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Spring 20062006 Volume 66 IssueIssue 11 $4.50

The Faces of Parkinson’s CourageousCourageous andand determined:determined: PatPat FlemingFleming takestakes onon Parkinson’sParkinson’s OnOn thethe geneticgenetic trail:trail: Dr.Dr. Wszolek’sWszolek’s searchsearch forfor LRRK2LRRK2

Photo: Lowe Terry PLUSPLUS SuperWalkSuperWalk 2006:2006: MeetMeet ourour VolunteerVolunteer JoinJoin ourour questquest AwardAward WinnersWinners

Ease the Burden; Find a Cure Sales Product Agreement No. 40624078. 510850BCS 5/31/06 5:24 PM Page 2

Collect pledges and walk with your family and friends. There are so many ways to be involved.... Be a SuperSTARWalker Raise over $1,000 and in addition to your shirt receive a hat and pin for each year you reach this level. Plus, there are special prizes and incentives just for these walkers! Be part of a team Bring your friends and family and Join us. Be part share the fun by walking as a team Be a volunteer of SuperWalk for Call the regional office closest to you and volunteer to work on a Parkinson’s this SuperWalk committee. September! Great prizes! Great fun! Easy to be involved with on-line registration!

For every $100 raised each walker gets a chance to win some great national prizes so come out and join the fun! On-line registration opens May 1st, 2006 for all walkers across the country.

For details about a walk near you and to register on-line visit www.superwalk.com 510850BCS 5/31/06 5:24 PM Page 3

Moving forward with purpose, energy and promise Editorial Advisory What an exciting time to become Chair of Parkinson Society Canada! Committee I have been committed to the “cause” since 2000, when I was inspired by a close friend with Parkinson’s to become involved with the chapter. I Bonnie Clay Riley was subsequently invited to join the national board in 2003. Person with Parkinson’s Now, as Chair of PSC I see my primary roles as ensuring that our efforts are B.C. coordinated and that we all work together effectively. By helping to build a cohesive and focused team, we will be able to best meet the many challenges Rebecca Gruber that lie ahead, both external and internal. Physiotherapist We are constantly at how PSC challenges itself—always searching Ontario for the best and most innovative ways to meet the needs of approximately Jan Hansen 100,000 Canadians living with Parkinson’s. Director of Support Services Change is vital to the success of any organization. It provides opportunities The Parkinson’s Society for open dialogue and problem solving. It improves communication and pro- of Southern Alberta vides the chance to reconfirm commitments. Our team of dedicated, enthusiastic volunteers and staff are planning Shirin Hirji together for the future—to move forward as a united organization with a Person with Parkinson’s Quebec common mission and values. • Our goal is to respond quickly to requests for support, create partnerships to Beth Holloway strengthen our national voice and advocate for crucial resources. Person with Parkinson’s • Our mandate is to continue funding the best in Parkinson research with the Newfoundland and Labrador ongoing support of generous individual donors and the business community. • Our desire is to inspire and energize a group of caring volunteers from every Dr. Mandar Jog corner of this country in a shared quest to make a real difference in the fight Neurologist against Parkinson’s. Ontario • Our collective objective is to be compassionate and respectful of the people Barbara Snelgrove we serve. National Manager • Our hope is no matter where you live in Canada, you are able to find an effec- Education and Services tive Parkinson community with a sympathetic ear, factual PSC National information and access to a variety of essential services. Our vision will always be to guide the decisions we Marjie Zacks make by asking one simple question, “How will this National Director Communications and Marketing benefit or serve people living with Parkinson’s, their PSC National families and care partners?” We will keep you informed on our progress and Dr. John Wherrett look forward to your input. Neurologist Ontario

ON OUR COVER: Pat Fleming from , Ontario, was diagnosed with Parkinson’s Alan Riccardi, disease 19 years ago. Today, thanks Chair, Board of Directors, to her courage and determination, Pat is enjoying life to the fullest. Parkinson Society Canada Read her inspiring story on page 8. Toronto, ON

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ParkinsonPost A quarterly magazine for Canadians living with Parkinson’s

Parkinson Post Vol. 6, Issue 1, Spring 2006 FEATURES Parkinson Society Canada 4211 Yonge Street, Suite 316, Faces of Toronto, ON M2P 2A9 Editor: Parkinson’s Marjie Zacks Courageous and SuperWalk 2006 Publisher: determined: BCS Communications Ltd. SuperWalk for Parkinson’s: Pat Fleming Join us in our quest to How to contact Parkinson Post: challenges Parkinson’s 8 set a new record 14 Parkinson Post 4211 Yonge Street, Suite 316 Volunteers Awareness Toronto, ON M2P 2A9 Phone: (416) 227-9700 National Volunteer April Awareness Awards: Toll Free: (800) 565-3000 2006: Spreading Fax: (416) 227-9600 Meet three caring the word E-mail: [email protected] people worthy across Canada 16 [email protected] of recognition 11 Website: www.parkinson.ca First Person Parkinson Post (ISSN #1489-1964) is the official Research Staring down publication of Parkinson Society Canada, and is published quarterly by BCS Communications Ltd., 101 Thorncliffe Following a genetic Parkinson’s: Alistair trail: Dr. Wszolek Park Drive, Toronto, ON M4H 1M2. Tel: (416) 421- Thomson on 7944 Fax: (416) 421-0966. All rights reserved. searches making the for LRRK2 Contents may not be reproduced without permission 12 most of life 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 Research Report are not necessarily the opinion of Parkinson Society Letter from A look at current Parkinson’s Canada or the publisher. Canadian Publication Mail Parkinson research around the world 18 Sales Product Agreement No. 40624078. © 2006 Society Canada Advertising Policy • Explaining nigrostriatal The acceptance of advertising in Parkinson Post is not an Moving forward with tract degeneration indication that Parkinson Society Canada or any of its purpose, energy • How levodopa treatment works divisions endorses any of the products or services listed. and promise 3 For people living with Parkinson’s, it is recommended • Donald Calne Lectureship awarded they consult their health professionals before using any therapy or medications. Parkinson Society Canada Regional Partners/Roundup • Focus on Dr. Oury Monchi accepts no responsibility for any claims made in any Highlights from PSC advertisement in Parkinson Post. partners across Canada 5 Website Highlights Our mission The Advocate Your guide to what’s new on-line Parkinson Society Canada/ Issues of interest to people www.parkinson.ca at 22 Société Parkinson Canada with Parkinson’s 7 is the national voice of Resources Canadians living with Health Tip Parkinson’s. Our purpose A selection of the latest Don’t meddle is to ease the burden educational resources with medications 7 23 and find a cure through research, education, Ask the Expert advocacy and support services. Using massage therapy to control Parkinson’s symptoms 22

