510850BCS 5/31/06 5:24 PM Page 1
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 Ottawa 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 amazed 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 Toronto, 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
Spring 2006 ParkinsonPost 3 510850BCS 5/31/06 5:25 PM Page 4
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
4 ParkinsonPost Spring 2006 510850BCS 5/31/06 5:25 PM Page 5
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 Vancouver, 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. Winnipeg, 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 Calgary, 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
Spring 2006 ParkinsonPost 5 510850BCS 5/31/06 5:25 PM Page 6