Get ready,
Summer 2013
Get Set, GO! SuperWalk 2013 This year promises to be better than ever! Parkinson SuperWalk is our largest national fundraiser and takes place each year in September. Last year, SuperWalk raised 3.2 million dollars across Canada, and the more than 3,000 walkers in 25 locations across the Central & Northern Ontario Region raised more than $920,000 to help ease the burden and find a cure! Now it’s time to get ready for our 2013 SuperWalk. This year, our walks take place on September 7 and 8, 2013. Volunteers in cities and communities throughout the region help raise funds for research, advocacy, education, and support services through individual pledges and corporate sponsorship.
Inside....
Who are You Walking For? SuperWalk 2013 Dance and Tai Chi Make Hay While the Sun Shines A Tradition of Giving 2013 Volunteer Awards Young & Early Onset Parkinson’s Community Cut-a-thon Canadian Guidelines World Congress
This year, Parkinson Society Central & Northern Ontario will be hosting a Parkinson SuperWalk at 30 locations across the region. Please see page 5 for a walk location near you.
Parkinson Society Central & Northern Ontario PSCNO: What We Do Support Services PSCNO ADVISORY BOARD John Parkhurst Sherri Brand Rebecca Hogan AB Rustin Dr. Gordon Hardacre Stephanie Bruder Kate Pitfield Larissa Ruderman Jackie Ruderman
Chair Vice Chair Treasurer Member at Large Member at Large Member at Large Member at Large Member at Large Member at Large
STAFF Debbie Davis, Chief Executive Officer 416-227-3373 /800-565-3000 ext. 3373
debbie.davis@parkinson.ca
We provide consistent and excellent support to people living with Parkinson's and their families to make their lives better. Constantly updated web site Information & Referral line that fields approximately 6,000 calls and emails every year and sends out personalized information packages Individual support as required Regional newsletter sent out free of charge three times a year Support group network—40+ in the region—including newly diagnosed, young onset, and carepartner groups Fundraising and awareness events In-service sessions provided to health care professionals, specifically the Get it on time program currently intended to educate staff at Long Term Care (LTC) facilities about the need to get medication on time—every time
Naseem Jamal, Community Development Coordinator Toronto 416-227-3377 /800-565-3000 ext. 3377 naseem.jamal@parkinson.ca Diane Newman Reed, Community Development Coordinator East 800-565-3000 ext. 3315 diane.newmanreed@parkinson.ca
Education Our goal is to bring excellent seminars and conferences to different areas in the region so that this information is readily available. We strive to provide four to six sessions each year in addition to the smaller sessions offered during support group meetings.
Karen Dowell, Community Development Coordinator West 800-565-3000 ext. 3376 karen.dowell@parkinson.ca Karen Boyer, Community Development Coordinator North 705-645-9513/800-565-3000 ext 3317 karen.boyer@parkinson.ca Amanda Stanton, Community Development Coordinator Central 416-227-3371/800-565-3000 ext. 3371 amanda.stanton@parkinson.ca Louise LeBlanc, Coordinator of Volunteers, Toronto 416-227-1200/800-565-3000 ext. 3304
Advocacy Our Ontario-wide Advocacy Committee has the following objectives:
louise.leblanc@parkinson.ca
Influence the behaviour of key government officials and agencies in support of people living with Parkinson's Influence the behaviour of Ontario MPPs in support of people living with Parkinson's Strengthen the scope and capacity of the Ontario Advocacy Committee Ensure consistent, coordinated advocacy communications across Ontario Build strong relationships with the Local Health Integration Networks across Ontario
Sandie Jones, RN, Coordinator, Client Services and Education 416-227-3375 800-565-3000 ext. 3375
sandie.jones@parkinson.ca
Robert TerSteege, Information & Referral Associate 416-227-3372/800-565-3000 ext. 3372
robert.tersteege@parkinson.ca
Stella Recchiuti, Office Manager 416-227-1200/800-565-3000 ext. 3301
stella.recchiuti@parkinson.ca
Lorelei Wilkinson, Manager, Major and Planned Giving 416-227-3378/800-565-3000 ext. 3378
lorelei.wilkinson@parkinson.ca
Kim Murdoch, SuperWalk and Event Coordinator 416-227-3374/800-565-3000 ext. 3374 Jon Collins, Manager, Programs and Events 416-227-3370/800-565-3000 ext. 3370
kim.murdoch@parkinson.ca
Research
jon.collins@parkinson.ca
Parkinson Society Central & Northern Ontario fully supports the National Research program and sends all research donations to support this program.
