SUMMER New Hope to Genetics, Stem Cell British Columbia 2017 Halt Compulsive Environment and Research and Can Do Better Gambling Parkinson’S Disease Parkinson’S

VIEW OINTS

Pledge Form Enclosed

A quarterly newsletter for the Parkinson’s Community of British Columbia

3 4 7 8 SUMMER New Hope to Genetics, Stem Cell British Columbia 2017 Halt Compulsive Environment and Research and can do Better Gambling Parkinson’s disease Parkinson’s

V6C 1J9 are not necessarily those Viewpoints Campbell River, Chilliwack, Chinese Campbell River, Speaking (Burnaby), Courtenay/Comox Cranbrook, Duncan/Cowichan Valley, (formerly Sparwood), Elk Valley Valley, Kamloops, Kelowna, St. John, Fort Lake East Caregivers, Kootenay Kelowna Langley YOPD, Langley, Shore, Ladner, Maple Ridge/Pitt Meadows, Lion’s Bay, Maple Ridge Caregivers, Mission, & 2Nanaimo, Nelson, New Diagnosis 1 North New Westminster, (Vancouver), Shore Caregivers, Osoyoos/Oliver, Parksville/Qualicum Parksville/Qualicum, Powell Alberni, Port Penticton, Caregivers, George, Quadra Island, Prince River, Quesnel, Richmond, Richmond Shuswap/Salmon Arm, Carepartner, South Sunshine Coast (Sechelt), Terrace, Cities Cities, Tri Tri Trail/Castlegar, Vancouver Caregivers, Tsawwassen, Caregivers, Arbutus, Vancouver Downtown Working Vancouver Side, West Professionals, Vancouver Online White Rock, YOPD Vernon, Support Groups 100 Mile House, Abbotsford, Burnaby,

11880 1240 RR0001 are for information only. PSBC guarantee nor does not are for information only. www.parkinson.bc.ca Parkinson Society British Columbia exists Society British Columbia Parkinson ·

bers, donors Viewpoints

as a beneficiary —$25 annual fee

PSBC would not exist without the patients should consult their physicians. Planned Giving and Bequests Consider in your Will Editorial Statement The views and opinions expressed within the pages of Society British Columbia. The intention is to provide the reader with a wide range of Parkinson The Society British Columbia welcomes submissions for the newsletter. of material. Parkinson editor reserves the right to edit material and to withhold material from publication. Articles contained in medical treatment or therapy, In matters of endorse any product or claim made by an author. The following are the many ways you can support your society: Membership Monthly or Quarterly Donation United Way Remember PSBC when giving through United Way Special Events participation in our special Your events makes a difference Charitable Registration Number support is Your essential! PSBC generosity of its mem and volunteers since it receives no government support. OUR MISSION consequences of the personal and social to address scientific outreach, education, through disease Parkinson’s and public awareness. research, advocacy BC Street, Suite 600, Vancouver, Pender 890 West 1327 604 687 1 800 668 3330 · Fax Free 3240 · Toll 604 662 Tel [email protected]

Staff Chair Treasurer Secretary Directors Past Chair (part-time) BETTY HUM RAV KAMBO RAV Coordinator JEAN BLAKE ARIANE GRILL ARIANE VAL SWANNELL VAL STACEY DAWES STACEY ALICIA WROBEL CATHERINE HSU HSU CATHERINE BOBTHOMPSON JENNIFER FLYNN JENNIFER FLYNN DAVE RICKARDS DAVE Medical Advisor (maternity leave) Member at Large COLIN MACBEATH SUSAN ATKINSON SUSAN ATKINSON RICHARD MAYEDE JAMES PATTERSON COURTNEY HANNA · & Events Manager MARTIN MCKEOWN MARTIN MCKEOWN Registered Clinical CAROLINE WIGGINS AMANDA MCCULLEY MIRELA DZAFEROVIC ANDREW DAVENPORT ANDREW DAVENPORT ELISABETH SADOWSKI Volunteer Coordinator Volunteer Counsellor (part-time) Executive Committee Chief Executive Officer Engagement Specialist Major Gifts & Individual MYRIAME LÉPINE LYONS Marketing & Community MICHELLE BOURBONNAIS Coordinator & Counsellor Resource Development & Donor & Member Services Giving Development Officer Coordinator/Office Manager Events Assistant (Seasonal) Marketing, Communications Education & Support Services SUMMER 2017 Resource Development Officer CEC PRIMEAUCEC Education and Support Services SHERRI ZELAZNY · SHERRI British Columbia British Information & Programs Manager Information & Programs Manager Parkinson Society Parkinson

