Spring 2005 Volume 5 Issue 1 $4.50

Tom Cochrane Singer signs up for SuperWalk PLUS MeetMeet MaureenMaureen MatthewMatthew Parkinson Society HelpingHelping peoplepeople Canada turns 40! helphelp themselvesthemselves

Ease the Burden; Find a Cure Sales Product Agreement No. 40624078. Photo: Mark Pineo Join in the fun! Be part of SuperWalk for Parkinson's this September 2005!

Collect pledges and walk with your friends and family! You can plan now to be involved....

Join the ranks of the SuperSTARWalkers: Raise over $1,000 and the fun gets better! Receive a SuperSTARWalker hat and a pin for each year you reach this level plus enjoy the special incen- tives and draw prize just for these walkers.

Bring along a team: Invite your friends and family to join you for the day! Sharing the day will make it more fun so check out the extra incentives for groups of 4 to 10 walkers.

Enjoy the prizes: In addition to local prizes, for every $100 raised, each walker gets one chance to win some great national prizes!

Volunteer to work on a committee: Call the For details about a walk regional office closest to you (see pages 5 & 6 for the number) and become part of the success near you and prize updates in your region! visit www.superwalk.com. Register on-line: Visit www.superwalk.com and find out how easy it is to join a walk and ask your Come and be part of friends for their support while providing them with the fun this September! immediate receipts. Our symbol of hope

It has been a long winter for Canadians so the blooms of spring are a Editorial most welcoming site. The warmer weather makes me think of Parkinson’s Advisory disease awareness month and of tulips, the Parkinson’s national and Committee international symbol of hope, and how they first came to Canada. Tulips have special meaning for all Canadians. During World War II, Bonnie Clay Riley the Dutch royal family was hosted at Government House in and Person with Parkinson’s B.C. Princess Margriet was born at the Ottawa Civic Hospital. Princess Juliana, her mother, presented Ottawa with 100,000 tulip Diane Van Erum bulbs as a gift in appreciation of the safe haven which Holland’s exiled Director Communications royal family received during the Second World War and in recognition of Parkinson Society the role which Canadian troops played in liberating the Netherlands. Canadians still have a sentimental spot for tulips and what they represent Rebecca Gruber in our history. Physiotherapist So how did the tulip become the symbol of Parkinson Society Canada (PSC)? The history of the James Parkinson’s tulip also has its beginnings in the Netherlands. The Parkinson tulip began in 1980 when J.W.S. Van der Jan Hansen Director of Support Services Wereld, a Dutch horticulturalist who had Parkinson’s disease, gave the The Parkinson’s Society name “Dr. James Parkinson” to the red and white tulip he had developed. of Southern Alberta In 1981, he registered his prize cultivar, the “Dr James Parkinson” bulb. The name was chosen to honor Dr. James Parkinson, the English doctor Shirin Hirji who first described Parkinson’s disease in his 1817 “Essay On The Person with Parkinson’s Quebec Shaking Palsy” and to honour the International Year of the Disabled. This year, PSC celebrates our 40th anniversary, and our recent event Beth Holloway on Parliament Hill in our nation’s capital to mark April as Parkinson’s Person with Parkinson’s disease awareness month and to commemorate our anniversary was Newfoundland and Labrador again another magical thread that ties

Dr. Mandar Jog PSC to the hope that tulips represent. Neurologist As I was awed by the site of all the Ontario tulips in bloom in Ottawa, I thought of how we at PSC are all truly Peggy Yates connected by tulips, our mission National Director Communications and Marketing and vision, and the hope that spring PSC National always brings.

Dr. John Wherrett Neurologist Ontario

ON OUR COVER: Peggy Yates, CFRE In an exclusive interview with Parkinson Post, , National Director, Honourary Chair of SuperWalk, Communications and Marketing, chats about his father’s life with Parkinson’s and his commitment to Parkinson Society Canada the fight against the disease. Toronto, ON Photo: Terry Lowe, Terrier Productions Lowe, Terrier Photo: Terry Spring 2005 P arkinsonPost 3 ParkinsonPost A quarterly magazine for Canadians living with Parkinson’s

Parkinson Post Vol. 5, Issue 1, Spring 2005 FEATURES Donald Calne Parkinson Society Canada 4211 Yonge Street, Suite 316, On the Lecture Toronto, ON M2P 2A9 Rewriting the book: Editor: Frontlines How Professor Hornykiewicz Peggy Yates Helping people help changed Parkinson’s care 12 Publisher: themselves: BCS Communications Ltd. On the job Volunteers How to contact Parkinson Post: with Maureen Our volunteers: Parkinson Post Matthew 8 The heart and soul of 4211 Yonge Street, Suite 316 Parkinson Society Canada 14 Toronto, ON M2P 2A9 Interview Phone: (416) 227-9700 Toll Free: (800) 565-3000 In memory Anniversary Fax: (416) 227-9600 of Tuck: Celebrating 40 years: E-mail: [email protected] Singer [email protected] Forty outstanding achievements Tom 17 Website: www.parkinson.ca Cochrane Parkinson Post (ISSN #1489-1964) is the official talks about First Person publication of Parkinson Society Canada, and is published his father Up-times and quarterly by BCS Communications Ltd., 101 Thorncliffe and the off-times: Park Drive, Toronto, ON M4H 1M2. Tel: (416) 421- fight for Living life 7944 Fax: (416) 421-0966. All rights reserved. a cure with Parkinson’s Contents may not be reproduced without permission 10 20 of Parkinson Society Canada. Printed in Canada. All material related to Parkinson’s disease contained in this magazine is solely for the information of the reader. It should not be used for treatment purposes. COLUMNS Specific articles reflect the opinion of the writer and are not necessarily the opinion of Parkinson Society Letter from Research Report Canada or the publisher. Canadian Publication Mail Sales Product Agreement No. 40624078. © 2005 Parkinson A look at current Parkinson’s Society Canada research around the world 18 Advertising Policy The acceptance of advertising in Parkinson Post is not an Our symbol of hope 3 • Parkinson’s and driving indication that Parkinson Society Canada or any of its divisions endorses any of the products or services listed. • Advances in genetics Regional Partners/Roundup For people living with Parkinson’s, it is recommended • Testing the placebo effect they consult their health professionals before using Highlights from PSC any therapy or medications. Parkinson Society Canada partners across Canada 5 • Focus on Jennifer Takahashi accepts no responsibility for any claims made in any advertisement in Parkinson Post. The Advocate Issues of Our mission interest to Ask the Expert Parkinson Society Canada/ people with Société Parkinson Canada Parkinson’s 7 Managing is the national voice of common Canadians living with sleep Parkinson’s. Our purpose Health Tip disorders 22 is to ease the burden Dietary vitamin E may and find a cure through cut risk of Parkinson’s 7 research, education, Resources advocacy and support A selection of services. Website Highlights the latest Your guide to what’s new educational on-line at www.parkinson.ca 15 resources 23

4 P arkinsonPost Spring 2005 National Office and Regional Partners For information, programs and services in your area, or to make a donation, contact the following offices:

