Message from the Editor

Welcome to the fall edition of e-Parkinson Post.

As we get back into the swing of regular routines, Parkinson support groups and educational programs across the country are gearing up for a new season of supporting and informing people with Parkinson’s and family members. We are able to offer these services and programs in part due to the commitment of so many of you who come out annually in September to raise funds at Parkinson SuperWalk. Your efforts also fuel the innovative research our funded researchers undertake to help ensure that people with Parkinson’s have the best quality of life possible while the global Parkinson’s community steadfastly works together toward a cure.

In this issue, we share with you the results of both the recent Parkinson SuperWalk and our latest research competition.

We also include an article which appears in September’s Hospital News, in our continuing efforts to alert the health professionals who work with people with Parkinson’s to the absolute importance of medication timing in Parkinson’s.

The advocacy report will show you how our ongoing dialogue with policymakers is paying off in much-needed funding and tax relief for people with Parkinson’s and other brain disorders.

Recently we added a section for Comments to e-ParkinsonPost and we would like to hear from you. Did you enjoy a particular article? Would you like to learn more about a subject we have covered or a program we offer? Please let us know what you think of the newsletter – what you like, what you think could be improved, what else you would like to see. You are among 8,000 e-ParkinsonPost subscribers and that number is growing. Your feedback will make this publication better. And if you really like it, pass this message along and tell two friends.

Remember, e-Post is one small part of the resources we have for you on our website. Visit www.parkinson.ca regularly. There is much more to explore.

We hope you enjoy this issue.

Marjie Zacks
Editor

Hope and determination drive Parkinson SuperWalk to success

Parkinson Society Canada congratulates and thanks all the many participants who came together  – walkers, volunteers and donors, bringing a spirit of hope to raise funds for Parkinson Society Canada at its annual Parkinson SuperWalk, the largest fundraising event for Canadians living with Parkinson’s.

“Parkinson SuperWalk is my way of connecting to people in our community living with Parkinson’s,” says Alain Garçeau, dedicated Parkinson SuperWalk participant, diagnosed at age 45. “On this day we honour those living with the condition and show gratitude to those like my wife and children who are such a tremendous source of support to me, and whom I cannot thank enough for their strength and love.”

Walkers of all ages, and even some four-legged canine friends, joined forces as they were cheered on by family members, loved ones and neighbours in the annual walk which has raised $2.4 million so far this September.

“Being heard, being understood and sharing one’s experiences can make a huge difference in the lives of people with Parkinson’s,” says Joyce Gordon, president and CEO of Parkinson Society Canada. “We want Canadians touched by Parkinson’s to know that there is a huge network of support, where people can speak freely about their condition with someone who understands; we want Canadians with Parkinson’s to know that they are not alone.”

Proceeds from the event allow Parkinson Society Canada to fund a broad range of resources and support, in person, in print and online, for individuals, like Alain, to help them along their Parkinson’s journey, in communities all across Canada.

Parkinson Society Canada gratefully acknowledges the generosity of Parkinson SuperWalk national sponsors: Teva Canada Innovation, Naturegg, Sharp AQUOS® and Roots.

Online donations for Parkinson SuperWalk will continue to be accepted until October 3, 2011 at parkinsonsuperwalk.ca.

Walking for people living with Parkinson’s

“Months after meeting a new friend whose grandmother has Parkinson’s, I found myself taking part in Parkinson SuperWalk at McGuire Lake Park. Together with dozens more people dressed in the year’s event T-shirt, we walked not only to raise awareness, but many had raised funds for the Parkinson Society. Many from the Sicamous Eagles (hockey team) were present, helping seniors from the surrounding seniors’ homes, as they pushed their wheelchairs around the small lake. Informational pamphlets were widely available to anyone who wanted to learn more about Parkinson’s disease or Parkinson Society and its mission. Refreshments were available to participants who stood around afterwards to mingle and converse, many of them sharing stories about how Parkinson’s had touched their lives.” New Parkinson SuperWalk supporter and Facebook fan, Ben Stewart of Salmon Arm, B.C.

Read more of Ben’s story in his blog post (original content available in English only):http://www.shuswapgroove.com/arts-culture/community/parkinsons-superwalk.html.

