Going to bat for people with Parkinson’s

James B.
Eastern Ontario

James B. received valuable advice from PSC’s National Information & Referral Program
James B. received valuable advice from PSC’s National Information & Referral Centre.

When my partner and I bought a property last December, we took out a mortgage with a major bank and were offered mortgage protection. To my surprise, I learned that my application for mortgage insurance was turned down. The reason? Because I have Parkinson’s.

Since I have worked in the insurance industry and know that many decisions are based on life expectancy, I challenged the company’s assumption that Parkinson’s would shorten my life. They said they needed proof from my doctor, so I asked my neurologist to supply a letter.

However, I also called PSC’s Information and Referral Centre. I explained the situation and said that this seemed like discrimination against people with Parkinson’s. She agreed that we should do something about this. She wrote a letter to the insurance company (see below) highlighting recent research that confirms that life is not necessarily shortened by Parkinson’s. She also sent them a copy of PSC’s new Progression of Parkinson Disease information sheet.

Weeks later, I got the good news that the company reversed its original decision and approved both my partner and me for mortgage insurance. I believe that the Parkinson Society’s advocacy, on my behalf, played a big part in bringing about that change.

Excerpt from letter sent by PSC in support of mortgage insurance application:

On behalf of Parkinson Society Canada, Central Northern and Ontario Region, I am taking the liberty of sharing with you our education resource on the Progression of Parkinson’s disease (a copy of which is attached to this letter).

Parkinson’s is a complex neurological condition. While symptoms will worsen over time, it is difficult to estimate how quickly or slowly it will progress in each person. Depending upon age of onset, general health, and symptom management, a person with Parkinson’s can live an active life. In most cases, one’s life is not shortened.

Research as current as March 9, 2009 concluded the survival rate among people with Parkinson’s is the same as for the general population. More information on the research can be found online at www.pdf.org/en/science_news.

Support groups: a place for learning and sharing experiences

Hazel Berkan
Regina, Saskatchewan

Hazel & Floyn Berkan
Hazel & Floyd Berkan

My husband Floyd and I were encouraged to join the Regina Support Group by the education coordinator, Else Manz, who was our neighbour at one time.

In the two years that we have been members, we have found the monthly meetings to be very helpful. We like the fact that they bring in speakers, including neurologists, so we’re able to ask questions and get answers on topics we’re interested in, such as diet or what foods interact with Parkinson’s medications.

The Parkinson Society has helped me understand Parkinson’s disease better and get support. Even talking to the doctor is different because when you’re at the meetings you hear about other people’s experiences, so you know the kinds of topics to raise with the doctor and what questions to ask.

My husband goes to the exercise program for people with Parkinson’s. As a caregiver, I get to participate as well. The physiotherapist changes the routines from week to week so we get a good workout all-round. The exercise program is something my husband and I can do together and we both benefit.

Betty Lou Earl
Regina, Saskatchewan

Caregiver Betty Lou Earl with her mother Cecilia is grateful for ongoing support from Parkinson Society Saskatchewan.
Caregiver Betty Lou Earl (left) with her mother Cecilia, is grateful for ongoing support from Parkinson Society Saskatchewan.

When my mother was diagnosed over 10 years ago, she was functioning on her own and independent. But as her Parkinson’s progressed, I felt I didn’t know how to help her, so I looked in the phone book to see if I could get connected with a support group. That was about five years ago.

For me, the number one reason for being in a support group is the education – the fact that you learn how to cope with the disease and how to help the person as much as you can, as a caregiver. Today, I’m just so much more knowledgeable about Parkinson’s.

Right now, my Mom’s throat and swallowing are starting to be affected but I have learned that it’s the Parkinson’s that is causing this so I’m able to talk to her about it and help her. Also, my Mom is in a home now, and when she is having difficulties, I feel confident that I can talk knowledgeably to the healthcare staff and sometimes even give them information.

But education is just one part of it. The support group has become a major part of my life because everyone there understands what I’m going through and I understand what they’re going through. Just having that connection is very comforting.

Help that is just a phone call, email or click away

National Information & Referral Centre

Since Parkinson Society Canada initiated the National Information & Referral Centre – 1-800-565-3000 – in 2001, over 12,000 people have been directly counselled and given up-to-date information on Parkinson’s disease, the latest research findings, treatment and care management.

In addition, the Parkinson Society Canada’s  bilingual website,  www.parkinson.ca, receives thousands of visitors every year who access educational, support and advocacy materials and use the site as a gateway to their regional Parkinson Society for direct service and ongoing support. The website is growing in popularity every month, and additional educational resources are added regularly.

