contactvepc.bc.ca/public/transmittereblastspring2016.compressedv2.pdf · calm and relaxation in our...

April is Parkinson’s Awareness Month

Contact202-1640 Oak Bay AvenueVictoria, BC V8R 1B2Phone: 250-475-6677Fax: 250-475-6619Email: [email protected]

Inside...Message from the Coordinator 2

Vol. 39, Spring 16

Programs , Events and Info 3 - 8

Supporters and For Your Info 13-14

Message from the Executive 15Director

Care Partners Corner 9

Community Events 10 - 12

The Transmitter, Volume 39, Spring 2016

April is Parkinson’s awareness month. So, what’s that really all about? It’s about taking time to honor all those affected by this condition, celebrating the courage of those who inspire us all and appreciating the growing body of research that is leading in the direction of better treatments and ultimately cause and cure. It takes a village as they say and a big part of that village is the support network of family and friends and care providers who give of themselves to enrich the lives of those with Parkinson’s.

I have been blessed with over 25 years of learning together with all of you about Parkinson’s. One fellow I’ve known since coming to the agency is a powerful teacher in my life. He is one of the many Parkinson’s heroes that I am proud to know. He has times of courage and determination and other times of great frustration with a body not responding to his command. Acquiring Parkinson’s in his early 20’s and now in his late 40’s, he cycles through times of incredible frustration and limitation. But then, we talk and he shows me his immense sense of humor and his powerful spirit and determination. His face lights up as his spirit forgets his body issues and he is free for a while. He is a powerful reminder that mindfulness in the moment can set us free from thoughts that reflect negativity and limitation to thoughts that send us to a place of joy and possibilities. It’s an exciting time in research and for those of you who want an enriching fall trip to Portland, Oregon, you can participate in an inspirational World Parkinson’s Congress. I had the pleasure of participating in the last one three years ago in Montreal. World renowned experts came together with clinicians, care providers, people with Parkinson’s and family to discuss cutting edge developments and creative new ways of meeting the challenges of Parkinson’s. You will come away with renewed hope and optimism. Registration details for the September 20 to 23, 2016 WPC is available at www.wpc2016.org Hugs, Maureen


Generating Calm – Exploring Relaxation Techniques by Ocean Lum

Date : Tuesday, May 31, 2016 Time : 1:30 - 3:45pm

Ocean is a meditation teacher, yoga instructor & clinical counsellor. Ocean is one of a team of local BCalm practitioners that physicians can refer to for those struggling with chronic stress, anxiety or depression. Mindfulness is one of many approaches we can use to become more present and witness mental chatter without feeling controlled by it. Aside from traditional perceptions of seated meditation,

there are countless simple effective relaxation techniques that we can use anytime we wish to induce calm and relaxation in our minds and bodies. Come and enjoy a relaxing session of sampling varied

calming techniques and learn about local resources that are readily available to us all.

Victoria Parkinson’s Wellness WorkshopsGroup sessions are facilitated by Maureen Matthew, Parkinson’s Program Coordinator. All meetings now require PRE-REGISTRATION by contacting Maureen at 250-475-6677 or [email protected]

Location: The Salvation Army Citadel 4030 Douglas St (North of McKenzie). Cost: Suggested donation is $10 each to cover expenses or at your discretion.


Managing Cognitive Changes in Parkinson’sThank you to Kaitlyn Roland, PhD for creating this summary article. Dr. Roland has had over 15 years

experience presenting on Parkinson’s Cognition, Caregiver Self Care, and Yogadopa for Parkinson’s. She conducts cognitive research at the UVic Centre on Aging.

While tremor, gait and balance are often assessed, the effects of Parkinson’s on cognitive function may be less discussed. For some, these changes can become more evident, or worsen, as the condition progresses.