Alineh Haidery, Communications Coordinator, Ontario 800-565-3000 ext. 3318 alineh.haidery@parkinson.ca
The LiveWire newsletter is published to provide helpful information to people affected by Parkinson’s in Central & Northern Ontario. It is not meant to provide medical advice; readers should contact their doctors in all matters relating to health concerns and/or medication. We welcome your feedback on current and past issues, as well as suggestions and submissions for future issues. lf you have a story, a poem, or an article that you would like to submit for editorial consideration, please email the editor at livewire.editorial@parkinson.ca. Next submission deadline is October 11, 2013. LiveWire is offered in both hardcopy and electronic form. If you are reading this copy and would like to be added to our mailing list, or if you would prefer to receive the electronic edition, please contact livewire.subscriptions@parkinson.ca to be added to our email notification list or call 800-565-3000 ext. 3372.
LiveWire
Parkinson Society Canada (PSC) strives to make an impact on the Canadian Parkinson's research community by working as investors in Canadian Parkinson's research potential. By funding meaningful and innovative projects and promising young researchers in their professional development, PSC aims to encourage continued growth and revitalization in the fields of Parkinson's research in Canada. PSCNO could not fulfill its mission to ease the burden and find a cure without the generosity of its donors and volunteers! To help ease the burden and find a cure, call 800-5653000 ext. 3378 or visit www.parkinsoncno.ca to make a onetime or monthly donation. Thank you for your continued support!
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Summer 2013
SuperWalk 2013
Who Are You Walking For? Each year across our region, thousands of community members take part in our Parkinson SuperWalk. Each person walks for his or her own reason. That’s why, at our walks this year, you’ll see “I’m walking for” stickers, which will allow people to share their inspirational message: “I’m walking for hope, for a cure, for my father,” etc. We’re excited to share some of their reasons for walking and the stories behind them. We aren’t able to capture all of the inspiring stories throughout our Region, however please read just a few—and join these walkers on September 7 and 8. Margot Friedman, the daughter of Jerry Friedman—who the Toronto Parkinson SuperWalk is named after, has been a dedicated walker in memory of her father. She truly embodies this year’s theme: Families walk with hope together. Margot and her extended family walk in honour of Jerry—their father, grandfather, husband, and friend. Margot’s son, JJ, is a budding philanthropist in his own right, following in his mother’s and grandfather’s footsteps; coordinating a SuperWalk campaign and encouraging others to support the Society, including directing all gifts from his Bar Mitzvah to support PSCNO. This year, Margot was recognized by the commercial real estate industry's NAIOP Rex Awards for her philanthropic support of the Society through her SuperWalk efforts. Josie-Giorgio Sestito has been organizing a variety of events in support of SuperWalk for 10 years, raising more than $15,000. The family takes part in support of Josie’s grandmother, Maria Servello, who was diagnosed with Parkinson’s at 58. “We are extremely LiveWire
proud to be a part of such wonderful events in memory of my grandmother, and in honour of all those who are suffering or know someone who has suffered from this debilitating disease,” says Josie. This year, she continued with her annual casino fundraiser—a bus packed with supporters who travel to Casino Rama for a day of entertainment, and who make donations to PSCNO along the way. Peter Pallotta, John Scaini, and Marilyne Berman have been PSCNO volunteers for a number of years, selling tulips and raising Parkinson awareness. Recently, they successfully lobbied Vaughan City Council to ensure that April be proclaimed Parkinson Awareness Month, and also to secure free meeting space for their support group. Vaughan City Council overwhelmingly responded by providing a storefront location for the group to hold regular information sessions, drop-ins, exercise, and group meetings. This fall, Peter, John, Marilyne, and friends of the group are hoping to parlay council support into fundraising success. They’ll be hosting the inaugural Vaughan Parkinson SuperWalk.