PSC National Office sclerosis for many years. PSSA with a gala performance of 4211 Yonge Street, Suite 316 Students from the local massage the play Mesa in mid-December. Toronto, ON M2P 2A9 therapy college continue to help Doug Curtis, who wrote Mesa, Ph: (416) 227-9700 over 50 clients who attend a has young-onset Parkinson’s. Toll Free: (800) 565-3000 weekly Parkinson’s-focused Dr. Anthony Lang, neurologist Fax: (416) 227-9600 therapeutic massage clinic. at Toronto Western Hospital, www.parkinson.ca Several PD discussion groups presented an “Update on are incorporating progressive Parkinson’s” for PSSA members Parkinson Society British Columbia muscle relaxation into their and guests on February 18. 890 West Pender Street, Suite 600 monthly sessions. Over 100 people attended. , BC V6C 1J9 A neuro-knowledge management Porridge for Parkinson’s was Ph: (604) 662-3240 project is being planned and will hosted in February by Beth Carter Toll Free (BC only): (800) 668-3330 involve clients participating in and Bob Baker. CBC’s “answer Fax: (604) 687-1327 web-based tracking of symptoms, lady,” Marg Meikle, was the www.parkinson.bc.ca treatment and outcomes. special guest. Porridge for Parkinson’s was successful. Revenue from the The Parkinson’s Society of Alberta Saskatchewan auction increased over last year. Edmonton General, Room 3Y18 Parkinson’s Disease Foundation Fifteen members of the Better 11111 Jasper Avenue 103 Hospital Drive, Box 102 Pharmacare Coalition, to which Edmonton, AB T5K 0L4 Saskatoon, SK S7N 0W8 PSBC belongs, met with the Ph: (780) 482-8993 Ph: (306) 966-1348 Provincial Liberal Health Caucus Toll Free: (888) 873-9801 Fax: (306) 966-8030 to discuss the newer drugs for Fax: (780) 482-8969 E-mail: [email protected] conditions such as asthma, www.parkinsonalberta.ca Regina Curling Classic was once diabetes, Parkinson’s, and so on, Ms. Julia Hawley was awarded again a huge success. that have not been approved for the Gilbert H. Krause Course Prize Movement disorder clinics are reimbursement by Pharmacare. in Neurology, an award named in held in Saskatoon and Regina. Two education meetings were honour of one of the founders of Annual Golf Classic is held: one for people living alone The Parkinson’s Society of scheduled for August. with Parkinson’s and another Alberta. SuperWalk scheduled for for people with young onset. Alyse Geiger, 12 years old, was September 25, 2005, in Saskatoon. In the last four months, the the top fundraising student for Parkinson Week is September Support Services Co-ordinator SuperWalk for Parkinson’s 2004 26–30. A movement disorder has given four in-services and and was one of 19 students hon- expert will speak in Regina visited 11 support groups. oured by Premier Ralph Klein as a and Saskatoon. recipient of a “Great Kids Award.” Victoria Epilepsy and Parkinson Centre Results of a survey of persons with Parkinson Society 813 Darwin Avenue Parkinson’s are being compiled by 171 Donald Street, Suite 302 Victoria, BC V8X 2X7 University of Alberta faculty of , MB R3C 1M4 Ph: (250) 475-6677 nursing staff. Ph: (204) 786-2637 Fax: (250) 475-6619 Toll-Free: (866) 999-5558 www.vepc.bc.ca The Parkinson’s Society Fax: (204) 786-2327 A presentation by a local psychology of Southern Alberta Hope in Bloom retail card program professor on “Enhancing memory 102-5636 Burbank Crescent SE was at nearly 100 vendor locations. and thinking process” provided Calgary, AB T2H 1Z6 Potted tulip sales set a new many tips to a large audience. Ph: (403) 243-9901 revenue record. “The impact of chronic illness Toll Free (Alberta): (800) 561-1911 on personal relationships” was Fax: (403) 243-8283 Continued on page 6 presented to a young onset www.parkinsons-society.org audience by a clinical counsellor Ghost River Theatre held a joint who has been living with multiple fundraiser for Ghost River and

Spring 2005 P arkinsonPost 5 Parkinson Society Manitoba Movement Disorders Research For information, call Amelie Verret celebrated World Parkinson Day Centre in Waterloo. at the office. on A-channel’s Big Breakfast. Welcome to Dr. Mary Jenkins, SPQ-Greater will Regional conference attracted hun- movement disorders specialist, hold their golf tournament dreds of people. Dr. Colin Powel, who joined the Movement on September 1. MB, FRCP, Dalhousie University Disorders Clinic at London Health (Halifax); Dr. Jerry P. Krcek, BA, Sciences Centre last fall. PSC Maritime Region MSc, PhD (Med Sci), MD, FRCSC, Thanks to volunteers who helped 5991 Spring Garden Road, Suite 830 Neurosurgeon, HSC Winnipeg; during April Awareness Month. Halifax, NS B3H 1Y6 and Lynn Mitchell-Pederson, Ph: (902) 422-3656 RN, BA, EdD, were presenters. Parkinson Society Ottawa Toll Free (NS, NB & PEI): Annual Golf Classic held on 1712 Carling Avenue (800) 663-2468 May 30, 2005, at Breezy Bend Golf Ottawa, ON K1Y 4E9 Fax: (902) 422-3797 and Country Club in Winnipeg. Ph: (613) 722-9238 www.parkinsonsocietymaritimes.ca Educational grants provided by Fax: (613) 722-3241 During awareness month, Jan Duff Novartis Pharmaceuticals Canada www.parkinsons.ca presented awareness sessions in Inc., GlaxoSmithKline, and Our fall presentation featured Truro, Moncton, Charlottetown Boehringer Ingleheim. Dr. David Park, a neuroscientist and Halifax. First regional volunteer awards with the Ottawa Health Research Porridge for Parkinson’s was held presented. Institute and a co-chair of the in Fredericton and chicken wing newly-formed Parkinson’s eating challenges were held in PSC Central and Northern Research Consortium. Moncton and Saint John. All Ontario Region Our Yuk Yuk’s Comedy Night for were successful. 4211 Yonge Street, Suite 321 Parkinson’s raised over $14,000. Plates for Parkinson’s, the region’s Toronto, ON M2P 2A9 Results of a client survey showed first gala dinner and auction, was Ph: (416) 227-1200 there are several under-serviced held on April 25 in conjunction Toll Free National: (800) 565-3000 areas outside Ottawa. One new with a themed lotto. Fax: (416) 227-1520 support group was set up, and two The Moncton chapter marks Toronto held “Everyday living more are in the planning stages. its 15th anniversary in June. strategies: A holistic approach to The Masonic Foundation of Hope volleyball is scheduled for coping with Parkinson’s disease Ontario donated $15,000 to August 20 in Halifax, marking through the use of humour, purchase new equipment. the second year of a three-year exercise and knowledge” at agreement with PSC. a conference on May 7, 2005. Société Parkinson du Québec The 2005 golf tournament will Ninth annual Granite Ridge Golf 1253 McGill College, Suite 402 be held August 26 in Truro. Tournament held on June 8, 2005. Montreal, QC H3B 2Y5 Sixteenth annual Pitch-in for Ph: (514) 861-4422 Parkinson Society Parkinson’s held on June 21, 2005. Toll Free: (800) 720-1307 Newfoundland and Labrador National francophone line The Viking Building PSC Southwestern Ontario Fax: (514) 861-4510 136 Crosbie Road, Suite 305 4500 Blakie Road, Unit #117 www.infoparkinson.org St. John’s, NL A1B 3K3 London, ON N6L 1G5 The annual conference was held Ph: (709) 754-4428 Ph: (519) 652-9437 on April 29. Anxiety sleep distur- Toll Free (NFLD/Labrador): Toll Free Ontario: (888) 851-7376 bances, yoga, and physiotherapy (800) 567-7020 Fax: (709) 754-5868 Fax: (519) 652-9267 were among the subjects discussed. We moved to a larger office www3.sympatico.ca/pf.swo Some of them will be published in December. The new office “Spell the end of Parkinson’s” on the Infoparkinson website and allows volunteers to work was a winter-blues buster for in the Bulletin. unencumbered by staff. Scrabble® gurus, raising $8,400 Introducted a new service, In February, we held a new for client services. Care-ring Voice, which provides fundraiser: a flea market, Thanks to the senior occupational caregivers with support through which was fun and profitable. therapy students of the University teleconferencing-based services. Welcomed Claudette Barnes, a of Western Ontario for creating Nine SuperWalks are being well-known radio personality, the “Falls prevention binder.” organized in Abitibi-Témiscamingue, as our honourary chair. Congratulations to Dr. Quincy Chicoutimi, Montréal, Quebec, Almeida for his work with Rimouski, Rivière-du-Loup, Parkinson’s patients at the new Sherbooke and Trois-Rivières.