VIEWPOINTS 2

research

New Hope to Halt RESEARCH GRANT Compulsive Gambling

For people with Parkinson’s disease, it’s usually a New hope to halt tremendous relief to find a drug to treat the tremors, compulsive gambling stiffness or the freezing that causes some of them to halt in place. RESEARCH PROFILE PILOT PROJECT GRANT But for a significant minority of people – Dr. Catharine Winstanley Parkinson Society up to 20 percent – the class of drugs that British Columbia is often most effective in controlling these INSTITUTE Pilot Project Grant of University of British $45,000 over one year* motor symptoms comes with a devastating Columbia side effect. These synthetic dopamine drugs, called dopamine agonists, can introduce risky worrying for the patients,” she says. People with behaviour, including compulsive gambling that Parkinson’s could take both the synthetic dopamine may cause people to drain their life-savings or agonists and the additional medication, relieving ruin their relationships. their motor symptoms without jeopardizing their supportive relationships and livelihood. At the University of British Columbia, behavioural neuroscientist, Catharine Winstanley, uses animal Currently, the impulse control issues are “the worst models to investigate the link between a protein outcome for someone who is trying to develop a new called GSK3beta and the impulse control problems medical treatment,” says Winstanley, an associate some people develop when taking these drugs. The professor at UBC. “The drug they’ve developed risky behaviours often make both doctors and people turns out to cause something worse than the with Parkinson’s reluctant to turn to dopamine disease they were trying to treat.” The heart-rending agonists for treatment. Although GSK3beta is effects of compulsive gambling and other impulsive associated with several psychiatric disorders, so far behaviours compelled Winstanley to tackle this researchers don’t know its precise role in causing research project, she says. She empathizes with them. What they do know is that certain other drugs, people with Parkinson’s, whose hopes are raised including lithium and new lithium derivatives, seem by the prospect of taking the dopamine agonist to block GSK3beta, preventing the development of medication, only to have those hopes dashed when impulse control problems. the risky behaviours emerge.

Winstanley and her colleagues are testing these “You don’t have to look very far before you drugs, which have already been demonstrated to find a friend or a relative who is dealing with be safe. They’re hoping that giving one of these the fallout from Parkinson’s disease,” says drugs to people already taking dopamine agonists Winstanley. “I just want to do the little bit I can will prevent them from developing these impulsive to make that better. This is the area where I behaviours. If Winstanley is successful, “it would think my own research can make a difference.” make the experience of being treated with these compounds (dopamine agonists) a lot safer and less VIEWPOINTS

*Awarded through Parkinson Canada’s National Research Program parkinson.bc.ca 3 ask an expert

What are gene-environment Genetics, Environment interactions, and how have they been and Parkinson’s disease underexplored in Parkinson’s disease (PD) related research so far? with DR. BEATE RITZ Gene-environment interactions (GxE) are the Dr. Beate Ritz received her processes by which an individual person’s genetic MD and a PhD in Medical make-up interacts with agents in the environment. Sociology from the University These agents can include food and medications, of Hamburg Germany in 1983 mould, pesticides and air pollution, just to name a few. and 1987; she was a research Even the smallest differences in genetic factors can fellow and resident at the change how an individual reacts to the environment Psychiatric University-Hospital around them. Almost all diseases are the result of in Hamburg from 1987-1989, GxE interactions. and received doctoral training and a PhD degree in Gene-environment interactions can be challenging to Epidemiology in 1995 from the University of study since researchers need to both measure California at Los Angeles (UCLA). Upon graduation, environment exposures reliably as well as determine she joined the faculty of the School of Public the appropriate genes to examine. For example, one Health at UCLA and is currently Professor and of the studies I was involved with determined that an Vice-Chair of the Epidemiology Department. increase in PD risk is associated with variations in the Dr. Ritz is also a member of the Center for paraoxonase 1 – an enzyme also known as PON1 that Occupational and Environmental Health (COEH), breaks down pesticides that enter the human body – the Southern California Environmental Health and dopamine transporter genes. Science Center (SCEHSC) and co-directs the National Institute of Environmental Health Sciences- Can you tell us a bit about your funded UCLA Center for Gene-Environment Studies research interests and how they of Parkinson’s disease. She was one of the plenary pertain to PD? speakers at Parkinson Society British Columbia’s My research focuses on the effects of both most recent provincial conference, Moving occupational and environmental toxins. Toxins such Forward, Together, on June 3, 2017. as pesticides and air pollution can impact neurodegenerative diseases and cancers. One of our major studies that garnered interest in Canada and the United States was a large-scale project in rural areas of Southern California. We used detailed information collected by a large group of patients with Parkinson’s in California’s Central Valley. I worked

VIEWPOINTS with a team of researchers to evaluate both genetic and environmental risk factors and how they interact in PD. This study established that the combination of

continued on next page…

4 SUMMER 2017 risk ofdeveloping PDmorethanlife-long physical competitive sportsinyouth seemstolowerthe interesting wasthefinding thatparticipationin of developingParkinson’s disease.Particularly physical activityinyouth areatthelowestrisk individuals whoengageinmoderatetovigorous In 2016,Ico-authoredastudythatconcluded proven tohaveneurotoxiceffects. as someherbicidesandfungicides,havebeen people andanimals,thereforeinsecticides,aswell insecticides don’tdistinguishbetweeninsects, insects bytargetingtheirnervoussystem.However, other. Insecticidesarespecificallydesigned to kill pesticides mayworkincombinationwitheach The shortanswerissome,butnotall.Different exposure andgeneticvulnerability. number of other projects that evaluate pesticide investigations have providedafoundation for a natural defensestodisease.Theresultsofthese is verylikelythesepesticidesworktolowerpeoples’ exposed tothesechemicalsatall.Ibelievethatit to developParkinson’s thanthosewhowerenot (a fungicide) at work were three times as likely who wereexposedtoparaquat,manebandziram risk ofdevelopingthedisease.Furthermore, people by 75%. The earlier the exposure, the greater the increase theriskofdevelopingParkinson’s disease the fungicide maneb and the herbicide paraquat can and lifestyleinParkinson’s? research thatfocusesonoccupations Can youbrieflyexplainsomeofyour Are allpesticidesneurotoxic?