Bill and Jean Gardner
Bill and Jean Gardner are walking in a new location as well. The Gardners have supported Parkinson SuperWalk in CNO for many years, as part of Team Billy. Last year, their team Page 3
raised more than $11,000, through a combination of personal pledges, events, and canvassing outside local establishments. This year, they’ll join The Masseys of Northumberland and The Northumberlands, among others, at the Northumberland Parkinson SuperWalk in Cobourg. Mariette Rains is one of several support group leaders who decided to take fundraising into her own hands. There weren’t any official walks near her group in Timmins, so Mariette and the Timmins support group decided to make the event a part of their group meeting in September. The Timmins group contributed $1,400 to Parkinson SuperWalk last year, a significant increase in the walk’s second year. They were one of five Support Group Walks in 2012; this year, there are nine Support Group Walks taking place throughout the region (Haliburton, Huntsville, Kirkland Lake, Manitoulin Island, Orillia, North Bay, Parry Sound, Sault Ste. Marie, and Timmins), providing their members a chance to join the fun and make a difference. There are many stories and each of our walkers has his or her own. As you can see, there is no one true fundraising model. Each of the walkers profiled here has his or her own method, and they all enjoy the process. Share yours with us online via Facebook and Twitter, or join us on walk day and let us know…who are you walking for? For more information on how you can get involved, please contact Amanda Stanton at 800-565-3000 ext. 3371 or amanda.stanton@parkinson.ca
Summer 2013
SuperWalk 2013
Register Now! WWW.PARKINSONSUPERWALK.CA Fundraising Tool Kit Looking to kickstart your fundraising? Please visit www.parkinsoncno.ca for useful tools and resources, such as sample pledge letters, fundraising tips, and our NEW Team Captain’s Guide!
200 in 10
How to raise $200 in 10 days Raising $200 is not as difficult as you may think. Below is a sample list of how to raise $200 in 10 days. Day 1: Put in your own $20 donation. Day 2: Ask your spouse/parents/sibling for a $20 donation. Day 3: Ask a service club or an organization you are a member of for a $20 donation. Day 4: Ask a business contact or old employer for a $20 contribution. Day 4: Ask a friend for a $20 donation. Day 6: Ask a relative for a $20 donation. Day 7: Ask your neighbour for a $20 donation Day 8: Ask your doctor, pharmacist, or dentist for a $20 contribution. Day 9: Ask a church/temple (or other group) member for a $20 contribution. Day 10: Ask a local merchant for a $20 contribution.
You have just raised $200! LiveWire
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Summer 2013
SuperWalk 2013
Find a Parkinson SuperWalk near you! Saturday September 7
Sunday September 8
Alliston: Riverdale Park
Barrie: Heritage Park
Belleville: Zwick’s Centennial Park
Brampton: South Fletcher’s Sportsplex
Bracebridge: Monck Public School
Burlington: Burlington Seniors’ Centre
Collingwood: Harbourview Park
Durham Region: Ajax Rotary Park
Guelph: First Christian Reformed Church
Hamilton: St. Peter’s Hospital
Kingston: Lake Ontario Park
Markham: Fred Varley Art Gallery
Mississauga: Living Arts Centre
Newmarket/Aurora: Fairy Lake
Peterborough: Riverview Park & Zoo
Niagara Region: Welland Canals Parkway, Lock 3
Sudbury: Delki Dozzi Park
Northumberland: Cobourg District Collegiate Institute E.
