fall/winter 2007 volume 7 i fall/winter 2007 issue 3 $5fall/winter 2007 nvolume 7n issue 3 $5.75...

Fall/Winter 2007 n Volume 7 n Issue 3$5.75

Ease the Burden; Find a Cure

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Fall/Winter 2007 n Volume 7 n Issue 3$5.75

The caregivingjourney:

Sharing the Parkinson’s path

Support across the regions:

Where to turn for help

Partners inParkinson’s:Caregivers share their personal stories

The caregivingjourney:

Sharing the Parkinson’s path

Support across the regions:

Where to turn for help

PLUSSuperWalk raises $2 million for research

Partners inParkinson’s:Caregivers share their personal stories

PLUSSuperWalk raises $2 million for research

This issue of Parkinson Post is dedicated to the topics of care and support and is directed to the many caregivers who help people with Parkinson’s.

Support comes in many forms from many health care professionals, but no one knows more about what it means to provide care and support than the families of people living with Parkinson’s. It is our families who are therefor us from diagnosis to late stage Parkinson’s. It is family members who offerunderstanding and a sympathetic ear, drive us to appointments and provideencouragement. And it is our families who provide more involved caregivingwhen we need it.

The strength and support of a family is critical. Together, a family, large or small, can meet a challenge that might defeat an individual.

Parkinson Society Canada (PSC) has been providing support for over 40 years through support groups, funding research, education and advocacy.Recognizing that we are stronger when we work together and understandingthat there are many different kinds of support, I want to welcome your family to our family. Together, family members can have a greater impact helping people with Parkinson’s now and in the future.

For this reason, we at PSC are pleased to introduce The Family Fund,which has been developed to offer yet another kind of support. Its purpose is to allow individuals like you to combine your giving as a family, enabling you to collectively make a generous donation that perhaps you individuallycould not make.

As a contributing family, you will be part of a bigger family where, as we all know, the sum is greater than the parts. Together, family members can contribute to leading edge research that will enable us to get closer to the cause, to find new treatments and ultimately, to find the cure.

Our Family Fund goal is $3 million. It will enable individuals to jointogether to make a significant contribution as a family. And it will help us increase the money committed to research.

Being part of a family of someone with Parkinson’s has its challenges, but it also has so many rewards. We want to welcome you to the PSC family; you can count on us for the support you need.

To learn more about joining our Family Fund, please contact Jim Allen at 1-800-565-3000 ext. 3385 or [email protected].

Welcome to our family

EditorialAdvisory

Committee

Bonnie Clay RileyPerson with Parkinson’s

B.C.

Rebecca GruberPhysiotherapist

Ontario

Beth HollowayPerson with Parkinson’s

Newfoundland and Labrador

Dr. Mandar JogNeurologist

Ontario

Gisele MarcouxCoordinator of Direct Services

Parkinson’s Society of Southern Alberta

Dr. Michel PanissetNeurologist

Quebec

Barbara Snelgrove Director

Education and Services PSC National

Marjie ZacksNational Director

Communications and MarketingPSC National

ON OUR COVER: Pam Barry (left) is a great source of

support to her partner, Beth Holloway (right). Read more about Pam,

Beth and other caregivingpartnerships on page 11.

Joyce Gordon, President and CEO,

Parkinson Society Canada

F a l l / W i n t e r 20 0 7 P a r k i n s o n P o s t 3

4 P a r k i n s o n P o s t F a l l / W i n t e r 20 0 7

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.

ParkinsonPostA magazine for Canadians living with Parkinson’s

Parkinson Post Vol. 7, Issue 3, Fall/Winter 2007

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 published three times a year by BCS CommunicationsLtd., 255 Duncan Mill Road, Suite 803, Toronto, ONM3B 3H9. Tel: (416) 421-7944 Fax: (416) 421-8418. All rights reserved. Contents may not be repro-duced without permission of Parkinson Society Canada.Printed in Canada. All material related to Parkinson’sdisease contained in this magazine is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflectthe opinion of the writer and are not necessarily theopinion of Parkinson Society Canada or the publisher.Canadian Publication Mail Sales Product Agreement No.40624078. © 2007

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.

COLUMNS

Letter fromParkinson SocietyCanadaWelcome to our family. 3

Regional Partners/RoundupHighlights from PSC partners across Canada. 5The AdvocateTaking action:Care partners as advocates. 7

First PersonA hero and an inspiration. 20Website HighlightsLearn what’s new on-line at www.parkinson.ca. 22Ask the ExpertHelpful hints from health professionals. 23

SafetyHome alone:How to ensure a safe environment while maintaining a person’s autonomy. 15

ResourcesSupport across the regions:How to find the help you need. 16SuperWalk 2007Parkinson’s SuperWalk raises a record $2 million for research! 18

SupportThe caregiving journey:Sharing the Parkinson’s path. 8

Life with Parkinson’s:Care partners share their stories. 11Finding time for yourself. 14

Ten tips for caregivers:Advice for lightening your load. 14

FEATURES

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© Two new support groups

(New Diagnosis Group and West End Group) have been added in Vancouver.

© In collaboration with thePhysiotherapy Association BC, aParkinson’s physio and exercisereferral list has been developed.

© The PSBC conference“Parkinson’s: The Journey,” heldon October 26, had 200 delegatesin attendance.

© Ms. Rasheda Ali will be the guestof honour/speaker at the ThirdAnnual “An Affair to Remember”fundraising gala on Thursday,April 3, 2008.

Victoria Epilepsy and Parkinson Centre813 Darwin AvenueVictoria, BC V8X 2X7Ph: (250) 475-6677Fax: (250) 475-6619www.vepc.bc.ca© The stress management program

has expanded and will nowinclude professionally facilitatedgoal-setting and action-planning.

© Newly designed educational meetings have been moved offsiteto a seniors’ wellness centre.

© We are conducting an outreachphone link with 100 isolatedclients and their caregivers.Common interventions includehelping to clarify issues needing

physician follow up, making refer-rals to community health servicesand offering counselling support.

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 © PSA’s Gunnar Henriksson took

part in the 2007 Alberta ProvincialPowerlifting Championships andwon the Masters II (50-59 years)275 lbs class.

© Lorraine Mills, RSW, has joinedPSA’s staff as Client Services andEducation Manager.

© The 12th Annual SuperWalk forParkinson’s, held in Edmonton,raised $90,000.

© Brad Mates/E-Drive CharityConcert was held in September for the Emerson Drive ScholarshipFund in conjunction with GPRC.

© Brad Mates/E-Drive Celebrity Golf Tournament was held inSeptember at the Spruce MeadowsGolf Club in Grande Prairie with proceeds going to PSA.

© The First Annual Gordon andDiane Buchanan Gala forParkinson’s was held in conjunc-tion with PSA on September 13 atthe Union Bank Inn in Edmonton.

© Dr. Wayne Martin, MD, FRCPC,Director Movement DisorderClinic, presented “RecentAdvances in Management ofParkinson’s Disease,” at theEdmonton General Auditorium.

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

© PSSA welcomes new CEO, John Petryshyn.

© In July, the annual PSSA golf tournament raised over $37,000.

© In September, PSSA welcomedphysical therapist Neera Garga to its team.

© The Lethbridge, Medicine Hat,Red Deer, Cochrane/Airdrie and Calgary SuperWalks raisedapproximately $145,000.

