship recipient.

Dr. Ali Rajput, Professor Emeritus Neurology, Royal University Hospital in Saskatoon, is the 2014 Donald Calne Lectureship recipient.

Dr. Rajput trained at the University of Michigan where he earned his Master of Science in Neurology. He joined the University of Saskatchewan in 1967, retiring from the university in 2002. He continues to pursue clinical practice and research.

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 discovery paves the way for further research to determine the nature of brain abnormalities which this gene defect produces,” says Dr. Rajput. “It also promises to help us find ways to detect Parkinson’s disease early, and to develop drugs which will one day halt the progression of the disease.”

About the Donald Calne Lecture
Each year, PSC recognizes the achievements of a distinguished Parkinson’s neuroscientist of international reputation with the Donald Calne Lectureship.  The honoree delivers a speech on the current state of Parkinson’s research, and often highlights their area of expertise.

Established in 2002, the award honours Dr. Donald Calne for his contributions to the Canadian Parkinson’s community as Professor of Neuroscience at the University of British Columbia and for his work as chair and long-time member of PSC’s Scientific Advisory Board.

Join us in Montreal
The annual CAN conference allows scientific and medical trainees to present their work and get valuable feedback from mentors and peers in their respective fields of research. The meeting will be held at the Montreal Hilton Bonaventure right in the heart of downtown Montreal.

Members of the international Parkinson’s community, including scientists, medical professionals, people with Parkinson’s and their families are invited to attend. Save the date for May 26, 2014 in Montreal. Space is limited. To RSVP contact Kathy Emirzian by email at Kathy.emirzian@parkinson.ca or call (416) 227-9700, ext. 3309.

Giving Back is a Way of Life: Spotlight on a Caring Community Partner

Hanif Balolia, founder and president of Agecomfort.com, had the best inspiration in life and in business: his parents.

Hanif Balolia, right, with wife Mira Chen co-founded AgeComfort.com.

Hanif Balolia, right, with wife Mira Chen co-founded AgeComfort.com.

“I wouldn’t be anywhere without my father,” says Hanif. “He taught me that you have to give back to those who are less fortunate, and not necessarily with financial support.  Time is good. Giving both is even better.”

His mother is also a hero.  Her father had Parkinson’s disease and Hanif remembers his parents talking about the condition when he was young.  He remembers his mother flying to East Africa to visit his grandfather often.  “My mother kept a lot to herself. She would be there for longer periods, sometimes for a few months. I know she carried the family burden,” recallsHanif.

“I recall his shakes and tremors, but I have nothing but great memories of him – he travelled with us on vacations and safaris. My memories are better.”

It’s his strong belief in family and giving back that led Hanif to reach out to Parkinson Society Canada for Parkinson’s Awareness Month in 2013.

Hanif always tries to find a way to give back to the community and encourages his colleagues and customers to bring awareness to a cause even if it doesn’t directly affect them.

“Our customers are caregivers and for them, helping their loved ones is extremely personal. At times, our customer service representatives have been moved to tears when speaking with caregivers who call in looking for products and assistive devices that can help their loved ones live better with chronic diseases like Parkinson’s,” said Hanif.

This April, Hanif encourages people to support the work of Parkinson Society Canada in a way that is meaningful to them, adding that people can make a difference. A thousand small donations can sometimes be greater than one large donation.

Message from the Editor

Welcome to the first issue of eParkinsonPost for 2014. Throughout the year, we will update you on our progress in key areas including our work in federal advocacy, updates from our National Research Program and highlights from funded projects, as well as returning events such as Parkinson SuperWalk in September and Parkinson’s Awareness Month in April.

Winners of our 2014 National Volunteer Awards will be announced earlier this year, coinciding with National Volunteer Week which runs April 6th to 12th. Nominations are open until March 31 so there’s still time to nominate an exceptional volunteer and recognize his/her contribution to the Parkinson’s community.

We check in with Dr. Barbara Connolly, associate professor at McMaster University’s Department of Medicine and past recipient of the Nora Fisher Clinical Movement Disorders Fellowship, to see how her medical practice has progressed as a result of support from our National Research Program.

Also in this issue, we share updates on Parkinson Society Canada’s new initiatives to support family doctors and other health professionals with resources to apply the Canadian Guidelines on Parkinson’s Disease in daily practice.  In addition to a series of webinars for physicians launched in February led by Canadian Parkinson’s experts, starting in April, doctors will have free access to a new online continuing education module.

Marina Joseph

Marina Joseph

And finally, the Donald Calne Lectureship is scheduled for May 26th. Mark your calendars and watch for details on how you can join us in Montreal. We’ll be announcing the 2014 recipient in March.

Our work is strengthened by your input. I invite you to comment on the individual stories in this blog as well as provide feedback and ideas for future articles.  Keep in touch and enjoy a wonderful year.


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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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