What is “cognition”? Cognition is our ability to discover and understand the world around us. It includes: attention, perception, memory, emotion, imagination, beliefs, intelligence, judgment, evaluation, reasoning, problem solving, decision-making, and communication. When someone is diagnosed with a “dementia”, it means there is a long-term and serious decline in these cognitive abilities. Dementia can include a range of symptoms and diagnoses, such as Alzheimer’s disease, vascular dementia, fronto-temporal dementia, dementia with Lewy Bodies, and Parkinson’s dementia. Parkinson’s dementia is diagnosed when slowly progressive cognitive impairment begins to significantly impact day-to-day functioning at least one year after motor symptom onset. For many, symptoms of cognitive decline are present in Parkinson’s without being severe enough to warrant a dementia diagnosis. Please speak to your neurologist or physician if you have developed cognitive problems, as there are many potentially treatable factors including anxiety or depression, side effects of meds, nutritional & thyroid deficiencies, strokes, etc.

What are some of the symptoms? Those with Parkinson’s with the symptom of slowness will be slower to think, remember and respond in conversation. This may be related to changes in executive function, which is like the “conductor of the brain’s orchestra”. Executive function helps you plan and sequence information, problem solve and multi-task. Cognitive changes in Parkinson’s may also make it difficult to pay attention and may show up as drowsiness, staring into space, long naps or disorganized speech. People with Parkinson’s may have trouble processing visual information, which can make it difficult to navigate routes or judge distances. Language deficits include finding the right word, following complex sentences and communicating with good volume and clarity.

Other symptoms can include altered judgment, difficulty making decisions, and perception/behaviour changes. It is worth noting that mood changes may often accompany cognitive changes and can include depression, anxiety, aggression, distress, poor self-esteem, apathy and fatigue. Sleep disturbances can also be associated and disruptive.

What are some tips for coping?

Ensure your physician is kept informed of any cognitive concerns

• Establisharegularscheduleandkeepitvisiblyposted• Useremindersandwriteto-doactionlistswithdetailedstep-by-stepinstructions• Reduceclutteranddistractions(visualandauditory)tomakeiteasiertofocus• Keepitemsinthesameplaceandlabeldrawers/cabinets• Getsufficientphysicalexercise


Managing Cognitive Changes in Parkinson’s continued

•Incorporatebraingames,ormentalexercises,includingcounting,math,crosswords,puzzles,cardgames, reading, learning a new activity or skill•Socialinteractionsareanimportantpieceofmentalstimulation•Haveone-on-oneconversationsandreducedistractions•Speakslowlyandcarefullywhilemakingeyecontact•Communicateduring“On”periodsandavoidperiodsofsleepinessoranxiety•Askforlotsoftimetorespondoracuetohelpfindtherightword•Focusononequestionatatimeandencourageclosedquestions(“doyouwantsouporasandwich?”)oryes/noquestions(“doyouwantcoffee?”)•Repeatimportantinformation•Takeadeepbreathbeforespeakingtoenhancevoicevolume•UsegesturesasaParkinson’smaskedfacemayinhibitfacialexpressions

[Editor’s note: The HeadWay Victoria Epilepsy & Parkinson’s Centre welcomes anyone to call for assistance in managing cognitive concerns which can significantly impact lives of those with Parkinson’s and family members as well.] (Aarsland et al., 2007; Docherty & Burn, 2010; Dubois et al., 2007; Emre et al., 2007; Emre, Ford, Bilgiç, & Uç, 2014; Litvan et al., 2012; Pagano et al., 2015)

In an atmosphere of experimentation and fun, people can reduce stress and improve flexibility and balance. Motion Ways is a custom created exercise class incorporating music and dance, tailored for those individuals with neurological conditions such as Parkinson’s, epilepsy, peripheral neuropathy, multiple sclerosis or an acquired brain injury. Enrich your well-being; join Lindsay Beal as she leads you in a relaxing self paced, creative session, where the benefits will keep you coming back to this weekly class. So dance yourself to better balance, improved posture and overall function.

