The Faces Faces of of Parkinson’s Parkinson’s

Spring 2006 � Volume 6 � Issue 1$4.50

Ease the Burden; Find a Cure

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On the genetic trail:Dr. Wszolek’s search for LRRK2

SuperWalk 2006:Join our quest

Spring 2006 � Volume 6 � Issue 1$4.50

Courageous and determined:Pat Fleming takes on Parkinson’s

Courageous and determined:Pat Fleming takes on Parkinson’sOn the genetic trail:Dr. Wszolek’s search for LRRK2

SuperWalk 2006:Join our quest

PLUSMeet our Volunteer

Award Winners

PLUSMeet our Volunteer

Award Winners

The Faces of Parkinson’sThe Faces of Parkinson’s

510850BCS 5/31/06 5:24 PM Page 1

Collect pledges and walk with your family and friends. There are so many ways to be involved....

Be a SuperSTARWalkerRaise over $1,000 and in addition toyour shirt receive a hat and pin foreach year you reach this level. Plus,there are special prizes and incentivesjust for these walkers!

Be part of a teamBring your friends and family and share the fun by walking as a team

Be a volunteerCall the regional office closest to you and volunteer to work on aSuperWalk committee.

Great prizes! Great fun! Easy to beinvolved with on-line registration!

For every $100 raised each walker getsa chance to win some great nationalprizes 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 nearyou and to register on-linevisit www.superwalk.com

Join us. Be partof SuperWalk forParkinson’s thisSeptember!

510850BCS 5/31/06 5:24 PM Page 2

What an exciting time to become Chair of Parkinson Society Canada! 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. Iwas subsequently invited to join the national board in 2003.

Now, as Chair of PSC I see my primary roles as ensuring that our efforts arecoordinated and that we all work together effectively. By helping to build acohesive and focused team, we will be able to best meet the many challengesthat lie ahead, both external and internal.

We are constantly amazed at how PSC challenges itself—always searchingfor the best and most innovative ways to meet the needs of approximately100,000 Canadians living with Parkinson’s.

Change is vital to the success of any organization. It provides opportunitiesfor open dialogue and problem solving. It improves communication and pro-vides the chance to reconfirm commitments.

Our team of dedicated, enthusiastic volunteers and staff are planningtogether for the future—to move forward as a united organization with a common mission and values. • Our goal is to respond quickly to requests for support, create partnerships to

strengthen our national voice and advocate for crucial resources.• Our mandate is to continue funding the best in Parkinson research with the

ongoing support of generous individual donors and the business community.• Our desire is to inspire and energize a group of caring volunteers from every

corner of this country in a shared quest to make a real difference in the fightagainst Parkinson’s.

• Our collective objective is to be compassionate and respectful of the peoplewe serve.

• Our hope is no matter where you live in Canada, you are able to find an effec-tive Parkinson community with a sympathetic ear, factualinformation and access to a variety of essential services.

Our vision will always be to guide the decisions wemake by asking one simple question, “How will thisbenefit or serve people living with Parkinson’s, theirfamilies and care partners?”

We will keep you informed on our progress andlook forward to your input.

Moving forward with purpose,energy and promise

EditorialAdvisory

Committee

Bonnie Clay RileyPerson with Parkinson’s

B.C.

Rebecca GruberPhysiotherapist

Ontario

Jan HansenDirector of Support Services

The Parkinson’s Society of Southern Alberta

Shirin HirjiPerson with Parkinson’s

Quebec

Beth HollowayPerson with Parkinson’s

Newfoundland and Labrador

Dr. Mandar JogNeurologist

Ontario

Barbara Snelgrove National Manager

Education and Services PSC National

Marjie ZacksNational Director

Communications and MarketingPSC National

Dr. John WherrettNeurologist

Ontario

ON OUR COVER: Pat Fleming from Toronto, Ontario,was diagnosed with Parkinson’s

disease 19 years ago. Today, thanksto her courage and determination,Pat is enjoying life to the fullest.

Read her inspiring story on page 8.

S p r i n g 20 0 6 P a r k i n s o n P o s t 3

Alan Riccardi,

Chair, Board of Directors,

Parkinson Society Canada

Toronto, ON

510850BCS 5/31/06 5:24 PM Page 3

Website HighlightsYour guide to what’s new on-line at www.parkinson.ca 22ResourcesA selection of the latest educational resources 23

Our missionParkinson Society Canada/Société Parkinson Canadais the national voice ofCanadians living withParkinson’s. Our purpose is to ease the burden and find a cure throughresearch, education, advocacy and support services.

4 P a r k i n s o n P o s t S p r i n g 20 0 6

ParkinsonPostA quarterly magazine for Canadians

l iv ing with Parkinson’s

COLUMNS

Letter fromParkinsonSociety CanadaMoving forward with purpose, energy and promise 3Regional Partners/RoundupHighlights from PSC partners across Canada 5The AdvocateIssues of interest to people with Parkinson’s 7

Health TipDon’t meddle with medications 7

Ask the ExpertUsing massage therapy to control Parkinson’s symptoms 22

Parkinson Post Vol. 6, Issue 1, Spring 2006

Parkinson Society Canada4211 Yonge Street, Suite 316,

Toronto, ON M2P 2A9

Editor: Marjie Zacks

Publisher: BCS Communications Ltd.

How to contact Parkinson Post:

Parkinson Post4211 Yonge Street, Suite 316

Toronto, ON M2P 2A9Phone: (416) 227-9700

Toll Free: (800) 565-3000Fax: (416) 227-9600

E-mail: [email protected]@parkinson.caWebsite: www.parkinson.ca

Parkinson Post (ISSN #1489-1964) is the official publication of Parkinson Society Canada, and is publishedquarterly by BCS Communications Ltd., 101 ThorncliffePark Drive, Toronto, ON M4H 1M2. Tel: (416) 421-7944 Fax: (416) 421-0966. All rights reserved.Contents may not be reproduced without permission of Parkinson Society Canada. Printed in Canada. All material related to Parkinson’s disease containedin this magazine is solely for the information of thereader. It should not be used for treatment purposes.Specific articles reflect the opinion of the writer andare not necessarily the opinion of Parkinson SocietyCanada or the publisher. Canadian Publication MailSales Product Agreement No. 40624078. © 2006

Advertising PolicyThe acceptance of advertising in Parkinson Post is not anindication that Parkinson Society Canada or any of itsdivisions endorses any of the products or services listed.For people living with Parkinson’s, it is recommendedthey consult their health professionals before using any therapy or medications. Parkinson Society Canadaaccepts no responsibility for any claims made in anyadvertisement in Parkinson Post.

SuperWalk 2006SuperWalk for Parkinson’s:Join us in our quest to set a new record 14AwarenessApril Awareness 2006: Spreading the word across Canada 16

First PersonStaring downParkinson’s: AlistairThomson on making the most of life 20

FEATURES

Faces ofParkinson’sCourageous and determined:Pat Fleming challenges Parkinson’s 8VolunteersNational Volunteer Awards:Meet three caring people worthy of recognition 11

ResearchFollowing a genetic trail: Dr. Wszolek searches for LRRK2 12

Research ReportA look at current Parkinson’sresearch around the world 18• Explaining nigrostriatal

tract degeneration

• How levodopa treatment works

• Donald Calne Lectureship awarded

• Focus on Dr. Oury Monchi

510850BCS 5/31/06 5:25 PM Page 4

PSC National Office4211 Yonge Street, Suite 316Toronto, ON M2P 2A9Ph: (416) 227-9700Toll Free: (800) 565-3000Fax: (416) 227-9600www.parkinson.ca

Parkinson Society British Columbia890 West Pender Street, Suite 600Vancouver, BC V6C 1J9Ph: (604) 662-3240Toll Free (BC only): (800) 668-3330Fax: (604) 687-1327www.parkinson.bc.ca� Hired a part-time information

and programs co-ordinator, Robbin Jeffereys.

� Carmen Dyck, director of supportservices, visited 12 support groups.

� Participated in two major healthfairs in the lower mainland.

� Held a successful major fundraisinggala event on April 27, 2006.

Victoria Epilepsy and Parkinson Centre813 Darwin AvenueVictoria, BC V8X 2X7Ph: (250) 475-6677Fax: (250) 475-6619www.vepc.bc.ca� A new Parkinson’s Mind Body

program has been launched that incorporates special needsyoga with attention to positivethinking and stress release.