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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 The Parkinson’s Society of Alberta on March 30. The event, which was 4211 Yonge Street, Suite 316 Edmonton General, Room 3Y18 organized by the Curling Classic Toronto, ON M2P 2A9 11111 Jasper Avenue and PW Golf Classic Committees, Ph: (416) 227-9700 Edmonton, AB T5K 0L4 represents a 13-year goal to raise Toll Free: (800) 565-3000 Ph: (780) 482-8993 one million dollars for Parkinson Fax: (416) 227-9600 Toll Free: (888) 873-9801 research in Saskatchewan. www.parkinson.ca Fax: (780) 482-8969 Annual Curling Classic for www.parkinsonalberta.ca Parkinson’s Research held on Parkinson Society British Columbia Three posters/abstracts based March 31 and April 1. 890 West Pender Street, Suite 600 on a survey of persons with SuperWalk 2006 in Saskatoon is , BC V6C 1J9 Parkinson’s and their caregivers planned for September 10. Ph: (604) 662-3240 were presented at the World Toll Free (BC only): (800) 668-3330 Parkinson’s disease Congress. Parkinson Society Manitoba Fax: (604) 687-1327 New support groups started 171 Donald Street, Suite 302 www.parkinson.bc.ca in Vegreville and Slave Lake. , MB R3C 1M4 Hired a part-time information The Edmonton speech support Ph: (204) 786-2637 and programs co-ordinator, group was revived and will meet Toll-Free: (866) 999-5558 Robbin Jeffereys. twice a month. Fax: (204) 786-2327 Carmen Dyck, director of support Over 2,100 potted tulips bloomed Welcomed Laura Asher, services, visited 12 support groups. across northern Alberta for BComm (Hons), new events Participated in two major health Parkinson’s awareness month. and development co-ordinator. fairs in the lower mainland. Annual general meeting was New slate of officers for advisory Held a successful major fundraising held and “28th Annie Wyley Board of Directors: Marc Pittet, gala event on April 27, 2006. Memorial Lecture” was presented Chair; Tom Hodgson, Vice-Chair; by Dr. Richard Camicioli on Colleen Johnston, Secretary; Victoria Epilepsy and Parkinson Centre “Thinking changes in Parkinson’s Shaun Hobson, Acting 813 Darwin Avenue disease,” attended by over 100 Treasurer; Bob Ashuk, National Victoria, BC V8X 2X7 people on April 22, 2006. Representative; Adrienne Toews; Ph: (250) 475-6677 Don Dietrich; Wayne Buchanan; Fax: (250) 475-6619 The Parkinson’s Society Louis Maric; JoAnne Minkus; www.vepc.bc.ca of Southern Alberta and Terry Snell, Past Chair. A new Parkinson’s Mind Body 102-5636 Burbank Crescent SE Speech therapy and Brain Gym program has been launched , AB T2H 1Z6 programs for people with that incorporates special needs Ph: (403) 243-9901 Parkinson’s have been successful, yoga with attention to positive Toll Free (Alberta): (800) 561-1911 based on satisfaction surveys thinking and stress release. Fax: (403) 243-8283 received. A clinical nurse specialist www.parkinsons-society.org Lisa Gilmour, BA (Advanced), presented a very helpful educa- An evening of free massage administrative assistant, has tional session on “Dealing with therapy for people with been named to the National constipation and other digestive Parkinson’s was offered by the Advocacy Committee. problems.” local College of Massage Therapy. Specialists delivered excellent A new series of the Brain Waves PSC Central and Northern presentations on “Living well program is being offered in Ontario Region with Parkinson’s: A physician’s northwest Calgary. 4211 Yonge Street, Suite 321 perspective,” “Getting the most from Yang-style Tai Chi programs are Toronto, ON M2P 2A9 your medications,” and “Managing well attended in two locations Ph: (416) 227-1200 speech and swallowing changes.” in Calgary. Toll Free National: (800) 565-3000 Collaborated on an interactive Exercise programs and support Fax: (416) 227-1520 website to help clients track groups are doing very well with Education session was held in health symptoms in regards to the addition of three new groups. Barrie in February with movement Parkinson’s. Site launched in disorder specialist Dr. Rana. the spring. Saskatchewan Parkinson’s Spring 2006 Livewire publication Golf tournament plans are well Disease Foundation was distributed to 7,100 individuals. underway with an anticipated 103 Hospital Drive, Box 102 continued on page 6 $50,000 net revenue from the event. Saskatoon, SK S7N 0W8 A Parkinson’s Festival and Ph: (306) 966-1348 Fax: (306) 966-8030 SuperWalk for Parkinson’s E-mail: [email protected] will be held in September. Held Million Dollar Dream Dinner

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April Awareness events included One group, “Thursday Night topics related to Parkinson’s. tulip sales and tulip card Live,” is unique: they meet the Visit www.parkinsonmaritimes.ca. fundraisers. first Thursday of each month to Awareness month lecture series Additional education sessions discuss current issues and recent with Sandie Jones of Central held in April, including the First resource materials. and Northern Ontario Region Annual Agro Series Educational held in Saint John, Summerside, Session featuring Dr. Mandar Jog. Société Parkinson du Québec Sydney and New Glasgow. 550 Sherbrooke Street West Bridgewater chapter hosted an PSC Southwestern Ontario Office 1470, Tower West Awareness Month workshop on 4500 Blakie Road, Unit #117 , QC H3A 1B9 April 11, World Parkinson Day. London, ON N6L 1G5 Ph: (514) 861-4422 Annual “Wing It For Parkinson’s” Ph: (519) 652-9437 Toll Free: (800) 720-1307 was held in Moncton and Saint Toll Free Ontario: (888) 851-7376 National francophone line John on April 24. Fax: (519) 652-9267 Fax: (514) 861-4510 Fourth annual “Porridge for www3.sympatico.ca/pf.swo www.infoparkinson.org Parkinson’s” was held on Submitted $172,496 to PSC New executive director is April 22. CBC morning host National to support research and Jean-Marie Bergeron. The Quebec Terry Seguin and services. Congratulations to our Board will decrease the number runner-up Casey Leblanc were volunteers, walkers and supporters of board members from 22 to celebrity hosts. for making this support possible! nine, the regional representatives A resource guide has been Introduced an exciting new from 18 to two, and increase the published listing all materials format for the 2006 spring issue number of influential people to held in the Region’s Banyan Tree of The Parkinson Update, reflect- five. The two positions reserved Foundation Resource Centre. ing the energy and enthusiasm for medical professionals were Eight sessions from the fall of volunteers and partners and not touched by this reform. conference are now available encouraging even more commu- Currently searching for a perma- on video and DVD. nity involvement. nent spokesperson who will lend London held its third annual his or her name and image to Parkinson Society Spell the End of Parkinson’s mass mailings, membership Newfoundland and Labrador Scrabble Tournament, raising renewals, and other media The Viking Building $8,267. More tournaments are activities. We are currently 136 Crosbie Road, Suite 305 anticipated this spring. accepting proposals. St. John’s, NL A1B 3K3 Michelle Monger and Darrin This year, SPQ decided to empha- Ph: (709) 754-4428 Beaupre, two students from size World Parkinson Day by Toll Free (NFLD/Labrador): Fanshawe College, worked to renting Complexe Desjardins’ (800) 567-7020 Fax: (709) 754-5868 make April Awareness 2006 La Grande-Place. Roughly 10 Successfully applied to the the best ever. stands were set up, that of United Way to fund a speech PartenairesSanté, SPQ, SPQ therapy program in St. John’s Parkinson Society Ottawa Montreal Region, neurologists, metropolitan area. Special 1712 Carling Avenue nurses, massage therapists and thanks to Mary Chibuk and The Ottawa, ON K1Y 4E9 stands for sponsors related to Parkinson’s Society of Alberta Ph: (613) 722-9238 our cause. for sharing details of their Fax: (613) 722-3241 Fanie Noiseux has joined our speech education program. www.parkinsons.ca team as our new associate direc- Recruited two new Board “Why is this my medication?” tor, replacing Diane Van Erum. members with past board presentation, given by Mrs. Noiseux is a major financing experience, and continued pharmacists Judy Glustien campaign specialist. training for current members. and Mary Joy, attracted a Our lease at 1253 McGill College A new April awareness and full house of participants. has ended. We have relocated to fundraiser event, “Piggies for The second annual Yuk Yuk’s 550 Sherbrooke Street West. Parkinson’s,” and a successful Comedy Night for Parkinson’s flea market and ticket sales was held in mid-January. Over PSC Maritime Region were held. 550 people attended and, along 5991 Spring Garden Road, Suite 830 Excellent media coverage for with sponsors and donors, helped Halifax, NS B3H 1Y6 Joyce Humphries, winner of first to raise over $21,000. Ph: (902) 422-3656 regional Anne Rutherford Selected donors, SuperSTAR Toll Free (NS, NB & PEI): Memorial Award, and Maxine Walkers and Board members (800) 663-2468 Thistle, winner of the national were invited to join in our Fax: (902) 422-3797 David Simmonds award. annual donor appreciation in www.parkinsonsocietymaritimes.ca February. Each guest was treated New interactive website has to either cut or potted tulips. been launched, featuring “Ask an Three new support groups were Expert,” an interactive database of added, bringing the total to 18. questions and answers about