© Aarti Shankaranarayananhe hasbeen named the recipient ofPSSA’s annual Dr. Frank RamsayGraduate Award in Neuroscience.

© PSSA has been chosen as one of the beneficiaries of the 2008Vehicles and Violins fundraisinggala by the Calgary Motor Dealer’s Association.

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

Parkinson Society Manitoba171 Donald Street, Suite 302Winnipeg, MB R3C 1M4 Ph: (204) 786-2637 Toll-Free: (866) 999-5558Fax: (204) 786-2327© The Regional Advocacy Committee

has initiated a process to define specific regional needs for peopleliving with Parkinson’s. TheCommittee has started to developthe blueprint for a provincial strategy on Parkinson’s researchand service delivery.

© The ninth annual Golf Classicraised over $69,000 with a full fieldof 144 golfers and 35 sponsors, ledby Gold Sponsor Lawton PartnersFinancial Planning Services.

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



© SuperWalk for Parkinson’s was heldin Brandon, Gimli, Morden, andWinnipeg. All events had excellentattendance and were organized byvolunteer committees.

PSC Central and Northern Ontario Region4211 Yonge Street, Suite 321Toronto, ON M2P 2A9Ph: (416) 227-1200Toll Free National: (800) 565-3000Fax: (416) 227-1520© SuperWalk for Parkinson’s was a

great success in 19 communitiesacross the region.

© CNOR has been divided into five districts. District meetingsare now being held regularlythroughout the region.

© The Toronto chapter hosted its2007 conference, “Living ReallyWell with Parkinson’s.” The conference provided a unique,non-medical approach to livingwith Parkinson’s.

© Voice for Hope, a choir for People with Parkinson’s, has been piloted in Toronto.

© Great gifts are available for sale, including Tulip Cards($12.00 for a pack of 12) andLove/Hope/Tulip Candle sets($15). Contact the regional officefor more details.

PSC Southwestern Ontario4500 Blakie Road, Unit #117London, ON N6L 1G5Ph: (519) 652-9437Toll Free Ontario: (888) 851-7376Fax: (519) 652-9267© The Ontario Trillium Foundation

has granted SouthwesternOntario Region $210,000 forCommunity DevelopmentPrograms in Waterloo RegionalMunicipality; Essex, Lambton and Kent Counties; and, Grey,Bruce, Huron and Perth Counties.A Community DevelopmentCoordinator will be hired in eachof the three communities.

© SWO has increased its capacity toeducate health care professionalswho work with people with

advanced Parkinson’s through the Parkinson education program“PEP for Community Caregivers.”Fifty presentations were bookedbetween May 2, 2007, andDecember 4, 2007, by nine com-munity health care professionals.The second Train-the-Trainerseries was held in September.

Parkinson Society Ottawa1053 Carling AvenueOttawa, ON K1Y 4E9Ph: (613) 722-9238Fax: (613) 722-3241www.parkinsons.ca© One hundred golfers raised

money to support people livingwith Parkinson’s at the SixthAnnual Dr. J. David GrimesMemorial Golf Tournament onJune 20 at the Meadows Golf and Country Club.

© A joint open house was held byThe Taoist Tai Chi Society andParkinson Society Ottawa atCarleton Place on August 25 topromote the benefits of Tai Chifor people living with Parkinson’s.

© Five-hundred-and-fifty walkersparticipated in the SuperWalk forParkinson’s, setting a new recordfor funds raised ($93,000) andnumber of SuperStar walkers (22).

© PSO volunteers raised funds andawareness in eight communitymalls across Eastern Ontario byselling tulip bulbs as part of thenational Hope in Bloom campaign.

Parkinson Society Quebec550 Sherbrooke Street WestOffice 1470, Tower WestMontreal, QC H3A 1B9Ph: (514) 861-4422Toll Free: (800) 720-1307 National francophone lineFax: (514) 861-4510www.parkinsonquebec.ca

Parkinson Society Maritime Region5991 Spring Garden Road, Suite 830Halifax, NS B3H 1Y6Ph: (902) 422-3656Toll Free (NS, NB & PEI):(800) 663-2468

Fax: (902) 422-3797www.parkinsonmaritimes.ca© Vogue Optical’s SuperWalk for

Parkinson’s raised a record$170,000, a 42% increase over 2006.

© The Region’s Fall Conference,“Fighting Back,” was held fromOctober 19 and 20 in Halifaxwith keynote speaker Dr. DavidHeydrick, creator of TheParkinson Pyramid.

© Online chat groups for youngonset and general Parkinson’shave been launched on theregion’s website.

© “POP for Parkinson’s,” an eveningof ’80s music, was held in Halifaxand featured six bands includingJuno nominees In Flight Safety.Charlottetown sponsored “TheBrown Jug Derby Raffle” in whichparticipants could win a trip fortwo to the Derby in Ohio. TheSociety was the beneficiary of proceeds from the “RCMPMusical Ride” in Fredericton,sponsored by the Y’s Men.

© 2008 is PSMR’s 25th anniversary.

Parkinson Society Newfoundland and LabradorThe Viking Building 136 Crosbie Road, Suite 305St. John’s, NL A1B 3K3Ph: (709) 754-4428Toll Free (NL): (800) 567-7020 Fax: (709) 754-5868© Dr. John Stoessl visited the

region and lectured at the Health Sciences Centre in St. John’s. The conference waswebcast across the Province.

© PSNL held six SuperWalks reach-ing its fundraising goals and gar-nering excellent media coverage.

© The region sold 23,000 tulip bulbs in September.

© PharmaChoice golf tournamentfor Parkinson’s was a great success.

© Lana Roestenberg has been hiredas the new Fund Development/Office Coordinator.

Issues of interest to people with Parkinson’s

arkinson’s is a family disease,one that takes a team of

involved and supportive loved ones to help an individual withParkinson’s thrive. In most cases,however, the bulk of responsibilitylies with one main care partner: aspouse, a child or a friend. For thisindividual, life is changed foreverwhen their loved one is diagnosedwith Parkinson’s and they musttake on many new roles. Theirs is a demanding job involving compro-mise, encouragement and strength.Their focus is on providing emo-tional and physical support to theirloved one, advocating on theirbehalf, and learning all that theycan about Parkinson’s disease.

Lessons learnedOver and over, care partners reportsimilar experiences about the challenges they face. Because of theprogressive nature of Parkinson’s, a care partner is challenged to know what degree of support theirloved one needs at any given time.It is important that a person withParkinson’s be able to speak forthemselves and to manage theirown life for as long as possible;however, the care partner is a keymember of the team. The relation-ship is sometimes described as one that begins as “care partner”and evolves into “caregiver.”

Here are a few practical steps

for care partners to follow:1. Be an active member of the team.

Attend medical appointments,and be involved in every decisionabout your loved one’s care.Research shows that people withactively involved care partnerstend to do better.

2. Ask questions until you under-stand the answer. Parkinson’s is a complex, neurodegenerativedisorder and, as such, there is alot to understand. Don’t hesitateto ask questions until you feelcomfortable that both you andyour loved one understand the answer fully. This includesinformation about medications(what it’s for, side effects, whento take, things to avoid, etc.).