exercise orgeneticsisastrongerprotectivefactor. nurture. Rightnow, evidenceisinconclusivewhether already. It becomes a question of nature versus be markersforpre-existingfactorsthatlowerrisk participating insportsandphysicalactivitycould activity. Thatbeingsaid,itcouldbepossiblethat progression. and eventually identifyfactorsthat affect its provide abetterunderstanding ofthedisease document differentaspectsofPD.Thiswill a largegroupofcommunity-based patientsto quality oflife.Now, wearecontinuingtofollow provide sufficient reflections of health-related motor –aregrosslyinadequateand do not of Parkinson’s disease–bothmotor andnon- current methodofclassifyingthesymptoms Parkinson’s, myteamhasconcluded thatour progresses. Byanalyzingclinicalsymptomsof improve ourunderstandingofhowthedisease Only long-termstudiesofhumanswithPDcan Currently, therearetoofewofthem. to beanintegralpartofsuchresearchefforts. community studiesthatfocusonPDpatientsneed treatment and potentially find acure. However, way tobetterunderstandtheconditionimprove cross-disciplinary approach is the most appropriate strong believer that approaching its study from a Parkinson’s disease isincrediblycomplex.I’ma What else would you like our readers What elsewouldyoulikeourreaders work? work? to knowaboutthedirectionofyour continued on next page… parkinson.bc.ca

5 VIEWPOINTS GENETICS, ENVIRONMENT AND PARKINSON’S DISEASE WITH DR. BEATE RITZ continued from page 5

As a researcher who has worked with subjects who have been exposed to environmental risks, are you optimistic about policy changes that may protect communities from environmental toxins, or are current policies still worrisome for you? I wish I could be more optimistic, but agricultural and chemical industries are very resistant to making changes. The current political climate in the US is certainly not in favour of expanding Environmental Protection Agency type regulatory efforts to reduce human pesticide exposures. I hope this trend will What drew you to study the health change as more scientific evidence of the harm done effects of occupational and to human life accumulates. environmental toxins on chronic diseases? Is there anything you would like to The ubiquitous exposure to neurotoxins add about genetics, environment delivered via a variety of means, such as air, and Parkinson’s? soil, water contamination as well as pesticides, One myth that we should debunk is that ‘natural’ is unprecedented in human history. Similarly, means harmless or non-toxic. The natural pesticide the large aging population is much more called rotenone – derived from an African tree root vulnerable to these toxicants and will likely – has been used in organic farming because it is have to live with a diminished quality of life considered natural. It is, however, a strong toxicant for many years. This is a looming public health that causes PD like symptoms in animals and has crisis we need to address, now. been shown to also be involved in the development of Parkinson’s in humans.

Do you have Through a partnership with PSBC, the law firm of Blake, Cassels & Graydon LLP Parkinson’s offers free of charge legal services to people with Parkinson’s in British Columbia. related legal The Litigation Support Program from Blakes addresses legal issues such as discrimination issues? against individuals with Parkinson’s in the workplace; discrimination in accommodations, services or facilities that are generally available to the public; and, wrongful denial of disability insurance or denial of government services. If you have a legal problem relating to Parkinson’s disease, please contact Jean Blake, CEO at [email protected] for more information. VIEWPOINTS

6 SUMMER 2017 respect he has been heavily involved in gene and respect hehasbeenheavilyinvolvedingeneand which totakenewtherapiesintotheclinic.Inthis (HD). Thishashelpedhimdefinethebestwayby Parkinson’s disease(PD)andHuntington’s central nervoussystem(CNS)–namely two commonneurodegenerativedisordersofthe seeks tobetterdefinetheclinicalheterogeneityof For thelast25yearshehasrunresearchthat Institute inCambridge. Investigator intheMRC-Wellcome Trust StemCell with and Parkinson’s Stem CellResearch rise toallthe differentcellswehavein ourbody. are foundinthenewlyfertilized eggandwhichgive One exampleisembryonic stemcells(ESCs)which divide andalsogiverise to differentiatedcelltypes. Stem cellsarethat have boththecapacityto to takestemcellstrialinthesedisorders. and aglobalinitiative(GFORCE-PD)thatisseeking part ofanewEUproject(NeuroStemCellRepair) (MRC) fundedtrialusingsimilartissueinHD.Heis PD, followinganearlierMedicalResearchCouncil program usinghumanfetaltissueforpatientswith and currentlyco-ordinatesanEUfundedtransplant cell basedtrialsforpatientswiththeseconditions DR.ROGERBARKER stem cells? First ofall,whatare ask an expert Lund, Sweden and a Principal Lund, SwedenandaPrincipal professor attheUniversityof Cambridge. Heisaguest Addenbrooke’s Hospital Consultant Neurologistatthe University ofCambridgeand of ClinicalNeuroscienceatthe Roger Barker

