My Family Lives with Parkinson’s Video Contest now open

family_lives_with_parkinsonDo you want to tell your Parkinson’s story? Do you want an opportunity to give back to the greater Parkinson’s community? And, do you want a chance to win valuable prizes?

Then all you have to do is tell us your story on video, in three minutes or less.

Parkinson Society Canada is holding a video contest as part of Parkinson’s Awareness Month this April. This year we are celebrating how ‘Families Face Parkinson’s Together’ and we are looking for video submissions from across Canada about your personal Parkinson’s experiences that involve your family members and caregivers.   Make us laugh, make us cry, or inspire us, but most importantly, tell your story so that other families like yours don’t feel alone.

We will share the winning video submissions online so other people with Parkinson’s can view and learn from them. A panel of Parkinson’s judges will select their top choices and Parkinson Society Canada will showcase the winning videos throughout 2013.

Here’s what you could win:

1st Prize
A Sharp 42 inch LED Flatscreen TV   – approximate retail value $750 CDN

2nd Prize
Paid registration to the World Parkinson Congress 2013 in Montreal – approximate retail value of $350 CDN

3rd Prize
A Roots Canada prize pack- approximate value of $250 CDN

How to enter:

Step#1
Get together with family or friends to film your video. Share how your family experiences Parkinson’s in 3 minutes or less.

Step #2
Submit your video using www.transferbigfiles.com.

Step #3
Download/Sign our ‘Contest Likeness Release’ and email your signed consent form (fillable PDF form) to us, allowing us to share your video online.

The contest opens to residents of Canada on March 25th, 2013 at 12:00:01Eastern time and runs for four weeks. All submissions received by April 22nd, 2013 by 11:59:59 will be eligible to win. See our ‘Video Contest Rules’ for full details.

This is your chance to help others with Parkinson’s and win a prize for your efforts. Join us for Parkinson’s Awareness Month this April and share your story.

Carrying on the caregiver role for Parkinson’s

Jim Long
Jim Long

When Jim Long’s sister Pat was diagnosed with early onset Parkinson’s disease in 1972, he wasn’t overly involved in her care. Pat was only 45 years old at the time and she managed her Parkinson’s symptoms and personal affairs with no assistance. As time went on, however, Jim took on more responsibility to help his sister maintain her level of care and quality of life.

“As she got older and more ill, I felt I needed to help her when I could, and became more involved with her,” Jim says. “I never felt I was being taken advantage of, because it was natural for me to want to help her cope.”

Jim, a lifelong housing developer in the Toronto area and father of four, wasn’t involved in Pat’s physical care, but he managed most of her financial planning and administrative tasks. He also took her to and from medical appointments and would work with medical personnel to make sure she adhered to her new program and medications. In addition he hired care staff to enable her to continue living semi-independently at home and at the
family Balsam Lake cottage where she spent her summers.

“I still have fond memories of the projects she had to keep busy,” he smiles. “She grew herbs which she used for the gourmet meals she enjoyed. She also made beautiful collages of animals, flowers, and scenes which she clipped from magazines and framed. There were times when she had files and papers all over the place. Sometimes her dyskinesia (involuntary movement) was very bad, but other times she could cut flowers out of a magazine very precisely. Some days were better than others, but gradually she lost all of these abilities.”

In 1997 Pat had a small stroke and was admitted to the Toronto East General Hospital and lost her independence forever. Jim was responsible for finding a palliative care home for her and hired extra staff to help her with her daily care.

Continuing Great Work for Great Causes

In February 2005, Pat passed away, but Jim carried on his charity work with Parkinson Society Canada in her memory. Throughout their journey together they both felt Parkinson Society Canada was behind them 100 per cent. Jim collected print material and information from Parkinson staff to improve his knowledge about the organization. He wanted to be able to give this information to anyone he came in contact with in the greater Parkinson community – his own brand of health advocacy.

Jim continues to help the greater Parkinson’s community by maintaining a leadership role with the annual “Hope in Bloom” campaign where tulips are sold with the proceeds going to Parkinson Society Canada.

Jim was recognized with a Queen Elizabeth II Diamond Jubilee Medal for his outstanding volunteerism and contributions over more than two decades to Parkinson Society Central and Northern Ontario.

Advice from Experience

“Learn what you can, be more patient with those with Parkinson’s and have more compassion for them. The more organized and knowledgeable you are, the better off you’ll be helping a family member or friend,” he adds.

Following these helpful pieces of advice could assist any caregiver lead a healthier relationship with the person with Parkinson’s in their life. For additional information, support and printable resources please visit www.Parkinson.ca and connect with offices across the country to find educational workshops, conferences and seminars.

Editor’s note: The newly published Canadian Guidelines on Parkinson’s Disease recommends that families and caregivers should be given information about the condition, entitlements to care assessment and available support services. To download a copy of the Guidelines, visit the website at www.parkinsonclinicalguidelines.ca.

Building a Better Future is A Family Affair

Louise and Diana Rachlis
Louise and Diana Rachlis

Being diagnosed with Parkinson’s disease at the ripe young age of 35 was more than difficult for Diana Rachlis, but with the help of her family, she’s living a full life and is truly excited about the future.

Diana, who also suffers from Dystonia and Celiac disease, was emotionally drained after her Parkinson’s diagnosis and spent the better part of a year in various states of depression.