3. Keep your loved one honest.People tend to leave out impor-tant pieces of information whenspeaking with their doctor ortherapist either due to embarrass-ment or because they simplythink it doesn’t matter. Care partners must encourage theirloved ones to tell their doctoreverything, including symptoms,changes in behaviour, other medications or supplements, etc.

4. Speak up for your loved one.Sometimes people withParkinson’s simply cannot com-municate for themselves, so carepartners must speak up for them.

5. Know what hospitals and/or care

facilities have expertise withParkinson’s disease. Lack of Parkinson’s education is the primary complaint thatCanadians with Parkinson’sand their care partners haveabout health care professionalscoast-to-coast. If you have theopportunity, choose a facilitythat understands how to best care for someone withParkinson’s disease.

6. Get to know the nurses. Whetherin hospital, a care facility or a movement disorder clinic, get to know the nurses that willbe caring for your loved one. Ifnecessary, explain the importance of administering medications on-time and act as a Parkinson’sresource for them. Your effortswill not only benefit your lovedone but also every other personwith Parkinson’s that the nursewill care for in the future.

7. Take the opportunity to educate.Whether in a hospital, walkingdown the street or sitting in arestaurant, chances are thatsome aspect of Parkinson’s willdraw the attention of others toyour loved one. Make the mostof the situation by explainingwhat is happening and lettingothers know how they can help.

8. Become an expert about supportsand services. Find out what

Taking action:Care partners as advocatesBy Yvon Trepanier, Chair, National Advocacy Committee

P


continued on page 20


s anyone who has experi-enced Parkinson’s first hand

will tell you, it is an incrediblejourney. For those who choose apositive approach, it can be anenriching and rewarding gift. Itdoes have ups and downs as well as plenty of frustrations along theway. It is a journey without a map.However, it can also be a journeyof understanding and many firsts.It can be a time of great bondingand a time when relationships are enriched with the realization of just how truly blessed one iswith a truly supportive spouse,family and friends.

Mary Baker, former President of the European Parkinson’s

Disease Association, noted thatParkinson’s disease (PD) is verymuch like a journey, not only forthe person with the condition butalso for the caregiver. Just as theperson with PD will travel throughmultiple stages of the disease, thosewho care for them will follow theirown Parkinson’s path, taking themthrough a variety of roles, eachwith its own challenges.

An unknown voyage“The image of the journey is, Ithink, very appropriate,” saysLucie Lachance, a Clinical NurseSpecialist in Movement Disorders at the McGill University HealthCentre. “We might know when

and where the PD experience starts for us, but we don’t knowthe route we will have to take andwho our travelling companionswill be as the disease progresses.”

“Some people are natural nurturers. Some come to the roleof caregiver with years of experi-ence. Others who are new to therole may find themselves enteringa strange new world for which theyhave had no preparation,” explainsSandie Jones, Client Services andEducation Coordinator, ParkinsonSociety Canada (PSC) Central andNorthern Ontario Region. Often,the need to step in sneaks up onpeople and they go from care part-ner to caregiver with no warning.

A

The caregiving journey:Sharing the Parkinson’s path

Lorraine Dumoulin and John Lacosteshare the care for their father, Lucien.

Caregivers have often said “Oneday my relative with Parkinson’swas managing fairly well, and the next day I suddenly needed to intervene.” It is very importantthroughout the journey for familiesto keep an open mind and be will-ing to creatively decide how best to meet the needs of the individualwith Parkinson’s as well as theneeds of the care partner/caregiveras PD progresses.

A relief and a shockA diagnosis of PD can be a reliefafter months and sometimes yearsof knowing something is not right

but not knowing specifically what. “When I finally had a diag-nosis I was relieved. At least now Iknow what we were dealing with,”say many people with Parkinson’s. “It can be both a relief and a hugeshock,” adds Jones.

Because of the nature of PD,each person’s experience is differ-ent. Understanding PD and all that may be involved is important,especially in the beginning. For the caregiver, coming to grips withthe reality of the diagnosis meansanticipating the changes and healthconcerns to come. The concept ofcaregiving may still seem distant.

“Many family members simplydon’t like the term ‘caregiver’,”notes Jones. “They feel it implieshands-on, non-personal care, like ahealth professional. ‘Care partner’is a better, more accessible term,especially at these early stages.”Jones believes that the best thingto do in the beginning is to gatherinformation and find out about the condition. Care partner DonTurner agrees, “One of the firstthings we did when Marg was diag-nosed was to head to the ParkinsonSociety Canada office to get infor-mation. It was the best thing we

Living with Parkinson’s diseaseEvery Parkinson’s experience is unique. The symptoms and progression will vary from person to person. Livingwith Parkinson’s requires an individualized approach which includes all aspects of your life (a holistic approach).

It is important for caregivers to actively participate in managing the disease. Members of your care team mightinclude some or all of the following:

Neurologist—Ideally a specialist in movement disorders who might make or confirm the diagnosis, decide ontreatment, adjust medication.

Family doctor—Ideally someone who is knowledgeable about Parkinson’s, may be able to diagnose PD, initiatetreatment, and provide ongoing care, including annual physical exams.

Parkinson’s nurse specialist—Many movement disorder specialists have a nurse who specializes inParkinson’s. The nurse can provide information on how to manage your condition.

Psychiatrist/psychologist—An expert in mental and emotional health issues such as depression or cognitiveabilities.

Physiotherapist—Makes assessments of mobility, balance and posture; offers techniques on how to move safely; recommends sports or exercise programs.

Occupational therapist—Makes assessments of living and workingenvironments to ensure safety; suggests equipment or devices that can maintain independence.

Speech-language pathologist—Helps improve voice projection or swallowing difficulties.

Dietician—Advises on how to plan a healthy diet and maintain idealweight; helps with dietary issues caused by medications.

Social worker—Advises on financial and family concerns; helps to access resources and services in your community.

Other professionals—Pharmacists can provide information on medication, drug reimbursements plans; a urologist can help with urinary problems or sexual functioning for men; a geriatrician cananswer questions related to aging.



ever did. More information aboutthe disease better enabled us tocope. It makes life much easier for both of you to get through.”

“Call it the honeymoon. Whenshe told me she had Parkinson’s, I didn’t know much about it otherthan it wasn’t fatal. I had a littlelearning to do,” says Al McKenzie,husband and care partner of Lynda.

A link to supportThe prospect of being the sole support for someone with PD canbe daunting. Caregiving is noteveryone’s forté, and it can betotally overwhelming. If so, PSCregional offices can help in findingthe right kind of help. Over 235support groups and chapters acrossthe country provide help and an opportunity to share experiences.

Over time, the role of care-giver/care partner evolves intomore decision-making and plan-ning. “It’s a new lifestyle,” saysBruce Rathbone. “When we aregoing to events, we have to makesure everything with my wife,Pamela, is working well so we are not late.”

And every day is different,according to John Martin whosewife, Mary, has good days and bad. “It’s situational and dependson the medication on any givenday. Some days they [people withParkinson’s] need a lot of help.Some days they need a lot of distance and privacy. On the days they need help, you have to anticipate it and watch for a

chance to help, then take advan-tage of it.”

Over time, the need for careincreases, sometimes gradually and sometimes quickly. The taskcan seem immense. That’s thetime to seek help. It’s also a goodidea to spend some time research-ing what community services andother resources may be available.Your regional PSC office can help.(See pages 5 and 6 for a list.)