� A clinical nurse specialist presented a very helpful educa-tional session on “Dealing withconstipation and other digestiveproblems.”

� Specialists delivered excellent presentations on “Living well with Parkinson’s: A physician’s perspective,” “Getting the most fromyour medications,” and “Managingspeech and swallowing changes.”

� Collaborated on an interactivewebsite to help clients track health symptoms in regards toParkinson’s. Site launched in the spring.

� Golf tournament plans are wellunderway with an anticipated$50,000 net revenue from the event.

� A Parkinson’s Festival andSuperWalk for Parkinson’s will be held in September.

The Parkinson’s Society of AlbertaEdmonton General, Room 3Y1811111 Jasper AvenueEdmonton, AB T5K 0L4Ph: (780) 482-8993Toll Free: (888) 873-9801Fax: (780) 482-8969www.parkinsonalberta.ca � Three posters/abstracts based

on a survey of persons withParkinson’s and their caregiverswere presented at the WorldParkinson’s disease Congress.

� New support groups started in Vegreville and Slave Lake.

� The Edmonton speech supportgroup was revived and will meettwice a month.

� Over 2,100 potted tulips bloomedacross northern Alberta forParkinson’s awareness month.

� Annual general meeting was held and “28th Annie WyleyMemorial Lecture” was presentedby Dr. Richard Camicioli on“Thinking changes in Parkinson’sdisease,” attended by over 100people on April 22, 2006.

The Parkinson’s Society of Southern Alberta102-5636 Burbank Crescent SECalgary, AB T2H 1Z6Ph: (403) 243-9901Toll Free (Alberta): (800) 561-1911Fax: (403) 243-8283www.parkinsons-society.org� An evening of free massage

therapy for people withParkinson’s was offered by thelocal College of Massage Therapy.

� A new series of the Brain Wavesprogram is being offered in northwest Calgary.

� Yang-style Tai Chi programs arewell attended in two locations in Calgary.

� Exercise programs and supportgroups are doing very well withthe addition of three new groups.

Saskatchewan Parkinson’s Disease Foundation103 Hospital Drive, Box 102Saskatoon, SK S7N 0W8Ph: (306) 966-1348 Fax: (306) 966-8030E-mail: [email protected]� Held Million Dollar Dream Dinner

on March 30. The event, which wasorganized by the Curling Classicand PW Golf Classic Committees,represents a 13-year goal to raiseone million dollars for Parkinsonresearch in Saskatchewan.

� Annual Curling Classic forParkinson’s Research held onMarch 31 and April 1.

� SuperWalk 2006 in Saskatoon isplanned for September 10.

Parkinson Society Manitoba171 Donald Street, Suite 302Winnipeg, MB R3C 1M4 Ph: (204) 786-2637 Toll-Free: (866) 999-5558Fax: (204) 786-2327� Welcomed Laura Asher,

BComm (Hons), new events and development co-ordinator.

� New slate of officers for advisoryBoard of Directors: Marc Pittet,Chair; Tom Hodgson, Vice-Chair;Colleen Johnston, Secretary;Shaun Hobson, Acting Treasurer; Bob Ashuk, NationalRepresentative; Adrienne Toews;Don Dietrich; Wayne Buchanan;Louis Maric; JoAnne Minkus; and Terry Snell, Past Chair.

� Speech therapy and Brain Gymprograms for people withParkinson’s have been successful,based on satisfaction surveysreceived.

� Lisa Gilmour, BA (Advanced),administrative assistant, has been named to the NationalAdvocacy Committee.

PSC Central and Northern Ontario Region4211 Yonge Street, Suite 321Toronto, ON M2P 2A9Ph: (416) 227-1200Toll Free National: (800) 565-3000Fax: (416) 227-1520� Education session was held in

Barrie in February with movementdisorder specialist Dr. Rana.

� Spring 2006 Livewire publicationwas distributed to 7,100 individuals.

National Office and Regional PartnersFor information, programs and services in your area, or to make a donation, contact the following offices:


continued on page 6

510850BCS 5/31/06 5:25 PM Page 5

� April Awareness events includedtulip sales and tulip card fundraisers.

� Additional education sessions held in April, including the FirstAnnual Agro Series EducationalSession featuring Dr. Mandar Jog.

PSC Southwestern Ontario4500 Blakie Road, Unit #117London, ON N6L 1G5Ph: (519) 652-9437Toll Free Ontario: (888) 851-7376Fax: (519) 652-9267www3.sympatico.ca/pf.swo� Submitted $172,496 to PSC

National to support research andservices. Congratulations to ourvolunteers, walkers and supportersfor making this support possible!

� Introduced an exciting new format for the 2006 spring issue of The Parkinson Update, reflect-ing the energy and enthusiasm of volunteers and partners andencouraging even more commu-nity involvement.

� London held its third annual Spell the End of Parkinson’sScrabble Tournament, raising$8,267. More tournaments areanticipated this spring.

� Michelle Monger and DarrinBeaupre, two students fromFanshawe College, worked tomake April Awareness 2006 the best ever.

Parkinson Society Ottawa1712 Carling AvenueOttawa, ON K1Y 4E9Ph: (613) 722-9238Fax: (613) 722-3241www.parkinsons.ca� “Why is this my medication?”

presentation, given by pharmacists Judy Glustien and Mary Joy, attracted a full house of participants.

� The second annual Yuk Yuk’sComedy Night for Parkinson’s was held in mid-January. Over 550 people attended and, alongwith sponsors and donors, helpedto raise over $21,000.

� Selected donors, SuperSTARWalkers and Board members were invited to join in our annual donor appreciation inFebruary. Each guest was treatedto either cut or potted tulips.

� Three new support groups wereadded, bringing the total to 18.

One group, “Thursday NightLive,” is unique: they meet thefirst Thursday of each month todiscuss current issues and recentresource materials.

Société Parkinson du Québec550 Sherbrooke Street WestOffice 1470, Tower WestMontreal, QC H3A 1B9Ph: (514) 861-4422Toll Free: (800) 720-1307 National francophone lineFax: (514) 861-4510www.infoparkinson.org� New executive director is

Jean-Marie Bergeron. The QuebecBoard will decrease the number of board members from 22 to nine, the regional representativesfrom 18 to two, and increase thenumber of influential people tofive. The two positions reservedfor medical professionals were not touched by this reform.

� Currently searching for a perma-nent spokesperson who will lendhis or her name and image to mass mailings, membershiprenewals, and other media activities. We are currently accepting proposals.

� This year, SPQ decided to empha-size World Parkinson Day by renting Complexe Desjardins’ La Grande-Place. Roughly 10stands were set up, that ofPartenairesSanté, SPQ, SPQMontreal Region, neurologists,nurses, massage therapists andstands for sponsors related to our cause.

� Fanie Noiseux has joined our team as our new associate direc-tor, replacing Diane Van Erum.Mrs. Noiseux is a major financingcampaign specialist.

� Our lease at 1253 McGill Collegehas ended. We have relocated to550 Sherbrooke Street West.

PSC Maritime Region5991 Spring Garden Road, Suite 830Halifax, NS B3H 1Y6Ph: (902) 422-3656Toll Free (NS, NB & PEI):(800) 663-2468Fax: (902) 422-3797www.parkinsonsocietymaritimes.ca� New interactive website has

been launched, featuring “Ask anExpert,” an interactive database ofquestions and answers about

topics related to Parkinson’s.Visit www.parkinsonmaritimes.ca.

� Awareness month lecture serieswith Sandie Jones of Central and Northern Ontario Region held in Saint John, Summerside,Sydney and New Glasgow.

� Bridgewater chapter hosted anAwareness Month workshop onApril 11, World Parkinson Day.

� Annual “Wing It For Parkinson’s”was held in Moncton and SaintJohn on April 24.

� Fourth annual “Porridge forParkinson’s” was held on April 22. CBC morning host Terry Seguin and Canadian Idolrunner-up Casey Leblanc werecelebrity hosts.

� A resource guide has been published listing all materials held in the Region’s Banyan TreeFoundation Resource Centre.

� Eight sessions from the fall conference are now available on video and DVD.