Thunder Bay: Intercity Shopping Centre
Toronto: Earl Bales Park Vaughan: Vaughan City Hall
Support Group SuperWalks Haliburton: Haliburton Highlands Family Health Team Office (Wednesday September 11) Huntsville: Faith Baptist Church (Monday August 26) Kirkland Lake: Kinross Pond Walking Trail (Wednesday September 11) Manitoulin Island: VON Office (Thursday September 19) Orillia: Bethel Baptist Church (Wednesday September 11) North Bay: First Baptist Church (Thursday September 4) Parry Sound: Belvedere Heights Home for the Aged (Wednesday September 18) Sault Ste. Marie: Senior Citizens’ Drop In Centre (Thursday September 12) Timmins: Timmins Regional Athletics & Soccer Complex (Thursday September 12) For more information on how you can get involved or host a SuperWalk in your community, please contact Amanda Stanton at 800-565-3000 ext. 3371 or amanda.stanton@parkinson.ca LiveWire
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Summer 2013
Exercise—Dance and Tai Chi “Dance 4 Life”: A Dance Program to Address Parkinson’s Symptoms Living an active lifestyle is essential to minimize the impact of chronic conditions such as Parkinson’s disease (PD), multiple sclerosis, stroke, arthritis, and others.1 Individuals living with these types of conditions face impairments that impact their quality of life. It is therefore important to develop strategies to help these individuals manage their symptoms, to minimize disease-related impairments, and maximize their quality of life2, 3. Dance may be an exceptionally effective tool for addressing problems seen in Parkinson’s due to its key elements of dynamic balance and adjustment to the environment4. At the same time, dance is enjoyable and engaging, which consequently promotes adherence and enhances motivation. You might be wondering why dance over any other form of exercise? Here are a few components of a dance class: using music as a cue to initiate movement, learning sequences, using choreography to develop cognitive movement strategies, consciously using proprioception to improve balance, and improving aerobic stamina to improve physical capacity. These are all intrinsic elements of dance that address symptoms experienced by individuals with PD5. “Dance 4 Life” is a dance program inspired by Dance for PD®, a successful program developed at the Mark Morris Dance Group in Brooklyn, N.Y.
ticipants quickly learn that rhythm is inherent to movement and that when we add a purpose to an exercise, physical activity becomes enjoyable. We are not trying to become professional dancers or to master a specific dance style, which is why “Dance 4 Life” incorporates music from a variety of styles including classical, jazz, salsa, pop, classics from the 50’s, folk, etc. “Dance 4 Life” is an exercise program, not a rehabilitation intervention. Although improvements in abilities are expected, the main goal is to engage people in an activity they can enjoy. Dancing is not therapy, but it is therapeutic. Editor’s note: We thank the authors from One Step Ahead Mobility for submitting this article. Parkinson’s dance programs are slowly growing across the country, and are a great way to help get fit! We do not endorse one program over another. 1
Molt RW, Goldman MD, Benedict RH. Walking impairment in patients with multiple sclerosis: exercise training as a treatment option. Neuropsychiatr Dis Treat. 2010 Nov 16; 6:767-74. Dibble, L. E., Hale, T. F., Marcus, R. L., Gerber, J. P., & LaStayo, P. C. (2009). High intensity eccentric resistance training decreases bradykinesia and improves quality of life in persons with Parkinson's disease: A preliminary study. Parkinsonism & Related Disorders, 15(10), 752-757. 2
3
Gobbi, L. T. B., Oliveira-Ferreira, M. D. T., Caetano, M. J. D., Lirani-Silva, E., Barbieri, F. A., Stella, F., et al. (2009). Exercise programs improve mobility and balance in people with Parkinson's Disease. Parkinsonism & Related Disorders, 15(3), S49-S52. 4
Hackney, ME, Kantorovich S, Levin R, Earhart GM. Effects of Tango on functional mobility in Parkinson’s disease: A preliminary study. J Neurol Phys Ther. 2007 Dec; 31(4):173-9
The purpose of the dance lessons is to engage participants in a physical activity that is enjoyable and at the same time can help to improve and maintain their balance, strength, and overall mobility.
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Earhart GM. Dance as Therapy for Individuals with Parkinson Disease. Eur J Phys Rehabil Med. 2009 June; 45(2): 231–238.
What to expect in a “Dance 4 Life” class? The class starts with exercises sitting on a chair to minimize balance concerns. Some of the exercises done on the chair will prepare you for steps that will be incorporated later on. The class then moves to exercises standing behind the chair, using the back of the chair as support (as a barre). This is a good transition between seated movement and standing movement. Exercises moving across the floor and performed in a circle will come at the end of the class when participants have developed awareness throughout the class of balance, weight shifting, and coordination. Participants are encouraged to stay seated or behind the chair if they do not feel comfortable moving across the room.