is the Professor istheProfessor own dopaminesystem continues todegenerate. these drugsbecomeless effectiveasthepatient’s agonists suchasropinirole/pramipexole). Overtime, that stimulatesdopaminereceptors(dopamine (L-dopa intheformofsinemetormadopar),one come intwoforms:onethatreplacesdopamine work wellintheearlystagesofdisease.They Drugs thatoperatethroughthedopaminesystem aspects ofthediseaseprocess. on thesecellstoseeifwecanslowdownoralter also opensupthepossibilityoftestingdifferentdrugs the diseaseinthatparticulartypeofpatient.This try to understand what goes wrong in these cells in and thenturningthemintodopaminenervecellsto (so-called induced pluripotentstem cells –iPSCs) (ii) wehavebeenmakingpatient-derivedstemcells process. This is mainly done using ESCs. Alternatively, into thebraintorepairthisaspectofdisease dopamine cellslostinPDwhichwecangraftback dopamine celltransplants. subtype –includingwithnewtherapiessuchas this mayhappenandhow we can best treateach we thinkexist.From therewetrytounderstandwhy the differenttypesofParkinson’s disease(PD)that The mainaimofmyresearchgroupistobetterdefine (i) as a source of cells which we can then turn into (i) asasourceofcellswhichwecanthenturninto We usestemcellsintwomainwaysourresearch:

effective over time? effective overtime? levodopa) fail,orbecomeless Why dodopaminergicdrugs(suchas to useembryonicstemcells? degeneration, whyisitnecessary In yourresearchintoneuro currently apartof? Parkinson’s researchyouare What istheprincipleaimof continued on page 10… parkinson.bc.ca -

7 VIEWPOINTS

advocacy

British Columbia can do better. Together, we can improve patient outcomes.

Learning you or a loved one has Parkinson’s disease We invite you, the Parkinson’s community, to can be devastating news. Although it is a complex join us in our advocacy campaign for: disorder with its exact cause unknown, it is one of the 1 most treatable neurological conditions. Most people Developing a B.C. Parkinson’s disease are able to control their symptoms for many years by strategy working with physicians and their healthcare team to Engaging health system planners, clinical experts find the right therapies. and the experience of people living with PD to develop an evidenced-based strategy to improve People with advanced Parkinson’s disease and better coordinate the services provided to may become frail, and combinations of PD patients around B.C. medications need to be delivered in the right dosage at the right time to maintain 2 Adding specialized staff to existing PD independence and quality of life. The contrast programs between optimal versus ineffective therapy Adding physicians and allied health professionals may be the difference between independent to allow additional assessment capacity at PD- living and a hospital or nursing home. specific treatment programs in the province. Patients can face an 18-24 month wait to see Key to effective treatment is early diagnosis. a specialist, during which their disease will There is no single test for Parkinson’s and many continue to progress. other conditions may mimic the disease, so a comprehensive exam by a neurologist with additional 3 Funding PD-specific training for allied experience in Parkinson’s is required. Unfortunately, health professionals patients in British Columbia can face long waits For example, people living with PD regularly of up to 24 months, which often means delayed use physiotherapy services to maintain treatment and unnecessary disease progression. mobility, but very few of the province’s 3,500 Once diagnosed, patients often find that health physiotherapists have training related to PD professionals such as nurses and physiotherapists and movement disorders. PSBC has partnered lack knowledge of Parkinson’s and best practices. with UBC’s Continuing Medical Education to This means patients can receive improper treatment develop a proposed program that would train in emergency rooms, hospitals and care homes. physiotherapists in Parkinson’s disease.

For these reasons and more, Parkinson Society 4 Expanding the Deep Brain Stimulation British Columbia (PSBC) has developed a Four Point program Plan to better coordinate and increase access to Like DUODOPA®, this is an option for a small critical supports and better care.

VIEWPOINTS number of patients with advanced Parkinson’s Parkinson’s already costs the B.C. health system disease. The surgery has enabled people to live about $112 million annually, and we believe we independently in their own homes for many more can help reduce further impact by making strategic continued on next page… investments we estimate will cost $2 million a year.