Parkinson Society Newfoundland and LabradorThe Viking Building 136 Crosbie Road, Suite 305St. John’s, NL A1B 3K3Ph: (709) 754-4428Toll Free (NFLD/Labrador):(800) 567-7020 Fax: (709) 754-5868� Successfully applied to the

United Way to fund a speech therapy program in St. John’s metropolitan area. Special thanks to Mary Chibuk and TheParkinson’s Society of Alberta for sharing details of their speech education program.

� Recruited two new Board members with past board experience, and continued training for current members.

� A new April awareness andfundraiser event, “Piggies forParkinson’s,” and a successful flea market and ticket sales were held.

� Excellent media coverage for Joyce Humphries, winner of firstregional Anne RutherfordMemorial Award, and MaxineThistle, winner of the nationalDavid Simmonds award.


510850BCS 5/31/06 5:25 PM Page 6


Asking the government to act now!By Joyce Gordon

Thanks to the diligent work of theAdvocacy Committee, advocacy effortscontinue to gain momentum at thenational level. By building upon thegrassroots work done during the fed-eral election campaign, PSC staff andvolunteers successfully secured meet-ings with key Members of Parliamentand decision-makers in April. We werefirst pleased to meet with • Jo Kennelley, Senior Policy Advisor

to the Minister of Health• Nadir Patel, Senior Policy Advisor, Privy Council Office• 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 achievingour 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 ParkinsonSociety Canada’s annual research funding of $1 million.

2. That the Government help Parkinson Society Canada uncover and gatherthe data needed to understand the full impact of Parkinson’s, so we candeliver the best care and support today while planning for the future.

3. That the Government make universal access to home care supports andservices a priority issue nationally.Our message to government officials and decision-makers is that we

need their help and that with each passing day, the urgency increases. Verysimply, we must act now!

Over the coming months, Parkinson Society Canada will continue tocommunicate with key decision-makers to build our network of friends. We must generate a groundswell of support. To do so, every Member ofParliament and the Senate needs to hear from someone from theParkinson’s community. We welcome volunteers who are willing to write a letter, make a phone call or meet with their representative.

For more information about how you can help, please contact ShannonMacDonald, Project Manager for Advocacy and Government Relations, at(416) 512-8642 or [email protected].

Issues of interest to people with Parkinson’s

Ease the Burden; Find a Cure

The Honourable Jack Layton, leader of the NDP,discusses Parkinson’s disease with YvonTrepanier, Advocacy Committee Chair, PSC;and Joyce Gordon, President and CEO, PSC.

Common questionsanswered by theCanadian PharmacistsAssociation:

Should I keep a record of themedications that I am taking?

It’s a good idea to keep a written record of all medications you are taking, includingnonprescription and herbal products. Bringit with you whenever you visit your doctoror pharmacist, and carry a copy with you atall times, in case of emergency. Your phar-macist will also keep a record of the medi-cines you take and how you have reactedto them. Remember to tell the pharmacistof all nonprescription or herbal productsyou take, since he or she will only knowfor sure about the prescription medica-tions you have filled at the pharmacy.

How do I store my medicines safely?

You should keep your medicines in thecontainer that they came in. The bathroomcabinet is not a good place because itgets warm and damp. Always keep medi-cine out of a child’s reach, and refrigeratemedication only if it says to on the label.

How do I get rid of my medications safely?

You should take all outdated or unusedmedicines you have cleaned out to yourpharmacy for safe disposal, including prescription and nonprescription. If youdon’t know if a medicine is good, ask your pharmacist. Medicine should not be flushed down the toilet: it’s not friendlyto the environment. Don’t throw it in thegarbage because children or animals may be able to get at it.

Source: www.pharmacists.ca

Q

Q

Q

510850BCS 5/31/06 5:25 PM Page 7

Courageous and determined:Pat Fleming challengesParkinson’s and herself By Ian Corks

ou have Parkinson’s disease.” With those four

words, Pat Fleming’s world waschanged forever. It was 1987, andthe words of the neurologist took a few seconds to sink in. “I felt asif I had just been handed a life sentence, with no appeal process!”Pat recalls. “My view of the futurewas extremely bleak. In fact, I

had a vision of living another five or six good years, followed by spending the rest of my life sitting in a wheelchair shaking.”

It’s now been almost 20 yearssince that fateful moment in thedoctor’s office. And Pat has longsince shattered that gloomy vision.Though not without their trials andtribulations, the years since her

diagnosis have been productive andfulfilling. Pat has more than metthe challenges of Parkinson’s with a courage and determination thathas earned her selection as one ofPSC’s Faces of Parkinson’s.

A good lifeThe world that changed for Pat thatday was a good one. Born and raisedin Toronto, Pat’s formative yearswere happy ones. She married RossFleming, a busy local physician,and devoted the next few years toher family, raising four children.When the kids were old enough,Pat returned to university, studyingeducation, gerontology and coun-selling. This led to an 18-year-pluscareer with the Family ServicesAssociation, where she ran a program offering information andsupport to older adults and theirfamilies in Toronto. It was a job Pat enjoyed, and one that wouldhelp prepare her for the challengesthat lay ahead.

“I had always felt so lucky,” Pat smiles ruefully. “Everything Icould dream of I had eitherachieved or had been given to me.Life was great! I often wondered ifthe future would bring somethingto even things up a bit. And indeedit did!”

Y


“

510850BCS 5/31/06 5:25 PM Page 8

The diagnosis of PD marked thebeginning of a new chapter in thelives of the Fleming family. “Thenext few months were the most difficult of my life,” Pat recalls.“My first hurdle was to deal withthe shock of the diagnosis. My nextstep was to get more informationabout this devastating disease. Ibecame more depressed with eachpiece of new knowledge I acquired.I remained in the doldrums for along time.”

Coming to termsBut rather than meekly give in toher situation, Pat decided to fightback. “One day I had a sudden pow-erful insight into what I was doing.I was letting my preoccupationwith my health and the bleakfuture I faced waste the very realpotential of the present. Gradually,I began to come to terms with mysituation and tried to work outsome sort of daily routine. I decidedto do as much as I can for as longas I can, taking one step at a time,challenging myself, but being opento change and adapting as needed.”

This positive attitude hasbecome one of the foundations ofPat’s life, and she continues to chal-lenge herself, both physically andmentally. “I remember attending apresentation by Dr. GeorgeTurnbull,” she notes. “He stronglyrecommended regular exercise forpeople with PD. He said exercisewas only slightly less important

than taking pills. He also empha-sized the importance of keepingactive mentally, socially, and physi-cally. It was a call to action for me.

“I have always believed in fit-ness and I love the outdoors, butover the years I have had to adapt.When swimming no longer becamesafe because I could not stay afloat,I obtained a good quality life jacketand now swim passably well. Whendownhill skiing was no longer safefor me, I switched to cross-countryskiing. In time, I had to stop thistoo, because of poor balance andnumerous falls; so I took up snow-shoeing.

“These days, I try to hike for anhour or two several times a week,either with my husband, a familymember or a friend. I love naturetrails. Sometimes I walk safely, andother times I need to hold some-one’s arm for support. I find theweekly exercise and Tai Chi pro-grams offered by the PSC Centraland Northern Ontario Region veryhelpful. I attend them regularly.”

Staying alert mentally is alsoimportant. Pat kept working foranother 10 years after her diagnosis.“Ironically, many of our clientswere also coping with Parkinson’s,”

she notes. “I certainly had no prob-lem empathizing with them!”

Keeping busyWhen she finally retired at the ageof 65, Pat still felt the need to staybusy. “What was I to do with allthe extra hours I had just beengranted?’ Pat recalls asking herself.“I wanted to find a truly meaning-ful volunteer job. I happened tonotice a newspaper item sayingthat the then Parkinson Foundationof Canada was planning to set up aPeer Support program. It would provide practical counselling andsupport on a one-to-one basis, especially to people who werenewly diagnosed. That is exactlywhat I would have appreciatedwhen I was in those bleak earlymonths. With my professional andpersonal experience, I knew I couldreally be helpful. Everything justfell into place after that.”

Pat spent the next few yearsworking two days per week as avolunteer co-ordinator of the PeerSupport Program, recruiting, train-ing and supervising volunteers.

“It helped me to handle myown condition better because Ilearned so much from the people Iworked with,” Pat recalls. “Ilearned from volunteers in the PeerSupport program and clients them-selves. Some were in pretty badshape but still able to share theirpractical coping skills and wonder-ful sense of humour.”