“The care providers whoembark on the journey ofParkinson’s caregiving shouldknow that they don’t need to travel alone,” says Lachance. Sheexplains that the caregiving canand should be shared by others—from friends and family to thehealth care team. Whether itinvolves keeping a cautious eye on the time to ensure pills aretaken at regular intervals, or taking more initiative in decision-making and planning in manyareas (including finance and legal issues), the caregiver’s rolecan become all consuming.

A need for self-careAccording to a Statistics Canadasurvey, the most severe adverseeffect from providing care cited by caregivers is deterioration intheir own health.

The caregiver can end up ignoring other family members—a spouse perhaps—when lookingafter a parent or, in the case ofyoung onset Parkinson’s, a son ordaughter. There is a risk that the

role of caregiver will take over one’s identity. Caregivers need to ensure they make time for their own interests and pur-suits, as caregiving is only one role of many. Finding alternativesto being the primary caregiver is important. Respite care may be an option.

Looking after one’s self as wellas the person with Parkinson’srequires a concerted effort. “Youneed to remember to take care of yourself if you are effectivelygoing to take care of somebodyelse,” says Lachance. “Otherwise,everyone will suffer.”

Eating well, staying active, andgetting enough rest are importantstrategies for ensuring that care-givers retain their own health.Holistic therapies and exercisesuch as yoga and Tai Chi are often helpful. (See “Finding time for yourself” on page 14.)

Coping with Parkinson’s can be as challenging for the care-giver as it is for the person withParkinson’s, according to RogerBuxton, husband and care partnerof Judy Hazlett for 30 years. “You both have to cope to the best of your ability,” he says. “It’s a joint effort.”

However, as Jones points out,not everyone is cut out for caregiv-ing. “Some people are natural nurturers and move into the rolequite comfortably,” she explains.“For others, it’s simply not who or what they are. If you are one ofthese people, you have to realizethat it’s OK. You just do the bestyou can under the circumstances.Trying to be someone you are not is just going to cause stress—for everyone.”

If you are going to travel the caregiving journey, educatingyourself and having the right attitude will make things easier.

The healing power of humourWhile dealing with Parkinson’s is no laughing matter, many with PD say that humour is an essential element in navigating it. Taking alighthearted approach can help. As Judy Hazlett says, “You will live in a much more intimate way than you ever imagined. Humour is a way of getting through it.”


Listen with your heartPam Barry became involved withBeth Holloway about seven yearsago. Beth was in her 40s then, and as Pam relates, “was well intoher Parkinson’s disease.” In fact,Beth had been diagnosed withyoung onset Parkinson’s disease at the age of 33 and showed herfirst symptoms in her late 20s.

“Beth was reluctant to enter arelationship at first,” Pam recalls.“She warned me about Parkinson’sand what might lie ahead. So youcan say I went in with my eyesopen. But the bottom line is that I

was interestedin the person,not the disease.”

The firstthing Pam didwas read up onthe disease so

she could try to understand whatBeth might be going through. Therewas no master care plan developed.“Nothing was written in stone,”says Pam. “We didn’t sit down and come up with a grand strategy;we just decided to keep doing whatwe do, and make adjustments whenwe had to.”

For the first few years, Bethexperienced little change, and life carried on fairly normally.

The two stayed active, goingcamping each year, playing golf and bowling.

The last two years have seen afew changes in Beth, but nothing to really slow them down. “Bethcan still do most of the things sheused to, so we are lucky,” Pamsays. “Of course, she has her offdays—but then again, so do I.”

How does Pam handle thosedays, and the other challenges of care partnering? Basically, with a bit of common sense andwhat she calls “listening with your heart.”

“You have to maintain your own identity and independence,”she advises. “So many people get so lost in their relationships—caregiving and otherwise—that they don’t know who they are anymore. Sure, we do a lot of thingstogether, but we also do a lot ofthings separately. I have my own

interests, and you should alwaystry to find time to sit back andrelax, alone or together.

“And never be pushy,” Pamadds. “If one day your partner is ready to do anything, but thenext day they are having trouble,you need to back off. Try to hearwhat’s behind the words. And ifthey don’t want to talk, or want to be alone, give them that space.”

The final piece of advice Pamoffers is a simple one. “Never loseyour sense of humour,” she says.“We always try to find somethingfunny in everything.”

Let others helpSince his father, Lucien, was diag-nosed with Parkinson’s 10 yearsago, John Lacoste has seen the disease “slowly eat away at him.”

“In the last four years, thisonce-strong man has gone from 5’10’’ and 220 pounds to 5’ 3’’ and136 pounds,” John notes. “It’s notbeen easy for any of us. Perhaps the hardest part for me is trying

John’s story

Pam’s story

Life with Parkinson’s:Care partners share their storiesBy Ian Corks

Pam Barry (left) and Beth Hollowayenjoy playing guitar together.

John Lacoste cares for his father, Lucien.



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to always put on a happy face—to keep a positive demeanour—even though it’s really getting to you.”

John shares the caregivingresponsibilities with his motherTherese and sister Lorraine,although his mother isn’t able to do as much any more. “WhenDad and Mom are both in the best of health they can just aboutlook after each other, but whenthere is even the slightest compli-cation—like a simple cold—thingsare 30 times worse,” he relates.

So John, who lives 25 minutesaway, finds himself there three or four days a week and Lorraine,who is still working, helps out on weekends and nights. “As acaregiver you gradually take onmore responsibilities, and it can be frustrating,” he comments.

Like most people, John has his own personal issues to dealwith, in addition to looking afterhis dad. As such, he feels that heneeds to find balance in his life,and take time for himself. “Eventhough at 55 I’m pretty young todo so, I joined a senior citizens’group, and have become involvedin cooking and other things,” John says. “It gives me an outletand keeps my mind busy, for a little while.”

John offers some advice forParkinson’s caregivers. “Caregiverssometimes put their all into looking after the person, and theydon’t think anyone else can help.But you have to let people help.Health professionals, communityworkers and support groups can all make a difference. If help isoffered, take it.”

He cautions against keeping the disease a secret. “People with Parkinson’s often try to hide what they are going through,”

John explains. “Don’t be afraid to acknowledge it. Talk to friendsor family members.”

Trust in your friendsBy the time you read this story,Judith Richards will have under-gone deep brain stimulation (DBS)surgery. “It’s been three years since we made the decision, sowe’ve been waiting a long time,”says her husband Alan. “In truth, it was mainly Judith’s decision. She is an independent thinker, so when she makes up her mind, I go along with it.”

For the Richards, DBS surgerywas the logical choice, given theprogression of Judith’s condition.“Judith was diagnosed in 1991 and at first we were fortunate,” he explains. “But in the last two or three years, it has progressed.Every once in a while we discoversomething else that doesn’t quitework the same any more.”

Alan has continued to care for Judith over the years, facingsome of his own challenges along

the way. “For one thing, I miss a lot of sleep,” he says. “But thething that bothered me most wasnot being able to devote time tomy personal hobby: geneology.”

Losing that outlet put a strainon Alan’s emotional health, so he adapted. “You learn how tocope,” he notes. “I manage to keep up with my hobby via theInternet, and by having friends help out with the research. I’vealso learned to take pleasure in things Judith enjoys, like shopping trips.”

