Helping Seniors with Parkinson’s Connect with Inside …vepc.bc.ca/public/Documents/pdnlapr11.pdfHelping Seniors with Parkinson’s Connect with Community Social integration and

Contact813 Darwin AvenueVictoria BC V8X 2X7Phone: 250-475-6677Fax: 250-475-6619Email: [email protected]: www.vepc.bc.ca

Inside...Online Parkinson’sGroup 2

Vol. 28, 2nd Qtr, Apr 2011

Upcoming Programs 3

National Philanthropy DayAwards 5

Gratitude, Laughter and thePower of Positivity 6

Research Update 8

Caregivers’ Corner 10

VEPC Seeks New Board Members 12

The Story Within:Creative Writing 13

Education Services 14

Agency Update 15

Helping Seniors with Parkinson’s Connect with Community

Social integration and participation of older adults in society are frequently seen as indicators of productive and healthy aging and it is widely accepted that social support has a strong protective effect on health. An increasing number of seniors, however, are at risk of being socially isolated or lonely. This may be due to a number of factors such as increased likelihood of living alone, death of family members or friends, retirement or poor health. With current trends in aging, such as encouraging seniors to live longer at home or in the community, a highly mobile society and fewer children per family, the issue of social isolation takes on a new importance.

Factors that may put someone at risk for being socially isolated or lonely are poor health, disabilities, gender, loss of a spouse, living alone, reduced social networks, aging, transportation issues, place of residence and others such as poverty and low self-esteem. Seniors clearly value their social relationships as those age 65 years and over consistently rank relationships with family and friends second only to health as the most important area of life (Victor et al, 2000). The prevailing belief, one that is espoused by the World Health Organisation (2003), is that social isolation and exclusion are associated with “increased rates of premature death, lower general well-being, more depression, and a higher level of disability from chronic diseases.”

These risk factors should raise concern for family members and friends of and health professionals serving seniors with Parkinson’s. The nature of Parkinson’s as a progressive, degenerative disorder primarily diagnosed after age 60 makes it a risk factor. Many Parkinson’s symptoms (such as balance problems leading to falls, slurred speech, visible tremor, anxiety and depression, fatigue and slowness of thinking and memory problems) create stress, contributing to isolation and vulnerability. Research indicates that 40% of individuals with Parkinson’s suffer from clinical depression (Menza, 2009). Progressive mental and functional limitations and poor symptom management act as barriers to activity and social integration, and can contribute to further decline in physical and mental health status.

continued on Page 9

Page 2 The Transmitter, Volume 28, 2nd Quarter, April 2011

Parkinson’s OnlineTeam Volunteers Soughtfor a Fun ProjectHi folks. Well, spam infiltration led to suspension of our agency’s new PD online forum, but this is just a temporary setback. Plan B is simple, practical and playful! Let’s start by building from the ground up with

your help. We’d like to bring together a small core of interested Parkinson’s people or family members who have experience with or interest in online networks such as forums, chat rooms or facebook. With the help of our ‘online volunteer team’ together with some technical input, we plan to offer you a new online service soon. For now, please call me if you’d like to join the new online team.

Parkinson’s and the Family(please see page 3 for registration details)

This spring, I am honored to present on a topic near and dear to me — Parkinson’s and relationships. With 20 years of experience serving people with Parkinson’s and loved ones I understand the many challenges and the many blessings along the way. We all grow through connections with one another, whether we live alone or not. The precious lessons we learn from one another can enrich us as well as challenge us. So I welcome you to come and share an afternoon together. Here’s a taste …• Communicationisacornerstoneofhealthyrelationships.HowcanweaddressthechangesthatPD

may impose?• Changesinhealthcanchangetherolesweplay,suchashouseholdtasks,driving,money

management or personal care. How do we adjust with grace and maintain balance?• Ourmentalhealthaffectsourselvesandthosearoundus.Howdowecareforourselvesandothers

with respect and integrity?This session will also explore how our agency can best serve families. We value your input.