510850BCS 5/31/06 5:25 PM Page 9

Another key to Pat’s ability todeal with her condition has beenthe unwavering support of her hus-band. “Ross has been wonderful,”she smiles. “He has reached a levelof patience and understanding nei-ther one of us would have believedpossible. More importantly, he hasalways gently challenged me to dojust a little more than I felt I could.”

These days, Pat has cut back onher activities a bit, but she stillkeeps herself busy. She continuesto be involved in the cause that isdearest to her heart: helping peoplewith Parkinson’s and their familiesand loved ones. She still contributesher expertise and experience toPSC, serving on two committees.

Pat also regularly speaks to phar-macy students at the University of Toronto, providing valuableinsights into PD medications froma patient’s perspective that the nextgeneration of pharmacists findextremely useful. And, of course,she has been selected as one of theFaces of Parkinson’s.

“I was a bit reluctant at first,”she notes. “I’m not the type of per-son who likes to stand up and saylook at me.” However, it was Pat’smemory of her initial fears thathelped convince her. “I knew thatimage of an old person sitting in awheelchair drooling and shakinguncontrollably all the time is onethat too many people associatewith PD,” she recounts. “I thinkthe Faces of Parkinson’s campaigncan help give people a more realis-tic view of what Parkinson’s is,how people are affected and, mostimportantly, what they are not!

“As one of the Faces ofParkinson’s, I hope that I can tell—and show—people that you can’tstereotype someone just becausethey have Parkinson’s disease. Weare still members of the human

race and more than capable of mak-ing a contribution. People withParkinson’s disease can still do somuch—often much more than wethink we can. I hope this campaignwill help everyone, from men andwomen with Parkinson’s to thegeneral public, understand that.”

Of course, Pat still has “thosedays,” as she calls them. Dayswhen her movement is almost totally restricted or everythingseems overwhelming. And she stillexperiences times of doubt. Forexample, she admits being worriedthat her periods of dyskinesia (orthe “wigglies,” as the family callthem) would scare her grandchil-dren—a fear that has provenungrounded, as her 10 grand-children have responded withunconditional love, support andunderstanding.

“Life is certainly far from perfect,” Pat relates. “I still havemy ups and downs. I still have PDand try to live one day at a time.However, with God’s help, I amdetermined that my relationshipwith my illness will always be oneof accommodation, not surrender!”


Meet the Faces of Parkinson’sThe Faces of Parkinson’s is PSC’s exciting three-year campaign aimed at increasing public awareness and understanding ofParkinson’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 comefrom across the country and represent a full range of ages and backgrounds. One thing they all have in common is that they are notletting 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 morebackground on the campaign, see the Winter 2005 issue of Parkinson Post.)

510850BCS 5/31/06 5:25 PM Page 10


Honouring people whomake a difference

Sandie Jones has been described as a “hard working and dedicated servant” to people with Parkinson’sdisease and “a pillar of strength tothe Society.”

As Director of Client Servicesand Education for PSC Central and Northern Ontario, Sandie isinvolved in developing educationalprograms and staff and volunteertraining, as well as speaking on PDand its effects throughout centraland northern Ontario, and evenacross the country. In spite of herbusy schedule, however, Sandiealways finds time for individual consultation.

Sandie has used her nursingknowledge and experience to teachother nurses and caregivers aboutPD. As one award nominator notes,“Many thousands will benefit frombetter-informed nursing and personalcare staff who have attended in-serv-ice workshops that Sandie has pre-sented on the special requirementsof PD.” Since joining PSC in 1996,Sandie has touched and helped to

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

Dr. Gordon Hardacre has worked tire-lessly to improve the lives of peoplewith Parkinson’s, not just within hisregion but also across Canada.

For over 30 years, Dr. Hardacrehas served his Toronto communityas a family physician, researcher,teacher and advocate. He is currentlyDirector of Undergraduate FamilyMedicine Education, UniversityHealth Network and AssistantProfessor of Family & CommunityMedicine, University of Toronto.

Dr. Hardacre was diagnosed withParkinson’s in 1996. In the face ofhis own challenging symptoms, hehas not only continued to serve hispatients, but has worked to increasethe level of understanding of PDamong his fellow family physicians.He was instrumental in developingthe Medical Education and SupportProgram for GPs, and he continues toadvocate on behalf of PSC.

Maxine Thistle has had a tremen-dous impact on the lives of peoplewith Parkinson’s in Newfoundlandand Labrador.

Since joining the Executive ofthe St. John’s Support Group in1995, Maxine has been a tirelessadvocate for a regional board thattruly served the needs of the peoplein the province. In 2002, she becameChair of the newly formed ParkinsonSociety Newfoundland & Labrador(PSNL) Regional Advisory Board.Armed with her commitment and atrue understanding of the challengesof the region, Maxine has been the“driving force” behind the board and its ever-expanding programs and activities.

In the words of one of her nomi-nators, Maxine has “infused thePSNL Regional Advisory Board witha wealth of knowledge, an infectiousdedication to the cause, and a senseof joy and humour that is an inspira-tion to all.”

Mimi Feutl Award 2005: Sandie Jones

David Simmonds Award 2005:Maxine Thistle

Morton Shulman Award 2005: Dr. Gordon Hardacre

510850BCS 5/31/06 5:25 PM Page 11


specialist in the neuro-genetics and neurophysiology

of Parkinson’s disease (PD), Dr. Zbigniew Wszolek is world-renowned for his groundbreakingwork on genetics and PD.

Dr. Wszolek has a long-standingconnection to Canada, frequentlyworking with Dr. Calne and hiscolleagues at the University ofBritish Columbia. His Canadianresearch played a major part in the discovery of the gene LRRK2.This has been hailed as a signifi-cant finding that could lead to abetter understanding of cell deathin Parkinson’s and, eventually, curative treatments. Dr. Wszolekdetailed his role in the discovery of LRRK2 and its potential impli-cations during his fascinating talk.

Understanding genetic PDWhile genetic—or familial—forms represent a small minority of allcases of PD, the study of geneti-cally determined PD is a vital component of understanding thedisease as a whole. Genetic PDclosely resembles the more

common—or sporadic—form of thedisease in virtually every respect,except that it is usually inherited orpassed on from a family member.

The very nature of familial PD allows it to be studied in successive generations, providingresearchers with a natural “labora-tory.” Over the past 10 years, newtechniques and research tools haveallowed scientists to achieveunparalleled successes in trackingand understanding genetic PD.Researchers hope that data gainedon why and how cell death occursin genetic PD would also apply tosporadic forms and, therefore,strategies for modifying the processand preventing cell death wouldpotentially work for anyone withthe disease.

The first gene identified as afactor in PD was discovered in 1997 by a group from the NationalInstitutes of Health (NIH). TheNIH team had been studying alarge family from southern Italywith a history of autosomal (passeddown from the parents) PD. Sincethen, researchers have identified a

number of genes that play a role inthe disease’s development. Amongthese is the parkin gene, discoveredby noted Japanese researcherProfessor Yoshikuni Mizuno (theinaugural Donald Calne lecturer).Until recently, the parkin gene was the gene most commonlyidentified in cases of familial PD.

The road to LRRK2During this period of discovery, Dr. Wszolek was very active inresearch on the genetics of PD. In1992, he had started on a line ofinvestigation that would eventuallylead to an important breakthrough:the discovery of the novel geneLRRK2. It started with a singlepatient seen by Dr. Wszolek: a 57-year-old woman with moderatelysevere PD. Of particular interest toDr. Wszolek, the woman reportedthat her mother and several otherfamily members had also beendiagnosed with Parkinson’s.Eventually, she and several familymembers agreed to participate in a genealogical study. This family was named the Western Nebraska

A

Following a genetic trail:Dr. Zbigniew Wszolek’s search for theelusive cause of Parkinson’s diseaseBy Ian Corks

The Donald Calne Lecture series was launched in 2002 by ParkinsonSociety Canada (PSC). Each year, PSC invites a leading internationalexpert on Parkinson’s disease to address attendees at the PSC’s AnnualGeneral Meeting. The 2005 Donald Calne Lecture was delivered by Dr. Zbigniew Wszolek of the Mayo Clinic in Jacksonville, Florida.

510850BCS 5/31/06 5:26 PM Page 12


family and about 200 memberswere identified.