Parkinson’s not only affects over 100,000 Canadians diagnosed with Parkinson’s, but affects their friends, families, care partners, health care professionals and the greater community. Every one of these groups needs specific and highly tailored information on Parkinson’s, treatment, care management and recent research findings. The National Information & Referral Centre ensures this critical information is available, both through direct contact by email or phone, or through the PSC website.

The National Information & Referral Centre allows people living with Parkinson’s to empower themselves by learning more about the disease. As one caller, diagnosed with Parkinson’s at age 53, described: “Being informed gave me a sense of control at a time when everything seemed to be out of control”.

Since it was launched in 2001,  clients have changed the way they interact with the Centre: email inquiries increased by 400% from 2005 to 2008, and the majority of people who contact  us learned about the resource from the PSC website. To accommodate these changes, PSC re-designed its national website in 2008, resulting in traffic increasing 100% in 2009. Over the past 8 months, the Support and Education section has received over 7,000 hits: visitors are downloading pamphlets, brochures, watching our webinars and making inquiries to the general information mailbox. Visitors are also using the national site as a gateway to finding support services and programs in their communities.   In the past 8 months, over 27,000 visitors accessed their regional Parkinson Society.

Since 1965, Parkinson Society Canada has been the national voice of Canadians living with Parkinson’s, working to bring about change in government policies and decisions that affect the lives of people with Parkinson’s and their families. Whether it’s at the federal, provincial or local level, we also work to ensure that you have opportunities to speak out and make your own individual voices heard.
Yvon Trepanier
Yvon Trepanier Chair, National Advocacy Committee

Advocacy
As part of our promise to represent people with Parkinson’s, we brought the World Health Organization’s Global Declaration on Parkinson’s Disease to Canada in 2003. This charter of rights for people with Parkinson’s calls on governments to acknowledge that people with Parkinson’s have the right to:

  • be referred to a doctor with a special interest in Parkinson’s disease;
  • receive an accurate diagnosis;
  • have access to support services;
  • receive continuous care; and
  • take part in managing the illness

The document has been signed by numerous members of Parliament and hundreds of members of the Parkinson’s community. Its principles are embedded in our support programs across the country.

Our long history of speaking on behalf of the over 100,000 Canadians living with Parkinson’s includes visiting Ottawa on numerous occasions to lobby for recognition of the need to change legislation and policies that affect the day-to-day lives of people with Parkinson’s.

We have identified key policy issues. We have also advocated to have stem cell legislation passed in Canada and are currently lobbying the federal government to create legislation protecting against genetic discrimination.

Through our national advocacy efforts and national communications strategies we are working with our regional Parkinson organizations to expand our reach and influence, grow our networks and continue to play a leadership role.

We have been instrumental in launching Neurological Health Charities Canada (NHCC) and are encouraged by the fact that, through our advocacy efforts at PSC and our leadership efforts on NHCC, we will continue to attract the attention of government.

SuperWalk for Parkinson’s Raises Record $2.46 Million

SuperWalk for Parkinson’s raised a record $2.46 million this year. Lauren Collins, star of Degrassi: The Next Generation, unveiled the new look SuperWalk for 2010 at this year’s Toronto walk.

“I want my dad to know how much I support him in his every day struggle with this disease. He’s my hero and I am 100 per cent behind him,” said the 23 year old actress. Lauren’s father, Stan Collins, was diagnosed with Parkinson’s just after she was born. “I have never known a time when my dad was not struggling with this debilitating disease. Every day presents new challenges with balance, walking, speaking. I want to help any way I can,” said Collins.

Thirteen thousand walkers turned out across the country to support Parkinson Society Canada to raise funds for education, support, research and advocacy on behalf of the over 100,000 Canadians who have Parkinson’s.

“This has been the biggest turnout ever,” said Paul McNair, Associate National Director of SuperWalk. “We are very excited to launch our re-brand for next year which will be the event’s 20th anniversary.”

Photo Gallery>> 

Star of Canadian television hit Degrassi: The Next Generation, Lauren Collins, unveiled the new look for SuperWalk 2010 at the Toronto SuperWalk for Parkinson’s Sunday. Collins, left, walked with her mother, Sari, for her father who has been living with Parkinson’s for over 20 years.
Star of Canadian television hit Degrassi: The Next Generation, Lauren Collins, unveiled the new look for SuperWalk 2010 at the Toronto SuperWalk for Parkinson’s Sunday. Collins, left, walked with her mother, Sari, for her father who has been living with Parkinson’s for over 20 years.
Global Television's Bill Coulter left leads off Toronto SuperWalk's largest turnout ever, with Celebrity Lauren Collins (right) under sunny skies.
Global Television's Bill Coulter left leads off Toronto SuperWalk's largest turnout ever, with Celebrity Lauren Collins (right) under sunny skies.
PSC President & CEO Joyce Gordon and celebrity Lauren Collins with mom Sari Collins with the