The local Parkinson’s supportgroup has also proved invaluable.“Now our personal best friends are members of that group,” Alan notes. “We’ve formed a little social clique, going to meals or the theatre together. You know they understand whatyou are going through, so you are at ease with them.”

Like many others, Alan andJudith also rely on their sense ofhumour to help cope. “We enjoywatching the Comedy Network in the evenings—at least until itgets too raunchy,” he laughs.

Alan’s story

Alan Richards supports his wife, Judith, in every way he can.


Stay physically andemotionally healthyDiagnosed in 1995, Frank Funk has coped reasonably well with his Parkinson’s. “In fact, because of the clinical trials Frank has been involved in at the RoyalUniversity Hospital in Saskatoon,his condition is, in some way, actually better than when he first was diagnosed,” notes Mary.“Although, of course, we noticesome deterioration.”

Her husband was a missionary,and the couple’s faith has been asource of strength over the years.Mary admits that there have beenand continue to be challenges alongthe way. These include taking overthe day-to-day responsibilities thatFrank used to handle and admittingthat he has changed in so many ways.

“It’s hard,” Mary says. “I stillfind it difficult to accept that I now do the caregiving when he used to be the ‘caregiver,’ so tospeak, before Parkinson’s.”

Despite her love, faith and commitment, Mary acknowledgescaregiving is challenging, and thatas a caregiver, she needs to keepherself emotionally and physically

healthy. “Take time for you,” sheadvises others. “Rest when yourloved one rests—if you can. Goshopping, even if only windowshopping. Read, if you find thatrelaxing. Go out with personalfriends at a time when it is mostconvenient to leave the personalone, or have someone stay withhim or her. Take advantage of sup-port groups to share your concerns.

“Take good care of yourselfphysically: walk, swim or join anexercise group, if possible,” sheadds. “You want to be in goodshape to provide the care yourloved one needs. And always keeplooking up!”

Make decisionstogetherIn 2003, Carmel Boosamra madethe decision that she could nolonger provide her husband, Frank,with the level of care that heneeded. Frank had been diagnosedwith Parkinson’s in 1992, a situa-tion further complicated by his diabetes and heart disease.

Over the years, Carmel haddone all that she could. Frank’s PD continued to progress, to the point he was experiencing hallucinations. “I used to tellfriends that I had no idea what to expect every time I opened the door,” she recalls.

Eventually, Carmel arranged for daily help from the local community care agency.

“This worked for two years,”

she says. “Then I realized that he couldn’t be home alone anymore. He was falling and it wasn’tsafe for him.

“Once I admitted to myself that I couldn’t carry on, it was clear to me,” Carmel continues.“Luckily, Frank was realistic and we had talked about the possibility of long-term care years earlier when he was diagnosed. But that didn’t make it any easier when I had to tell him I couldn’t look after him any more.”

When Frank had been in hospital in 1998, the couple had discussed and agreed on giving Carmel power of attorney.This decision made things a loteasier when the time came forlong-term care. “Don’t look at it like closing a door,” Carmeladds. “It’s not. You can still beinvolved, and you can still providethe care you want to.

“Many people avoid the issue of power of attorney,” she notes.“They think the person is giving upall decision making. But that’s notnecessarily true. You can still discuss

things, and the person can give verbal permission if they are able.You can still make joint decisions.”

Carmel admits that the decision was very difficult and “took a lot of fortitude.”However, she also admits thatthings are better for her, Frank and their marriage. “I’m not so angry or stressed anymore,” she says. “Our time together isquality time.”

Carmel’s story

Mary’s story

Frank and Mary Funk find that theirfaith has been a source of support over the years.

“I’m not so angry or stressed anymore... our time together is quality time.”

Carmel Boosamra


101. 4. 8.

10.

9.

7.

6.

5.

3.

2.


Be positive! Advice from thosewho have been there is not tofocus on “Why me?” or “Whyus?” but rather on “Let’s dealwith it.”Accept change. Accepting andadapting one’s life is impor-tant.Do the things you’ve alwayssaid you wanted to do.Whether it’s hiking, mountainbiking, or seeing the world,now is the time to do it.

Take time for yourself. Seefriends and continue thoseactivities you most enjoy.Encourage the person withParkinson’s to maintain his or her independence. Knowwhen not to help.Allow extra time when plan-ning an outing. It will reducestress for everyone. Live each day. Everyone’sexperience with Parkinson’s is different.

Address financial and legalissues early.Accompany the person withParkinson’s to appointments (medical, physiotherapy, etc.), and ensure all of theirquestions are answered.Learn all you can aboutParkinson’s. Visit our web site or contact yourregional Parkinson Society. A list is included on pages 5 and 6.

aregiving can be a demandingjob that involves compro-

mise, encouragement and strength.As a caregiver, you play many roles.You may be providing assistance bypreparing meals, driving to appoint-ments and helping with personalcare activities. You might also be sharing information aboutParkinson’s and working with ahealth care team; and you are alsoproviding emotional support to your partner. You will be experi-encing a variety of emotions and reactions, including frustration,guilt and fatigue.

Every caregiver needs “timeout” on a regular basis. The firststep to finding time for yourself isto recognize your own limitations.Parkinson’s is progressive, so it may

be increasingly difficult to providecare all on your own. Start by identifying your supports: friends,neighbours, family; communityresources: home care, day programs,housekeeping services; and so on.

Start with friends and family.Can a friend visit for an hour toplay a game of cards with yourspouse while you go out on yourown? Can a neighbour take yourspouse shopping so that you canhave some time to yourself in your own home? Can one of yourchildren take your spouse to theirplace for the weekend? Make a list of tasks that others can do.People want to help, but often theydon’t know how. Let them knowspecifically how they can help andinclude them in your plans.

Identify community resourcesthat may be helpful. Consider a dayprogram: your family member withParkinson’s could attend a social dayprogram one or two days a week.For a longer break, you can arrangefor temporary, short-term stay in a long-term care facility for yourfamily member. This would giveyou an extended period of respite.

For more ideas on how to take a break from care, contact yourregional Parkinson Society office.For a list of regional offices, seepages 5 and 6.

With thanks to the ParkinsonPaper, Parkinson Society Ottawa.

C

Finding time for yourself

tips for caregiversFind out more at www.parkinson.ca


n order for caregivers to takea break, they may need to

leave the person with Parkinson’shome alone. To ensure a safe environment while maintaining the person’s autonomy, here aresome questions to consider:• Can he prepare and eat a meal

without your assistance?• Does she experience choking

when eating?• Is it easy for him to use the

bathroom without your help, ordoes he require aid every time?

• Is she routinely experiencingfalls? Does your home have many hazards for falls?

• Does he routinely experience

emergencies, which might jeopardize his safety? Does he suffer from orthostatic hypo-tension, epilepsy or shortness ofbreath that may need monitoringall the time?

• Can she remember to take medi-cations as directed and on time?

• Does he appear anxious or worriedat the first sign of you leaving?

• Does her behaviour and tempera-ment change between the time you leave and the time you return?

• Is he able to call 9-1-1 or neigh-bours if an emergency occurs?

• In case of emergency, is she able to leave and seek shelter outside?