New Parkinson’s Outreach Assistant

We are pleased to welcome Lindsay Beal to our agency. Lindsay will be working part time to connect with individuals and families who wish help in coping with Parkinson’s issues. She will also be coordinating our two exercise programs. Lindsay has a warm heart and years of experience in serving people with disabilities. I know you will enjoy her!

Hugs, Maureen

The Transmitter, Volume 28, 2nd Quarter, April 2011 Page 3

Upcoming Meetings Victoria/West ShoreAllmembersoftheVEPCarewelcometoattendthefollowingworkshopsandinformationsessions.Ifyou plan on attending any of these sessions, please call Della (250-475-6677) to register.

VICTORIA

As spring rolls into summer, this is a most wonderful time of the year. We are finishing this season’s education sessions with two very dynamic and engaging presenters. Please register for these events by calling Della at 250-475-6677 as soon as possible.

Wednesday, May 18, 2011: PD and the Family-MaureenMatthew,PDProgramCoordinator,willoffera workshop on Parkinson’s and its effect on families. Emphasis will be on effective strategies to deal with the typical challenges that PD imposes on relationships from different points of view. This session is at GordonHeadRecreationCentre,4100LambrickWay(offFelthamRoad)intheMulti-purposeRoom,from1:30–3:30p.m.Freeparkingisavailableonsite.

Wednesday, June 22, 2011: VEPC Annual General Meeting. This year, the AGM will be held at St.Patrick’sChurchHall,2060HaultainStreet.Registrationwillstartat1:00p.m.andlightrefreshmentswill be available. Free parking is available on site.”

Tuesday, June 28, 2011: Louise Rose will once again lead us all in a wonderful afternoon of song and laughter. Louise is a gem and her repertoire is unlimited. Whether Louise performs a solo piece or she takes suggestions from the audience, everyone is engaged. We finish the afternoon with a feeling of joy. ThissessionwilltakeplaceattheLesPassmoreCentre,286HamptonRoadfrom1:00-3:00p.m.Iwillask if Brian can make some of his special cinnamon buns to include as part of our refreshments.

WEST SHORE

Wednesday, April 20, 2011: PD and the Family.MaureenMatthew,PDProgramCoordinator,willoffera workshop on Parkinson’s and its effect on families. Emphasis will be on effective strategies to deal with the typical challenges PD imposes on relationships from different points of view. This session is at CentennialCentre,2805CarlowRoad,from1:30–3:30p.m.Freeparkingisavailableonsite.

Wednesday, June 15, 2011: Pot-Luck Luncheon. Do you have a favourite chocolate cake recipe or do you make a seafood salad to die for? To help celebrate the coming of summer, we are planning a Pot-Luck lunch for this meeting. We will set up a buffet table of all of the temptations offered and we will provide paper plates, plastic cutlery, etc. Hopefully the weather will cooperate and we will have some fine sunshine (although we will be setting up indoors). Please come, bring your family, and meet others in the area.Weareholdingthepot-luckattheCentennialCentre,2805CarlowRoad.Ihavebookedthespacefrom12:30-2:30p.m.,whichisearlierthanourusualstarttime.Freeparkingisavailableonsite.


Upcoming Sidney MeetingsTheSidneygroupmeetsonthefirstTuesdaymonthlyfrom2:00-4:00pmattheSaanichPeninsulaPresbyterianChurch,9296EastSaanichRoad,Sidney.Noregistrationisnecessarytoattendthesemeetings and we welcome everyone with PD and their caregiver or friends to our meetings. There is a donationboxatthedoortohelpcoverthecostofrentingtheChurchhall.Please note there are no meetings in July and August.

Tuesday, April 1, 2011–An Open Discussion by you, the experts.

Tuesday, May 3 - “Parkinson’s and the Family” - MaureenMatthew,PDProgramCoordinator,will offer a session on PD and its effect on families. Emphasis will be on effective strategies to deal with the typical challenges that PD imposes on relationships from different points of view.