The Many Benefits of Tai Chi Tai Chi is an exercise that leads participants through a series of gentle movements. Based on some research studies, practicing Tai Chi appears to reduce balance impairments in patients with mild-to-moderate Parkinson's disease, with additional benefits of improved functional capacity and reduced falls.1 This ancient form of exercise can help make daily activities, such as getting up from a chair, climbing stairs, and walking, easier. Why not try a class today? 1
National Institute of Neurological Disorders and Stroke; ClinicalTrials.gov number: NCT00611481.
Every exercise can be adapted to all abilities. To complete the class, there is an improvisation exercise in which we play with creativity, and finally we form a circle, holding hands, to give the class closure. There is absolutely no dance experience required to enjoy the class; in fact, you don’t even have to like dancing. ParLiveWire
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Summer 2013
Robert TerSteege, CIRS-CAN
Make Hay While the Sun Shines I was supposed to write an article about caregiver health and fitness, but chances are you’ve already been told about the importance of keeping yourself healthy first so you can take care of your loved one, and how a fitness routine is good not only for your general health, but also to improve both your mental and emotional state. You know this, and have embraced it, or are rolling your eyes and thinking, “I don’t have time.” So instead, I’ll tell you about one of my favourite knick-knacks. Sitting on a shelf in my living room is a large, pitted metal hook, with a well-worn wooden handle. Far from being a prop from a horror movie, it was one of the bale hooks I used for years. My father has long since retired from farming, and that bale hook is one of the tangible pieces of the farm that I have brought with me to the city. That bale hook is a “how I spent my summer” essay. Summertime on a dairy farm means haying season. Robert working on the family farm
For those who have never hayed, it involves a lot of moving of bales: from the bailer, stacked onto a wagon; from the wagon, into the barn, to be restacked to the rafters. You go to bed knowing that tomorrow you will be doing it all over again, and if you don’t, it could rain and all your work up to that point will be ruined; hence the phrase ‘make hay while the sun shines.’ Of course, you don’t just think that you can walk onto a farm and start slinging bales. Sure, at first it might seem easy, like helping friends move all of their entire two bedroom apartment during a two-hour elevator booking. Adrenaline helps you get through it first, but the fatigue catches up with you.
Strength alone doesn’t cut it. A good farmer has to have endurance during haying because there are regular chores later in the day, and more haying again tomorrow. And a good farmer needs flexibility because moving a lot of hay all at once is going to result in aching, cramped muscles; the kind that no amount of topical heat cream is going to help! Caregiving, by comparison, might look like a stroll in the garden. Of course, the garden on the farm was fairly massive, and if there was any downtime between loads of hay, that would be the place that you would find me and my siblings weeding rows of vegetables that would eventually be picked, pickled, or preserved. A caregiver, like a farmer, always has a bit of pressure knowing that there is one more thing that could be done. A farmer, unlike a caregiver, knows that there is a change coming with the shifting of the seasons, a lessening of certain pressures. We talk a lot about the importance of exercise for people living with Parkinson’s. It is just as important for a carepartner. You do not even have to be providing full hands-on care for your loved one; a carepartner may be simply doing a few extra errands or chores around the house than they used to, and that takes up energy. As we age in general, we naturally lose muscle mass. That’s a fact of life. In order to maintain and slow down the change in muscle mass, you need to exercise. Being busy all day does not mean that you are fit. If you are not fit, you are at a greater risk of injury. You need to find a few minutes to do some stretches for flexibility, and to do some simple exercises to build up your strength and endurance. You need to do it. The bale hook reminds me that my father taught us the value of hard work and the rewards it brings. It also reminds me that I would be a lousy farmer right now, because I know that I don’t have the strength, endurance, or flexibility that I once had because I am 20 years older than when I last touched a hay bale. If you are just as honest with yourself, then chances are you are not at the same level of fitness that you were 20 years ago as well. Find ways that work for you to work exercise into your schedule. Even a few minutes a day will help you in the long run! LiveWire
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Summer 2013