6 P arkinsonPost Spring 2005 Issues of interest to people with Parkinson’s Dietary vitamin E may cut risk of Parliament Hill takes Parkinson’s disease time for Parkinson’s Findings from a meta-analysis of study In April, Minister of Defence Bill Graham data suggest that consuming a diet high and Senator Michael Pitfield took time out to in vitamin E may help stave off Parkinson’s bring their parliamentary colleagues together disease. However, the authors caution that confirmatory data from a randomized to mark National Parkinson’s Disease trial is needed. Awareness Month and the 40th anniversary Photo: Mike Heffernan, Binary Rhyme Joyce Gordon, President and CEO Oxidative stress has been theorized of Parkinson Society Canada (PSC). of Parkinson Society Canada (second to play a role in the pathogenesis of from left), celebrates Parkinson’s Minister of Health Ujjal Dosanjh and Disease Awareness Month with Parkinson’s disease. As such, treatment Minister of State (Public Health) Dr. Carolyn Minister of National Defence Bill with antioxidants, such as vitamin E and Graham (far left), Senator Michael C, could confer neuroprotection. Bennett joined Senator Serge Joyal, Senator Pitfield, and Minister of Health As reported in the June issue of The Wilbert Keon, Senator Jack Austin, Senator Ujjal Dosanjh (far right). Lancet Neurology, Dr. Mahyar Etminan, Sharon Carstairs, Senator Lillian Dyck and Senator Nancy Ruth over from the Royal Victoria Hospital in Montreal, lunch for what Parkinson Society Canada hopes will be the beginning and colleagues conducted a search of of a dialogue on the future approach to Parkinson’s disease in Canada. studies published between 1966 and PSC was well represented by volunteers Alan Riccardi, Fran Squire, 2005 that looked at the effect of David Simmonds, William Harshaw and Gerry Kelleher and by President antioxidant intake on the risk of Parkinson’s disease. Eight observational studies and CEO Joyce Gordon. were identified. Moderate or high intake of vitamin E Dr. Wszolek recognized with lectureship reduced the risk of Parkinson’s disease Parkinson Society Canada is pleased to announce the award of the by about 20 per third annual Donald Calne Lectureship to Dr. Zbigniew Wszolek of cent compared with little or no the Mayo Clinic in Jacksonville, Florida. intake. Dr. Wszolek received his MD degree from the Silesian University in By contrast, Poland in 1973 and has been consulting and teaching at the prestigious there was no Mayo Clinic and Mayo Foundation in Jacksonville since 1998. A evidence that con- specialist in the neurogenetics and neurophysiology of Parkinson’s suming diets high disease, Dr. Wszolek has recently been involved in work on the in vitamin C or beta carotene offered Tau gene and on Lewy bodies. any protection This year’s lecture will be given on Friday, November 4, 2005, in against Parkinson’s Winnipeg, Manitoba, during PSC’s Annual General Meeting. Watch disease, the authors note. for updates on www.parkinson.ca. “Our data suggest that diets rich in vitamin E protect against the development of Parkinson’s disease,” the authors state. PSC kicks-off annual campaign “No definite conclusions regarding the April 11 marked World Parkinson Day and the kick-off of Parkinson benefits of supplemental vitamin E can Society Canada’s national Parkinson Disease Awareness Campaign. be made.”

Efforts are underway across Canada to promote a better understanding of Source: Lancet Neurol 2005;4:362-365. Reprinted Parkinson’s, to share accurate and up-to-date information with those living with permission from Reuters Health, New York. with the disease, and to raise funds for research and support programs. Please remember that while Parkinson One such program is the new Medical Information and Support Society Canada provides information Program, launched this past November. To date, over 18,900 family that may be of interest to persons living physicians have received this kit of resources and information that will with Parkinson’s, their families and care- enhance their understanding of Parkinson’s and their ability to care for givers, we recommend that you always more aspects of their patients’ medical needs. check with your physician or pharmacist before taking any over-the-counter products to ensure compatibility with your Parkinson’s Ease the Burden; Find a Cure and other prescription medications.

Spring 2005 P arkinsonPost 7 Helping people help themselves On the job with Maureen Matthew, Parkinson Program Co-ordinator

Maureen Matthew, BSW, is a strong believer in the power of people. So it seems only fitting that much of her work is focused on helping people with Parkinson’s find and utilize the power that lies within each of them.

By Ian Corks

s the Parkinson Program A Co-ordinator for the Victoria Epilepsy and Parkinson’s Centre (VEPC), Maureen is one of the many dedicated people working to provide support and services to the Canadian Parkinson’s community. And, as for all of her colleagues across the country, it’s a job that Photos: CP Images calls on a variety of skills and Maureen Matthew, Parkinson Program Co-ordinator, welcomes visitors to the Victoria Epilepsy talents, not to mention a sense of and Parkinson’s Centre. compassion and a distinct desire to make a difference. Focus on self-determination means talking to people in person The VEPC is a not-for-profit From its beginnings, the VEPC has or on the phone, answering organization, serving people living adopted a focus on client self-deter- e-mails, responding to requests with Parkinson’s and epilepsy in mination and teamwork, an ideal for information, providing referrals, Victoria and the Capital Region fit for Maureen’s personal and pro- etc. Our clients include anyone District of Vancouver Island. The fessional philosophy. “The VEPC is who is touched by Parkinson’s. agency is unique in Canada in a very effective agency with gifted That can mean people with the that it serves those whose lives Executive Director Sandra Bitz, condition, family members, health- are affected by either of these very five dedicated staff and an amazing care professionals or others.” different neurological conditions. team of volunteers,” she notes. When it comes to people with A qualified geriatric social Maureen’s role as Parkinson Parkinson’s and their loved ones, worker, Maureen joined the VEPC Program Co-ordinator is multi- Maureen prefers to meet face-to- in 1989, following a varied career faceted. On any given day, she can face whenever possible. “About 85 in the Victoria health-care system. be involved in a number of diverse per cent of the people we talk to “I’d worked in a variety of health- activities—all with the ultimate come in for at least one sit-down related settings, and I found that goal of supporting people with visit,” she says. “A face-to-face I really enjoyed providing client Parkinson’s and their families. meeting puts people more at ease, services that empowered people,” “About half my time is spent especially those dealing with a she recalls. “My job at the VEPC in providing direct, personal client new diagnosis.” allows me to do this.” services,” notes Maureen. “That Understanding exactly what the

8 P arkinsonPost Spring 2005 client needs allows Maureen and in-services at the local college or the VEPC to tailor their services at health care organizations. These appropriately. This could mean pro- are aimed at helping others to viding counseling and information understand the subtleties of caring on issues such as symptom man- for people with Parkinson’s. agement strategies, treatment As if that’s not enough, many options, emotional reactions, fam- other activities keep Maureen busy. ily relationships or other important For example, she is the editor of issues. It could also mean referring At Victoria Epilepsy and Parkinson’s Centre, the Centre’s quarterly newsletter, the client to another community caring is a team effort. Left to right are The Transmitter, gathering useful Sandra Bitz, Executive Director; Della Truitt, resource or to one of the many pro- Office Manager; Maureen Matthew; and materials and writing articles grams co-ordinated by the VEPC. Jennifer Brock, Community Events Liaison. when needed. These programs currently include Maureen’s role also involves a short-term early stage group, grated into their community, but recruitment and support of the exercise classes and a variety of we also know that it can be magical over 50 volunteers who offer their educational initiatives. “Clients to be with others with a common time and services to help the and family members are also invited experience.” Centre and its clients. In addition, to contact me as needed,” Maureen “Another example of our pro- she is occasionally called on to states. “We get to know each other active stance is a stronger emphasis help supervise practicum students, fairly well over the years.” on inviting those who attend our such as the two nursing students educational sessions to leave with who helped out at the VEPC Enriching lives an action plan for themselves,” last year. Maureen works closely with Mary Maureen adds. “This goal stemmed And, of course, there are the Chu, Co-ordinator of Education from our exploration of the Chronic report writing, committee meet- Services. Mary organizes the Disease Self Management Program ings, special project work and other VEPC’s innovative educational (CDSMP) developed at California’s typical day-to-day tasks of working events. For example, she recently famous Stanford University.” for a not-for-profit organization. organized a daytime seminar on the The same level of effort is put No matter which particular topic “Exploring your potential,” into other programs at the VEPC. task she is putting her hands to, which featured Maureen as one of The result has been a range of the driving force behind Maureen’s many presenters. This inspiring practical client-oriented programs, efforts is always empowerment. afternoon focused on some of the including some innovative “Parkinson’s is a potent force, many creative ways that people partnerships. but you should never give it more with Parkinson’s choose to main- power than it deserves,” she says. tain fulfilling, joyful lives. In the community “I try to remind everyone where Program development is another Maureen also spends a lot of time the ultimate power to accomplish key part of Maureen’s job. This can in the community presenting anything lies. It lies with them.” be a complex and time-consuming process, one that calls on her clini- By the people, for the people cal education and background. “Financial resources are limited, so Maureen Matthew admits she loves the “grassroots” nature of the work at the Victoria Epilepsy and Parkinson’s Centre. we regularly check with our clients Grassroots seems a particularly apt term for the VEPC, which got its start in the to ensure that our services are both early ’80s during an informal living room get-together of a group of people with effective and responsive to changing Parkinson’s. Seeking advice on forming a support network, they were put in touch needs” she notes. “For example, we with a similar group of people dealing with the challenges of epilepsy. Sharing the are currently exploring whether our same philosophy–that people who are well informed about their health condition agency could partner with other are best able to live to their maximum potential–the two groups decided to work together. The eventual result was the VEPC, which now provides services to about community groups to offer some 1,000 people in Victoria and the surrounding region. kind of mind-body program. We know that it is better for people Editor’s note: For information about the VEPC, visit www.vepc.bc.ca. with a health challenge to stay inte-

Spring 2005 P arkinsonPost 9 Interview Canadian rocker Tom Cochrane is supporting Parkinson Society Canada as the Honourary Chair of SuperWalk.