National research program – 28 new awards

Together with our partners, Parkinson Society Canada is proudly supporting 28 new grant, fellowship and student awards, as of July 1, 2011:

  • 12 Pilot Project grants
    (3 funded by Parkinson Society Ottawa, Parkinson Society Southwestern Ontario, and Parkinson Society Quebec)
  • 3 New Investigator Awards
  • 2 Basic Research Fellowships
  • 1 Clinical Movement Disorders Fellowship
  • 1 Clinical Research Fellowship
  • 7 Graduate Student Awards
  • 1 Psychosocial Doctoral Award, in partnership with the Canadian Institutes of Health Research (CIHR) – Institute of Neurosciences, Mental Health & Addiction
  • 1 Psychosocial Research Grant, in partnership with CIHR – Institute of Neurosciences, Mental Health & Addiction

Click here for more information on these awards, including project titles and amounts.

20 participants needed for study of Parkinson’s diagnosis disclosure in the workplace

This research study is looking at the choices people with Parkinson’s make regarding disclosing their diagnosis in the workplace – disclosure vs. non-disclosure, timing and reasons, to gain a better understanding of the issue for future education and advocacy efforts.

In Phase I, the study was piloted by Parkinson Society Central & Northern Ontario, in January 2011, with participants from Ontario. Phase II, launched in June, has expanded the research to include people from communities across Canada. 20 more participants are needed.

For details and contact information, see Disclosure of Parkinson’s disease diagnosis within the workplace, Phase II.

Medication timing critical in Parkinson’s disease

(This article appears in the September 2011 edition of Hospital News)

A one-week disruption of his Parkinson’s medication schedule resulted in nearly three months of distress for Lorne Collis after he returned home from a brief hospital stay for a kidney ailment in December 2009. “My tremors were uncontrollable,” says Collis. “My restless legs syndrome was extremely uncomfortable. It took about three months of getting back on my medication routine and exercising before my body felt normal again.”

Get it on timeIt’s a common experience. People with Parkinson’s enter hospital for reasons that may or may not be related to Parkinson’s and find that the hospital’s drug rounds do not coincide with their own medication regimen. However, in Parkinson’s, a minor change in medication timing can have major negative effects on symptom management and general recovery.

The uneven release of dopamine can result in a person suddenly not being able to move, get out of bed or walk down a corridor. It can also lead to serious complications such as aspiration pneumonia and bowel obstruction.

“When Parkinson’s symptoms get out of control, it tends to exacerbate the reason why the person is in hospital.” says Barbara Snelgrove, director of education and support services for Parkinson Society Canada. “It also makes care of the person more difficult for healthcare professionals.”

To address these issues, Parkinson Society Canada is the first Parkinson’s organization in North America to introduce Get it on time, an innovative education and awareness program designed to ensure that people with Parkinson’s receive their medication on time, every time, whether they are in emergency rooms, hospital wards, or long-term care facilities.

Get it on time was developed and implemented successfully by Parkinson’s United Kingdom. Parkinson Society Canada has adapted it to the Canadian healthcare environment, with financial support from the Canadian Institutes of Health Research and the Canadian Patient Safety Institute.

Launched in January 2011, the program uses the voices of people with Parkinson’s and their care partners to target the Get it on time message to nursing staff and front line health professionals through in-service training and communication tools such as information kits, posters and Get it on time stickers to attach to patients’ charts or care plans.

The program also has a self-advocacy component, encouraging people with Parkinson’s to bring their own medication to the hospital or care facility and inform staff about their precise medication needs, using the Get it on time medication card.

“We’re approaching this on many layers,” says Debbie Davis, chief executive officer of Parkinson Society Central & Northern Ontario, one of the regions piloting the national program. “We know that it can improve quality of life for people with Parkinson’s while they are in hospital or in a care facility. We also know that the people caring for them will have an easier time if they are educated as to what Parkinson’s is and what they can do to make people’s lives better.”

To date, over 50 Get it on time presentations have been made to long-term care facilities, retirement residences and Parkinson’s support groups in Ontario. The campaign will expand to Ontario hospitals, this fall.

Get it on time is also being piloted in communities in Saskatchewan. In French, it is called Le prendre à temps. Parkinson Society Canada is seeking funding to roll out the program nationally.

Lorne Collis has already benefited from Get it on time. In hospital recently for complications relating to Crohn’s disease, he says, “Because of my knowledge of the Get it on time program, I advocated for myself. I said, ‘these are the times I take my pills – 6 a.m., noon, 5 p.m., 9 p.m.’ One nurse had a relative with Parkinson’s, so she understood. She spoke to the charge nurse. They allowed me to take my own pills at my scheduled times. When I left hospital, this time, my Parkinson’s symptoms were fine and totally under control. It made a huge difference.”

For more information about Get it on time, contact info@parkinson.ca.