A Tradition of Giving Jim Long Carries on the Family Tradition of Giving Jim Long’s sister, Pat, was diagnosed with early onset Parkinson’s disease in 1972, and over time, Jim assisted his sister where possible until her passing in February, 2005. Since then, Jim has continued 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 Central & Northern Ontario. He’s also involved with the annual Parkinson’s SuperWalk. Beyond giving his valuable time and experience, Jim has found other ways to support the Parkinson Society. He recently donated a large stock gift to Parkinson Society Central & Northern Ontario. This type of gift allowed Jim to realize his philanthropic goals while gaining significant tax savings. “I want to give back to society and I had a meaningful reason to give to the Parkinson Society,” said Jim. The Long family laid the financial foundation that allows Jim to donate generously. He’s now in a position to share so that other families may benefit. Donated securities, such as publicly traded stocks or mutual funds, are transferred to Parkinson Society Central & Northern Ontario with benefits for both the donor and the recipient. The registered Canadian charity receives funds to support the mission to ease the burden and find a cure, while the donor collects the maximum tax benefit as a result of the transaction. Our heartfelt thanks to Jim and everyone who supports Parkinson Society Central & Northern Ontario’s programs and services. Contact Lorelei Wilkinson at 800-565-3000 ext. 3378 for further information on how your gift can bring hope to so many.
For many individuals who have held stocks within their portfolios for some time, a gift of stock may enable them to give a larger gift than they previously thought possible. Because many stocks have appreciated significantly in value over the years, you may be able to make a larger gift than you could otherwise make if you were giving from your day-to-day disposable income (a cash gift). Giving longterm appreciated stock also offers you two-fold tax savings. First, you avoid paying any capital gains tax on the increase in value of your stock. In addition, you receive a tax credit for the full fair market value of the stock, allowing you maximum tax savings.
Golf for Parkinson’s Research Thursday August 29, 2013 Registration – 11 a.m. Shot Gun Start – 1 p.m. Cocktails – 6 p.m. Dinner – 6:30 p.m.
$225 for Golf, Cart, Range, Lunch, and Dinner
RSVP to Todd Sloan 905-836-8070 ext. 228 or todd.sloan@silverlakesgolf.com LiveWire
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Summer 2013
Volunteer Awards 2013 PSCNO Volunteer Awards On June 18, 2013, we held the annual Spring Volunteer Tea, where we came together to celebrate all of the contributions of our volunteers, focusing on our April Hope in Bloom Tulip Campaign. Our annual Volunteer Awards were presented at the tea. The Ian Davidson award is presented in recognition of individuals who have Parkinson’s disease, and who have been role models in providing guidance and support that improved the lives of others living with Parkinson’s in Central & Northern Ontario. The award also recognizes individuals who work to provide public understanding of their situation through such activities as leading support groups, public speaking, advocacy, volunteering, and fundraising. This year, the 2013 award was presented to Carmen Galea. The Derek Curwen Volunteer Award is presented in Derek’s memory to volunteers who exemplify his fundraising expertise, ability to inspire and lead others, and whole-hearted support of Parkinson Society Central & Northern Ontario. The 2013 award was presented to Cathy Graham. The Marilyn Forbes Volunteer Award is presented in Marilyn’s name to volunteers, nominated by their peers, who exemplify Marilyn’s dedication to their chapter, support of people living with Parkinson’s, and the work of the Parkinson Society Central & Northern Ontario. The 2013 award winner is Ryan Tripp. The 2012 award winners were not published in LiveWire due to an oversight. The winner of the Ian Davidson award was Steve Plumley. The winner of the Marilyn Forbes award was Bev Lavender. The two winners of the Derek Curwen award were Jenny Ginder and Sheila Knox. We apologize for the oversight. Photos: Cathy Graham and Carmen Galea (top right photo); Bev Lavender (centre right photo); Steve Plumley (bottom right photo); Ryan Tripp and AB Rustin (Alice Betty) (bottom centre photo). In the bottom left photo, Jenny Ginder (right in photo) Sheila Knox (left), past co-chairs and active committee members for the Porridge for Parkinson's biennial event, were presented with the 2012 Derek Curwen Award by current chair Deb Voorheis (centre)
LiveWire
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Summer 2013
Regional News Parkinson Cut-a-thon Cut-a-thon celebrated its 24th year with hundreds of stylish new looks for supporters throughout the Central & Northern Ontario Region. On April 7, the main event was hosted in salons in Barrie, Collingwood, Guelph, and Toronto, and included more than 400 appointments by 72 stylists, setting a new record of $26,000 raised throughout the region.