In memory of Tuck: Tom Cochrane talks about his father, his friends and the fight for a cure

om Cochrane is a Canadian a well-known bush pilot and living with Parkinson’s, their T icon. Born in Lynn Lake, Second World War RCAF veteran, caregivers and families, what Manitoba, the Juno-award-winning to Parkinson’s disease. Already a do you hope to achieve? Photos: Mark Pineo rocker has earned his status as supporter of Parkinson Society TC: I hope that my humble one of the country’s best-known Canada, Tom has graciously agreed contribution, in some small musicians. From his early days to be the Honourary Chair of way, will help bring a quicker in the coffee houses of Toronto’s SuperWalk for the next three years. discovery of a cure. Here I am Yorkville district, to the emergence Parkinson Post recently paying my dues to my dad and of the group Red Ryder in the talked to Tom about his late his memory ... and then along 1980s, to his 2003 induction into father and his commitment comes one of my good friends, the Canadian Music Hall of Fame, to the fight against Parkinson’s. at 42, who tells me he’s just Tom has made his mark on the been diagnosed with Parkinson’s. Canadian and international music PP: Tell us a bit about your It shows it could happen to anyone. scene. His hit “Lunatic Fringe” is father, Tuck. one of the most played songs in TC: Tuck was a great guy. He PP: As someone who has had a U.S. rock radio history. The 1991 was embarrassed by too much very personal experience with the Mad, Mad World ranks attention on the one hand, but very debilitating effects of Parkinson’s among the best-selling Canadian proud on the other. He was quick disease, can you describe how it records of all time, with the single to say, “Tom, let the other guy has changed your view on life? “” selling more have his say, even if you don’t TC: It made me a lot less critical than two million copies around agree.” Manners were important of others and, perhaps, a little less the world. to him. How Canadian is that? intense about the stuff that really Life’s highway has not doesn’t matter that much. It has always been smooth for Tom. PP: As the Honourary Chair for taught me to get outside my ego In November 2002, he lost his SuperWalk and the ambassador and to respect and appreciate my father, Thomas “Tuck” Cochrane, for the nearly 100,000 Canadians friends and family a little more.

10 P arkinsonPost Spring 2005 PP: You’ve dedicated the pro- to send to the medical research ceeds of your song “Just Like community? Ali” to PSC. You’ve credited a TC: You are lonely soldiers on statement by your late father— an important road to discovery that he was, “going to fight and physical emancipation. You Parkinson’s, just like Ali”—as inspire us, and we salute you. Keep the inspiration for this moving going … until the dawn of a cure song. Could you elaborate? brings light out of the darkness TC: The creative process hap- of this terrible disease. pened over a few years, but these things find their own pace and PP: Do you have any parting words timing. In the end, the impact of for our readers? a song like this has so much to TC: I feel privileged ... to be able do with the emotional invest- us together. It pulls even the to help. All of you can as well. ment … the love, the desperation great and strong down—but not Please take part in the SuperWalk, and so much more attached to the their spirit! and support the brave work of way I feel about my dad and Parkinson Society Canada. . And about how a PP: PSC funds some of the best Help them find a cure. terrible disease like Parkinson’s medical research in the world. Visit www.superwalk.com for impacts us all, yet tragically pulls What message would you like more information.

Manulife supports Info Centre

anulife Financial has made there is a compassionate and well as providing over 19,000 M a significant commitment knowledgeable voice on the phone Parkinson’s information packages to Canadians with Parkinson’s when Canadians liv- through disease by announcing a $75,000 ing with Parkinson’s requests to gift to help fund Parkinson Society call for help.” the National Canada’s National Information “Manulife Financial is commit- Information and Referral Centre. and Referral Centre. ted to giving back to the communi- The Centre has a wealth of infor- “Almost 100,000 Canadians ties in which we do business,” says mation, from how to contact a have Parkinson’s today… and Bruce Gordon, Manulife Financial local support group, to details we expect that number to double Senior Executive Vice-President about information evenings and over the next 10 years,” says and General Manager, Canada. exercise classes, to requests for Joyce Gordon, President and CEO “We applaud the work being done medical articles and educational of Parkinson Society Canada (PSC). by PSC to raise awareness and brochures addressing specific “One of the best services we can educate the public about this aspects of Parkinson’s disease. offer is access to the best informa- disease.” PSC’s National Information and tion and resources that people In 2004, the Centre responded Referral Centre can be accessed need to manage the disease. to more than 1,400 calls for infor- through www.parkinson.ca or by Manulife Financial’s contribution mation from people living with e-mailing [email protected]. will help PSC continue this very Parkinson’s, family members, care For more information on Manulife important work and ensure that partners and health professionals as Financial, visit www.manulife.ca.

Spring 2005 P arkinsonPost 11 Rewriting the book How Professor Oleh Hornykiewicz changed the lives of people with Parkinson’s

By Ian Corks Parkinson Society Canada is the proud sponsor of the prestigious Donald Calne Lecture series. Launched in 2002, this series invites the world’s foremost Parkinson’s researchers and clinicians to discuss their work at PSC’s Annual General Meeting.

his year, the Donald Calne ter dopamine was first discovered T Lecture was delivered by in the basal ganglia of the human Professor Oleh Hornykiewicz, a brain about 45 years ago by Professor Oleh Hornykiewicz delivers the man who forever changed our researchers in Japan. 2004 Donald Calne Lecture at Parkinson Society Canada’s annual general meeting. understanding and treatment of At the time, around 1959, Parkinson’s disease. Professor Hornykiewicz was work- normal distribution of dopamine It was Professor Hornykiewicz ing in the pharmacology depart- in the human brain. But they who first determined the crucial ment of the University of Vienna. also showed something else. role of the neurotransmitter He knew that neurologists had long In examining the brains of the dopamine in Parkinson’s and suspected that Parkinson’s disease people with Parkinson’s, Professor subsequently pioneered the use has something to do with the basal Hornykiewicz was the first to dis- of levodopa, still the mainstay ganglia. Armed with this knowl- cover what is now common knowl- of treatment. edge, he thought it a logical step edge: there was a marked and even The selection of Professor to examine dopamine in the basal severe decrease in the amount of Hornykiewicz as this year’s ganglia of people with Parkinson’s. dopamine, compared to the control lecturer is even more appropriate This involved collecting post- brains. Today, this loss of dopamine due to his strong Canadian connec- mortem samples, so he asked the in Parkinson’s is well established tion. He provided fascinating University’s pathologist to provide and can even be shown in live insight into his own accomplish- the brains of deceased individuals. patients using floradopa PET scans. ments, including his years of work This was considered an unusual Other non-Parkinsonian disor- in Saskatoon and Toronto, and request at the time, but Professor ders involving the basal ganglia offered a hopeful look at what lies Hornykiewicz persevered, and that he had studied did not have a ahead in the immediate future of in a short time, he managed to similar loss of dopamine, so there Parkinson’s research. analyze six brains of people with seemed to be a real connection to The following is an overview Parkinson’s and 20 control brains, the loss of this neurotransmitter of the 2004 Donald Calne Lecture along with samples from 12 people and Parkinson’s disease. given by Professor Oleh who had non-Parkinsonian disor- Even though Professor Hornykiewicz. ders of the basal ganglia. Hornykiewicz had made a major Professor Hornykiewicz’s studies breakthrough and had the evidence Establishing the link confirmed the Japanese findings of a dopamine-Parkinson’s link The presence of the neurotransmit- and provided a picture of the in his hands, his work was just