How to Register?2nd Session: Mondays, April 4 - June 6, 2016, Cost : 9/$77

Registration Pin Required: 744404Drop-in Fee: $9 plus tax Time: 11:15am-12:15pm

Location:GordonHeadRecreationCentre,4100LambrickWay


Growinginterestintheuseofcannabistomanagehealthconditions,includingParkinson’s,hasgeneratedmany research and clinical questions that will take time to resolve. Bottom line: Limited data to date is mixed and the jury is still out. The following is from the Michael J Fox Foundation’s Fox Feed Blog Ask the MD: Medical Marijuana and Parkinson’s, Posted by Rachel Dolhun, MD, February 01, 2016. We have edited content to exclude American legislation.

https://www.michaeljfox.org/foundation/news-detail.php?ask-the-md-medical-marijuana-and-parkinson-disease&et_cid=485982&et_rid=97915483&et_lid=Read+More+-+Lead+story

Research on Cannabinoids and Parkinson’s to Date Is Inconclusive

Pre-clinicalresearch(includingworksupportedbyMJFFin2007and2012)hasconcentratedonlearningabout the structure and function of the endocannabinoid system, while determining if cannabinoids could help in Parkinson’s. Early data suggests that cannabinoids have antioxidant, anti-inflammatory and other properties that could be neuroprotective.

Pre-clinical studies evaluating symptomatic effects have produced varied results. Clinical studies have demonstrated similarly inconsistent outcomes. Several cannabinoid trials have reported benefit on Parkinson’s motor and non-motor symptoms including pain, sleep dysfunction, rapid eye movement sleepbehaviordisorderandpsychosis.(Ofcourse,numerousanecdotalaccountsexistofmarijuanaaidingwiththeseandavarietyofothersymptomsaswell.)Complicatingmatters,fourcontrolledclinicaltrialsconcluded that cannabinoids did not lessen motor symptoms but had mixed results regarding levodopa-induced dyskinesia.

Medical Marijuana Has Potential Risks

In considering whether cannabinoids are a suitable therapy for Parkinson’s symptoms, the potential benefitsmustbeweighedagainstthepossiblesideeffects.Usedinmoderation,cannabinoidsappeartoberelatively well tolerated. Even so, a review of clinical trials involving cannabinoids showed that nearly seven percent of participants discontinued them due to issues such as nausea, dizziness, weakness, mood and behavioralchanges,hallucinationsandimpairmentofcognitive(memory/thinking)abilities.Ofparticularconcern are potential influences on cognition, motivation and balance — Parkinson’s impacts these areas in many people and it’s unclear to what degree marijuana could exacerbate this. Furthermore, the risk of prescription drug interactions with medical marijuana is not known. No definite interactions have been found, but people with Parkinson’s can be on complex medication regimens and caution always should be exercised when adding to them.

Potential harm of long-term use has not yet been established. Outside of clinical trials though, chronic use of marijuana has been correlated with an increased risk of mood disorders and lung cancer.Concerns about addiction and abuse are frequently raised, but these are controversial and focus mostly on marijuana acting as a “gateway” drug.

Is Cannabis Potentially Beneficial or Harmful in Managing Parkinson’s ?


Further Research on Cannabinoids and Parkinson’s Is Necessary.

Review of the research to date on cannabinoids and PD stresses the need for additional work at both the pre-clinical and clinical levels. The goals include gaining a better understanding of the endocannabinoid system, clarifying conflictingdata(specificallythemixedresults regarding motor symptoms and levodopa-induced dyskinesia), anddetermining the tolerability, safety and efficacy of cannabinoids on individual motor and non-motor symptoms in Parkinson’s. The only route to solid clinical data is through well-designed trials that include larger numbers of people with Parkinson’s, make use of formal objective outcomes measures (i.e., tools other than patient surveyswhere able) and employ standardizedcannabinoid formulations to allow better comparison of results across trials.

Editor’s notes from Maureen Matthew:1. The following is a Canadian source of quality information http://nationalaccesscannabis.com. You can

visit them online, which lists their Canadian locations including Victoria.2. It will be interesting to follow the research into the potential risks and benefits of specific components

within cannabis (eg, THC, CBD, etc) and the potential to isolate the benefits with effect, predictability and safety.

Continued from page 6...


GroupsessionsarefacilitatedbyLindsayBeal,Parkinson’sOutreachCoordinator.Allmeetingsaredrop-in and if you would like to be on the reminder email or phone list, contact Lindsay: [email protected] or 250-475-6677. Suggested donation to cover expenses is $5 each or at your discretion.