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Issues of interest to people with Parkinson’s Common questions answered by the Asking the government to act now! Canadian Pharmacists By Joyce Gordon Association: Should I keep a record of the Thanks to the diligent work of the Q medications that I am taking? Advocacy Committee, advocacy efforts It’s a good idea to keep a written record continue to gain momentum at the of all medications you are taking, including national level. By building upon the nonprescription and herbal products. Bring grassroots work done during the fed- it with you whenever you visit your doctor or pharmacist, and carry a copy with you at eral election campaign, PSC staff and all times, in case of emergency. Your phar- volunteers successfully secured meet- macist will also keep a record of the medi- ings with key Members of Parliament cines you take and how you have reacted and decision-makers in April. We were to them. Remember to tell the pharmacist first pleased to meet with The Honourable Jack Layton, leader of the NDP, discusses Parkinson’s disease with Yvon of all nonprescription or herbal products • Jo Kennelley, Senior Policy Advisor Trepanier, Advocacy Committee Chair, PSC; you take, since he or she will only know and Joyce Gordon, President and CEO, PSC. to the Minister of Health for sure about the prescription medica- • Nadir Patel, Senior Policy Advisor, Privy Council Office tions you have filled at the pharmacy. • Rahim Jaffer (Edmonton-Strathcona), National Conservative Caucus Chair • Gary Lunn (Saanich-Gulf Islands), Minister of National Resources • Ken Dryden (York Centre), Liberal Health Critic • Penny Priddy (Surrey North), NDP Health Critic • Denise Savoie (Victoria), NDP These meetings provided an opportunity to make personal connections, to educate MP’s about Parkinson’s disease, and to ask for help in achieving our three key objectives: 1. That the Government immediately double the effort to find better treat- ment and a cure by committing to either match or surpass Parkinson Society Canada’s annual research funding of $1 million. How do I store my 2. That the Government help Parkinson Society Canada uncover and gather Q medicines safely? the data needed to understand the full impact of Parkinson’s, so we can You should keep your medicines in the deliver the best care and support today while planning for the future. container that they came in. The bathroom 3. That the Government make universal access to home care supports and cabinet is not a good place because it services a priority issue nationally. gets warm and damp. Always keep medi- Our message to government officials and decision-makers is that we cine out of a child’s reach, and refrigerate need their help and that with each passing day, the urgency increases. Very medication only if it says to on the label. simply, we must act now! How do I get rid of my Over the coming months, Parkinson Society Canada will continue to Q medications safely? communicate with key decision-makers to build our network of friends. You should take all outdated or unused We must generate a groundswell of support. To do so, every Member of medicines you have cleaned out to your Parliament and the Senate needs to hear from someone from the pharmacy for safe disposal, including Parkinson’s community. We welcome volunteers who are willing to write prescription and nonprescription. If you a letter, make a phone call or meet with their representative. don’t know if a medicine is good, ask your pharmacist. Medicine should not For more information about how you can help, please contact Shannon be flushed down the toilet: it’s not friendly MacDonald, Project Manager for Advocacy and Government Relations, at to the environment. Don’t throw it in the (416) 512-8642 or [email protected]. garbage because children or animals may be able to get at it. Ease the Burden; Find a Cure Source: www.pharmacists.ca

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Courageous and determined: Pat Fleming challenges

Parkinson’s and herself By Ian Corks

“ ou have Parkinson’s had a vision of living another diagnosis have been productive and Y disease.” With those four five or six good years, followed fulfilling. Pat has more than met words, Pat Fleming’s world was by spending the rest of my life the challenges of Parkinson’s with changed forever. It was 1987, and sitting in a wheelchair shaking.” a courage and determination that the words of the neurologist took It’s now been almost 20 years has earned her selection as one of a few seconds to sink in. “I felt as since that fateful moment in the PSC’s Faces of Parkinson’s. if I had just been handed a life doctor’s office. And Pat has long sentence, with no appeal process!” since shattered that gloomy vision. A good life Pat recalls. “My view of the future Though not without their trials and The world that changed for Pat that was extremely bleak. In fact, I tribulations, the years since her day was a good one. Born and raised in Toronto, Pat’s formative years were happy ones. She married Ross Fleming, a busy local physician, and devoted the next few years to her family, raising four children. When the kids were old enough, Pat returned to university, studying education, gerontology and coun- selling. This led to an 18-year-plus career with the Family Services Association, where she ran a program offering information and support to older adults and their families in Toronto. It was a job Pat enjoyed, and one that would help prepare her for the challenges that lay ahead. “I had always felt so lucky,” Pat smiles ruefully. “Everything I could dream of I had either achieved or had been given to me. Life was great! I often wondered if the future would bring something to even things up a bit. And indeed it did!”

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The diagnosis of PD marked the she notes. “I certainly had no prob- beginning of a new chapter in the lem empathizing with them!” lives of the Fleming family. “The next few months were the most Keeping busy difficult of my life,” Pat recalls. When she finally retired at the age “My first hurdle was to deal with of 65, Pat still felt the need to stay the shock of the diagnosis. My next busy. “What was I to do with all step was to get more information than taking pills. He also empha- the extra hours I had just been about this devastating disease. I sized the importance of keeping granted?’ Pat recalls asking herself. became more depressed with each active mentally, socially, and physi- “I wanted to find a truly meaning- piece of new knowledge I acquired. cally. It was a call to action for me. ful volunteer job. I happened to I remained in the doldrums for a “I have always believed in fit- notice a newspaper item saying long time.” ness and I love the outdoors, but that the then Parkinson Foundation over the years I have had to adapt. of Canada was planning to set up a Coming to terms When swimming no longer became Peer Support program. It would But rather than meekly give in to safe because I could not stay afloat, provide practical counselling and her situation, Pat decided to fight I obtained a good quality life jacket support on a one-to-one basis, back. “One day I had a sudden pow- and now swim passably well. When especially to people who were erful insight into what I was doing. downhill skiing was no longer safe newly diagnosed. That is exactly I was letting my preoccupation for me, I switched to cross-country what I would have appreciated with my health and the bleak skiing. In time, I had to stop this when I was in those bleak early future I faced waste the very real too, because of poor balance and months. With my professional and potential of the present. Gradually, numerous falls; so I took up snow- personal experience, I knew I could I began to come to terms with my shoeing. really be helpful. Everything just situation and tried to work out “These days, I try to hike for an fell into place after that.” some sort of daily routine. I decided hour or two several times a week, Pat spent the next few years to do as much as I can for as long either with my husband, a family working two days per week as a as I can, taking one step at a time, member or a friend. I love nature volunteer co-ordinator of the Peer challenging myself, but being open trails. Sometimes I walk safely, and Support Program, recruiting, train- to change and adapting as needed.” other times I need to hold some- ing and supervising volunteers. This positive attitude has one’s arm for support. I find the “It helped me to handle my become one of the foundations of weekly exercise and Tai Chi pro- own condition better because I Pat’s life, and she continues to chal- grams offered by the PSC Central learned so much from the people I lenge herself, both physically and and Northern Ontario Region very worked with,” Pat recalls. “I mentally. “I remember attending a helpful. I attend them regularly.” learned from volunteers in the Peer presentation by Dr. George Staying alert mentally is also Support program and clients them- Turnbull,” she notes. “He strongly important. Pat kept working for selves. Some were in pretty bad recommended regular exercise for another 10 years after her diagnosis. shape but still able to share their people with PD. He said exercise “Ironically, many of our clients practical coping skills and wonder- was only slightly less important were also coping with Parkinson’s,” ful sense of humour.”