• Is he aware of smoke alarms,

which may trigger danger, or is helikely to overlook all such noises?

• Does she suffer from Alzheimer’sdisease or dementia? If so, is shelikely to leave on her own and not return safely?

• Can he distinguish friends andfamily from strangers if someonewants to come in?

Your answers to these questionswill help you decide whether toleave your loved one home alone.You may need to find help through afamily member or home care workerwho can fill in while you are out.

Adapted from PSSA’s NewsworthyNotes, issue no. 166, January 2006.

I

Home alone

Highly qualified and trained caregiversare ready to help you and your loved oneswith a variety of daily activities such as:• Caring Companionship• Meal Planning and Preparation• Incidental Transportation• Running Errands• Light Housekeeping• Medication Reminders• Assistance with Bathing and Grooming• Assistance with Bill paying• Information and Referral ServicesOur personalized and affordable services are available 7 days a weekand can range from a few hours a day to 24 hour and live in care.

[email protected] Bridgeland Ave., Unit 3 Toronto, Ontario

Senior Services

J6261 PSC CARE AD.V2 5/30/07 10:57 AM Page 1

or people with Parkinson’s,the term “support” covers

a multitude of factors, from provid-ing care and ensuring a safe envi-ronment to overcoming financialburdens. Knowing what to do, howto best be supportive and where to go for help are really important.

Parkinson Society Canada (PSC)and its regional partners are dedi-cated to providing support for people living with Parkinson’s thatgoes beyond advice and tips. Over235 support groups have emergedthroughout Canada to deal withtopics such as coping with beingnewly diagnosed to conserving

your energy to avoid burnout.

Help from othersGenerally, people attend supportgroups to obtain information, tolearn from others about copingwith a chronic illness, to interactwith people who are living withParkinson’s, and to know they are not alone. The more popularsupport groups for people with PD include the young onset supportgroup and the advanced PD groups.

Parkinson Society BritishColumbia (PSBC) offers basic support that includes being avail-able to meet with people with

Parkinson’s and care partners inperson, over the phone or by e-mail.

“We offer an information and referral service, professionalcounselling, information packages,and conferences, and provide leadership to 44 self-help supportgroups throughout BC, some ofwhich are caregiver specific. Alongwith providing information, weknow that sometimes a listeningear is most helpful, and so we fund a toll-free number where peoplecan find that listening ear withoutworrying about the cost,” saysCarmen Dyck, Director of SupportServices, PSBC.

The Victoria Epilepsy andParkinson’s Centre also incorpo-rates similar programs designatedfor the caregiver, including non-traditional programs and work-shops to offer caregivers respite and support.

“We offer regular supportgroups for people with Parkinson’s,but we also facilitate programsstrictly for the caregivers—like the stress management program,transportation coordination to pro-vide the caregiver respite, and evena program that links our supportgroup members with a massagecollege at a specially reduced rate,”says Maureen Matthew, Victoria’sParkinson Program Coordinator.

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Supportacross the regions

By Gina Collymore

People with Parkinson’s who can’tattend support groups in person canturn to the Maritimes on-line chatroom for help.



Tools for changeElse Manz is a facilitator with theSaskatchewan Parkinson DiseaseFoundation and a person livingwith Parkinson’s. “The goal behindthe regional support groups is notonly to cope with change but togive people the tools to adjust tochange. Due to the progressivenature of PD, support groups offerguidance on the different stages ofthe disease, how to manage yourlife and how to make changes toyour routine to accommodatethose changes,” says Manz.

Support for the person withParkinson’s is important, butequally important is the caregiver,who, alongside the person withParkinson’s, must adjust his or her life to accommodate the other.Gisele Marcoux, the Coordinator of Direct Services for Parkinson’sSociety of Southern Alberta, offerssupport groups to caregivers for allstages of PD. They meet separatelyfrom people with Parkinson’s, andthe meetings are facilitated by professionals. “Our support groupsfollow the journey from diagnosisto long-term care, to ease themthrough the changes that areinevitable,” says Marcoux.

Groups on the riseWith the number of people diag-nosed with PD increasing as thepopulation ages, different types ofsupport groups have emerged toaddress this change and more arebeing organized to represent theneeds and concerns of the care-giver. In the past five years, thenumber of support groups acrossCanada has grown by 15 per cent.There are online support rooms(web-based), groups for care part-ners, couples support groups, socialand exercise groups, and deep brainstimulation support groups.

In Newfoundland, Patricia

Morrissey, Executive Director ofParkinson Society Newfoundlandand Labrador, has coordinatedannual events throughout theregion to educate and support people with Parkinson’s and care-givers. Annually, at alternatingsites, she organizes the Parkinson

Community Education Program,offering seminars and groups onvarious concerns.

“We address caregivers at thisconference because their positionis so important to people withParkinson’s. A separate meetingtakes place with only caregiverswhere they have the opportunity to voice their concerns withoutworry. Some may see it as venting,but it is the caregiver’s chance to get off their chest concerns that they cannot share with theirpartner,” says Morrissey.

Online supportIn the Maritimes, Denise Hubleycoordinates all support groups and services for people withParkinson’s and their caregivers.They not only offer the traditionalsupport groups but also facilitate achat room for people who want toremain anonymous or who may bereluctant to attend a support group.

“Our online chat room isdesigned for people who are scaredto tell their family or friends theyhave the disease. They might be

intimidated by telling all to agroup of strangers. At the sametime, they still want their ques-tions answered. The popularity of the chat room is overwhelming.It attracts people from all over theworld and is available to anyonewho registers,” says Hubley.

Topics covered in the chatroom include “When should I tellmy family and friends?”, “Whenshould I retire?”, and “Now thatI’m not working, what’s next?”

Topics covered can be equallyimportant to the caregiver as to theperson with Parkinson’s. A diagno-sis of Parkinson’s is an adjustmentfor everyone. Consequently, thechat room accommodates caregiverquestions and concerns pertainingto such things as dealing withsomeone’s desire for secrecy, safe-guarding their anonymity, andmanaging the financial burdenwhen someone must leave theworkforce unexpectedly.

Care that adapts The role of the caregiver developsand changes sometimes as quicklyas the disease progresses. Becausethe nature of PD is different ineveryone and care must adapt at the same pace, support groupscan help. To find one in your community, contact your regionalParkinson Society office. (See liston pages 5 and 6.)

End-of-life and Parkinson’sParkinson Society Canada and its regional education and support services team is developing a resource for end-of-life care forParkinson’s. We need your feedback to identify the issues faced by care partners and family members. For more information, e-mail [email protected].

Because the nature of PD is different in everyone and care must adapt at

the same pace, support groups can help.

ith the help of some amaz-ing heroes, SuperWalk for

Parkinson’s has raised a record $2million. SuperWalk is ParkinsonSociety Canada’s (PSC) largestannual fundraiser and was held in more than 80 communitiesacross Canada in September.

“With an ever increasing num-ber of communities participatingacross Canada, we are confidentthat SuperWalk will continue tobreak records so we can supportpeople living with Parkinson’s and find a cure some day,” saysJoyce Gordon, President and CEOof PSC.