Parkinson’s Exercise Program NewsCongratulations go to Rob Richter who helped our agency launch an excellent new exercise program at Saanich Silver Threads. Rob shares this success with the caring quality team he pulled together. Gloria Parker, skilled nurse attendant, instructors Joy Kruger and Pat Baker and many volunteers continue to support those with PD and other health concerns

to keep moving and smiling! Thanks Rob and to all who helped to create a program that will benefit many for years to come.

Exercise programs are now open to registration by couples— a great way to keep motivated! Silver Threads classes are a seated/standing combo Mon/Thur1-2:30pm.CedarHill

seated classes are led by the amazing team of instructor Josie Harrigan, nurse attendant Marion Ensign and many dedicated volunteers. These classesareTues/Thur11:30-12:30pm. We happily book Handydart transport. Please call Maureen Matthew to discuss your eligibility to register for either program.(NoclassesinAugust.)

Parkinson’s Massage InreachTheWestCoastCollegeofMassageTherapy(WCCMT)offers affordable student massage for those with PD and family caregivers. Advanced students providemassagesat$10/hourfor those with Parkinson’s and $17/hrforfamilycaregivers.

Please call Maureen Matthew at the agency for more information and to discuss your eligibility. Once your eligibility has been determined, you can then contact the college directly (250-381-9800,andpush3attheprompt) to request a “Parkinson’s Inreach” appointment.

[Editor’s Note: Those of you with extended health insurance may have massage therapy coverage.]

Tuesday, June 7 - “Annual Potluck Luncheon” Bring on the BBQ chicken and potato salad! We willbesettingupinthebigroomattheChurchforour annual luncheon. Please bring your favourite dishes so we can start summer with a celebration. There is a kitchen available if you need to keep anything warm. Also, please note that this lunch startsat12:00noon,notatourusualstarttime.Ihope to see you all there.


In2010,theVictoriaEpilepsyandParkinson’sCentre,alongwithseveralotherorganizations,nominated Dr. Allen and Dr. Loreen VandekerkhoveandthePeninsulaCo-opforNationalPhilanthropyDayAwards.TheAllenandLoreen Vandekerkhove Family Foundation and the PeninsulaCo-ophavebeenlong-timesupportersoftheworkofVEPC.InNovembertheVancouverIslandChapteroftheAssociationofFundraisingProfessionals (VI-AFP) recognized the important contributions of both the Vandekerkhove’s and the PeninsulaCo-op.ThefollowingistakenfromtheVI-AFPwebsite:

Dr. Allen and Dr. Loreen Vandekerkhove

The ‘true gift is in the giving’ are the words of Dr. Allen and Dr. Loreen Vandekerkhove, and they have many grateful organizations thanking them for this spirit. In fact, five organizations worked together to submit a nomination for this outstanding couple. Since the sale of their family business, they have donated over $6.5 million to the local Victoria region and beyond.

They celebrate Vancouver Island and Gulf Island organizations that show a strong commitment to community first, grassroots initiatives and volunteerism. They are active, caring philanthropists who have made an enormous impact on the health, wellness and vibrancy of our community. We thank them for their generosity.

Peninsula Co-op

ThePeninsulaCo-Opisaconscientious,activeand contributing member of our local community. Sinceitsfoundingin1977,PeninsulaCo-ophascommitted itself to ‘Moving Ahead by Giving Back’, a corporate slogan which they honour through a significant community support program, their staff and Board volunteerism, mentorship and rebate support to their membership. Through their CommunitySupportProgram,3%oftheirbottomline goes to help the local community in a variety of ways. This program has grown from $44,000 in1999tojustover$300,000in2010.Thisisanextraordinary company that makes us all proud.

National Philanthropy Day Awards

Generosity of Spirit recipient Loreen Vandekerkhove with herdaughter, Alanna Holroyd

New In the Library: Think Smart, A Neurologist’s Prescription for Improving Your Brain’s Performance(2009)

by Richard Restak, M.D., an award-winning neuroscientist and neuro-psychiatrist, and authorof18acclaimedbooksaboutthebrain.Inhis characteristically accessible style, Dr. Restak explains the latest scientific discoveries about our brain and gives us insight into how we can keep our most powerful organ in top condition. You’lllearn:• Howwalkingcanshapeyourbrain• Thatincreasedhandandfingerdexterity

increases both mental agility and longevity• Thepositiveimpactvideogamescanhave

on your brain• Thebenefitstoyourbrainoflearning3new

words every day.