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Pat also regularly speaks to phar- race and more than capable of mak- macy students at the University ing a contribution. People with of Toronto, providing valuable Parkinson’s disease can still do so insights into PD medications from much—often much more than we a patient’s perspective that the next think we can. I hope this campaign generation of pharmacists find will help everyone, from men and extremely useful. And, of course, women with Parkinson’s to the she has been selected as one of the general public, understand that.” Faces of Parkinson’s. Of course, Pat still has “those “I was a bit reluctant at first,” days,” as she calls them. Days she notes. “I’m not the type of per- when her movement is almost son who likes to stand up and say totally restricted or everything Another key to Pat’s ability to look at me.” However, it was Pat’s seems overwhelming. And she still deal with her condition has been memory of her initial fears that experiences times of doubt. For the unwavering support of her hus- helped convince her. “I knew that example, she admits being worried band. “Ross has been wonderful,” image of an old person sitting in a that her periods of dyskinesia (or she smiles. “He has reached a level wheelchair drooling and shaking the “wigglies,” as the family call of patience and understanding nei- uncontrollably all the time is one them) would scare her grandchil- ther one of us would have believed that too many people associate dren—a fear that has proven possible. More importantly, he has with PD,” she recounts. “I think ungrounded, as her 10 grand- always gently challenged me to do the Faces of Parkinson’s campaign children have responded with just a little more than I felt I could.” can help give people a more realis- unconditional love, support and These days, Pat has cut back on tic view of what Parkinson’s is, understanding. her activities a bit, but she still how people are affected and, most “Life is certainly far from keeps herself busy. She continues importantly, what they are not! perfect,” Pat relates. “I still have to be involved in the cause that is “As one of the Faces of my ups and downs. I still have PD dearest to her heart: helping people Parkinson’s, I hope that I can tell— and try to live one day at a time. with Parkinson’s and their families and show—people that you can’t However, with God’s help, I am and loved ones. She still contributes stereotype someone just because determined that my relationship her expertise and experience to they have Parkinson’s disease. We with my illness will always be one PSC, serving on two committees. are still members of the human of accommodation, not surrender!”

Meet the Faces of Parkinson’s The Faces of Parkinson’s is PSC’s exciting three-year campaign aimed at increasing public awareness and understanding of Parkinson’s disease (PD) by presenting real images and stories of Canadians with PD. Using advertisements, public service announcements, press releases, bookmarks and other initiatives, the campaign will show- case the realities of the disease and profile the courage, challenges and successes of a number of people with PD. A few excep- tional individuals were selected to be the Faces of Parkinson’s (from many possibilities) following a nationwide search. They come from across the country and represent a full range of ages and backgrounds. One thing they all have in common is that they are not letting PD stand in their way. The Faces of Parkinson’s campaign was launched at the end of 2005 and is already well underway. (Editor’s note: For more background on the campaign, see the Winter 2005 issue of Parkinson Post.)

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Honouring people who make a difference

improve the lives of countless people with Parkinson’s and their families.

Morton Shulman Award 2005: Dr. Gordon Hardacre

Dr. Gordon Hardacre has worked tire- lessly to improve the lives of people with Parkinson’s, not just within his region but also across Canada. For over 30 years, Dr. Hardacre has served his Toronto community as a family physician, researcher, Mimi Feutl Award 2005: teacher and advocate. He is currently Sandie Jones Director of Undergraduate Family Sandie Jones has been described as Medicine Education, University David Simmonds Award 2005: a “hard working and dedicated Health Network and Assistant Maxine Thistle servant” to people with Parkinson’s Professor of Family & Community Maxine Thistle has had a tremen- disease and “a pillar of strength to Medicine, University of Toronto. dous impact on the lives of people the Society.” with Parkinson’s in Newfoundland As Director of Client Services and Labrador. and Education for PSC Central Since joining the Executive of and Northern Ontario, Sandie is the St. John’s Support Group in involved in developing educational 1995, Maxine has been a tireless programs and staff and volunteer advocate for a regional board that training, as well as speaking on PD truly served the needs of the people and its effects throughout central in the province. In 2002, she became and northern Ontario, and even Chair of the newly formed Parkinson across the country. In spite of her Society Newfoundland & Labrador busy schedule, however, Sandie (PSNL) Regional Advisory Board. always finds time for individual Armed with her commitment and a consultation. true understanding of the challenges Sandie has used her nursing Dr. Hardacre was diagnosed with of the region, Maxine has been the knowledge and experience to teach Parkinson’s in 1996. In the face of “driving force” behind the board other nurses and caregivers about his own challenging symptoms, he and its ever-expanding programs PD. As one award nominator notes, has not only continued to serve his and activities. “Many thousands will benefit from patients, but has worked to increase In the words of one of her nomi- better-informed nursing and personal the level of understanding of PD nators, Maxine has “infused the care staff who have attended in-serv- among his fellow family physicians. PSNL Regional Advisory Board with ice workshops that Sandie has pre- He was instrumental in developing a wealth of knowledge, an infectious sented on the special requirements the Medical Education and Support dedication to the cause, and a sense of PD.” Since joining PSC in 1996, Program for GPs, and he continues to of joy and humour that is an inspira- Sandie has touched and helped to advocate on behalf of PSC. tion to all.”

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Following a genetic trail: Dr. Zbigniew Wszolek’s search for the elusive cause of Parkinson’s disease By Ian Corks The Donald Calne Lecture series was launched in 2002 by Parkinson Society Canada (PSC). Each year, PSC invites a leading international expert on Parkinson’s disease to address attendees at the PSC’s Annual General Meeting. The 2005 Donald Calne Lecture was delivered by Dr. Zbigniew Wszolek of the Mayo Clinic in Jacksonville, Florida.

specialist in the neuro- common—or sporadic—form of the number of genes that play a role in A genetics and neurophysiology disease in virtually every respect, the disease’s development. Among of Parkinson’s disease (PD), except that it is usually inherited or these is the parkin gene, discovered Dr. Zbigniew Wszolek is world- passed on from a family member. by noted Japanese researcher renowned for his groundbreaking The very nature of familial Professor Yoshikuni Mizuno (the work on genetics and PD. PD allows it to be studied in inaugural Donald Calne lecturer). Dr. Wszolek has a long-standing successive generations, providing Until recently, the parkin gene connection to Canada, frequently researchers with a natural “labora- was the gene most commonly working with Dr. Calne and his tory.” Over the past 10 years, new identified in cases of familial PD. colleagues at the University of techniques and research tools have British Columbia. His Canadian allowed scientists to achieve The road to LRRK2 research played a major part in unparalleled successes in tracking During this period of discovery, the discovery of the gene LRRK2. and understanding genetic PD. Dr. Wszolek was very active in This has been hailed as a signifi- Researchers hope that data gained research on the genetics of PD. In cant finding that could lead to a on why and how cell death occurs 1992, he had started on a line of better understanding of cell death in genetic PD would also apply to investigation that would eventually in Parkinson’s and, eventually, sporadic forms and, therefore, lead to an important breakthrough: curative treatments. Dr. Wszolek strategies for modifying the process the discovery of the novel gene detailed his role in the discovery and preventing cell death would LRRK2. It started with a single of LRRK2 and its potential impli- potentially work for anyone with patient seen by Dr. Wszolek: a 57- cations during his fascinating talk. the disease. year-old woman with moderately The first gene identified as a severe PD. Of particular interest to Understanding genetic PD factor in PD was discovered in Dr. Wszolek, the woman reported While genetic—or familial—forms 1997 by a group from the National that her mother and several other represent a small minority of all Institutes of Health (NIH). The family members had also been cases of PD, the study of geneti- NIH team had been studying a diagnosed with Parkinson’s. cally determined PD is a vital large family from southern Italy Eventually, she and several family component of understanding the with a history of autosomal (passed members agreed to participate in disease as a whole. Genetic PD down from the parents) PD. Since a genealogical study. This family closely resembles the more then, researchers have identified a was named the Western Nebraska