SidneyPDGroupWestShorePDGroupSaanich Peninsula Presbyterian Church Alexander Mackie

9296 East Saanich Rd 753 Station Ave Meets 1st Tuesday of every month Meets 3rd Tuesday of every month

(Sept-June)(Sept-June)

Occupational Therapists are on the Care Team with Martina ForsterMartinaForster,BScKin,MOTiscurrentlyatTallTreeIntegratedHealthCentre.Shehasdoneadditional training for treatment of neurological conditions and has a passion for fitness and yoga. Sidney: April 5, 2016 Open Discussion: Parkinson’s Awareness Month and Personal DisclosureIf I’m working to raise awareness about Parkinson’s, how much am I sharing about myself? Is it important for my friends to know that I have Parkinson’s? How does sharing this information help my friends, or me, or will the information interfere with our friendship? Let’s discuss the process of choosing to share or to protect privacy. West Shore: April 19, 2016

Nutrition and the Parkinson’s Brain with Anna PattenNeuroplasticity refers to our brains ability to change throughout our life span. Change for better or worse, depends upon how we live. We are learning more and more about living well with Parkinson’s, and there is evidence that we all can make positive changes, whether big or small. Join Anna as she shares ways to support brain health through nutrition, so we can optimize our potential for positive change.

Dr.AnnaPatten,PhD(Neuroscience).ManageroftheCentreforInterprofessionalClinicalSimulationLearning(CICSL)attheRoyal Jubilee Hospital.

Sidney: May 3, 2016 West Shore: May 17, 2016

Season’s End PotluckBring your favorite nutritious finger food to share. Note thedifferenttimeforSidneyGroup.Sidney: June 7, 2016 12:00 – 2:00 West Shore: June 21, 2016


Care Partners’ Corner

Family Cargivers’ Network(FCN), a Valuable Resource

We are truly grateful to family volunteers who have set up peer support groups locally. It can be magical what happens whenever people with a common experience come together to share and learn from one another. There are 2 local peer support groups for family members of those with Parkinson’s. Whether you consider yourself to be a caregiver, a care partner or a family member, we know that Parkinson’s can impact on the lives of loved ones as well. We also know that 24/7 responsibilities can put family at risk of burnout. Much has been written about the need for self care among all family who live with Parkinson’s. This is easier said than done, especially for natural caregivers who tend to focus on the needs of others before their own. Please contact Maureen Matthew at the agency 250-475-6677 or [email protected] if you would like to be referred to either of the following groups:

Parkinson’s Care Partner Fellow Group meets on the third Friday afternoon of the month in Victoria. This long standing group is a cherished source of support by many. Much appreciation goes to the dedicated caring volunteer facilitator and group founder, Monica Shepherd.

New Parky Partners Group meets on the last Wednesday afternoon of the month in Langford. Thanks to Barbara Warnock and Bev Patterson for launching this brand new group in the Westshore.

Community Health Program – Island Health Region

The Community Health Program provides a variety of clinical staff and supportive services to enable individuals with health-related problems to remain independent in their own homes. Individuals living athomeonVancouverIsland,theGulfIslands,andothercommunitiesinBC,aswellashospitalizedindividuals outside the South Island area, who require health care services in their home, are initially assessed by a Registered Nurse from the Central Intake program. Anyone in the community can refer to CentralIntakebycallingtheGeneralInquiriesLineat(250)388-2273,1-888-533-2273.IndividualsinSouth Vancouver Island hospitals who require continuation of health care services in their home upon discharge are assessed at the bedside by a Home and Community Care Hospital Case Manager. Hospital clinical staff will refer individuals to the Case Manager. Potential services include: home support bathing and dressing as well as respite care, adult day programs and care facility services.

Note: A reminder that The Family Caregivers’ Network in Victoria is a wealth of quality information & support including quality online and by phone programming. Please call 250-384-0408 or visit their website at www.familycaregiversbc.ca


Parkinson Society of BC (PSBC) in Vancouver

April 30’16: In partnership with PSBC, the Davis Phinney Foundation is hosting a Victory Summit in Vancouver. This free one day event features Parkinson’s education sessions on exercise, cognition, mood, medication management and other excellent content. It will be held on Saturday, April 30 at the Sheraton VancouverAirportHotelinRichmond.Spaceislimited.Youcanregisterbycalling1(866)358-0285oronline at www.davisphinneyfoundation.org/vs-vancouver