8 SUMMER 2017 impact onthehealthcaresystem. for aslongpossibleandreducetheiroverall can help those with PD lead independent lives By takingactioninthesefourareas,theprovince I BC PharmaCare excludeditscoverage–until BC and fundedinanumber ofotherprovinces, While thedrugwasapproved byHealthCanada options. health andofferingmoreflexibleemployment responsibilities intherole,improvingtheirown can providerelieftocaregiversbyreducingtheir long termcareorhospitalization.Furthermore, it disabling symptoms forcing an individual into older person,lifeathomecontinuesinsteadof or theopportunitytogobackwork.For an person, itmeansgreateremploymentoptions independently intheirownhomes.For ayoung The therapyenablespeopletocontinuelive through anintestinalpump. drug combination delivered in the form of a gel medications. Itisalevodopaandcarbidopa well controlledwithavailablecombinationsof and disablingmotorsymptomsthatcannotbe advanced Parkinson’s diseasewhohavesevere DUODOPA funding ofDUODOPA to accessitgivencurrentfundinglimits. this treatment,butpatientscanwaitmanyyears years thantheywouldbeabletowithoutreceiving (PSBC) beganrampingupitscampaignforthe (PSBC) n 2016,Parkinson SocietyBritishColumbia ® isusedtotreatpatientswith Your voice helpedmake thedifference. ® A victory fortheParkinson’sA victory community! through BC Pharmacare. throughBC 604-662-3240 or1-800-668-3330 [email protected] Parkinson SocietyBritishColumbia Jean Blake,ChiefExecutiveOfficer advocacy network,pleasecontact: advocacy visit our website at: implementation ofourFour Point Plan,please DUODOPA with themedia.” videos and agreedspokespersons toas act of thosewhoparticipatedinouradvocacy like tothankthetirelesseffortsandcourage to government officials.Above all, we would MLAs, signed our petition and wrote letters brought theissuetoattentionoftheir “We BC. wouldliketothankthosewho says JeanBlake,CEOofParkinson Society British Columbia,” Parkinson’s communityof “This isanenormousvictoryforthe Parkinson’s, incoordination withPSBC. the advocacyeffortsofBritishColumbianswith of thetherapy. Thisvictorywaslargelydueto to identifyandprioritizepatientsforcoverage the Pacific Parkinson’s ResearchCentre(PPRC) of Healthannouncedthatitwouldworkwith February 14,2017.Atthistime,theMinistry

If youareinterestedinjoiningourprovincial If you would like to read more about

® and theadvocacyeffortsfor

www.parkinson.bc.ca/

parkinson.bc.ca

9 VIEWPOINTS STEM CELL RESEARCH AND PARKINSON’S continued from page 7

In addition, the drugs stimulate the remaining There are a number of studies dopamine system in an abnormal non-physiological currently under way at The Barker Lab. way (as they are simply taken orally one or more Are there any that are particularly times a day) which leads to the development of promising at this point in time? side effects, most notably drug induced movements called dyskinesias. These drugs can also produce Our most promising work at the moment in behavioural and psychiatric problems which in part PD is on translating cell based therapies to relate to the fact that they stimulate areas of the the clinic. We are three quarters of the way brain where dopamine normally works. Thus cell through a fetal dopamine cell transplant trial based transplants have the advantage that they and would hope to go to a first in human ESC could be used for the local delivery of dopamine, derived dopamine cell trial in 2019. In addition, released in a normal physiological way at the site it we have identified that inflammation may be is needed, which may avoid some of these long term a driver of disease progression in PD, which complications with the current oral agents we use to may allow us to study anti-inflammatory drugs treat this condition in the clinic. as a way to slow down the disease process.

How long do you estimate it will take Is there anything else you would like for stem cell treatment for PD to to add for our readers and members enter the mainstream course of in Canada? treatment? I think the ability to do research across international It is estimated that stem cell derived dopamine borders is now very exciting and is speeding up transplants from centres of expertise in this area will progress in our understanding and thus treatment of come to the clinic in about 2019. If they work in PD. We, for example, work with the team of Francesca these early trials then it will probably be another Cicchetti at Laval University in Quebec City on blood 5–10 years before they could enter mainstream use markers in PD as well as possible new therapeutic depending on how well they work and ultimately agents. Thus, supporting research in one country what they cost! has an international impact, and it is important for people and patients to understand the difference What are some additional barriers they make when they help support research in any that exist for stem cell research and capacity. treatment? The main barriers are: (i) the necessary regulation and testing that is required to make sure the cells are safe – and this takes some time to complete; (ii) the use of stem cells in unlicensed ways in clinics around the world which may derail the work of the whole field (so-called stem cell tourism);

VIEWPOINTS (iii) the ethical concerns and debates about which stem cells are the best to use – and this varies from country to country.

10 SUMMER 2017 learning a new sport can improve brain plasticity – this learning anewsportcanimprovebrainplasticity–this components of incorporatingproblemsolving or activity and strength training is ideal. The additional progresses. Acombinationofstretching,aerobic of lifeandhelpreducetherateatwhichdisease 2.5 hours ofexerciseeachweekcanimprove quality Parkinson Foundation (NPF), it was discovered that disease. InalongtermstudyconductedbyNational tools formanagingthesymptomsofParkinson’s Exercise hasbeenprovenasoneofthemosteffective for Parkinson’s Champions Break aSweat British Columbia (PSBC) hasa scholarship program British Columbia (PSBC) case ofRock SteadyBoxing,Parkinson Society programs forlocalexercise professionals.Inthe Columbia toleadDance for PD arranged tohaveexpertsvisitBritish Society BC that youmaywishtoconsider trying.Parkinson specifically forpeoplewithParkinson’s disease(PD), a numberofprogramsandtechniquesdeveloped If you’relookingforwaystostayactive,thereare and freezing(NationalParkinson Foundation, 2017). posture andbalancewhilereducinganxiety, depression connections. Exercise can also improve memory, neural pathwaysaswelltheestablishmentofnew brain plasticity is the brain’s maintenance of existing Steady Boxingcanbebeneficial.Explainedsimply, specific exerciseprogramssuchasPWR!andRock is partofthereason why participatinginParkinson’s living well