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family and about 200 members tion was different, with some different mutations can occur on were identified. family members showing signs different locations on LRRK2. Cases of PD within this family not only of PD but of Alzheimer What these mutations are and had an average onset age of 64 disease-like dementia as well the where they occur could account for and were associated with the amyotrophy associated with Lou the very specific clinical features classic symptoms of sporadic PD. Gehrig’s disease. Autopsies on two and pathological abnormalities However, a series of four autopsies family members revealed some that are seen in different families. showed some interesting “abnor- abnormal features, specifically Discovering and interpreting malities.” In each of the four the absence of Lewy bodies. this type of genetic data could autopsies, the state of the Lewy point the way to the eventual bodies (abnormal concentrations of Putting the puzzle together development of treatment and protein that can accumulate in The data from these three families even prevention strategies. As nerve cells in the brains of people allowed Dr. Wszolek and others to, Dr. Wszolek notes, “Just like the with PD) was different. This as he puts it, “piece the whole story Rosetta Stone provided our key caused Dr. Wszolek and his team together,” leading to the 2004 dis- to the translation of ancient to ponder why, in four members of covery of the novel gene Lecucine- hieroglyphs, genetic studies hold the same family all presenting with Rich Repeat Kinase 2, or LRRK2. the key to the treatment of the typical features of PD, were This gene appeared to be the only diseases such as Parkinson’s.” autopsy results different enough to plausible genetic explanation for In the case of LRRK2, the stud- almost be indicative of different Parkinson’s in the families studied. ies started with a single patient, diseases? Though a mystery at the Now LRRK2 is known to be then led to a family tree, then to time, the data from these studies one of the most common genes pathology information that pro- would provide a key part of the affected in familial PD. Dr. Wszolek vided data on chromosome abnor- LRRK2 puzzle. estimates that if you have a family malities. From there, the specific history of PD, the chances of you gene in question was isolated and Meanwhile, in Japan having a mutation in the LRRK2 numerous mutations were discov- At the same time, Japanese gene are approximately 13 per cent ered. The next step will be trans- researchers were studying another if you are Caucasian, and as high genic animal studies towards the case of familial PD in a family, as 30 per cent if you are of African development and investigation of known as the Sagamihara family. decent. specific therapies for individuals Members of the Sagamihara family For the past year, the LRRK2 with familial PD—treatments that with PD had a mean onset of 54 gene has been one of the most could conceivably benefit anyone years and members also exhibited active areas of Parkinson’s research, who suffers not only from familial the typical symptoms of the dis- with 48 scientific papers published. PD, but from the more common ease. The researchers found impor- Researchers have shown that sporadic form of the disease. tant clues to the gene involved— but could not quite pin it down. Dr. Wszolek likened the situation An inspiration to others to “finding out the province where A native of Poland, Dr. Zbigniew Wszolek received his MD from the Silesian a person lived, but not quite identi- University. He began his research on the genetics of Parkinson’s disease in 1987 fying the city or the street.” while a neurology resident at the University of Nebraska. Back in North America, Dr. Since then he has established a reputation as one of the world’s leading Wszolek was involved with yet Parkinson’s researchers, and his work has inspired and influenced many. He is a another family with a history of co-recipient of the prestigious M.K. Udall Parkinson’s Disease Center of Excellence PD. This was a German-Canadian Award from the National Institutes of Health and has more than 300 publications to his credit. Dr. Donald Calne describes Dr. Wszolek as being like “the conductor of an family who he studied in co-opera- orchestra of interdisciplinary researchers working in the area of genetics and PD.” tion with Dr. Calne and Dr. Jon Today, Dr. Wszolek is Professor of Neurology, College of Medicine, Mayo Clinic, Stoessel of the University of British Rochester, Minnesota, and Consultant at the Mayo Clinic, Jacksonville, Florida. Columbia. The clinical presenta- He is currently researching the Tau gene and Lewy Bodies in PD.

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Join us at SuperWalk

ach September, thousands of money, send company teams and Canada. This is an easy way to E Canadians across the country volunteers, and provide the fantas- send invitations to friends asking join together to raise funds for tic prizes and incentives that make them to join in or send you a Parkinson’s. In 2005, revenue from walk day great for our supporters. pledge. Registration is free and SuperWalk for Parkinson’s reached They each contribute so much as fast–—in 2005 we had more an all-time high of $1.75 million! we strive to make a difference in on-line walkers and donations To the many dedicated volunteers, than ever before! While you’re staff and walkers who participated, on-line, don’t forget to check out thank you! the great team and individual This September, take up the prizes and incentives. challenge and walk with us as we See you in September! continue our streak of breaking each previous SuperWalk record. Bring your family, friends and co-workers and walk with us toward a cure. the lives of those around us with Tom Cochrane, our honourary chair, Parkinson’s. Because of them, will be joining us again this year. our goal is closer every day. Parkinson Society Canada is Don’t forget to visit honoured to have the consistent www.superwalk.com and support of many sponsors who give register on-line for any walk in

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Gold Silver Bronze Astra Zeneca Deep Cold CB Richard Ellis Limited The Brian Hennick Memorial Fund Pure Metal Galvanizing RioCan Running Room Sports Inc.

Thanks for your support! Here’s what you’ll receive in return for supporting SuperWalk: RAISE $100–$999 • one Grand Prize draw ticket for every $100 raised • $10 in ROOTS gift certificates for every $100 raised • seven free Solstice Beauty products (retail value of $125) • one Grand Prize draw ticket for every $100 raised with any minimum $20 on-line purchase–free shipping • two free Solstice Beauty products (retail value of $30) with any minimum $20 on-line purchase—free shipping RAISE $5,000+ • everything listed for the SuperSTAR Supreme plus... RAISE $1,000–$2,499 • MindFit, a new easy-to-use computer software program that SuperSTARWalker provides a comprehensive program of mind-fit exercises • a blue SuperSTARWalker hat and pin (retail value $175) • one chance to win in the draw for an AQUOS LCD Television, • a basket of Deep Cold products (retail value of $100) courtesy of SHARP courtesy of the Mentholatum Company of Canada • $10 in ROOTS gift certificates for every $100 raised • one Grand Prize draw ticket for every $100 raised GRAND PRIZE DRAW • four free Solstice Beauty products (retail value of $70) 1 10-day Costa Rica Rainforest Adventure, courtesy of ElderTreks with any minimum $20 on-line purchase—free shipping 2 Two Hospitality Class Airline Tickets to any scheduled interna- tional Air Canada destination, courtesy of Air Canada* RAISE $1,000–$2,499 3 Cineplex Entertainment VIP Card, one year of unlimited movie SuperSTARWalker Supreme admissions for two, courtesy of Cineplex Entertainment • a red SuperSTARWalker hat and pin * Some time restrictions on travel may apply. Qualification for national prizes is not one chance to win in the draw for an AQUOS LCD Television, • open to any employees of Parkinson Society Canada and its regional partners or to courtesy of SHARP any member of their immediate families. Parkinson Society Canada reserves the • $10 in ROOTS gift certificates for every $100 raised right to substitute an alternate prize.

Team challenge Joining the walk as a team makes a great day even better! SuperWalk campaign and get their team name, company name Friends, family and co-workers can all join together. For more and total funds raised listed on our website. details, ask your regional office for a team book. • Each qualifying team member can be eligible to be part of the SuperSTARWalkers draw for ROOTS leather bags, valued at $400 each, and still Raise $1,000 or more, become a SuperSTARWalker, and get even get their individual prizes. more exciting prizes and incentives. In 2005, SuperSTARWalkers • All corporate teams can be part of our SuperSTAFF for across Canada raised close to half-a-million dollars.

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Spreading the word about Parkinson’s April is Parkinson’s disease awareness month in Canada, and each year Parkinson Society Canada (PSC) and its regional partners host, promote, participate in and encourage an exciting range of events aimed at increasing the understanding of PD and the role of PSC. Here are just a few highlights of the many April Awareness 2006 activities.

and caring people in the commu- nity (including children) can work towards a common goal such as finding a cure for Parkinson’s. With the assistance of Dr. David Grimes and Dr. David Park of the PRC, Shelby led students in a series of exercises highlighting the four common physical abilities affected by Parkinson’s: strength, balance, flexibility and speed. Each class participated in a 15-minute circuit before they passed the baton to the next class. At an assembly the previous day, stu-

Photo: George Bashiri dents helped to simulate a few of Guardian Angel students (left to right) Taylor Rawn-Kane, Kaitlin McCutcheon, Franklin Turkson the effects of PD through a series and Gabrielle David show off their April Awareness tulips. of walking and running drills, first Angelic art Passing the baton wearing running shoes, then over- Students at Guardian Angels The first annual Pass the Baton for sized winter boots, and finally Catholic School in Brampton, Parkinson’s was held at Berrigan oversized ski boots. Ontario, put their artistic talents Elementary School in Barrhaven, The original event raised to work by creating pictures of Ontario, to help educate elemen- almost $3,700 for the PRC and tulips, the symbol of PSC and the tary school students on PD. generated awareness for Parkinson’s fight against Parkinson’s. This event was designed and through television and local news- At the invitation of PSC coordinated by Shelby Hayter, paper coverage. Central and Northern Ontario who, last year, raised awareness Region, 22 kids from Ms. Stoker’s and over $36,000 for the grade two class produced some Parkinson’s Research Council colourful and beautiful images. (PRC) by running in the grueling “The students really enjoy express- Boston Marathon—just one month ing themselves,” comments a after being diagnosed with young Guardian Angels staff member. onset Parkinson’s at age 40.