12 P arkinsonPost Spring 2005 beginning. He postulated that The man behind the breakthroughs replenishing the dopamine in Professor Oleh Hornykiewicz is one of the world’s leading neuroscientists. He received the brain of a Parkinson’s patient his medical training at the University of Vienna in Austria. He has held full professor- would have a beneficial effect ships concurrently at the University of Toronto, in the departments of Pharmacology on the symptoms. The chemical and Psychiatry, and at the University of Vienna in the Department of Biochemical Pharmacology. Professor Hornykiewicz is presently Professor Emeritus at both levadopa suggested itself, as it is universities. He continues to work out of the Brain Research Institute at the University a precursor of dopamine and is of Vienna and is widely acknowledged as the leading authority on neurotransmitter able to enter the brain. function in the diseased and normal brain. The next step was to try giving levopoda to a Parkinson’s patient, an idea that many thought to be “crazy.” and dopamine levels, with In fact, it took almost a year for dopamine concentrations being Professor Hornykiewicz to con- nine to 15 times higher in treated vince his colleague, neurologist patients. It also showed that Dr. Walter Birkmeyer, to inject patients with higher dopamine levodopa intravenously into a few concentrations were classified as of his patients. “good responders,” in terms of The results were immediate, Parkinson’s symptoms, while with the patients responding in those with lower concentrations Professor Hornykiewicz’s experimental bench a way that was described as were classified as “poor respon- in the basement of the University of Vienna’s Pharmacology Department circa 1959, where “miraculous.” From the first ders.” The results of these Toronto he conducted his ground-breaking research patient treatment, Dr. Birkmeyer studies finally silenced the critics on dopamine and levodopa. became one of the most enthusiastic and eliminated doubts about the needed. Researchers believe this supporters of the use of levodopa in specificity of levodopa treatment may be possible by a number of clinical practice. From that point for Parkinson’s disease. methods, including intrastriatal on, levodopa has been the corner- In terms of the future of fetal nigral cell transplants, stone of Parkinson’s treatment, Parkinson’s treatments, Professor genetically modifying somatic with enhancements made to the Hornykiewicz is watching three cells to express dopamine synthetic therapy over the years. particular areas of developing enzymes or—the most recent However, in the early days, the research with interest. approach—the use of human levodopa-dopamine-Parkinson’s link The first involves ways of stem cells. was not enthusiastically received by improving the therapeutic profile of Finally, there are the ongoing all experts, in spite of the growing levodopa, mainly by addressing its investigations into the actual evidence. This doubting, some- main disadvantage, the side effects cause of Parkinson’s. Professor times from eminent neuroscien- that most patients develop after Hornykiewicz has been involved tists, continued into the 1970s. long-term use. Most of the work in in some of these investigations, this area revolves around combin- including studies conducted in A Canadian connection ing levodopa with other medica- Toronto. While the potential By that time, Professor tions, such as dopamine agonists rewards are great, he admits that Hornykiewicz was working in or enzyme inhibitors. Investigators this is the most complex field of Toronto at the famous Clarke hope that these will enable a reduc- all, with many avenues to be Institute. He decided to address the tion in the amount of levodopa investigated and innumerable concerns by assigning his PhD stu- required, along with a correspon- questions to be answered. dent at the time, Ken Lloyd, to look ding reduction in side effects. While tremendous progress has deeply into the brains of Parkinson’s Another area of study is the been make in the understanding patients treated with levodopa and search for a biological approach and treatment of Parkinson’s determine the exact effect of the to dopamine replacement. This disease, Professor Hornykiewicz— drug on dopamine levels. is essentially a way of prompting the man behind much of that This research showed a direct the production of dopamine by progress—believes that the really link between levodopa treatment the brain so that levodopa is not great breakthrough still lies ahead.

Spring 2005 P arkinsonPost 13 Our volunteers: The heart and soul of Parkinson Society Canada By Peggy Yates

anada has long enjoyed the The David Simmonds Award Passion and charisma describe C reputation of leading the This award honours the unique this year’s recipient, broadcast icon world in volunteering. For example, contribution and charisma of David Vicki Gabereau. As Honourary Canadian volunteers contributed Simmonds, the Chair of Parkinson Chair of SuperWalk for the past approximately one billion hours of Society Canada (PSC) from three years, Vicki has shown their time to charitable causes in 1999–2001, who, through his excep- extraordinary commitment and the year 2000. These hours trans- tional vision, leadership, negotia- dedication to PSC’s mission over late into the equivalent of 549,000 tion skills, perseverance and com- the past three years. She used her full-time year-round jobs! mitment, strengthened the voice of familiar face, presence and voice to Parkinson Society Canada’s vol- those living with Parkinson’s. The encourage and promote SuperWalk, unteers are no exception. Each year, recipient of the award is someone our largest national fundraiser. She the Parkinson’s community selects who has demonstrated extraordi- added all of her own resources and recipients for the honour of being nary leadership skills that have led others to action to make this recognized by their peers. Our resulted in a significant contribu- annual event exceed its previous National Volunteer Awards recog- tion to the lives of person’s living records. nize achievements and service to with Parkinson’s. Vicki continues to help those Canadians living with Parkinson’s. living with Parkinson’s and to do what she can to make a difference.

The Mimi Feutl Award This award was created to honour the incredible force who was the Director of Patient Services with the Parkinson Foundation of Canada for 22 years. This award is given to an indi- vidual who, through compassion and provision of information and support, has made life better for individuals living with Parkinson’s and their families. The award recipi- ent exemplifies the same dedication and compassion for the mission and people of PSC that Mimi did.

David Simmonds (right) presents Vicki Gabereau with the 2004 David Simmonds Award.

14 P arkinsonPost Spring 2005 The ability to respond to all of health care professionals about requests for information and sup- Parkinson’s disease, and her com- port while ensuring and respecting mitment to easing the burden has the dignity and individuality of all never wavered. who seek support are important While Peggy has provided characteristics of the recipient. expertise to colleagues and health In 2004, the Mimi Feutl Award care professionals, her most impor- was presented to two exceptional tant role has been providing com- Left to right: Ginette Maynard, Mimi Feutl, recipients. passionate advice to individuals Marie-Josée Fortin and Barry Johnson. and their families who contact the clinic. Peggy has shown great com- services and to identify ways mitment in her work. She inspires to help with issues that are not us all, and we thank her for her necessarily addressed in a regular commitment to PSC and to clinic. For example, she has Canadians living with Parkinson’s. been instrumental in establishing a network of consultants in Marie-Josée Fortin from Montreal, physiotherapy, psychology, Quebec, has been described as a speech therapy, social services, Left to right: Jan Duff, Ruth Vant, Mimi Feutl, Peggy Grey and Barry Johnson. steady force. A passionate and ded- and other services not directly icated nurse, research co-ordinator, available in a clinic setting. Peggy Grey of the Parkinson’s nurse clinician and patient advo- Marie-Josée has inspired the Disease and Movement Disorders cate are just a few of the roles Parkinson’s community to assist, Clinic at is this year’s second recipient of support and serve those living known as the “person who’s really the Mimi Feutl Award fills. Her with Parkinson’s and their families in charge of the clinic since its dedication and passion for her and caregivers. inception in 1976 until her retire- work has not lessened over the PSC congratulates all recipients ment this year.” Among her accom- years. In the true spirit of Mimi of the 2004 National Volunteer plishments, Peggy was one of the Feutl, Marie-Josée has always Awards. original members of the Parkinson made time for the direct care of Study Group, an international her Parkinson’s patients. She not Please view our website group of individuals with the com- only provides clients with a com- (www.parkinson.ca) over the mon goal of performing clinical plete evaluation of their clinical coming months for information research in the hope of developing status but also looks after their about the 2005 Annual General better treatments for those suffer- overall well-being. Meeting, National Volunteer ing from Parkinson’s. Peggy has She has always gone beyond Awards and the Third Annual taught hundreds, if not thousands, the call of duty to arrange for Donald Calne Lectureship.

WEBSITE HIGHLIGHTS Visit us on-line: www.parkinson.ca Our website has a new look and is being updated regularly! Please watch for more changes in the months ahead. Some of the new materials includes A map of Canada to direct you to your Parkinson Society Canada (PSC) regional partner. Click on the map to locate the regional partner closest to you and to read the news from the regions. PSC and Parliament Hill celebrate PSC’s 40th Anniversary and April Awareness 2005. Click on Headline News. PSC announces 2005 Donald Calne Lectureship. Click on Headline News. Manulife Financial and PSC join forces to help Canadians with Parkinson’s disease. Click on Headline News.