Laughter and positive thinking are powerful forces. A smile is inviting. Laughter is infectious. It brings us together and supports a sense of community, of belonging. Makes us feel better. Relieves tension in the heat of the moment. Helps us solve our conflicts. Helps us forget our worries— at least for a short period of time. I often hear from people with Parkinson’s that “sometimes you have to laugh even when things are bad”.

But is laughter really good medicine? Researchers believe so and have measured physiological changes including changes in hormones, neurotransmitters, stress chemicals, heart function, diabetes control, depression and pain control.

So laughter makes us feel good. We all know that. But does laughter really have positive effects on our body’s physiology andchemistry.Claimsexistthat laughter helps the immune system, improves heart function, improves mood, enhances relaxation and releases chemicals such as endorphins and hormones. For those skeptics out there, who need evidence to support the healthy benefits of a smile and laugh or just cannot believe something so simple and

Gratitude, Laughter and thePower of PositivityFrom articles by Monique L. Giroux, MD and Donna OilandFrom Northwest Parkinson’s Foundation, Dec. 10, 2010

good feeling is good for you, here is the evidence.

Researchers at the University ofCaliforniaandUniversityof Miami studied people with neuromuscular disease, a group of conditions that can cause weakness, muscle paralysis, breathing, walking, speaking and swallowing problems. These individuals were divided into two groups. The two groups were instructed to give daily reports overa21dayperiodasfollows:• GratitudeGroup1:This

group was instructed to record what they were gratefulforovera21dayperiod. The group was also asked to record how they feel, their sense of well-being and global assessment of their day.

• Group2:Thisgroupwasinstructed only to record how they feel, their sense of well-being and global assessment of their day.

The group that focused on gratitude reported a more positive affect, reduced negative affect and even improved sleep.

These effects were ‘real enough’ to be noticed by the person’s spouse or partner. The benefits of gratitude were even more marked when compared to groups that focused on hassles and life problems only (this study however was completed with college students not people with neuromuscular disease).

There are so many factors that affect how we feel and how our symptoms change from day to day. You will most certainly have ‘good days’ and ‘bad days’ with Parkinson’s or any chronic illness for that matter. How well you sleep, the quality of your diet, exercise, the quality of your relationships with others, the ability of medicines to treat your symptoms and your mood will affect how you feel. Just reflecting on the picture below may bring a smile on your face or positive thought to mind.


So positive thoughts affect how we feel. But what if we have trouble being positive? We have heard so much about the benefits of a positive attitude. Some people just seem to be more optimistic than others. So how do you work with pessimism if this is your nature? Gratitude may be the key to a more positive attitude of mood. Gratitude comes from the Latin root gradia meaning gratefulness or grace. Gratitude is not easy to define but generally is a quality, action, emotion or feeling toward something else or received from someone else— whether other people, life circumstance, opportunities, or life experiences.

Gratitude is linked to happiness and wellbeing. Some people with Parkinson’s focus on the negative, all that they have lost and not what they have. Practising gratitude may help us deal with life’s problems and find a sense of meaning, place, contentment and purpose even when dealing with setbacks. For some of us, gratitude is a way of life. For others, practice helps increase our sense of gratitude.

What is the take home message? Taking a moment and reflecting on what you are grateful for can improve your sense of wellbeing, mood, and perhaps health. • Tellyourself

something you are grateful for, thankful of, or appreciative of each day.

• Takethisexerciseonestepfurther by writing your thoughts of gratitude down in a book or journal.

• Shareyourthoughtsofgratitude with your partner or someone special in your life.

• Takeamomentoutofeachweek to read your thoughts of gratefulness.

• Findamomenteachdaytolaugh, think or do a positive thing for yourself or others.