Uniting the Young & Early Onset Parkinson’s Community From Across the Region On May 11, a regional focus group meeting was held in Ajax to discuss ways of connecting those with Young and Early Onset Parkinson’s disease. PSCNO defines Young Onset Parkinson disease (YOPD) as a Parkinson diagnosis before the age of 40 and Early Onset Parkinson disease (EOPD) as a diagnosis between the ages of 41 and 60. It was a great day, bringing together people from Peterborough to Belleville; from Toronto and the Durham region to the Halton and Niagara regions. A private Facebook group, PSCNO Young & Early Onset, has been created to encourage engagement and discussion among the Young and Early Onset Parkinson's community. More initiatives will be planned in the future. Please contact your Community Development Coordinator for details on how to access the Facebook group (see page 2 for contact information). If you are reading this copy of LiveWire and would like to be added to our mailing list or receive the electronic edition, please contact livewire.subscriptions@parkinson.ca or call 800-565-3000 ext. 3372.
Jeff Chaplin, Toronto (shown here with Debbie Davis, CEO of Parkinson Society Central & Northern Ontario ), has been a long-time supporter of PSCNO’s Partners for Parkinson’s monthly giving program. He won the Spring LiveWire draw for two World Parkinson’s Congress registrations. See you in Montreal, Jeff! LiveWire
Cut-a-thon is one of the most anticipated annual events held in April, Parkinson Awareness Month. Participants are treated to a wash, style, and blow dry by some of their area’s leading hair designers—plus a gift valued at $35 from our sponsor, Joico. Because of the generosity of the salon owners and stylists who donated their time and talents, all funds raised from Joyce Gordon, CEO Parkinson Society this event assists Canada (left) and Saphia Khambalia, PSCNO regional spokesperson those living with Parkinson’s, through research, education, advocacy, and support services. Many thanks to our sponsors of Cut-a-thon for their generous support. Our media sponsor, City TV, and regional spokesperson, Saphia Khambalia, attended the event in Yorkville and brought live coverage throughout the day. A special thank you to Joico for providing all the product and gift giveaways, Pizza Nova for providing lunch, Deerhurst Resort for the two-night stay prize give-away, M.A.C. cosmetics for the $275 Special thanks to: gift box, Scandinave Spa for the Barrie: Barrie College of Hair and Esspa package for thetics, Abstract THE SALON, Envision two, Prairie Girl Hair Studio, Giovanni & Perri, HairBakery for customscape, Shapes Hair Studio, trendz, i.d. ized cupcakes for Hair Studio, Slickers Salon, Audies our participants, Hair Design and Bistro on Avenue for the gift Collingwood: Headlines Salon, La certificates. Moda Salon, L’Attitudes Guelph: Acqua Hair Salon, Apple SaWe are looking lon, Eros Hair Studio forward to our 25th Toronto: Donna Dolphy Hair, Haartek Cut-a-thon anniSalon, Hair2inc, Oskar on Scollard, versary in April Paul Pecorella Hair Studio, Robin 2014 and welcome new locations. For Barker Hair’Sociates, Sassoon more information, please contact Kim Murdoch, 800-565-3000 ext. 3374 or kim.murdoch@parkinson.ca.