Send your comments and general suggestions for our website to [email protected]

Spring 2005 P arkinsonPost 15 2004 Annual General Meeting PSC’s Annual General Meeting (AGM) was held on Sunday, November 5, 2004, at the Delta Meadowvale Resort and Conference Centre in Mississauga, Ontario. Participants included the National Board of Directors, Regional Board Chairs, Regional Executive Directors from regional offices across the country, national staff, PSC volunteers, donors and stakeholders. Joyce Gordon, PSC’s President and CEO, addressed the Parkinson community, highlighting accomplishments over the past year and speaking of the passion for the Left to right: Joyce Gordon, President and CEO, PSC, talks to Oleh Hornykiewicz, PSC mission that is shared by staff and Professor Emeritus, and Barry Johnson, National Board Chair. volunteers alike. Barry Johnson, National Board Chair, called the AGM to order. PSC’s Annual General Meeting was followed by the Annual National Volunteer Awards Ceremony, and then the final item on the agenda, the second annual Donald Calne Lecture. World-renowned scientist Professor Oleh Hornykiewicz, Professor Emeritus, delivered the lecture. Professor Hornykiewicz joined us from Vienna, Austria, to present a state-of-the-illness lecture and to answer questions from the audience. The 2005 Annual General Meeting and the third annual Donald Calne Lecture will take place November 4–6, 2005 in Winnipeg, Manitoba. The meeting and lecture will be hosted by regional partner Parkinson Society Manitoba.

Joyce Gordon (left), President and CEO, PSC, chats with Les Whiting, National Board member.

Seated left to right: Ruth Vant, Executive Director, Parkinson Society Ottawa, and Judy Axelson, Executive Director, The Parkinson’s Society of Southern Alberta. Standing left to right: Mary Jardine, former National Executive Director, PSC, and Lois Raphael, Executive Director (now retired), Parkinson Society British Columbia.

National Board of Directors. Back row, left to right: Barry Johnson, Calgary, Alberta; John Parkhurst, Penetanguishene, Ontario; Bernard Lefebvre, Otterburn Park, Quebec; Lucie Lachance, Montreal, Quebec; Bruce MacGowan, Toronto, Ontario; Les Whiting, Coquitlam, British Columbia; Kelly McKay, Halifax, Nova Scotia; and Jim Emmett, Calgary, Alberta. Front row, left to right: Isabel Ward, Ingersoll, Ontario; Anne-Louise Lafontaine, Montreal, Quebec; Fran Squire, Ottawa, Ontario; Alan Riccardi, Ottawa, Ontario; Bob Ashuk, Winnipeg, Manitoba; Elizabeth Holloway, St. John’s, Left to right: Meredith Saunderson, National Newfoundland and Labrador; Georges Allard, Sherbrooke, Quebec; and Meredith Board member; Robert Feutl; Mimi Feutl, Saunderson, Toronto, Ontario. Not pictured are David Whittle, North Vancouver, British former National Director of Patient Services, Columbia; Mike Harris, Toronto, Ontario; and Russell Armstrong, Ottawa, Ontario. PSC; and Marilee Weisman, volunteer.

16 P arkinsonPost Spring 2005 outstanding 40 achievements mark th By Carol Jamieson our 40 anniversary To celebrate our 40th anniversary, we looked back at some of the people and events that have shaped our history. We’ve selected 40 highlights from our hundreds of achievements to mark our special anniversary.

1 1965 9 1988 19 1996 Information and ■ Creation of Canadian & ■ First national annual ■ PSC supports develop- Resource Kit created Parkinson’s Disease 10 sale of James Parkinson ment/validation of first and distributed Association tulip bulbs North American scale 29 2005 ■ 2 1971 First edition of the to measure quality of ■ PSC’s Joyce Gordon ■ Name change to The brochure “Parkinson’s life in Parkinson’s celebrates Parkinson’s Parkinson Foundation Disease: The Facts” 20 2001 Disease Awareness of Canada 11 1990s to ■ Revised mission and Month on Parliament Hill with Senator 3 1978 & ■ Volunteers successfully 24 new name: Parkinson Michael Pitfield, ■ Director Mimi Feutl 12 lobby Nova Scotia gov- Society Canada ■ Minister of National identifies need for local ernment to allow cell National agreement Defence Bill Graham, volunteer services transplant surgery trials among Canadian ■ Bill Harshaw persuades Parkinson’s organizations and Minister of Health 4 1980 Ontario government ■ Relaunch of Ujjal Dosanjh. ■ Research Fellowship to to include people Parkinson Post 2005 Playfair Neurological 30 with Parkinson’s on ■ New logo PSC funds support: Institute to ■ ■ the Ontario Trillium Start of National 40 UBC PET program, 5 1981 Drug Plan Information & only one of its kind ■ First Scientific Advisory & 1990 Referral Centre in the world devoted Board/National Research 13 6 ■ First known SuperWalk 2002 to Parkinson’s Program to 25 ■ Launch of Clinical ■ Donald Calne ■ World-renowned ■ First research grant 17 Assistant Program Lectureship created Parkinson’s researchers: to Dr. Clement Young ■ First national annual - Dr. Ali Samii of Toronto 26 2003 - Dr. Peter Cut-a-Thon ■ PSC works with Health 1982 ■ St. George-Hyslop 7 First annual Blue Jay Canada to produce first- ■ First operating grant - Drs. Edith and Pitch-in for Parkinson’s ever economic statistics (of several) to professor ■ Patrick McGeer Tulip of Hope greeting about Parkinson’s disease Oleh Hornykiewicz, - Dr. Pierre Blanchet card becomes part of 2004 international pioneer boutique sales 27 - Dr. A. Jon Stoessl ■ PSC hosts eighth in Parkinson’s research & - Dr. Judes Poirier 18 1992 International World 8 1984 ■ 28 - Dr. Ali Rajput Community Outreach Parkinson Day ■ First Parkinson Awareness - Dr. Donald Calne Program begins ■ Family Physician Week in Canada - Dr. Rémi Quirion

Visit www.parkinson.ca and click on the 40th anniversary icon for more history.

Spring 2005 P arkinsonPost 17 A look at current Parkinson’s research aro Research Editor: Dr. John Wherrett

Parkinson’s and driving with Parkinson’s would not have (autosomal dominant, where a single Until a few years ago, only people met the standards of the state driv- copy of a mutated gene is sufficient with Parkinson’s who had advanced ing test as opposed to five per cent to disrupt gene function). In the symptoms were thought to be at of the control subjects. Specific dominant forms, the disease is risk for unsafe driving behaviour. difficulties included errors in keep- manifest in succeeding generations, However, recent reports of sudden ing to the lane, changing lanes, whereas in the recessive forms, onset sleepiness, attributed to some reversing, parking and monitoring succeeding generations will not be of the anti-parkinson’s drugs, have blind spots. These difficulties were affected unless a new copy of the focused attention on earlier stages thought to result from decreased mutated gene is introduced by an of Parkinson’s. motor control, impaired visuospatial unrelated spouse. An Australian team, consisting processing, controlling of sequential From this knowledge of the of optometrists, a kinesiologist, a events, and planning. The duration normal and separate function of neurologist, an occupational thera- of the illness was a predictor of these genes, it can be postulated pist (OT) and a driving instructor, impaired performance; however, that cellular damage occurs because compared a volunteer group of people the standard clinical scales of of abnormal aggregation of the with Parkinson’s with a control severity were not. protein -synuclein. This occurs group of people without the disease The authors concluded that because of structural abnormalities who had similar driving experience. implications for driving should be in, or excessive amounts of, -synu- The assessment considered the discussed at diagnosis of Parkinson’s clein; dysfunction of the normal duration and degree of the disease as disease and that driving assessments pathways for breakdown of the well as driving experience and should be considered earlier in the protein, as in Parkin and UCHL1; habits. Performance was measured course of the disease to ascertain and the effects of excessive oxida- on a standardized open road course the need for future planning. tion, as in DJ-1 and Pink1. monitored by the OT and driving References: Journal of Neurology, In 2002, a new gene link associ- instructor, and scored for 147 loca- Neurosurgery and Psychiatry, 2005. ated with autosomal dominant tions along the course. The subjects Parkinson’s was detected in Japan. also scored their own performance. Advances in the genetics of In subsequent work, the gene It should be noted that the people Parkinson’s disease was identified, characterized and with Parkinson’s who volunteered Major discoveries of the genetic named leucine-rich repeat kinase-2 were a select group who do not causes of Parkinson’s disease (LRRK2). Its protein product is necessarily represent the general continue to shed light on the called “dardarin,” derived from Parkinson’s population. For example, underlying mechanisms leading the Basque word dardara for tremor. they may have volunteered because to nerve cell death. This protein has enzymatic activity they were concerned about driving Mutations in three genes called (kinase activity) that adds a phos- or were confident about their skills. Parkin, DJ-1 and Pink1 cause a phorus atom to other proteins—a The researchers found that the recessive form of the disease (auto- common form of molecular signal- people with Parkinson’s were driving somal recessive, where two copies ing in cells. This may give a totally less than the controls but considered of mutated gene are present). new insight into the mechanisms themselves equally safe drivers. Mutations in three other genes that injure nerve cells affected in However, the driving assessment called -synuclein, UCHL1 and Parkinson’s disease. Dardarin showed that 56 per cent of the people NR4A2 cause a dominant form mutations appear to be much

EDITOR’S NOTE: Please remember that clinical studies, research findings and other information featured in Research Report are often of a preliminary or investigative nature. Results may not be applicable to all cases and actual treatments resulting from findings can take time to be developed. The information contained here is for interest only and should not be construed as advice or recommendations.