® andPWR!training

Dance forPD training andqualificationsofexerciseinstructors. starting anewprogramaswellinquiringintothe importance ofconsultingwithaphysicianbefore emphasizesthe may choosetotakepartin,PSBC of whattypeexercisepeoplewithParkinson’s 13,000 BritishColumbianslivingwithPD.Regardless medicine” toalargerproportionofapproximately of thisisinanefforttobetterprovide“exerciseas costs ofattendingtraining in theUnited States. All in communities lacking Parkinson’s services with the to assist a select number of exercise professionals specifically targetfourskills thathavebeenshownto attention to action in multiple postures. These performed withlargeamplitude, higheffortand The programisbasedon 4PWR! incorporates research-basedexerciseprogramming. disease. PWR!Was developedbyDr. BeckyFarley and Wellness Recovery)exerciseclassesforParkinson’s media, youmayhaveheardaboutPWR!(Parkinson emails or follow us on social If you subscribe to PSBC PWR! at Vancouver and West Vancouver. You can learn more DanceforPD 2017). InBC, communities across16countries(DanceforPD Dance for PD PSBC, an internationalnetworkofpartners,including themselves (Westheimer et.al.,2015).Through to socializewithothers,stickaroutineandenjoy indicate thattheprogramallowsforanopportunity of somemotorsymptomsovertime.Participants benefit Parkinson’s patients by mitigatingthedecline Brooklyn Parkinson Group.Ithasbeenprovento between theMarkMorrisDanceGroupand carepartners. Itwaslaunchedasacollaboration classes forpeoplewithParkinson’s disease and Dance forPD

https://www.parkinson.bc.ca/exercise ® isanacclaimed program ofdance ® ® classes are offered in 120 ® iscurrentlyofferedin continued on page 12… Moves parkinson.bc.ca whichare . moves ® , 11 VIEWPOINTS CHAMPIONS BREAK A SWEAT FOR PARKINSON’S continued from page 11

interfere with mobility in people with PD. They can Rock Steady Boxing be incorporated and progressed into any exercise Recently, there has been a surge of interest in program by a PWR! trained professional. community boxing programs specifically intended for In 2015, PSBC partnered with PWR! to provide people with Parkinson’s disease. Rock Steady Boxing training to qualified physiotherapists and fitness (RSB), is a non-profit boxing program that began in instructors in British Columbia. More information Indianapolis. It is a contact free, boxing-inspired about PWR! is available at http://www.pwr4life.org. fitness routine that helps people with Parkinson’s To browse a listing of PWR! exercise programs for manage their symptoms (Rock Steady Boxing, people with Parkinson’s in BC, visit https://www. 2017). At this time, there are five RSB-affiliated parkinson.bc.ca/exercise. instructors and fitness facilities in British Columbia: Vancouver, Surrey, Parksville, New Westminster and Step by Step Richmond. To learn more, visit www.parkinson. Walking is one of the simplest, most bc.ca/rocksteadyboxing. underrated forms of physical fitness. According to Statistics Canada, only 35% Champions for Parkinson’s of adults hit the recommended target of A number of individuals and groups have tapped 10,000 daily steps. The likelihood of an into the benefits and enjoyment of exercise for individual reaching this targets decreases their independent fundraising initiatives through with age (Colley et. al., 2009). For anyone Champions for Parkinson’s. These events can take looking to improve their overall health, walking can on any form and scale the organizers wish while be a good starting point. This is why, beginning in raising much-needed funds for Parkinson Society April 2015, PSBC began an annual program working BC (PSBC) services, programs, advocacy initiatives with volunteers in various communities across BC and contributions to research. In the past, British to deliver Step by Step, a 12 week walking program Columbians have done everything from donating that aims to help individuals with Parkinson’s to birthday gifts to coordinating concerts for 300-plus increase their number of daily steps. This program people. This year, a number of events combine the only officially runs once per year, but the hope is that benefits of exercise with the power of fundraising. it will help people either begin a walking program or increase their level as well as connecting socially Shifting Gears for PD with a group once a week. Information, including a useful program booklet, is available year-round at Following a cycling trip across Canada in 2013, Paul www.parkinson.bc.ca/stepbystep. Gully and Lois Leslie continued their circumnavigation

PSBC is grateful to members, Champions for Parkinson’s volunteers, event organizers and Mirela Dzaferovic exercise professionals who come [email protected] together for the sake of improving Exercise Programs the quality of lives for people Caroline Wiggins with Parkinson’s. If you would [email protected] like to learn more about exercise programs or Champions for Telephone inquiries can be VIEWPOINTS Parkinson’s events, we encourage directed to staff by calling you to consult with the appropriate 1-800-668-3330 or PSBC staff contacts. 604-662-3240