June 10’16 from 2-3:30pm at Salvation Army Citadel, 4030 Douglas Street (N of Mackenzie) Wearepleased to advise that PSBC is bringing Dr Eric Ahlskog to Victoria for a talk called The Nuts and Bolts Approach to the Treatment of Parkinson’s Disease. Dr Ahlskog, MD, PhD is one of the leading authorities on Parkinson’s with 30 years experience treating people with PD. He is Professor of Neurology at the Mayo Clinic Medical School and Chair of the Mayo Section of Movement Disorders in Rochester, Minnesota. ). You can register by calling 1-800-668-3330 or by visitingwww.parkinson.bc.ca

4th World Parkinson Congress Join us in Portland, Oregon for the 4th World Parkinson Congress More than 3,500 people from 65 countries will attend the WPC 2016 in Portland, OR to learn about cutting edge science, clinical research and comprehensive care from some of the most renowned health professionals, researchers, and advocates globally. Registration is open NOW! www.wpc2016.org

Yakimovich Seniors Wellness Centre

An Advance Care Planning workshop will be held on Saturday April 16’16 from 10am-noon at the Yakimovich Seniors Wellness Centre 1454 Hillside Ave. Dawn Dompierre RN expert on the topic will be presenting. Advance Care Planning lets you have a say in the health care you will receive if you are unable to speak for yourself. Discussing and documenting your wishes with your loved ones and health care providers means they will be better able to speak on your behalf when needed. Topics included are: representation agreements, advance directives and appointing substitute decision makers. To register phone 250-370-5641 local 2 or visit www.viha.ca/hshc/events

Community Events

http://www.wpc2016.org/?page=RegFees


Community Events

2016 Charity Golf ClassicRegistration is OPEN!

To register online : www.headwayvictoriagolf.comFridayJune17thatOlympicViewGolfCourse

Interested in Volunteering for the tourney?Contact Paula at : [email protected]

www.headwayvictoriagolf.com


Community EventsApril is Parkinson’s Awareness Month

Advertising GuidelinesAcceptance of advertising does not constitute an endorsement by the Victoria Epilepsy & Parkinson’s Centre of the products or services listed.Distribution: Victoria & Vancouver Island Seasonal Issues: Fall, Winter, Spring/Summer

For ad rates, format, deadlines and payment options please contact the office at 250 475-6677 or email : [email protected] Any payments are made payable to: Victoria Epilepsy and Parkinson’s Centre.

HEIRLOOM LINENS


Newsletter Support provided by:

http://www.vandekerkhovefamilyfoundation.org/

http://uwgv.ca/

http://www.viha.ca/

http://www.headwayvictoriagolf.com/

https://peninsulaco-op.com/

http://www.pac.bluecross.ca/


West Coast College of Massage Therapy Parkinson’s Student Inreach Massage ProgramTheWCCMT is located at #100 – 818 Broughton Street. They train massage therapists to treat the general public with different pathologies as part of their practicum training required to complete the program. The WCCMT continues to offer student massage services to those with Parkinson’s who have been referred by our agency. Parkinson’s Inreach program student massage is available for $12/hr. To be eligible, you must present a letter from HeadWay Victoria Epilepsy & Parkinson’s Centre and have your physician’s signature supporting the referral. This program runs for one half day weekly ongoing and times may change over time. Please contact Maureen Matthew if you wish to have a referral and further details.

HealthLinkBCDid you know that you have FREE access to nursing and dietician support as well as after-hours pharmacist information? Right at your fingertips! Call 8-1-1 from anywhere in British Columbia to speak with a nurse any time of the day or night. On weekdays, you can speak to a dietitian about nutrition and healthy eating. At night, they have pharmacists available to answer your medication questions. More information can be found at www.healthlinkbc.ca

For Your Information

The Shoppers DrugMart Optimum Points Donation Program

How to donate your Shoppers Optimum points to Victoria Epilepsy and Parkinson’s Centre. To donate your Shoppers Optimum Points, please visit: www1.shoppersdrugmart.ca/en/optimum-new/donate-transferOr for more information please visit our website or call 250 475-6677