18 P arkinsonPost Spring 2005 Focus on… Dr. Jennifer Takahashi PSC Boehringer Ingelheim und the world Clinical Movement Disorders Fellow Movement has always been a vital part of Dr. Jennifer Takahashi’s life. more common than other inherited While training to be a professional ballerina at the National Ballet School in Toronto, Dr. Takahashi forms, accounting for five to six learned and practised the intricate movements of per cent of familial cases and one dance. Now, she is viewing movement from a totally different perspective at the to two per cent of sporadic cases. Centre for Movement Disorders in Markham, Ontario. Although different mutations “Even while I was training in ballet, it was my intention to eventually pursue have been encountered, one appears a career in medicine,” says Dr. Takahashi. “After I graduated, I decided I didn’t to predominate. Affected individuals want to wait.” develop typical Parkinson’s disease, Dr. Takahashi studied medicine at Queen’s University in Kingston, Ontario, responsive to treatment and exhibit- subsequently receiving her neurology training at the University of Calgary and University of Alberta. “Neurology had always interested me,” she explains. ing the common complications “It is an intimate, personal specialty that lets you really get to know patients of treatment. Pathological studies and their families.” to-date suggest that the mutations She had focused on multiple sclerosis before becoming involved with can be associated with cellular Parkinson’s and other movement disorders. “I had enjoyed my experiences with changes characteristic of a number Parkinson’s patients and wanted to learn more,” recalls Dr. Takahashi. “Then I met of neurodegenerative diseases, Dr. Mark Guttman at the annual movement disorders course for neurology resi- such as diffuse Lewy body disease, dents, and I was very impressed by his attitude and multidisciplinary approach.” Following a maternity leave, Dr. Takahashi was awarded the PSC Boehringer progressive supranuclear palsy, Ingelheim Clinical Movement Disorders Fellowship, giving her the opportunity to and other dementias. work with Dr. Guttman at the Centre for Movement Disorders. Reference: Lancet, 2005 “I am involved in some research,” she notes. “For example, one of the projects involves looking at the efficacy of an interdisciplinary model of caring for people Testing the placebo effect with Parkinson’s. But about 80 per cent of my time is spent in the clinic, working Placebos are “dummy” medications with patients. That’s the place where you really learn about treating this disease.” given to patients in the course of On completion of her Fellowship, Dr. Takahashi plans to return to her native clinical trials, which are designed Kamloops, British Columbia, with her husband, Dr. Anders Ganstal. “I plan to join to test a drug’s effectiveness. They a neurology practice with two other clinicians,” she says. “My focus will be on are assumed to be ineffective and movement disorders. The experience I will have gained from this Fellowship will are intended to serve as a compari- be invaluable.” son to the drug being tested. If the therapeutic responses in the subjects ing the mechanisms that underlie reward circuitry was measured. who received the drug outweigh the placebo effect. Using metabolic Thus, it appears that the percep- those measured in the subjects imaging with positron emission tion of possible benefit, even if who received the placebo, the tomography, they have shown that receiving an inactive drug, could drug is considered to be effective. circuitry in the brain, sub-serving activate systems mediated by But what if the subjects are the unconscious perception of dopamine and favourably affect found to derive some benefit from rewards promoting survival, is symptoms of Parkinson’s. A the placebo? For some time, it has activated by placebo. These circuits spontaneous example of activation been apparent that subjects in trials are not only located close to the of the reward circuitry may occur of drugs for Parkinson’s disease circuit (nigrostriatal tract) that is in the phenomenon of kinesia para- (and for other disorders) do derive affected in Parkinson’s disease, doxica (paradoxical ability to move), benefit from placebos—the so-called but also are largely dependent on wherein a patient with advanced “placebo effect.” This response, if dopamine. This has been supported Parkinson’s disease experiencing marked, can confuse interpretation in studies of patients undergoing a life-threatening emergency is of the trial. electrode implantation for deep able to move.

Investigators at the University of brain stimulation, where electrical References: Biological Psychiatry, 2004; and British Columbia have been study- activation of nerve cells in the Nature Neuroscience, 2004

Spring 2005 P arkinsonPost 19 Up-times and off-times: Living life with Parkinson’s By Ken Chute, Lower Sackville, NS

remember clearly that Since my 1996 diagnosis, I have mind. I often think about the effect I February day in 1996 when been on an interesting ride as the of the condition on my life and Dr. Bahn said to me, “You already disease progresses. I require more my family. And since the effects of know what you have.” In 1969, my medication, experience more com- PD are progressive—the average dad was diagnosed with Parkinson’s plicated swings from dyskinesia to time from diagnosis to when PD disease (PD). And since 1969, my bradykinesia, and see a number of medication is no longer effective mom and two of my aunts on my strange outcomes that are increas- is estimated to be 10 to 12 years— mother’s side were told they had ingly hard to understand and to I become concerned. During my the condition. So in 1996, I was explain. Even so, without the up-times, however, I crowd all of the diagnosed as “one of them.” medication, I would return to all of activities that I value into my sched- For several years, under Dr. the ravages of Parkinson’s disease. ule, and I generally forget about the Bahn’s guidance, I experimented condition. In other words, I get on with various combinations of pills A steady state with my life. Lately, I’ve noticed and time schedules. The objective My medication helps me deal with that my off-times are slowly increas- of these ever-changing combina- cyclic periods called “up-times” and ing and my up-times are decreasing. tions was and still is to provide me “off-times.” Up-times happen when My ideal situation is to have the with the maximum daily up-times the medication is doing its job. Off- medication carefully controlled so when I am neither suffering from times occur when the medication I can achieve a “steady state,” bradykinesia (including moments is either under-reacting (resulting where I become neither over– of freezing) or dyskinesia. These in PD symptoms) or over-reacting nor under–medicated. This in fact experiments result in various forms (when I can’t relax or stop moving). is the objective of the medication of fluctuations and contribute to During my off-times, thoughts Deanna and Ken Chute with their my physical and mental state. about PD continuously flood my daughter Holly.

During my up-times, I crowd all of the activities that I value into my schedule, and I ... forget about the condition. In other words, I get on with my life.

20 P arkinsonPost Spring 2005 selection and times. Since there is The rest of my day isn’t as people will tend to feel uncomfort- no cure for Parkinson’s, the four scheduled, thanks to the unpre- able around you. Showering and pills that I take eight times daily dictability of my up-times and shaving improves your appearance control my quality of life. off-times. Slipping from one state and makes you feel better. The to another is not like flicking a irony of looking your best results A flexible schedule switch. The changes, driven by in comments from your friends and So how do I control my medication? medication adjustments, could take relatives (“Ken, you look great”), My daily routine starts at 5:15 a.m. place in as little as 15 minutes or so it may be hard to explain how when I take my scheduled medica- as much as two hours. In both you’re looking great yet the tion, which I prepare on the previ- cases, I experience various degrees onslaught of PD continues. ous night. From 9:30 p.m. the night of either bradykinesia or dyskine- As I pass my 58th birthday, before to 5:15 a.m. the next day, my sia, so I have no fixed schedule. I seem to reflect more on my medication is kept to a minimum, future. On the upside, I, like many so by 5:15 a.m., I am experiencing A sense of humour other persons with Parkinson’s, most of the Parkinson’s symptoms. These changes, although frustrat- have a relatively positive outlook The morning often sends me into a ing, often provide comic relief. on life. An appreciation for what dyskinetic tailspin, which may last For example, my feet may become one may have once taken for for several hours. Of course, having “frozen.” When I break free, I granted is continuously honed. a tendency towards bradykinesia can almost run (well, trot any- is also undesirable. Both of these ways). At other times, I have A ray of hope conditions affect my concentration. difficulty walking through a Although I’ve spent much effort in Fortunately, these swings often take door, yet I can navigate stairs. dealing with the symptoms of PD, place over only two (out of eight) If you don’t have a sense of my medications have provided me medicated periods. humour, you should develop one, with a quality of life that I could My best and longest up-times particularly when it comes to your only hope for a few years ago. often occur in the late morning. appearance. I know some of the While ideal, a cure would take During this time, I may attend a few physical changes that Parkinson’s as long as 10 years to help people 10:30 a.m. church services in a row. bestows: you can walk with a with Parkinson’s. In the meantime, (Those who see me at church might slow–gaited stance, and your facial a “new to me” pill has shown believe that my health is improving; expression may appear stiff. If you promise in controlling my symp- in fact, the opposite is the case.) hold to an unkempt appearance, toms, so there is always hope.