Enthusiastic walkersA record 12,000 walkers turned out at walk sites acrossCanada to raise funds and aware-ness for a disease that affects more than 100,000 Canadians.Many communities, includingVancouver and the Maritimes,

set new all-time records.The Vancouver walk raised

$190,000—over $45,000 more than last year. “This year’s walkwas our best ever. We worked very hard to achieve our goal, and we surpassed it by more than we could have expected,”says Parkinson Society BritishColumbia’s Executive DirectorDiane Robinson.

Dedicated volunteersThe Maritimes set a new record by bringing in $170,000, almosttriple what was raised just three years ago. “There are many reasons why we continue to breakrecords here in the Maritimes, but the most significant is the dedication of our volunteers,”states Parkinson Society Maritimes Region ExecutiveDirector, Paul McNair.

Parkinson’s is a progressiveneurological disease. When cells

in the brain that normally producea chemical called “dopamine” die,symptoms of Parkinson’s appear.The most common symptoms are tremor (shaking), slowness in movements, muscle stiffness, and problems with balance. Other symptoms that may alsooccur for some people includefatigue, difficulties with speechand writing, sleep disorders,depression and cognitive changes.

A significant eventFor over 40 years, PSC has been the national voice of peopleliving with Parkinson’s disease.PSC has over 235 chapters andsupport groups. PSC’s mission is to fund research, support services, advocacy and education.SuperWalk continues to be theorganization’s most significantfundraising event. For more infor-mation, visit www.parkinson.ca or call 1-800-565-3000.

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Parkinson’s SuperWalk raisesrecord $2 million for research


hen his grandfather was firstdiagnosed with Parkinson’s

disease, six-year-old Ryan Kay was aware of the challenges thathis grandfather faced. Ryan wasmotivated to help in any way hecould, so he made it a priority to participate in SuperWalk forParkinson’s. In 2006, Ryan held a garage sale, selling his toys and baked goods to raise money.With the help of family he raised$1,500, making him a SuperStarWalker and earning him a coveted“blue hat.”

Wanting to do betterHis family was so proud of him,because he raised that money in an unselfish manner, but Ryanwas not satisfied. He wanted to do better. Ryan’s fundraising goal for 2007 was $2,500 and theSuperStarWalker Supreme “redhat” that came with it. Ryanthought long and hard how toreach his goal, and a family friendsuggested raising money by collect-ing wine and beer bottles.

Overwhelming responseRyan went to every house on hisstreet and put a note in their mailboxes asking them to donate theirbottles. The response was over-whelming! Every Monday, Ryan,his three-year-old brother and his mother would go out with hiswagon to collect the beer bottles

from people’s door steps. Once thecollection was complete, he wouldsort the bottles, take them to the beerstore and receive cash for his efforts.

After a summer of hard workand determination, the new firstgrader raised $2,720, earning himboth the coveted red hat and therespect of his grandfather.


Ryan Kay’s little red wagon is loaded to the max as he turns bottles into cash forParkinson’s disease.

One red wagon and one goalW

kind of support is available inyour community (home care, disability, CPP, etc.) and whetheryou qualify.

9. Befriend another care partner.Having someone who under-stands your situation can beinvaluable. Over 235 support

groups operate coast-to-coast. Tofind the group best suited to you,simply contact your PSC regionaloffice. (See pages 5 and 6.)

or most people, Parkinson’sdisease is just something

they have heard about or seen onTV. My reality is different. I am one of thousands of Canadians who knew and loved someone with Parkinson’s disease.

For most of my life, my grandpafought a disease that slowly took

over his life. For fiveyears prior to hisdeath, I watchedwith great sadnessas his conditiondeteriorated. Hewent from theactive grandpa I knew and loved so muchto being unableto eat or moveor to write or

speak clearly. Yet his mindwas as sharp as ever, and he stillamazed me in a way only a grand-father could. He died in 1996 withParkinson’s disease when I was 13.

Many fond memoriesI have fond memories of him, butvery few are before this diseaseslowly stole pieces of him. One daywe were setting up his new com-puter, and everything seemed to befine except there was no sound. Aswe made every attempt to fix theproblem, my grandfather was trying

to tell me what he thought it was,but I couldn’t make out what he wastrying to say. Eventually I got himhis typewriter, and he typed: “Is itmuted?” I was so proud of him. Itwas a moment I will never forget.

When I think back to the special times I had with my grand-father, I also think about whatcould have been if he did not haveParkinson’s—the memories that we could have had; the memoriesthat were stolen from both of us.

When I was eight years old, itwas hard for me to grasp what wasgoing on. By the time I was oldenough to appreciate the man forwho he was and all he overcame,he was gone.

An idea is bornLast year I went on a 1,000 kilo-metre bike trip, cycling southernVancouver Island and the SunshineCoast. On one of the first few daysof that trip, I met a friendly womanas I was having a drink of waterwhile taking a break. She asked ifmy trip was dedicated to any cause.I replied no, but later I soon real-ized how great an idea a Parkinon’s-related trip was.

That is why I decided to embark on a 17-day journey to bike 1,700 kilometres from Reginato Vancouver—it was my personalvendetta against Parkinson’s

disease. My motivation wasmy grandfather, and my goal was to raise money and awareness for a disease that has taken so muchaway from so many.

I began my journey on August8, 2007. No one could deter mefrom my goal. I prepared myselfmentally for the obstacles that Iwould face, obstacles that includedtorrential rains and wind, extremeheat and the unavailability of a hotshower when I needed it. Somedays were tough, and I experiencednights where I really just wanted to give up. However, I drew inspira-tion from my grandfather who hadto live with his limitations 24/7,and from the well-wishers whobelieved in me and my journey.

Everyday heroesThe definition of a hero is differentfor everyone: it could be the fire-fighter who rescues the cat in thetree, the person who gives up theirseat on the bus to an elderly lady,or the seven-year-old girl who comforts her baby brother whoskinned his knee.

Many people have called me ahero and an inspiration, but I didwhat I had to for my grandfatherwho is my hero. He was a man who never let Parkinson’s controlhis life and continued to live inspite of it.

F


Taking action: Care partners as advocates continued from page 7

A hero and an inspirationBy Graham Pipher


he Stanley Cup made a brief appearance in the

greater Toronto area this summerand lent a helping hand to theDurham Region chapter ofParkinson Society Canada (PSC).

On August 14, ShawnThornton of the NHL champi-onship team, Anaheim Ducks,paraded into town with LordStanley’s cup to help raise fundsfor Parkinson’s disease. Shawn’sgrandmother, Maureen, hasParkinson’s, and his personal con-nection to the disease prompted

him to do somethingfor people like her.

Shawn hosted a special event at theWaltzing Weasel in his hometown ofOshawa, Ontario, where patrons hadtheir photo taken with the cup. All pro-ceeds went to PSC.

“My grandmotherhas PD and I wantedto do something special to bring awareness of the disease

and to raise funds for Parkinson Society Canada.With the help of theamazing staff at theWaltzing Weasel and PSC,this event was a greatsuccess,” says Shawn.

The impromptufundraising event raisedmore than $3,000,money that will helpfund vital research, education and support

for people living with Parkinson’sand their families.

Celebrity and Stanley Cup helpraise funds for PDT

Maureen Mills hoiststhe Stanley Cup over her head with the help of her grandson,Shawn Thornton.

uring the early morning ofJuly 27, before sunrise, and

before most people get their firstwhiff of brewing coffee, 19-year-oldJustin Smith set out on a 106-kilo-metre walk from Trenton, Ontario,to Kingston, Ontario, to raiseawareness for Parkinson’s disease.The motivation for his walk wassimple: two members of his familywere diagnosed with the disease.