“It’s nice to be able to help a The idea was to demonstrate Shelby Hayter tells students that everyone charity at the same time.” how a doctor, a scientist, a patient needs to work together to find a cure for PD.

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resident of Gimli. The statement five on April 20, 21 and 22. It was addressed the burden of PD and the second year for Burt’s “rock-a- paid tribute to Dr. Kristjanson, the thon,” and this year he raised $525 former President of the University for Parkinson’s research. of Saskatchewan and Member of the Order of Canada, who passed Piggies for Parkinson’s away in 2005 after a long battle Parkinson Society Newfoundland with PD. and Labrador (PSNL) put a herd of pink piggies to work in their April Education Maritimes-style Awareness campaign. Parkinson Society Maritime Adorable custom-made Region held a week-long series Parkinson’s piggy banks were put of interesting and informative up for “adoption.” The idea is to lectures on various aspects of use the bank to collect spare Jean Kristjanson (left) accepts the framed Parkinson’s disease. Guest lecturer change, and return it to PSNL tribute to her late husband, Dr. Leo Kristjanson, from Manitoba’s Minister of Education, Sandie Jones, Director of Client when full. The piggy will be emp- Citizenship and Youth, Peter Bjornson. Services and Education, PSC tied, then returned to its owner Manitoba MLAs get Central and Northern Ontario and put back to work for another the message Region, made seven presentations year. To date, about 150 Parkinson’s Parkinson Society Manitoba hosted in five days, speaking in Saint John, piggies are in circulation. a special reception for Members of New Brunswick; Summerside, Legislative Assembly (MLAs) to Prince Edward Island; and Sydney raise awareness among legislators and Pictou, Nova Scotia. and health officials about the dev- The Bridgewater, Nova Scotia, astating effects of the condition. Chapter organized a full day work- Attendees learned about PD shop on April 11 to mark World and had a chance to review and Parkinson’s Day. The event attracted sign the Global Declaration on over 100 people, who participated in Parkinson’s Disease. In addition, seven practical sessions. the Honourable Peter Bjornson (MLA Gimli), Manitoba’s Minister Keep on rocking! of Education, Citizenship and For three days straight, Youth, presented a framed copy of Newfoundland’s 83-year-old Burt his private member statement to Fudge “rocked” for Parkinson’s. Jean Kristjanson, widow of the late The Grand Falls-Windsor resi- Jessie Goodyear proudly shows off her newly Dr. Leo Kristjanson, a long-time dent sat and rocked from nine to adopted Parkinson’s Piggy.

And much more (World Parkinson’s Day) was marked by an art exhibit at Complexe Desjardins–Grande Place. Six artists displayed Calgary: The One Enchanted Evening Progressive Dinner their works and raised funds through sales of a calendar. fundraiser was a sell-out, with over 100 guests enjoying

champagne, wine-tasting and an excellent meal. Winnipeg: A Parkinson’s Awareness ad campaign, Edmonton: The 28th Annual Annie Wyley Memorial featuring the tag line Lecture was delivered by Dr. Richard Camicioli of the “You are not alone,” Edmonton Movement Disorder Clinic. appeared on a Winnipeg Montreal: Journee modiale de la maladie de Parkinson city bus.

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Parkinson’s research around the world and he Research Editor: Dr. John Wherrett

Explaining nigrostriatal tract that levodopa could reverse the of dopamine receptor they con- degeneration symptoms of PD, uncertainties tained. The “indirect pathway” German investigators used a variety remain as to how it actually works. neurones contain only the so-called of techniques and strategies in However, recent advances in neuro- D2 form of receptor, whereas the attempting to understand why the biology and genetics have opened up “direct pathway” neurones contain nigrostriatal tract degenerates in new opportunities to seek answers. only the D1 form. The researchers Parkinson’s disease (PD), while an Investigators from Scotland and found that when dopamine was adjacent dopamine tract (the ventral the U.S. have applied a number of deficient, there was a marked loss of tegmental tract) is less affected. advanced approaches to genetically the D2 receptors but not D1 recep- In mice models of PD, investiga- engineered mice models and a rat tors. These spines also serve as the tors found that channels in the model of PD in an attempt to assess receptor region for nerve inputs that substantia nigra cells that regulate the effect of dopamine deficiency on use glutamate, a neurotransmitter the passage and excitability of the brain circuitry beyond the site of the that acts to increase activity. ion potassium into the cell were damaged and dopamine deficient However, the loss of spines and open. However, the channels in the nerve cells (the nigrostriatal tract). glutamate input appear to create adjacent tract were not. These chan- The mice were created by the an abnormal pattern of increased nels (termed K-ATP channels) are American National Institute of activity in the “indirect” pathway. regulated by ATP, the energy mole- Neurological Diseases and Stroke, The connection between the cule, so that they open when the and the rat model was developed dopamine deficiency and the loss of concentration of ATP is reduced. by a Canadian investigator (and spines was shown to be a channel ATP is generated in the mitochon- former member of PSC’s Scientific that controls the movement of cal- dria, the energy-producing units in a Advisory Board). cium into the cells. If the channel cell. If the mice had channels that It has been known for about 18 was removed or blocked, dopamine were genetically altered so that they years that there is an imbalance deficiency did not result in a loss of could not be opened, the Parkinson between two motor control systems spines. Thus, in the medium spiny models could not be produced. that are normally muted. One system— neurons of the initial link in the This finding further supports called the “indirect” pathway— “indirect pathway” that were sub- evidence for an energy failure in develops an abnormal pattern of ject to a reduction of dopamine, a parkinsonian nigrostriatal cells, and activity in a fashion that shuts calcium channel was affected that shows that the potassium channel is down motor activity. Treating resulted in a distorted activation by necessary for degeneration of cells. It Parkinson’s with deep brain stimu- glutamate neurotransmitter. now becomes important to determine lation appears to partially block a Drugs that block calcium chan- if there are drugs (such as CoQ10) “way-station” in this pathway, thus nels are in common use for treat- that might affect the energy genera- reducing the abnormal activity. ment of high blood pressure and tion in the mitochondria or might The investigators studied mice angina. Further studies are under- activate the potassium channel to in which specific nerve cells, way to determine if any of these prevent or delay neurodegeneration. known as medium spiny neurons calcium channel blockers could be Reference: Nature Neuroscience, Dec. 2005 that are targets for dopamine in the considered for trials in PD to reduce large nucleus or “way-station” the effect of dopamine deficiency. How levodopa treatment works called the striatum, were labeled Reference: Nature Neuroscience, Thirty-six years after the discovery according to which of two variants February 2006

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.

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nd here in Canada

Renowned scientist recognized with particularly Parkinson’s disease, for his outstanding service to the Donald Calne Lectureship including complications of long- Parkinson’s community as Professor Parkinson Society Canada (PSC) is term therapy. Dr. Stoessl’s lab uses of Neuroscience, UBC, and past pleased to announce the award of positron emission tomo- chair and long-time the fourth annual Donald Calne graphy (PET) to study the member of the Scientific Lectureship to Dr. Jon A. Stoessl, natural history and pro- Advisory Board, PSC. Director of the Pacific Parkinson’s gression of Parkinson’s Each year PSC awards a Research Centre at the University disease, compensatory distinguished neuroscientist, of British Columbia (UBC) in changes that take place whose work is primarily in Vancouver. during the course of the area of Parkinson’s dis- A native of London, U.K., the disease, and changes ease, with this lectureship.