12 SUMMER 2017 Pedalers, 2011). that benefitParkinson’s-related programs(TheParky’s he hascompletedanumber ofoutdooradventures was diagnosedwithParkinson’s disease.Sincethen, to SanFrancisco,Victoria, BC California.In2007, Alf whole life,includingcycling withhissonin1987from Victoria residentAlfTodd hasbeenanavidcyclisthis Shakin’ theRockforParkinson’s theirblog is onlineat or adonationtoPSBC, If youwouldliketosendwordsofencouragement public transportationuntiltheycanbothcycleagain. trip, theyplanoncontinuingtheirtravelbyfootor precious”. Whenthecoupleareabletoresumetheir that wehaveonceagainbeenremindedissovitally chasing theperfectespressoandenjoyinglife a chance to see, raising awareness of Parkinson’s, the world,exploringthosecountrieswe’veneverhad look forwardtosooncontinuingtheirtripand“circling has beencutshortforthetimebeing,Paul and Lois is expectedtomakeafullrecovery. Whiletheirjourney great carehereceivedatalocaltraumacentre,Paul was hitbyacarfrombehind.Thanksinparttothe afternoon ontheItalianMediterraneancoast,Paul halt. In early May, whilecyclingupahillon sunny and Lois’tripcametoanunfortunateunexpected After cyclingthroughPortugal, SpainandFrance, Paul and musclemaintenance. consistently worksonfallprevention,voiceprojection programstocounteracttheseeffects.She of PSBC and issueswithbalance,shemakesuseofanumber While sheexperiencestremor, dyskinesia,fatigue ago, MargwasdiagnosedwithParkinson’s disease. and haveremainedlife-longfriends.Twenty-five years Marg deGrace.Loisandmetinhighschool of $50,000fortheSocietyinhonortheirfriend, Parkinson’s disease,buttheyalsowanttoraiseatotal to thebenefitsofexerciseforthoselivingwith Zealand. Notonlydotheywanttodrawattention end in Auckland, New and wasscheduledto in Lisbon,Portugal for ajourneythatbegan spring astheydeparted of theglobeearlierthis

http://cycling.loisandpaul.com/ .

in thousands of dollars for PSBC programsand in thousandsofdollarsforPSBC frisbee tournament.Eachyear, thiseventbrings in SurreyorganizePullforParkinson’s, anultimate for Parkinson’s! Everyyear, highschoolstudents Anyone canparticipateorplanactivefundraisers Pull forParkinson’s To learnmoreabouttheirrideanddonate,visit: funds formuch-neededservicesandprogram. committed tohelpingbuildawarenessandraising event havebeenpersonallyaffectedbyPD,andare support groupsalongtheway. Allparticipantsinthis Victoria whilemeetingwithanumberofParkinson’s from themostnortherncityofVancouver Islandto team knownasTheParky’s Pedalers, planonriding From June 11–16, with a team of 20, his cycling JNT%20FINAL.pdf com/u/62847270/Website/Dance%20for%20PD%20 1270. Retrievedfrom Neurology andPreclinicalNeurological Studies. quality oflifeamongpersons with Parkinson’s disease(PD). preliminary investigationofeffects onmotorfunctionand Westheimer et. al. (2015,April3).DanceforPD:a about/?ref=page_internal facebook.com/pg/The-Parkys-Pedalers-218447824845255/ The Parky’s Pedalers. (2011).About. www.rocksteadyboxing.org/about/ Rock SteadyBoxing.(ND). Everything-You-Need-to-Know-About-Exercise-and-Parkinsons http://www.parkinson.org/find-help/blogs/tips-for-daily-living/ to knowaboutexerciseandParkinson’s. National Parkinson Foundation. (2017). loisandpaul.com/2017/05/13/may-10-2017-day-38/ 631 –41kms.Siteofcollision. Leslie, L.(2017,May13). from Dance forPD article/11396-eng.htm from Health MeasuresSurvey. Accelerometer resultsfromthe2007to2009Canadian Colley, R.et.al.(2015).PhysicalactivityofCanadianadults: www.kintera.org/faf/home/default.asp?ievent=1173121 Parkinson’s withTheParky’sPedalers Champions forParkinsons. (2017). Sources fun forlocalteens. services, inadditiontoprovidingadayofwholesome

www.shakintherock.org http://danceforparkinsons.org/ http://www.statcan.gc.ca/pub/82-003-x/2011001/ ® . (2017). . https://dl.dropboxusercontent. . About DanceforPD Statistics Canada . San Remo to Via Aurelia km San RemotoViaAureliakm About. . Retrievedfrom . Retrievedfrom . Shakin’ the Rock for Shakin’ theRockfor . Retrievedfrom Facebook. Everything you need Everything youneed parkinson.bc.ca . Retrieved . Retrieved Retrieved from Retrievedfrom ® . Retrieved . Retrieved http://cycling. 122:1263-

https://www. https:// . http:// . .

13 VIEWPOINTS

newsworthy

Champions for Parkinson’s – Fundraising Events

KELOWNA HEALTH FAIR The Kelowna Health Fair brought together 100 people and 11 exhibitors to raise a total of $925 for PSBC’s programs and services.

WHOLEY FIT SPIN CLASS On World Parkinson’s Day, April 11, 2017, Wholey Fit ran a 75-minute long Cycle, Core & More class in support of Parkinson Society BC. The class pushed participants to meet their fitness and fundraising BEER AND CHOCOLATE goals, and raised an impressive $725! The 4th annual Chocolate and Beer Tasting brought together delicious flavours and taste aficionados for SPRING ONLINE AUCTION a good cause on Sunday, March 5 at the Clough From April 11 – May 2, individuals bid on scrumptious Club in Vancouver. Guests enjoyed some of the best restaurant gift cards, cultural experiences, vacation craft beer BC has to offer alongside artisan, getaways, and items specifically geared to helping handmade chocolates. Over $2,675 was raised in people with Parkinson’s in a spring online auction support of Parkinson Society BC! coordinated by PSBC. PSBC would like to thank all the generous donors and bidders for their support. Thanks PULL FOR PARKINSON’S to you, we raised more than $2,539! Thank you to everyone who came together for the Pull For Parkinson’s – Charity Ultimate Tournament! This Ultimate Frisbee tournament for high school students took place in Surrey on April 28 and raised $3,100 for PSBC.