Cases of PD within this familyhad an average onset age of 64 and were associated with the classic symptoms of sporadic PD.However, a series of four autopsiesshowed some interesting “abnor-malities.” In each of the fourautopsies, the state of the Lewybodies (abnormal concentrations ofprotein that can accumulate innerve cells in the brains of peoplewith PD) was different. Thiscaused Dr. Wszolek and his teamto ponder why, in four members ofthe same family all presenting withthe typical features of PD, wereautopsy results different enough toalmost be indicative of differentdiseases? Though a mystery at thetime, the data from these studieswould provide a key part of theLRRK2 puzzle.

Meanwhile, in JapanAt the same time, Japaneseresearchers were studying anothercase of familial PD in a family,known as the Sagamihara family.Members of the Sagamihara familywith PD had a mean onset of 54years and members also exhibitedthe typical symptoms of the dis-ease. The researchers found impor-tant clues to the gene involved—but could not quite pin it down.Dr. Wszolek likened the situationto “finding out the province wherea person lived, but not quite identi-fying the city or the street.”

Back in North America, Dr.Wszolek was involved with yetanother family with a history ofPD. This was a German-Canadianfamily who he studied in co-opera-tion with Dr. Calne and Dr. JonStoessel of the University of BritishColumbia. The clinical presenta-

tion was different, with some family members showing signs not only of PD but of Alzheimerdisease-like dementia as well theamyotrophy associated with LouGehrig’s disease. Autopsies on twofamily members revealed someabnormal features, specifically the absence of Lewy bodies.

Putting the puzzle togetherThe data from these three familiesallowed Dr. Wszolek and others to,as he puts it, “piece the whole storytogether,” leading to the 2004 dis-covery of the novel gene Lecucine-Rich Repeat Kinase 2, or LRRK2.This gene appeared to be the onlyplausible genetic explanation forParkinson’s in the families studied.

Now LRRK2 is known to beone of the most common genesaffected in familial PD. Dr. Wszolekestimates that if you have a familyhistory of PD, the chances of youhaving a mutation in the LRRK2gene are approximately 13 per centif you are Caucasian, and as high as 30 per cent if you are of Africandecent.

For the past year, the LRRK2gene has been one of the mostactive areas of Parkinson’s research,with 48 scientific papers published.Researchers have shown that

different mutations can occur on different locations on LRRK2.What these mutations are andwhere they occur could account forthe very specific clinical featuresand pathological abnormalities that are seen in different families.

Discovering and interpretingthis type of genetic data couldpoint the way to the eventualdevelopment of treatment and even prevention strategies. As Dr. Wszolek notes, “Just like theRosetta Stone provided our key to the translation of ancient hieroglyphs, genetic studies holdthe key to the treatment of diseases such as Parkinson’s.”

In the case of LRRK2, the stud-ies started with a single patient,then led to a family tree, then topathology information that pro-vided data on chromosome abnor-malities. From there, the specificgene in question was isolated andnumerous mutations were discov-ered. The next step will be trans-genic animal studies towards thedevelopment and investigation ofspecific therapies for individualswith familial PD—treatments thatcould conceivably benefit anyonewho suffers not only from familialPD, but from the more commonsporadic form of the disease.

An inspiration to othersA native of Poland, Dr. Zbigniew Wszolek received his MD from the SilesianUniversity. He began his research on the genetics of Parkinson’s disease in 1987while a neurology resident at the University of Nebraska.

Since then he has established a reputation as one of the world’s leadingParkinson’s researchers, and his work has inspired and influenced many. He is a co-recipient of the prestigious M.K. Udall Parkinson’s Disease Center of ExcellenceAward from the National Institutes of Health and has more than 300 publications tohis credit. Dr. Donald Calne describes Dr. Wszolek as being like “the conductor of anorchestra of interdisciplinary researchers working in the area of genetics and PD.”

Today, Dr. Wszolek is Professor of Neurology, College of Medicine, Mayo Clinic,Rochester, Minnesota, and Consultant at the Mayo Clinic, Jacksonville, Florida. He is currently researching the Tau gene and Lewy Bodies in PD.

510850BCS 5/31/06 5:26 PM Page 13

ach September, thousands ofCanadians across the country

join together to raise funds forParkinson’s. In 2005, revenue fromSuperWalk for Parkinson’s reachedan all-time high of $1.75 million!To the many dedicated volunteers,staff and walkers who participated,thank you!

This September, take up thechallenge and walk with us as wecontinue our streak of breaking eachprevious SuperWalk record. Bringyour family, friends and co-workersand walk with us toward a cure.Tom Cochrane, our honourary chair,will be joining us again this year.

Parkinson Society Canada ishonoured to have the consistentsupport of many sponsors who give

money, send company teams andvolunteers, and provide the fantas-tic prizes and incentives that makewalk day great for our supporters.They each contribute so much aswe strive to make a difference in

the lives of those around us withParkinson’s. Because of them, our goal is closer every day.

Don’t forget to visitwww.superwalk.com and register on-line for any walk in

Canada. This is an easy way tosend invitations to friends askingthem to join in or send you apledge. Registration is free andfast–—in 2005 we had more on-line walkers and donations than ever before! While you’re on-line, don’t forget to check outthe great team and individual prizes and incentives.

See you in September!

Join us at SuperWalkE


510850BCS 5/31/06 5:26 PM Page 14

Gold Silver BronzeAstra 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• $10 in ROOTS gift certificates for every $100 raised• one Grand Prize draw ticket for every $100 raised• two free Solstice Beauty products (retail value of $30)

with any minimum $20 on-line purchase—free shipping

RAISE $1,000–$2,499SuperSTARWalker• a blue SuperSTARWalker hat and pin• one chance to win in the draw for an AQUOS LCD Television,

courtesy of SHARP• $10 in ROOTS gift certificates for every $100 raised• one Grand Prize draw ticket for every $100 raised• four free Solstice Beauty products (retail value of $70)

with any minimum $20 on-line purchase—free shipping

RAISE $1,000–$2,499SuperSTARWalker Supreme• a red SuperSTARWalker hat and pin• one chance to win in the draw for an AQUOS LCD Television,

courtesy of SHARP• $10 in ROOTS gift certificates for every $100 raised

• one Grand Prize draw ticket for every $100 raised• seven free Solstice Beauty products (retail value of $125)

with any minimum $20 on-line purchase–free shipping

RAISE $5,000+• everything listed for the SuperSTAR Supreme plus ...• MindFit, a new easy-to-use computer software program that

provides a comprehensive program of mind-fit exercises (retail value $175)

• a basket of Deep Cold products (retail value of $100) courtesy of the Mentholatum Company of Canada

GRAND PRIZE DRAW1 10-day Costa Rica Rainforest Adventure, courtesy of ElderTreks2 Two Hospitality Class Airline Tickets to any scheduled interna-

tional Air Canada destination, courtesy of Air Canada*3 Cineplex Entertainment VIP Card, one year of unlimited movie

admissions for two, courtesy of Cineplex Entertainment

* Some time restrictions on travel may apply. Qualification for national prizes is notopen to any employees of Parkinson Society Canada and its regional partners or toany member of their immediate families. Parkinson Society Canada reserves the right to substitute an alternate prize.


Team challengeJoining the walk as a team makes a great day even better! Friends, family and co-workers can all join together. For moredetails, ask your regional office for a team book.• Each qualifying team member can be eligible to be part of the

draw for ROOTS leather bags, valued at $400 each, and stillget their individual prizes.

• All corporate teams can be part of our SuperSTAFF for

SuperWalk campaign and get their team name, company nameand total funds raised listed on our website.

SuperSTARWalkersRaise $1,000 or more, become a SuperSTARWalker, and get evenmore exciting prizes and incentives. In 2005, SuperSTARWalkersacross Canada raised close to half-a-million dollars.

510850BCS 5/31/06 5:26 PM Page 15

Angelic artStudents at Guardian AngelsCatholic School in Brampton,Ontario, put their artistic talentsto work by creating pictures oftulips, the symbol of PSC and thefight against Parkinson’s.

At the invitation of PSCCentral and Northern OntarioRegion, 22 kids from Ms. Stoker’sgrade two class produced somecolourful and beautiful images.“The students really enjoy express-ing themselves,” comments aGuardian Angels staff member.“It’s nice to be able to help a charity at the same time.”

Passing the batonThe first annual Pass the Baton forParkinson’s was held at BerriganElementary School in Barrhaven,Ontario, to help educate elemen-tary school students on PD.