DON’T MISS AN ISSUE! Coming in the Summer 2005 issue of Parkinson Post

A day in the life of a neurologist with Parkinson’s program at 2005–2007 cycle awards and movement disorder specialist North York General Hospital, will PSC announces the recipients of our Follow Dr. Anthony Lang, one of give an overview of what you need National Research and Clinical Assist- Canada’s top neurologists and move- to know about Parkinson’s and ance and Community Outreach Program ment disorder specialists, as he takes medication. Grant Awards. PSC acknowledges us through a day at a Parkinson’s these clinics, programs and researchers clinic and gives us a view of the many First person as valuable partners working to Ease hats he wears: neurologist, movement Take a magical journey through the Burden; Find a Cure. disorder specialist, teacher and pub- the story and pictures of Carole lished author. Hartzman’s trip to the Galapagos. What’s new Encouraged to “get on with life” after Read what’s new on the advocacy Parkinson’s and medication being diagnosed with Parkinson’s in front, the latest on Parkinson’s Chee Chui, Pharmacist and 2004, Carole immediately booked her research from around the world, Co-ordinator of The Living Well adventure of a lifetime. and the latest resources.

Spring 2005 P arkinsonPost 21 I’ve been having problems medication. However, the pattern of Excessive daytime drowsiness Q sleeping since my diagnosis disturbance should be established (EDS): In Parkinson’s, this may be with Parkinson’s. Is this normal? and other methods of promoting a result of the disease itself, or sleep hygiene should be explored. may result from some of the drugs Sleep disorders are common If insomnia is caused by changes used. For example, dopamine A in Parkinson’s disease. A related to motor symptoms, manage- agonists may produce somnolence survey published in 1982 found that ment may consist of adjusting in 10 per cent to 25 per cent of 74 out of 100 Parkinson’s patients dopaminergic drugs, so that noctur- individuals. If the offending drug had significant sleep-related com- nal “off” periods can be minimized. cannot be stopped or reduced, a plaints. In addition, sleep disorders The discomfort and fear of wak- stimulant, such as modafinil, is may result in an exacerbation of ing up immobile during the course sometimes added to the drug Parkinson’s symptoms. of the night can be a major source of regime to counteract EDS. Some In general, sleep disorders are concern to people with Parkinson’s. people with Parkinson’s may con- grouped under the categories of This must be weighed against some tinue to experience EDS despite the insomnias, parasomnias and of these drugs causing sleep prob- manipulations in their drug regime. disorders associated with excessive lems of their own, including vivid Sudden onset sleep attacks: These drowsiness. Sleep disorders of dreaming. consist of a sense of overwhelm- interest to people with Parkinson’s REM Behaviour Disorder (RBD): ing sleepiness and can occur with- include the following: In people with this condition, the out warning. They may occur in Insomnia: Insomnia is the most usual loss of muscle tone associated the context of EDS or may be a commonly reported sleep disorder with REM sleep does not take separate entity. Since there is no for people with Parkinson’s. It place; therefore, the patient becomes warning, people may be unable may be the result of an underlying very active, thrashing around and to protect themselves during a depression, a common accompani- posing a danger to his or her bed certain activity; for example, ment of the disease. This possibility partner. This condition is common while driving. For this reason, needs to be explored. Treatment in Parkinson’s, but it may also they pose major safety concerns, possibilities may include the use occur in several other neurological and it may be necessary to forbid of an antidepressant. conditions. Clonazepam has been driving. These attacks were first Sleep fragmentation (where the used with considerable success in described with the dopamine ago- individual falls asleep but wakes the treatment of RBD. nists pramipexole and ropinirole, up repeatedly) is noted by 39 per but subsequent studies have Abnormal dreaming: This may be cent of people with Parkinson’s as shown that they may occur with a side-effect of dopaminergic drugs compared to 12 per cent of normal other dopamine agonists as well and may become worse the longer elderly individuals, according to as with levodopa. these drugs are used. Vivid dreaming a study from Norway. These It is important to discuss any is the most common manifestation, individuals may need to use sleep sleep-related problems frankly and the person may sometimes with the treating physician. have difficulty differentiating what Quality of life may be signifi- was real from the dream itself, cantly improved for a person upon awakening. Night terrors may with Parkinson’s by treating his be forgotten by the person upon or her sleep disorder. waking, but may be a source of anxiety for the family, as he or she Tilak Mendis, MD, FRCPC, FACP seems to be in a state of distress Director, Parkinsons and during the event. These disorders Neurodegenerative Disorders Clinic; may require changes in medication Consulting Neurologist, Movement regimes, particularly those taken Disorders Clinic, The Ottawa Hospital just prior to going to sleep. and Kingston General Hospital.

22 P arkinsonPost Spring 2005 Parenting Your Parents, The Parkinson’s Disease The Official Patient’s www.healingwell.com second edition Treatment Book Source Book On Parkinson’s Reviewed by Peggy Yates By Bart J. By J. Eric Ahlskog, MD Edited by Mindszenthy and James N. Parker, MD, and HealingWell.com is an Reviewed by Michael Gordon, MD Philip M. Parker, PhD information resource for Gerry Kelleher patients, caregivers, and Reviewed by Reviewed by Reading this book gives families coping with dis- Marilee Weisman Marilee Weisman you a better understanding eases, disorders and of Parkinson’s disease chronic illness. Their goal When you spot a book The organization of this and its treatments. is to help people on their on aging by Michael electronic book is beauti- Parkinson’s is explained way to “healing well.” Gordon, MD, you can be fully executed. The content in detail—from changes There is a great deal confident that it will be is broken down into three in the brain to diagnosis— of information about worth reading. main parts: Essentials, in easy to understand Parkinson’s disease on this This opus presents an Additional resources and terminology. site. It is easy to navigate abundance of caregiving advanced materials, and Author J. Erie Ahlskog, and the information is information, including Appendices. MD, gives readers straightforward and cur- examples of different Within seconds of open- the tools to manage rent. The chat forum is scenarios and a compre- ing this book, you’ll easily Parkinson’s more effec- busy, and there are mes- hensive personal parenting find the topic you’re search- tively. The Parkinson’s sages from people of differ- planner, which the authors ing for. For example, in the Disease Treatment Book: ent ages. For information encourage you to prepare Essentials section, you’ll Partnering With Your that deals with questions before making any drastic find the question “Can diet Doctor To Get The Most from the newly diagnosed care decisions. or exercise programs help From Your Medications, to information for families Chapter headings seem relieve symptoms?” The is a must-read for everyone and care partners to to cover every eventuality: answer inside is “Exercises at all stages of the disease. Parkinson’s research, this from “Dementia and may improve body strength It will be particularly help- site provides easy access Depression: Reading the ... exercises also improve ful to caregivers and the to information that will Signs” to “Siblings: balance....” Under the head- newly diagnosed as they assist and inform. In Charge and On the ing “Working with your gain a better understand- Health content is Attack” to this reviewer’s doctor” is more good ing of this disease. contributed by reputable favourite, “Breaking the advice. A wide variety of The Parkinson’s health organizations, Mold: The Rebellious subjects are covered a Disease Treatment Book including the National Grandmother.” consumer-friendly way. is published by Oxford Institutes of Health, This revised second Published by Icon Health University Press and is Healthology Inc., and edition has new stories Publications. To order, visit available at your local Mediwire. and an updated resource www.icongrouponline.com/ bookstore. Visit www.healingwell.com. directory. I enthusiasti- health/. cally recommend this useful work to friends. Please remember that while Parkinson Society Canada provides information about the availability of new resources Visit www.parenting in this section, this does not necessarily imply recommendation or endorsement of the contents. yourparents.ca

Spring 2005 P arkinsonPost 23 We Need Your Support

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cure as well as Parkinson’s support programs across Canada.

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