EDUCATION AND SUPPORT SERVICES EVENTS

COMMUNICATION AND SWALLOW WORKSHOP – COURTENAY/COMOX SEPTEMBER Date: Saturday, September 23, 2017 Time: 10:00am – 2:30pm 23 Place: Crown Isle Resort & Golf Community | 399 Clubhouse Drive, Courtenay, BC Cost: $40.00 Member / $70.00 Member (Pair) VIEWPOINTS $50.00 Non-Member / $90.00 Non-Member (Pair) Further information and registration for our Education Events can be found on our website at www.parkinson.bc.ca/education-events

14 SUMMER 2017 SUPERWALK LOCATIONS INBC can registeronlineoronwalkdayusingtheenclosedpledgeform. hope toBritishColumbiansaffectedbyParkinson’s disease.You Heroes comeinallforms–registertodaytobringextraordinary Join usfor ParkinsonSuperWalk! under licensefrom Parkinson Canada. Parkinson SuperWalk inBritishColumbiaisoperated byParkinson SocietyBritishColumbia • • • • • • • • Saturday, September 9 PITT MEADOWS/MAPLEPITT 100 MILEHOUSE community centre) (12027 HarrisRoad,behind Spirit Square,PittMeadows RIDGE (193 BeachsideDrive) Parksville CommunityPark PARKSVILLE (1200 Water Street) Plaza Waterfront Park /Concession KELOWNA (100 LorneStreet) Riverside Park /RotaryBandshell KAMLOOPS (101 4thAvenue,Sparwood) Senior DropInCentre ELK VALLEY/SPARWOOD (4530 SpadinaAvenue) Landing SportsCentre CHILLIWACK (4585 AlbertStreet) Confederation Park /Track BURNABY (Cedar AvenueEntrance) Centennial Park Everyday Heroes.ExtraordinaryHope. www.superwalkbc.kintera.org

OEL RIVER POWELL • OLIVER • CHASE • Sunday, September 10 VICTORIA • RICHMOND • • VERNON • VANCOUVER • SURREY • (6359 ParkDrive) Oliver CommunityCentre Chase MemorialPark Road) (1070 Tillicum Esquimalt GorgePark (7191 GranvilleAvenue) Minoru Park /Running Track (Use 17thAvenueEntrance) Lheidli T’ennehMemorialPark PRINCE GEORGE (2600 Highway6) Polson Park Playground Stanley Park atCeperley (13570 88thAve) Pavilion Bear CreekPark /BearCreek Avenue) (4500 Timberlane Timberlane Park Track

SPONSORED BY HT ROCK WHITE • GINGOLX • TBD CRANBROOK • Saturday, September 23 TERRACE • ARM SALMON • • Saturday, September 16 FORT ST. JAMES Location TBD (2700 CollegeWay) College oftheRockies/Track (Millenium Trail) Grand Trunk Pathway (599 10thStreetNorthEast) McGuire LakePark (284 KwahRoadWest) Nak’azdli HealthCentre Location TBD

parkinson.bc.ca

15 VIEWPOINTS ABOVE AND BEYOND AWARDS

On Saturday, June 3, Parkinson Society British Columbia recognized the outstanding contributions of thirty-three people with Parkinson’s and carepartners within British Columbia. These individuals have been nominated by their peers for their courage in the face of adversity and commitment to celebrating each day with joy, compassion and understanding. Despite the challenges faced, they continue to live rich, full lives by creating new opportunities for themselves and others.

In light of the nominations, we wish to extend special recognition to: Our deepest gratitude to all other nominees: Edith Elliott Alana Appel Carolyn & Harold Krahn long-time facilitator of the Maple Ridge Ralph Ayers Barry & Joan Mansfield Pitt Meadows support group and Parkinson Elaine Barnes George Mauch SuperWalk walk coordinator Georgina Beddome Richard Mayede Wayne & Elaine Benning Chris & Harold Olsen Anne Langdon Frank & Linda Bruder Rendy Olthuis exercise enthusiast, awareness builder Ronald Corbett Gary Schroeder and co-facilitator of the Diane Daignault Alf Todd Comox/Courtney support group Linda Dawson Renice Townsend Pat Mauch Elizabeth Holroyd Hilary Vanderliek carepartner, community educator and Alan Jacques Todd Wallace active co-facilitator of the Vancouver Jan Koeman Patricia & Brian Wood West Side support group

If you have questions about volunteering with PSBC, we encourage you to visit www.parkinson.bc.ca/how-to-help/volunteer

If you would like to connect with a PSBC staff member about volunteering, please reach out to Mirela Dzaferovic, Resource Development & Volunteer Coordinator [email protected] | 604-662-3240 or 1-800-668-3330.

600—890 West Pender Street Vancouver, BC V6C 1J9 2327775