This event was designed andcoordinated by Shelby Hayter,who, last year, raised awarenessand over $36,000 for theParkinson’s Research Council(PRC) by running in the gruelingBoston Marathon—just one monthafter being diagnosed with youngonset Parkinson’s at age 40.

The idea was to demonstratehow a doctor, a scientist, a patient

and caring people in the commu-nity (including children) can worktowards a common goal such asfinding a cure for Parkinson’s.

With the assistance of Dr. David Grimes and Dr. David Parkof the PRC, Shelby led students ina series of exercises highlightingthe four common physical abilitiesaffected by Parkinson’s: strength,balance, flexibility and speed. Eachclass participated in a 15-minutecircuit before they passed thebaton to the next class. At anassembly the previous day, stu-dents helped to simulate a few ofthe effects of PD through a seriesof walking and running drills, firstwearing running shoes, then over-sized winter boots, and finallyoversized ski boots.

The original event raisedalmost $3,700 for the PRC and generated awareness for Parkinson’sthrough television and local news-paper coverage.

Spreading the wordabout Parkinson’sApril 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.


Guardian Angel students (left to right) Taylor Rawn-Kane, Kaitlin McCutcheon, Franklin Turksonand Gabrielle David show off their April Awareness tulips.

Shelby Hayter tells students that everyoneneeds to work together to find a cure for PD.

Phot

o: G

eorg

e B

ashi

ri

510850BCS 5/31/06 5:26 PM Page 16

Manitoba MLAs get the messageParkinson Society Manitoba hosteda special reception for Members ofLegislative Assembly (MLAs) toraise awareness among legislatorsand health officials about the dev-astating effects of the condition.

Attendees learned about PDand had a chance to review andsign the Global Declaration onParkinson’s Disease. In addition,the Honourable Peter Bjornson(MLA Gimli), Manitoba’s Ministerof Education, Citizenship andYouth, presented a framed copy ofhis private member statement toJean Kristjanson, widow of the late Dr. Leo Kristjanson, a long-time

resident of Gimli. The statementaddressed the burden of PD andpaid tribute to Dr. Kristjanson, theformer President of the Universityof Saskatchewan and Member ofthe Order of Canada, who passedaway in 2005 after a long battlewith PD.

Education Maritimes-styleParkinson Society MaritimeRegion held a week-long series of interesting and informative lectures on various aspects ofParkinson’s disease. Guest lecturerSandie Jones, Director of ClientServices and Education, PSCCentral and Northern OntarioRegion, made seven presentationsin five days, speaking in Saint John,New Brunswick; Summerside,Prince Edward Island; and Sydneyand Pictou, Nova Scotia.

The Bridgewater, Nova Scotia,Chapter organized a full day work-shop on April 11 to mark WorldParkinson’s Day. The event attractedover 100 people, who participated inseven practical sessions.

Keep on rocking!For three days straight,Newfoundland’s 83-year-old BurtFudge “rocked” for Parkinson’s.

The Grand Falls-Windsor resi-dent sat and rocked from nine to

five on April 20, 21 and 22. It wasthe second year for Burt’s “rock-a-thon,” and this year he raised $525for Parkinson’s research.

Piggies for Parkinson’sParkinson Society Newfoundlandand Labrador (PSNL) put a herd ofpink piggies to work in their AprilAwareness campaign.

Adorable custom-madeParkinson’s piggy banks were putup for “adoption.” The idea is touse the bank to collect sparechange, and return it to PSNLwhen full. The piggy will be emp-tied, then returned to its ownerand put back to work for anotheryear. To date, about 150 Parkinson’spiggies are in circulation.

And much more

Calgary: The One Enchanted Evening Progressive Dinner

fundraiser was a sell-out, with over 100 guests enjoying

champagne, wine-tasting and an excellent meal.

Edmonton: The 28th Annual Annie Wyley Memorial

Lecture was delivered by Dr. Richard Camicioli of the

Edmonton Movement Disorder Clinic.

Montreal: Journee modiale de la maladie de Parkinson

(World Parkinson’s Day) was marked by an art exhibit at

Complexe Desjardins–Grande Place. Six artists displayed

their works and raised funds through sales of a calendar.

Winnipeg: A Parkinson’s

Awareness ad campaign,

featuring the tag line

“You are not alone,”

appeared on a Winnipeg

city bus.


Jessie Goodyear proudly shows off her newlyadopted Parkinson’s Piggy.

Jean Kristjanson (left) accepts the framedtribute to her late husband, Dr. Leo Kristjanson,from Manitoba’s Minister of Education,Citizenship and Youth, Peter Bjornson.

510850BCS 5/31/06 5:26 PM Page 17


Parkinson’s research around the world and he

Explaining nigrostriatal tract degenerationGerman investigators used a varietyof techniques and strategies inattempting to understand why thenigrostriatal tract degenerates inParkinson’s disease (PD), while anadjacent dopamine tract (the ventraltegmental tract) is less affected.

In mice models of PD, investiga-tors found that channels in the substantia nigra cells that regulatethe passage and excitability of theion potassium into the cell wereopen. However, the channels in theadjacent tract were not. These chan-nels (termed K-ATP channels) areregulated by ATP, the energy mole-cule, so that they open when theconcentration of ATP is reduced.ATP is generated in the mitochon-dria, the energy-producing units in acell. If the mice had channels thatwere genetically altered so that theycould not be opened, the Parkinsonmodels could not be produced.

This finding further supports evidence for an energy failure inparkinsonian nigrostriatal cells, andshows that the potassium channel isnecessary for degeneration of cells. Itnow becomes important to determineif there are drugs (such as CoQ10)that might affect the energy genera-tion in the mitochondria or mightactivate the potassium channel to prevent or delay neurodegeneration.

Reference: Nature Neuroscience, Dec. 2005

How levodopa treatment works Thirty-six years after the discovery

that levodopa could reverse thesymptoms of PD, uncertaintiesremain as to how it actually works.However, recent advances in neuro-biology and genetics have opened upnew opportunities to seek answers.

Investigators from Scotland andthe U.S. have applied a number ofadvanced approaches to geneticallyengineered mice models and a ratmodel of PD in an attempt to assessthe effect of dopamine deficiency onbrain circuitry beyond the site of thedamaged and dopamine deficientnerve cells (the nigrostriatal tract).The mice were created by theAmerican National Institute ofNeurological Diseases and Stroke,and the rat model was developed by a Canadian investigator (and former member of PSC’s ScientificAdvisory Board).

It has been known for about 18years that there is an imbalancebetween two motor control systemsthat are normally muted. One system—called the “indirect” pathway—develops an abnormal pattern ofactivity in a fashion that shutsdown motor activity. TreatingParkinson’s with deep brain stimu-lation appears to partially block a“way-station” in this pathway, thusreducing the abnormal activity.

The investigators studied micein which specific nerve cells,known as medium spiny neuronsthat are targets for dopamine in thelarge nucleus or “way-station”called the striatum, were labeledaccording to which of two variants

of dopamine receptor they con-tained. The “indirect pathway” neurones contain only the so-calledD2 form of receptor, whereas the“direct pathway” neurones containonly the D1 form. The researchersfound that when dopamine wasdeficient, there was a marked loss ofthe D2 receptors but not D1 recep-tors. These spines also serve as thereceptor region for nerve inputs thatuse glutamate, a neurotransmitterthat acts to increase activity.However, the loss of spines and glutamate input appear to create an abnormal pattern of increasedactivity in the “indirect” pathway.

The connection between thedopamine deficiency and the loss ofspines was shown to be a channelthat controls the movement of cal-cium into the cells. If the channelwas removed or blocked, dopaminedeficiency did not result in a loss ofspines. Thus, in the medium spinyneurons of the initial link in the“indirect pathway” that were sub-ject to a reduction of dopamine, acalcium channel was affected thatresulted in a distorted activation byglutamate neurotransmitter.

Drugs that block calcium chan-nels are in common use for treat-ment of high blood pressure andangina. Further studies are under-way to determine if any of thesecalcium channel blockers could beconsidered for trials in PD to reducethe effect of dopamine deficiency.

Reference: Nature Neuroscience,

February 2006

Research Editor: Dr. John Wherrett

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

510850BCS 5/31/06 5:26 PM Page 18


nd here in Canada

Renowned scientist recognized withDonald Calne LectureshipParkinson Society Canada (PSC) ispleased to announce the award ofthe fourth annual Donald CalneLectureship to Dr. Jon A. Stoessl,Director of the Pacific Parkinson’sResearch Centre at the Universityof British Columbia (UBC) inVancouver.