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Summer 2013
Regional News Canadian Guidelines for Parkinson’s Disease: One-Year Anniversary Parkinson Society is pleased to announce that it has been one year since the publication of the Canadian Guidelines for Parkinson’s Disease—a document which for the first time in Canada, is aiming to create a consistent standard for diagnosing and treating Parkinson’s. “The Guidelines are driven by research, anchor all policy and education initiatives, and serve as the standard of care for the Parkinson’s community,” says Vanessa Foran, Vice President, Public Affairs & National Programs, Parkinson Society Canada. In 2012, Parkinson Society Canada provided copies of the Guidelines to more than 62,000 physicians and healthcare professionals nation-wide, including 20,910 in Ontario. Guidelines have been sent to all Members of Parliament and Senators. Regions are now working directly with their Ministries of Health to elevate awareness. In Ontario specifically, the Guidelines have been sent to the Health Minister’s Policy Director and the Premier’s new Health Policy Advisor. Mailings have been sent to Members of Provincial Parliament, and there has been a reading in Queens Park highlighting the Guidelines as well. Moreover, a variety of education initiatives directed to family physicians and community neurologists are underway to spread awareness down to the physician level. For instance, Parkinson Society Canada’s Medical Advisory Committee is authoring a review article of the Guidelines from a primary care perspective. This will be submitted to the Canadian Family Physician journal. As well, the Guidelines have been endorsed by the Canadian Neurological Sciences Federation and distributed as a supplement to the Canadian Journal of Neurological Sciences (July, 2012). On September 21 in Toronto, Parkinson Society will host a Specialist Education Forum, the first of its kind, to educate community neurologists and geriatricians from across Canada on the Guidelines, with the hope that they will return to their community to train family physicians and other healthcare professionals to best serve their Parkinson’s patients. For more information visit, www.parkinsonclinicalguidelines.ca LiveWire
Parkinson Society Central & Northern Ontario to Participate at World Parkinson Congress 2013 Join us at the third World Parkinson Congress (WPC) this fall being held in Canada. Engage with the greater Parkinson’s community at the four-day conference to be held October 1 – 4, 2013, at the Palais des congrès in Montréal. Listen to researchers, medical professionals, and advocates from across the globe as they share ideas, experiences, and advancements in treatment and care management. In addition to welcoming you at the Parkinson Society Canada conference booth, along with other regional societies from Canada, Parkinson Society Central & Northern Ontario will have a poster presentation entitled, ‘Implementing Get it on time: a Canadian perspective.’ This presentation will share our Get it on time successes, including the selfadvocacy tools we developed, and the results of our efforts in hospitals and long term care facilities. The World Parkinson Coalition Inc. is a non-profit organization dedicated to providing an international forum for the latest scientific discoveries, medical practices, and caregiver initiatives related to Parkinson's disease. By bringing physicians, scientists, allied health professionals, caregivers, and people with Parkinson's disease together, the organization hopes to create a worldwide dialogue that will help expedite the discovery of a cure and best treatment practices for this devastating disease. For registration details and more information, please visit www.worldpdcongress.org. If you are not able to attend, follow us on Twitter @Parkinsoncno for live updates from the conference.
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Summer 2013
Our Mission Parkinson Society Central & Northern Ontario works in partnership with Parkinson Society Canada and eight other regional partners across Canada to ease the burden and find a cure through support services, education, advocacy, and research.
Parkinson Society CNO 4211 Yonge St. Ste 321 Toronto, ON M2P 2A9 www.parkinsoncno.ca 800-565-3000 or 416-227-1200 Charitable No: 10809 1786 RR0001
CALLING ALL ARTISTS!
LiveWire is published three times annually: in the spring, summer, and fall. Expect our Spring edition in early March, our Summer edition in August, and our Fall/Winter edition in November.
We are fortunate to have funding again this year to produce a 2014 Hope on Display calendar. If you are a person with Parkinson’s, and an artist of any kind (painter, photographer, jewelry maker, quilter, woodworker, etc.), and would like to be considered for the 2014 calendar, please send an email and high resolution image of your work by August 15 to debbie.davis@parkinson.ca.
PSCNO staff: “We’re ready to walk!”
Did you know? LiveWire is offered in both print and electronic forms. If you would prefer to receive the electronic edition, please contact livewire.subscriptions@parkinson.ca to be added to our email notification list.
LiveWire Parkinson Society Central & Northern Ontario 321 – 4211 Yonge St. Toronto, ON M2P 2A9
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