She now lives life with a different attitude and a better outlook for her future, which in turn is helping improve her Parkinson’s symptoms. It all started with a little help from family and some personal motivation.

“I said to myself ‘I’m not going to let Parkinson’s takeover my life. I’m not going to stay home all day and worry that my foot is going to go bad (from Dystonia).’ You’ve got to be positive,” Diana said.

Today, Diana has ample support to keep going from family, friends and her fiancé Daniel Harvey.

“My fiancé, Daniel, and my family have been very supportive. My dad, Lorne, is more there for emotional support. He was the one that told me when I had tremors for the first time that I should go check it out,” Diana said.

Diana’s mother Louise and her sister Naomi have both taken it upon themselves to get personally involved in the greater Parkinson’s community. Naomi, a Bachelor of Fine Arts graduate, has taken her existing skills and enrolled in a Masters of Music Therapy program with specific prerequisites for enrollment.

“I will graduate in September 2014 with a Masters in Music Therapy. The music theatre degree I have is pretty rare. Only a handful of people have completed it. You need a music degree to get into the Music Therapy field. After 10 years of preforming and schooling I got in.”

Louise Rachlis is also involved in many facets of Parkinson Society Canada as well as her daughter’s day to day care. She does her part to ensure Diana has a healthy and full life for as long as possible.

“Once Diana was diagnosed three years ago I wanted to help. I was asked to be on the board of Parkinson Society Ottawa,” said Louise.

Diana feels she has a lot to be thankful for and a lot to look forward to.

“I’m very excited. Daniel and I are getting married on April 14th of this year. My sister is going to be my Matron of Honour and my brother is going to be Master of Ceremonies. I have the best family in the world,” Diana mused.

Inspiring Others

The Rachlis’ have learned a lot from each other and their collective journey with Parkinson’s. They feel their experiences can help others in similar situations.

“Keep motivated to do any kind of exercise; anything that keeps you moving. It can relax you, help with symptoms and give you more positive energy,” Diana reinforced.

“Don’t make it about you,” Naomi added. “Be there as a force of strength and support for your relatives and listen to what they’re saying. Happiness is a choice and Diana choses happiness. That’s pretty awesome.”

“Stay positive, try to be around positive people and those that are a good influence,” Diana urged. “Don’t let Parkinson’s get you down and control your whole life.”

April is Parkinson’s Awareness Month. For additional information and printable resources visit www.parkinson.ca  or call 1-800-565-3000.

A Voice for Canadians Living with Neurological Conditions

On March 5, 2013, Parkinson Society Canada (PSC), as a member organization of Neurological Health Charities Canada (NHCC), participated in a lobby day on Parliament Hill. “The purpose of NHCC’s Hill day was to increase much-needed investment into neuroscience research, establish the framework for a national brain strategy, and ensure all Canadians are protected from genetic discrimination,” said Vanessa Foran, Vice President, Public Affairs and National Programs, Parkinson Society Canada.

In total the NHCC presented four recommendations to policy decision makers including Ministerial staff, Members of Parliament, and Senators in order to aid the more than 5.5 million families in Canada who are touched by a neurological condition on a daily basis.

Recommendation #1: Invest $3 million in NHCC over three years towards developing a pan-Canadian action plan for the brain

This funding would be used to develop a comprehensive framework to improve quality of life and care for Canadians affected by neurological conditions.

That framework would include:

  • an inventory of all research, policies and program initiatives that impact families living with neurological conditions from the past three years.
  • stakeholder engagement with health care workers, health professionals, researchers and policy makers
  • synthesising information into a framework for an action plan with measurable outcomes
  • evaluation plans

Recommendation #2: Establish a Centre of Excellence for Neurodegenerative Networks

Creating a Centre of Excellence for Neurodegenerative Networks will allow groups such as Parkinson Society Canada and other NHCC members to provide better advocacy and make greater strides in research discoveries for neurodegenerative diseases on a whole by building on collective knowledge.

With a larger public profile and greater financial support from the government the Centre of Excellence could equip researchers with enhanced networking capabilities and the ability to make advancements in treatments for neurological diseases.

Recommendation #3: Create a Strategy for Patient-Oriented Research (SPOR) focused on neurological conditions

Patient-oriented research networks bridge the gap between research evidence and health care practice by conducting clinical trials to ensure treatments and medications are safe for public use. SPOR Networks are a collaboration of patients, health professionals, decision makers, health researchers and their partners from across Canada.

The primary objective of SPOR Networks is to generate evidence and innovations that advance current practices while making policy changes that lead to measurable improvements in patient. The ultimate goal is to establish a SPOR that focus on neurological issues such as PD to complement existing research from labs.

Recommendation #4: Promote Genetic Fairness for Canadians

Canada is one of the few developed countries without legislation to prevent the use of genetic information for non-health and non-research purposes. All other G8 countries have some form of legislative protections, including the United States, which passed the Genetic Information Non-Discrimination Act (GINA) in 2008, banning health insurers and employers from using a person’s genetic information.

NEUROLOGICAL HEALTH CHARITIES CANADA (NHCC), chaired by Joyce Gordon, CEO of Parkinson Society Canada, is a collective of organizations that represent people with chronic, often progressive, neurological, disorders and injuries in Canada. NHCC’s role is to provide leadership, evaluating and advancing new opportunities for collaboration specific to advocacy, education and research projects, related to brain health.

Click this link to learn more about genetic discrimination in Canada.