A native of London, U.K., Dr. Stoessl moved to Canada in1960 and obtained his MD from the University of Western Ontarioin 1979. His post-doctoral workfocused on movement disorders,PET technology, Alzheimer diseaseand neuropharmacology. Dr. Stoessl’scurrent research is focused on under-standing basal ganglia disorders,

particularly Parkinson’s disease,including complications of long-term therapy. Dr. Stoessl’s lab usespositron emission tomo-graphy (PET) to study thenatural history and pro-gression of Parkinson’sdisease, compensatorychanges that take placeduring the course of the disease, and changes associated with the develop-ment of motor complica-tions. Dr. Stoessl and his colleagueshave used PET to demonstratedopamine release as a mechanismunderlying the placebo effect inParkinson’s.

This lectureship was establishedin 2002 to honour Dr. Donald Calne

for his outstanding service to theParkinson’s community as Professorof Neuroscience, UBC, and past

chair and long-time member of the ScientificAdvisory Board, PSC.

Each year PSC awards adistinguished neuroscientist,whose work is primarily inthe area of Parkinson’s dis-ease, with this lectureship.The recipient will deliver a “state of the illness”

lecture on Parkinson’s disease toPSC’s Annual Meeting. This year’slecture will be given in Ottawa onFriday, November 3, at “Bridging theGenerations,” PSC’s AnnualConference. To register, watch forinformation at www.parkinson.ca.

Along with hiscolleagues atthe Centre de

recherche de l’Insitut de Gériatrie deMontreal (CRIUGM) and the MontrealNeurological Institute, Dr. Monchi isstudying cognitive problems in PD. Tobe more specific, he is using functionalmagnetic resonance imaging to com-pare the mechanisms responsible for thecognitive and motor deficits associatedwith the disease.

“The neurobiological dysfunctions inthe brain responsible for these deficitsare not well understood,” explains Dr.Monchi. “We can use new functionalbrain imaging techniques to identify theneural circuits responsible. This will helpus to understand how these problemsevolve—to track their pathophysiology. It

may help us to predict and perhaps prevent them.”

It is highly specialized work andrequires specialized expertise. Dr. Monchihas that expertise, earning a PhD incomputational neuroscience modeling atKing’s College, University of London.Returning to the Montreal area where hepreviously lived, he served post-doctoralfellowships at the Montreal NeurologicalInstitute and the CRIUGM in order todevelop an expertise in functional neuro-imaging. He is now assistant professorat the University of Montreal and leadresearcher on this Parkinson SocietyCanada-funded project at the CRIUGM.

“We are making progress,” statesDr. Monchi. “We were first to show differences in neural circuit activitydepending on whether or not the

striatum was involved. Cortical activitywas decreased if the striatum wasinvolved and increased if it wasn’t. Our work will also allow us to measurecognitive and motor deficits togetherand correlate data, something that hasnot been done previously.”

In addition, Dr. Monchi’s work couldhave added significance in emergingareas of Parkinson’s research. “For thelast 20 years, nigrostriatal dopaminedepletion has been thought to be thecause of PD,” he explains. “Now, someprominent researchers are speculatingthat it is time to ‘look beyond nigrostriataldopamine.’ They suggest there may beadditional pathophysiologies. Functionalneuroimaging could be important inidentifying these.”

Focus on…Dr. Oury MonchiPSC New Investigator Award

Centre de Recherche de l’Insitut de Geriatrie de Montreal, Montreal, Quebec

Dr. Jon A. Stoessl.

510850BCS 5/31/06 5:26 PM Page 19

Staring downParkinson’s

By Alistair Thomson, Oshawa, ON

arkinson’s introduced me tomy new self, and I like the

person I’ve met. I’ve been lucky. I’ll tell you why.

Shortly after I was diagnosed, I began a study of what causesParkinson’s disease. Early in myresearch, I discovered the idea thatthe body is affected by the mind.Time and again, research studiesprove that stress and conflict causeserious illness.

My life was a history of stressand conflict, so it’s obvious whyParkinson’s struck: I set myself up for it. However, in my search for answers, I discovered a cause for hope. In reading many medical histories, I learned that whenpatients let go of anxieties andachieved peace of mind, they recov-ered or dramatically improved thequality of their lives.

Time to changeIf ever there was a man who lackedpeace of mind, it was me. Facedwith Parkinson’s, I knew I had tochange. Now, I’m at least in the

process of changing. After all, itisn’t a passive process. I have towork at it. Fortunately, I havelearned that the way I react tostress is more important than the stress itself.

There is a connection betweenpeace of mind and the ability tolove oneself. Psychiatrists confirmthat children who are unloved grow into adults who do not havethe ability to love themselves or others. Yet loving oneself is basic to acquiring peace of mind.

Science has shown that peoplecan recover from incurable diseases,so I am convinced that I can getwell no matter the odds. I know

the mind can work near-miraculouscures. However, recovering fromParkinson’s is my second goal. Myfirst goal is to achieve true peace of mind. I am told it is achievedonly by making a commitment to a more loving and accepting outlook—this sounds good to me.

A marvelous adventureI’ve always been convinced that life is a marvelous adventure. Insupport of my optimism, I have aloving, patient, understanding wife,I have no financial worries, I amhappily retired, and I come from a long line of tough Scots. I havenothing from which I wish to

P

First Person

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

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


510850BCS 5/31/06 5:26 PM Page 20


escape. My point is that I refuse tobe a victim. I want to live to be at least 100 years old and, alongthe way, to become an expert onParkinson’s.

Alternate causes and curesIn my research on Parkinson’s disease, I’ve encountered many suspected causes. However, there isone condition that studies have notmentioned. In fact, I’m reasonablysure this night visitor may havebeen responsible for causing my Parkinson’s, but I have noresearch to support my conclusion.Although there are many studies of sleep disturbances and the disease, I have found none that say conclusively that sleep apnea,over the long term, may causeParkinson’s. Sleep apnea causes the person to stop breathing whileasleep. Overnight monitoring of my sleep pattern at a sleep clinicrecorded that I had stopped breath-ing 97 times in an eight-hourperiod. Adequate blood oxygen levels depend on a normal breath-ing pattern. Surely decreased bloodoxygen levels, over the long term,must damage brain cells.

The most effective remedy forsleep apnea is to use an air supplywhen asleep. For more than a year,I experimented with air pumps and face masks. It was frustratingbecause the mask would not sealproperly against my face; as aresult, I would awaken severaltimes in the night, as the air leak-ing through the seal emitted a loudBronx cheer. After spending hun-dreds of dollars on masks that wereoften barely functional, I found asystem that has two short tubeswhich are inserted in the nostrils.This system works better than amask and allows me to have ninehours of sleep a night. The pump

holds a steady quarter-pound of airpressure in my upper air passages,thus ensuring that I breath nor-mally and maintain a viable blood-oxygen level. Solving the sleepapnea problem has alleviated manyof the Parkinson’s symptoms. I nolonger have a tremor, my balance isrestored, I no longer have daytimefatigue, and my ability to concen-trate is restored.

Let’s talk about available drugtherapy for Parkinson’sdisease. I have been exper-imenting with alterna-tives. In my experience,my anti-depressant seemsto act as a facilitator formy Parkinson drug andallows it to work moreefficiently. I have alsoconsulted with a Chinesedoctor of herbalmedicine, andhe recommended anherbal remedy that has no side-effects. Medicaldoctors are often skeptical of herbaltreatment, but because of theherbal medicine, I have cut mymedication dose in half. My wifeand I are happy with the reducedside-effects, and I feel I have control of my medication.

I am also in control of myhealth, as Parkinson’s has encour-aged me to be physically active. I walk for an hour each day on an indoor track at the OshawaYMCA, and I usually cover fourmiles. After my walk, I work withweights or swim a few lengths ofthe pool. The exercise helps mefight the disease.

Life is a giftLife is many things. It’s certainly a challenge. An extra 10 poundslifted on a bench-press or an addi-tional length in the pool can help

to lift one’s spirit. Life is also anopportunity to make a contributionto humanity. And life is a gift.