Dr. Stoessl moved to Canada in associated with the develop- Dr. Jon A. Stoessl. The recipient will deliver 1960 and obtained his MD from ment of motor complica- a “state of the illness” the University of Western Ontario tions. Dr. Stoessl and his colleagues lecture on Parkinson’s disease to in 1979. His post-doctoral work have used PET to demonstrate PSC’s Annual Meeting. This year’s focused on movement disorders, dopamine release as a mechanism lecture will be given in Ottawa on PET technology, Alzheimer disease underlying the placebo effect in Friday, November 3, at “Bridging the and neuropharmacology. Dr. Stoessl’s Parkinson’s. Generations,” PSC’s Annual current research is focused on under- This lectureship was established Conference. To register, watch for standing basal ganglia disorders, in 2002 to honour Dr. Donald Calne information at www.parkinson.ca.

Focus on… Dr. Oury Monchi PSC New Investigator Award Centre de Recherche de l’Insitut de Geriatrie de Montreal, Montreal, Quebec

Along with his may help us to predict and perhaps striatum was involved. Cortical activity colleagues at prevent them.” was decreased if the striatum was the Centre de It is highly specialized work and involved and increased if it wasn’t. recherche de l’Insitut de Gériatrie de requires specialized expertise. Dr. Monchi Our work will also allow us to measure Montreal (CRIUGM) and the Montreal has that expertise, earning a PhD in cognitive and motor deficits together Neurological Institute, Dr. Monchi is computational neuroscience modeling at and correlate data, something that has studying cognitive problems in PD. To King’s College, University of London. not been done previously.” be more specific, he is using functional Returning to the Montreal area where he In addition, Dr. Monchi’s work could magnetic resonance imaging to com- previously lived, he served post-doctoral have added significance in emerging pare the mechanisms responsible for the fellowships at the Montreal Neurological areas of Parkinson’s research. “For the cognitive and motor deficits associated Institute and the CRIUGM in order to last 20 years, nigrostriatal dopamine with the disease. develop an expertise in functional neuro- depletion has been thought to be the “The neurobiological dysfunctions in imaging. He is now assistant professor cause of PD,” he explains. “Now, some the brain responsible for these deficits at the University of Montreal and lead prominent researchers are speculating are not well understood,” explains Dr. researcher on this Parkinson Society that it is time to ‘look beyond nigrostriatal Monchi. “We can use new functional Canada-funded project at the CRIUGM. dopamine.’ They suggest there may be brain imaging techniques to identify the “We are making progress,” states additional pathophysiologies. Functional neural circuits responsible. This will help Dr. Monchi. “We were first to show neuroimaging could be important in us to understand how these problems differences in neural circuit activity identifying these.” evolve—to track their pathophysiology. It depending on whether or not the

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First Person

Staring down Parkinson’s By Alistair Thomson, Oshawa, ON

An avid reader, Alistair researches as much as he can about Parkinson’s disease.

arkinson’s introduced me to process of changing. After all, it the mind can work near-miraculous P my new self, and I like the isn’t a passive process. I have to cures. However, recovering from person I’ve met. I’ve been lucky. work at it. Fortunately, I have Parkinson’s is my second goal. My I’ll tell you why. learned that the way I react to first goal is to achieve true peace Shortly after I was diagnosed, stress is more important than of mind. I am told it is achieved I began a study of what causes the stress itself. only by making a commitment Parkinson’s disease. Early in my There is a connection between to a more loving and accepting research, I discovered the idea that peace of mind and the ability to outlook—this sounds good to me. the body is affected by the mind. love oneself. Psychiatrists confirm Time and again, research studies that children who are unloved A marvelous adventure prove that stress and conflict cause grow into adults who do not have I’ve always been convinced that serious illness. the ability to love themselves life is a marvelous adventure. In My life was a history of stress or others. Yet loving oneself is support of my optimism, I have a and conflict, so it’s obvious why basic to acquiring peace of mind. loving, patient, understanding wife, Parkinson’s struck: I set myself Science has shown that people I have no financial worries, I am up for it. However, in my search can recover from incurable diseases, happily retired, and I come from for answers, I discovered a cause so I am convinced that I can get a long line of tough Scots. I have for hope. In reading many medical well no matter the odds. I know nothing from which I wish to histories, I learned that when patients let go of anxieties and achieved peace of mind, they recov- ered or dramatically improved the quality of their lives.

Time to change If ever there was a man who lacked peace of mind, it was me. Faced with Parkinson’s, I knew I had to change. Now, I’m at least in the

Alistair appreciates the support of Joan, his wife, as he learns to live with the disease.

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escape. My point is that I refuse to holds a steady quarter-pound of air to lift one’s spirit. Life is also an be a victim. I want to live to pressure in my upper air passages, opportunity to make a contribution be at least 100 years old and, along thus ensuring that I breath nor- to humanity. And life is a gift. the way, to become an expert on mally and maintain a viable blood- To others with Parkinson’s, I Parkinson’s. oxygen level. Solving the sleep say don’t accept that there is noth- apnea problem has alleviated many ing you can do. You can research. Alternate causes and cures of the Parkinson’s symptoms. I no You can hope. You can find sources In my research on Parkinson’s longer have a tremor, my balance is of alternative treatment. You can disease, I’ve encountered many restored, I no longer have daytime talk to Parkinson’s patients. You suspected causes. However, there is fatigue, and my ability to concen- can re-organize your life. You can one condition that studies have not trate is restored. meditate. You can pray. Use every mentioned. In fact, I’m reasonably Let’s talk about available drug resource that you believe in. sure this night visitor may have therapy for Parkinson’s been responsible for causing disease. I have been exper- my Parkinson’s, but I have no imenting with alterna- research to support my conclusion. tives. In my experience, Although there are many studies my anti-depressant seems of sleep disturbances and the to act as a facilitator for disease, I have found none that my Parkinson drug and say conclusively that sleep apnea, allows it to work more over the long term, may cause efficiently. I have also Parkinson’s. Sleep apnea causes consulted with a Chinese the person to stop breathing while doctor of herbal Alistair enjoys playing the piano, one of his many hobbies. asleep. Overnight monitoring of medicine, and my sleep pattern at a sleep clinic he recommended an recorded that I had stopped breath- herbal remedy that has ing 97 times in an eight-hour no side-effects. Medical period. Adequate blood oxygen doctors are often skeptical of herbal You may think it unusual for levels depend on a normal breath- treatment, but because of the a Scots Presbyterian to quote ing pattern. Surely decreased blood herbal medicine, I have cut my Harold S. Kushner, a Jewish rabbi, oxygen levels, over the long term, medication dose in half. My wife but his words are profound: must damage brain cells. and I are happy with the reduced “No one ever promised us a life The most effective remedy for side-effects, and I feel I have free of pain and disappointment. sleep apnea is to use an air supply control of my medication. The most anyone promised us is when asleep. For more than a year, I am also in control of my that we would not be alone in our I experimented with air pumps health, as Parkinson’s has encour- pain, and that we would be able to and face masks. It was frustrating aged me to be physically active. draw on a source outside ourselves because the mask would not seal I walk for an hour each day on for the strength and courage we properly against my face; as a an indoor track at the Oshawa would need to survive life’s result, I would awaken several YMCA, and I usually cover four tragedies and life’s unfairness.” times in the night, as the air leak- miles. After my walk, I work with That’s promise enough to stare ing through the seal emitted a loud weights or swim a few lengths of down Parkinson’s. Bronx cheer. After spending hun- the pool. The exercise helps me dreds of dollars on masks that were fight the disease. Editor’s note: The experiences often barely functional, I found a described in First Person are system that has two short tubes Life is a gift personal and not necessarily which are inserted in the nostrils. Life is many things. It’s certainly appropriate for all individuals. This system works better than a a challenge. An extra 10 pounds You should always consult your mask and allows me to have nine lifted on a bench-press or an addi- physician before making any hours of sleep a night. The pump tional length in the pool can help changes to your medical treatment.