Accompanied by two childhoodfriends, Justin set out on his jour-ney in memory of his grandmotherwho died with Parkinson’s a fewshort months ago. More recently,his aunt has been diagnosed withthe disease.

The idea for the walk beganwhile he was on a five-month high-

school exchange program in China.While there, he walked along theGreat Wall of China, and after hearing of his grandmother’s death,decided that a walk was the bestway to honour her memory whileraising the profile of Parkinson’sdisease in Canada. Through thesupport of family members andwith the help of Parkinson SocietyCanada, Smith began planning his walk when he returned toCanada in May.

“My grandmother suffered forover 10 years with Parkinson’s, andmy aunt was recently diagnosed,”says Smith. “I am walking to helpraise awareness among Canadianson just how prevalent this diseasereally is.”

Smith arrived at the Hotel DieuHospital in Kingston after 11:00p.m. and attracted the media attention of local newspapers the Trentonian and the BellevilleIntelligencer as well as local radiostation 98.3 FLY FM.

Both newspapers featured in-depth profiles of his walk, and hisgoal to educate Canadians aboutParkinson’s. Justin’s perseverancealso assisted Parkinson SocietyCanada in promoting SuperWalkduring the month of September.

With support from family and friends, Justin met his goal to increase awareness aboutParkinson’s. Asked if he would do it again, he responds withouthesitation, “In a heartbeat!”

D

Walking for a cureBy Gina Collymore


ith Parkinson’s influencingmuscle control, your

movement, speech or posture may be affected. But tremors ormovement disordersmay have othercauses (stroke, headinjury, hypoglycemia,Alzheimer’s, alcoholintoxication, etc.) and it is important foremergency respondersto know that in your case, they arecaused by Parkinson’sdisease. You may have animplanted deep brain stimulator, a pacemaker-like device to helpcontrol tremors and chronic movement disorders, or you

may be on medications known for their adverse effects and forinteracting with other drugs orwith certain foods.

If you have difficultycommunicating—yourvoice may be very soft or start off strong butfade—or have difficultypronouncing your words,being unable to quicklyand accurately conveyyour needs during anemergency can put youat unnecessary risk.

Avoid the risk, and give yourselfand your loved ones peace of mindby allowing MedicAlert to speakfor you.

MedicAlert identification

immediately gives paramedics and other health professionals critical information about yourmedical condition, medicationsand implants. A quick glance at the MedicAlert identificationand a call to the MedicAlert 24-hour Emergency Hotline fordetailed medical information saves time for confirming diagnosis and determining emergency treatment, thus giving a clear voice to anyone who is medically at risk.

For more information or to become a member, contactMedicAlert. Phone 1-866-679-2709 (Monday-Saturday, 9:00 a.m. to 5:00 p.m. EST) or visitwww.medicalert.ca.

W

Visit us on-line: www.parkinson.caOur website is being updated regularly! Please watch for more changes in the months ahead.

n The PSC website has been averaging 37,423 unique visits since its official launch in April 2007.

n Click on the Legacy Fund to find out how you can donate to PSC in honour of a loved one.

n Visit Parkinson’s in the News for the latest stories and issues on Parkinson’s disease.

n Learn what’s happening in your region under the In Your Community banner to find out aboutevents and updates.

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

MedicAlertspeaks for you

in an

emergency

MedicAlert identification immediately

gives paramedics and other health

professionals critical information

about your medical condition.


From Speech-language PathologistBonnie Bereskin, MEd, SLP • One of the most common areas

needing support is voice. Manypeople with Parkinson’s disease(PD) have an excessively quietvoice that becomes quieter overtime. Another common difficultyis in controlling the rate of speak-ing. Some people with PD speakexcessively fast.

• Have the person assessed by aspeech-language pathologist experienced with Parkinson’s.

• Set aside time (about four timesper week) to practise the voiceand speech exercises. These canbe done during TV commercialsor while preparing dinner.

• Use positive cues that are shortand simple, such as “Speaklouder.” Have a few periods dur-ing the day when the expectationis to speak loudly and clearly.

From Clinical Pharmacist Chee Ying Chiu, BSc Pharm, RPH• Learn all you can about

Parkinson’s and about the medica-tions the person is taking. Whywas the person prescribed a particular medication? How doesit affect the Parkinson’s symp-tom? What are the side effects? In Ontario, if the person is takingmore than three medications, you and the person are eligible tohave an appointment with yourpharmacist for a free counsellingsession to learn about his or her medication regimen.

• Ensure the person takes medica-tion on time by following a sched-ule. Consider using a “reminder”such as a beeper.

• Organize the medications in a

weekly or daily pill box.• Watch for side effects such as

hallucination, dizziness, frequentfalls, etc. Make note of these sideeffects so you can discuss themwith the doctor or pharmacist.

• Watch for symptoms of depres-sion, which can often be treated.

• Always keep an updated medica-tion card in the person’s wallet.The card should list all medica-tions (with timing), any allergiesand family doctor’s phone number.See the PSC Medication Card atwww.parkinson.ca.

From Physiotherapist Caroline El-Tantawy, pht• Once the person with Parkinson’s

has been evaluated, the physio-therapist may ask the caregiver tohelp. Both the client and theircaregiver are taught how to per-form all the activities indicated,in a safe and appropriate manner.

• If exercises are needed, the care-giver can help the person withParkinson’s with an individualizedhome program of exercises.

• If there are problems with mobility, the caregiver may beasked to help the person withsuch activities as

• getting in and out of bed, acar or a chair

• walking or climbing stairs• No matter which activity the

caregiver is helping with, itshould be done in a safe manner.

From Occupational Therapist Robert Campos, erg• Occupational therapists (OTs) can

evaluate how well the personwith Parkinson’s can manageactivities of daily living such as

banking, finances, cooking, driving, and the medicationschedule. Each individual will bedifferent and should be assessedby an OT.

• Caregivers can learn about adap-tive equipment to make hygiene,dressing and grooming easier.They can also learn what toolsand equipment may help withactivities such as cleaning, mealpreparation and driving.

• Ask for fall prevention guidelines.

• Help with exercises to strengthenfine motor movements and tomaintain or improve hand function and flexibility.

• Learn how to safely assist withbed mobility, transfers, dressing,exercises.

From Social Worker Joan Buhr,BSW, RSW• Continue to communicate your

thoughts, feelings and needs tothe person with Parkinson’s.

• Allow the person living withParkinson’s disease to do whatthey can for him or herself.

• Continue to be a spouse—continue to pursue the sharedinterests and activities with theperson with Parkinson’s.

• Encourage the person withParkinson’s to continue withfriendships and participation inhobbies and activities.

• Talk to the person about his orher caregiving needs and, whenpossible, talk about sharing theresponsibilities with other family members, friends and professionals.

• Ask for help sooner, rather than later.

Care partners often feel a responsibility to assist in maintaining the person’s independence. We asked several healthcare professionals to provide helpful hints for the care partner.

fall/winter 2007 volume 7 i fall/winter 2007 issue 3 $5fall/winter 2007 nvolume 7n issue 3 $5.75...

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