To others with Parkinson’s, Isay don’t accept that there is noth-ing you can do. You can research.You can hope. You can find sourcesof alternative treatment. You cantalk to Parkinson’s patients. Youcan re-organize your life. You canmeditate. You can pray. Use everyresource that you believe in.

You may think it unusual for a Scots Presbyterian to quoteHarold S. Kushner, a Jewish rabbi,but his words are profound:

“No one ever promised us a lifefree of pain and disappointment.The most anyone promised us isthat we would not be alone in ourpain, and that we would be able todraw on a source outside ourselvesfor the strength and courage wewould need to survive life’stragedies and life’s unfairness.”

That’s promise enough to staredown Parkinson’s.

Editor’s note: The experiencesdescribed in First Person are personal and not necessarily appropriate for all individuals. You should always consult yourphysician before making anychanges to your medical treatment.

Alistair enjoys playing the piano, one of his many hobbies.

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providing one-and-a-half hour massage therapy sessions to thosewith Parkinson’s. The sessions are held in conjunction with theParkinson’s exercise class. Thesesessions are always full, and oftenthere is a waiting list for the nextsession. Persons with Parkinson’swho have participated in the exer-cise and massage therapy sessionshave reported less stiffness in their muscles, greater flexibilityand range of motion in theirmovements, and better sleep.

Sheree Trecartin, RNVON Parkinson Nurse, Saint John, NB

Article reprinted with permission fromDown East Parkinson News.

relaxation exercises for 30 minutestwice a week for five weeks (10 ses-sions total). Physicians then ratedparticipants in the massage therapygroup as having shown an improve-ment in the Activities of Daily LifeScale (Schwab and England, 1958)and showing slight improvement in increased independence and func-tioning on chores. The massagegroup also reported more effectivesleep and less sleep disturbances.

The Saint John Chapter of theParkinson Society Maritime Regionis presently experiencing the valueof massage therapy as a complemen-tary therapy in the treatment ofParkinson’s disease. For the past sixmonths, massage therapy studentsfrom Compu College have been

“Can you tell me more aboutmassage therapy and how

it can help with my Parkinson’ssymptoms?”

Massage therapy is the hands-on manipulation of the body

for the purpose of healing. It is oneof the oldest forms of therapy in theworld. In fact, massage therapy hasbeen documented as early as 1552B.C. in Egypt “as a form of medicaltreatment.”

Massage therapy is now rankedthird among the most frequentlyused forms of alternative healthcare, according to a survey of alter-native medicine that was publishedin the New England Journal ofMedicine.

Studies since then have foundthat massage therapy is beneficialfor patients with Parkinson’s disease. For example, at the TouchResearch Institute at the Universityof Miami, 16 patients withParkinson’s disease were dividedinto two groups: one group received30 minutes of massage therapy ses-sions twice a week for five weeks(10 sessions total), and the othergroup received progressive muscle

A

Q

Visit us on-line: www.parkinson.caOur website is being updated regularly. Please watch for more changes in themonths 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 andBoehringer 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.

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

W E B S I T E H I G H L I G H T S

510850BCS 5/31/06 5:27 PM Page 22


Managing Parkinson’s:Straight Talk and Honest Hope

By American ParkinsonDisease Association

Reviewed by BarbaraSnelgrove

The newest resource fromthe Washington Statechapter of the AmericanParkinson Disease Asso-ciation is a comprehen-sive guide to maximizingquality of life for peoplewith Parkinson’s disease.

The hour-long DVDcontains interviews withprominent doctors, healthcare professionals andpeople living with the disease.

The DVD is dividedinto several modules sopeople can select theirown topic and learn attheir own pace. Part onecovers the disease andtreatments. Part two cov-ers ways to help maintainquality of life. Part threeintroduces people livingwith Parkinson’s diseasewho share their wisdom.An extensive resourcessection is also included.

The free DVD is avail-able for ordering online at www.waparkinsons.org/DVDRequest.asp.

The Truth About Depression:Choices for Healing

By Charles L. Whitfield, MD

Reviewed by Alistair Thomson

This book should be on your“must read” list if you havedepression. It explores thetheory of childhood traumaas a cause of adult depres-sion. Dr. Whitfield says that if a child is repeatedlyabused or neglected, his or her brain and nervous system will be damaged.

Whitfield questions con-ventional wisdom regardingdepression. For example, hedoes not believe that depres-sion is caused by faultygenes or brain chemistry. He believes that doctorsmust discover the traumaand stressors which cause a person to be depressed.

Written in clear andunderstandable language,The Truth About Depression:Choices for Healing is published by HealthCommunications Inc. Visit www.hci-online.com.

Cook Well, Stay Well with Parkinson’s Disease

By Kathrynne Holden, MS, RD

Reviewed by Ian Corks

Kathrynne Holden is a dieti-tian specializing in nutritionfor people with PD, and whenit comes to cooking for thiscondition, she obviouslyknows what she is talkingabout.

This practical book pres-ents almost 200 “PD friendly”recipes, covering everythingfrom salads and snacks toentrées and desserts. Therecipes are chosen based ontheir nutritional value andease of preparation. Each onecomes with a quick checklistidentifying features such as“Easy-Fix,” “Easy-Chew,”“High Fiber,” and other useful indicators. In addition,Holden concisely and knowl-edgeably sets the stage in the Getting Started section,discussing why and how these recipes can contributeto better health.

This book’s no-nonsense,easy-to-follow approach makesit an invaluable resource foranyone preparing meals for aperson with PD.

You can order the bookon-line at www.nutritionucanlivewith.com.

Please remember that whileParkinson Society Canada providesinformation about the availabilityof new resources in this section,this does not necessarily implyrecommendation or endorsementof the contents.

Parkinson’s Disease: An Essential Guide for the Newly Diagnosed

By Jackie Hunt Christensen

Reviewed by Rosemary Craig

Jackie Hunt Christensen, aParkinson’s patient/expert,walks you through every-thing you need to learn anddo. This book does indeedcover a large number andrange of topics, from signsand symptoms and diagno-sis, through treatments(conventional and comple-mentary), to family issuesand life planning.

Overall, this book givesan overview of PD and theissues that people withParkinson’s have to cometo terms with. The book’sstrong points are lots ofinformation and resources.The book’s weak point isthe lack of depth of infor-mation and explanation(e.g., “what is PD?” wasefficiently described; how-ever, I was left asking“Where exactly in the brainis the substantia nigra?”)

A good starter book forthe newly diagnosed, withlots of resources for thenext level of learning.

Visit your local book-store to order your copy.

510850BCS 5/31/06 5:27 PM Page 23

Ease the Burden ; F ind a Cure

www.park inson . ca

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 WillGift of Life InsuranceCharitable Remainder TrustGift of Residual InterestGift AnnuityCommemorative Gifts

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

Parkinson Society Canada National OfficeTo discuss a planned gift orrequest an information kit,please call:(416) 227-3385Toll Free: (800) 565-3000,ext. 3385www.parkinson.ca/donating/theparkinsonlegacy.html

Parkinson Society British ColumbiaPh: (604) 662-3240Toll Free (BC only): (800) 668-3330

Victoria Epilepsy andParkinson’s Centre SocietyPh: (250) 475-6677

The Parkinson’s Society ofAlbertaPh: (780) 482-8993Toll Free: (888) 873-9801

The Parkinson’s Society ofSouthern AlbertaPh: (403) 243-9901Toll Free (Alberta): (800) 561-1911

Saskatchewan Parkinson’sDisease FoundationPh: (306) 966-1348

Parkinson Society Manitoba Ph: (204) 786-2637 Toll Free: (866) 999-5558

Parkinson Society CanadaCentral & NorthernOntario DistrictPh: (416) 227-1200Toll Free National: (800) 565-3000

Parkinson Society CanadaSouthwestern OntarioRegionPh: (519) 652-9437Toll Free Ontario: (888) 851-7376

Parkinson Society OttawaPh: (613) 722-9238

Parkinson Society Quebec Ph: (514) 861-4422Toll Free: (800) 720-1307

Parkinson Society CanadaMaritime RegionPh: (902) 422-3656Toll Free (NS, NB & PEI):(800) 663-2468

Parkinson SocietyNewfoundland & Labrador Ph: (709) 754-4428Toll Free (NFLD / Labrador):(800) 567-7020

We NeedYour Support

510850BCS 5/31/06 5:24 PM Page 24

Documents

The Faces Faces of of Parkinson’s Parkinson’s