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“Can you tell me more about Q massage therapy and how it can help with my Parkinson’s symptoms?”

Massage therapy is the hands- A on manipulation of the body for the purpose of healing. It is one of the oldest forms of therapy in the world. In fact, massage therapy has been documented as early as 1552 B.C. in Egypt “as a form of medical treatment.” relaxation exercises for 30 minutes providing one-and-a-half hour Massage therapy is now ranked twice a week for five weeks (10 ses- massage therapy sessions to those third among the most frequently sions total). Physicians then rated with Parkinson’s. The sessions used forms of alternative health participants in the massage therapy are held in conjunction with the care, according to a survey of alter- group as having shown an improve- Parkinson’s exercise class. These native medicine that was published ment in the Activities of Daily Life sessions are always full, and often in the New England Journal of Scale (Schwab and England, 1958) there is a waiting list for the next Medicine. and showing slight improvement session. Persons with Parkinson’s Studies since then have found in increased independence and func- who have participated in the exer- that massage therapy is beneficial tioning on chores. The massage cise and massage therapy sessions for patients with Parkinson’s group also reported more effective have reported less stiffness in disease. For example, at the Touch sleep and less sleep disturbances. their muscles, greater flexibility Research Institute at the University The Saint John Chapter of the and range of motion in their of Miami, 16 patients with Parkinson Society Maritime Region movements, and better sleep. Parkinson’s disease were divided is presently experiencing the value into two groups: one group received of massage therapy as a complemen- Sheree Trecartin, RN 30 minutes of massage therapy ses- tary therapy in the treatment of VON Parkinson Nurse, Saint John, NB sions twice a week for five weeks Parkinson’s disease. For the past six (10 sessions total), and the other months, massage therapy students Article reprinted with permission from group received progressive muscle from Compu College have been Down East Parkinson News.

WEBSITE HIGHLIGHTS Visit us on-line: www.parkinson.ca Our website is being updated regularly. Please watch for more changes in the months ahead. Some of the new material includes the following: Learn about April Awareness activities in your region. Click your region on the map of Canada. Check out our newest grants for Clinical Movement Disorders Fellowship and Boehringer Ingelheim Clinical Movement Disorders Fellowship starting in July 2006. Click on Research. Read your region’s latest newsletter. Click your region on the map of Canada. Learn about the coming 2006 SuperWalk. Click the SuperWalk icon on the right hand side of any page.

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Parkinson’s Disease: Managing Parkinson’s: Cook Well, Stay Well The Truth About Depression: An Essential Guide for Straight Talk and with Parkinson’s Disease Choices for Healing the Newly Diagnosed Honest Hope By Kathrynne Holden, MS, RD By Charles L. Whitfield, MD By Jackie Hunt Christensen By American Parkinson Reviewed by Ian Corks Disease Association Reviewed by Reviewed by Kathrynne Holden is a dieti- Alistair Thomson Rosemary Craig Reviewed by Barbara tian specializing in nutrition Snelgrove This book should be on your Jackie Hunt Christensen, a for people with PD, and when “must read” list if you have The newest resource from Parkinson’s patient/expert, it comes to cooking for this depression. It explores the the Washington State walks you through every- condition, she obviously theory of childhood trauma chapter of the American thing you need to learn and knows what she is talking as a cause of adult depres- Parkinson Disease Asso- do. This book does indeed about. sion. Dr. Whitfield says ciation is a comprehen- cover a large number and This practical book pres- that if a child is repeatedly sive guide to maximizing range of topics, from signs ents almost 200 “PD friendly” abused or neglected, his quality of life for people and symptoms and diagno- recipes, covering everything or her brain and nervous with Parkinson’s disease. sis, through treatments from salads and snacks to system will be damaged. The hour-long DVD (conventional and comple- entrées and desserts. The Whitfield questions con- contains interviews with mentary), to family issues recipes are chosen based on ventional wisdom regarding prominent doctors, health and life planning. their nutritional value and depression. For example, he care professionals and Overall, this book gives ease of preparation. Each one does not believe that depres- people living with the an overview of PD and the comes with a quick checklist sion is caused by faulty disease. issues that people with identifying features such as genes or brain chemistry. The DVD is divided Parkinson’s have to come “Easy-Fix,” “Easy-Chew,” He believes that doctors into several modules so to terms with. The book’s “High Fiber,” and other must discover the trauma people can select their strong points are lots of useful indicators. In addition, and stressors which cause own topic and learn at information and resources. Holden concisely and knowl- a person to be depressed. their own pace. Part one The book’s weak point is edgeably sets the stage in Written in clear and covers the disease and the lack of depth of infor- the Getting Started section, understandable language, treatments. Part two cov- mation and explanation discussing why and how The Truth About Depression: ers ways to help maintain (e.g., “what is PD?” was these recipes can contribute Choices for Healing is quality of life. Part three efficiently described; how- to better health. published by Health introduces people living ever, I was left asking This book’s no-nonsense, Communications Inc. with Parkinson’s disease “Where exactly in the brain easy-to-follow approach makes Visit www.hci-online.com. is the substantia nigra?”) who share their wisdom. it an invaluable resource for A good starter book for An extensive resources anyone preparing meals for a Please remember that while the newly diagnosed, with section is also included. person with PD. Parkinson Society Canada provides information about the availability lots of resources for the The free DVD is avail- You can order the book of new resources in this section, next level of learning. able for ordering online at on-line at www.nutrition this does not necessarily imply www.waparkinsons.org/ ucanlivewith.com. recommendation or endorsement Visit your local book- of the contents. store to order your copy. DVDRequest.asp.

Spring 2006 ParkinsonPost 23 510850BCS 5/31/06 5:24 PM Page 24

We Need Your Support

When you make a planned gift through The Parkinson

Legacy, you provide Parkinson Society Canada and its

regional partners with resources to support research into a

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

Through The Parkinson Legacy, there are numerous ways

you can make a Planned Gift to Parkinson Society Canada

or one of its Regional Partners:

Bequest in Your Will Gift of Life Insurance Charitable Remainder Trust Gift of Residual Interest Gift Annuity Commemorative Gifts

To become a part of The Parkinson Legacy, or for more information about making a Planned Gift, please contact any of the following offices:

Parkinson Society Canada Victoria Epilepsy and Parkinson Society Manitoba Parkinson Society Ottawa National Office Parkinson’s Centre Society Ph: (204) 786-2637 Ph: (613) 722-9238 To discuss a planned gift or Ph: (250) 475-6677 Toll Free: (866) 999-5558 request an information kit, Parkinson Society Quebec please call: The Parkinson’s Society of Parkinson Society Canada Ph: (514) 861-4422 (416) 227-3385 Alberta Central & Northern Toll Free: (800) 720-1307 Toll Free: (800) 565-3000, Ph: (780) 482-8993 Ontario District ext. 3385 Toll Free: (888) 873-9801 Ph: (416) 227-1200 Parkinson Society Canada www.parkinson.ca/donating/ Toll Free National: Maritime Region theparkinsonlegacy.html The Parkinson’s Society of (800) 565-3000 Ph: (902) 422-3656 Southern Alberta Toll Free (NS, NB & PEI): Parkinson Society Ph: (403) 243-9901 Parkinson Society Canada (800) 663-2468 British Columbia Toll Free (Alberta): Southwestern Ontario Ph: (604) 662-3240 (800) 561-1911 Region Parkinson Society Toll Free (BC only): Ph: (519) 652-9437 Newfoundland & Labrador (800) 668-3330 Saskatchewan Parkinson’s Toll Free Ontario: Ph: (709) 754-4428 Disease Foundation (888) 851-7376 Toll Free (NFLD / Labrador): Ph: (306) 966-1348 (800) 567-7020

www.parkinson.ca

Ease the Burden; Find a Cure