ParkinGo Wellness Society

ParkinGo is a local independent non profit society focused on exercise programs for people withParkinson’s. This network has been created by and for people with Parkinson’s which has a great deal of volunteerism feeding its success. As of April 1, they have stopped all classes at St Nicholas and have movedthemtoiHealthattheRoyalOakshoppingcentre.MondayclassesatGreengladehavemovedalso.Thenew locationwill allowParkinGo tooffermoreclassesata central location.TheyarealsoaddingchairclassesatGreenglade.Formoreinformation,visitwww.parkingo.org for up to date changes in scheduling.

www1.shoppersdrugmart.ca/en/optimum-new/donate-transfer


From the Executive Director

Volunteers - We could not do what we do without YOU!

April 10th – 16th is Volunteer Appreciation Week and on behalf of HeadWay Victoria Epilepsy & Parkinson’s Centre SocietyIwanttosayTHANKYOU!Itisawellknownfactthatvolunteersperformasignificantroleinfulfillingthemission,goals,andWORKinacommunitycharityorganizationlikeHeadWay.

Have a look at the volunteer action here:Board of Directors and Committees of the Board - 11 volunteers for monthly board meetings, committee meetings and additional decision making and fundraisingEpilepsy Advisory Committee – 5 volunteers for quarterly meetings and program decision makingParkinson’s Advisory Committee - 6 volunteers for quarterly meetings and program decision makingCentre day-to-day operations – 5 volunteers for weekly reception & telephone; office tasks; 1 volunteer for library administration; 3 volunteers for specific organizational tasksPeer Support Group facilitation – 8 volunteers for monthly support group meetingsExercise Group – 18 volunteers for weekly sessionsProfessional Support Group facilitation & counselling – 2 volunteers for client servicesExhibits & Displays & Presentations – 3 volunteers for making sure information is passed along either in a talk or at a display boothHeadWay Charity Golf – 7 committee volunteers for monthly meetings and work in-between and on the day; 25 volunteers on the day of the tournamentHeadWay Health Fair – 5 committee volunteers for monthly meetings and on the day; 22 volunteers on the day of the Health FairMarch Epilepsy Awareness Month – 12 volunteers spreading the word with posters and displays and special activities, such as the Joy & Hope Art Show, and the purple pansy promotionApril Parkinson’s Awareness Month – 4 volunteers for awareness activities such as tulip sales promotionThird Party Fundraising – 6 volunteers for activities such as bicycling sponsorships; hiking sponsorships; BBQs & bottle drives

The total is over 140 volunteers within 12 months! And we all know there are more people that simply continue to do many things for us that I have not formally listed. What a compliment to our staff of 6! As the executive director of the Centre, I recognize that the responsibilities of leadership and stewardship are lightened and enjoyed when someone ‘just wants to be involved and offer their hands, head and heart toward sustaining the goals and mission of the Society and recognizing that support is important for all of us affected by epilepsy, seizure disorders, and Parkinson’s.

Thank you volunteers for your interest & effort.

Sincerely,

BarbGilmore

Executive director

“The Transmitter”Published seasonallyEditor: Shannon OatwayCanadian Mail PublicationsAgreement #40050532

DIRECTORS:President - Ross YoungVice-President - Matt PeulenTreasurer - John PereiraSecretary - Katy FairleyDr. Alex Henri-BhargavaAlanna HolroydLeslie HodgkinsonCary AugustiniMira LaurenceJamie GaleDeirdre SymsSTAFF:Executive Director :BarbaraGilmoreParkinson Program Coordinator :Maureen MatthewEpilepsy Program Coordinator :Lindsay BealParkinson’s Outreach Coordinator : Lindsay BealCommunity Awareness Coordinator : Shannon OatwayAccounts- Della CronkriteNote from Editor, Shannon Oatway: Our newsletter and education meetings provide a range of information which does not necessarily reflect the views of our agency. Please use your discretion and consult your physician.

Publications Mail Agreement No. 40050532ReturnUndeliverableCanadianAddressesto:Victoria Epilepsy & Parkinson’s Centre Society202-1640 Oak Bay AvenueVICTORIA BC V8R 1B2

Confidentiality GuidelinesPlease visit our website to review the Victoria Epilepsy

and Parkinson’s Centre Privacy Policy.

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