Reference:Robert Emmons and MichaelE.McCullough.Countingblessingsversusburdens:anexperimentalinvestigation of gratitude and subjective well-being in daily life. Journal of Personality and Social Psychology.2003.84:377.

[Editor’s note: I like to think of these tips as exercising your ‘gratitude muscles’, building them up by a regular use, stretching them a bit and making them work. These articles were found at www.nwpf.org/wellness/EmotionalHealth/MoodAndBehavior, 11/15/2010. At this website are additional articles on gratitude, power of positivity and volunteering ,if you would like more information on these topics.]

Quotetoponder:“Laughter is like changing a baby’s diaper…it doesn’t fix things permanently but it makes things ok for a while.”Michael Pritchard


Research Update Hallucinations and Sleep Disorders Are Unrelated in Parkinson’s Disease

[This article is found at http://www.pdf.org/winter11_news_in_brief#sleep]

Among people with Parkinson’s (PD), sleep problems such as vivid dreams are not associated with increased risk of developing hallucinations, according to a study in the October20,2010onlineissueof Neurology. Although people with PD who experience hallucinations often do have sleep difficulties, the two issues may not be related and they progress differently.

Sleep difficulties are common among people with Parkinson’s. The most common sleep difficulties include sleep fragmentation (that is, the tendency to wake up multiple times at night); acting out dreams (REM sleep behavior disorder); and vivid dreams. Traditionally, vivid dreams were considered an early manifestation of hallucinations — a common problem in mid- or late-stage PD, which can actually be exacerbated by some PD medications — and were treated similarly.

To understand hallucinations and sleep disorders, researchers at Rush UniversityMedicalCenter,ledbyChristopherG.Goetz,

M.D.,followed89peoplewithPDfor10years.Atthetimeofenrollment, 60 participants had never hallucinated but reported a range of sleep disturbances, and 29 had experienced hallucinations.

The average age of the participantswas68,andtheaverage time since PD diagnosis wasabout10years.Allweretaking levodopa, and about half also took other PD medications, including those for sleep.

The researchers used standard assessments to rate the quality of participants’ sleep and the presence and frequency of hallucinationsatsixmonths,18months, four years, six years and 10years.

Results:• Duringthe10-yearstudy,the

percentage of participants who experienced hallucinations nearly doubled, and among those who experienced them, the hallucinations were more frequent and more severe.

• Actingoutdreamswastheonly sleep disturbance that was found to progress over time,reportedbyjust12percent of participants at the beginning of the study and by 33 percent by the end. Other common disturbances — such as frequent waking during the night, vivid dreams and daytime sleepiness — did not worsen over the course of the study.

• Peoplewhoreported

sleep disturbances at the start of the study did not have an increased risk of hallucinations.

• Noassociationwasfoundbetween dosages of levodopa and hallucinations.

What Does it Mean?

This study disproves the common notion that vivid dreams are a simply mild form of hallucinations. The authors also point out that no hallucinations should be considered “benign,” as this symptom most often becomes chronic and progresses over time. In addition, the finding that four study participants never developed hallucinations suggests that there may be factors that protect against hallucinations. Further study is needed.

Pets And Parkinson’s Study

Voxy - The School of Population Health at the University of Auckland, supportedbyParkinson’sNewZealand, is conducting a study inNewZealandwhichaimstounderstand how pets can help people with Parkinson’s. One of the participants taking part in this study is William.

William was diagnosed with Parkinson’s10yearsagoandheand his family got their dog Leo inJune2010.HesayshavingLeomeans he “gets plenty of exercise


running around after the dog”. His daily walks with Leo also give him an opportunity to meet and talk to other dog owners.

Many people living with Parkinson’s find themselves becoming isolated and lonely as their condition makes getting out and socialising more difficult. These walks are a social opportunity William wouldn’t getifhedidn’thaveLeo.Caringfor Leo also means he has a routine to his day as he has to get up and feed him every morning. People living with Parkinson’s can find it difficult getting motivated and can find planning their day a challenge. William’s

wife Mary-Anne describes his routine with Leo as good for setting him up for the day.

“Leo gives him a reason to get up in the morning. He also gives him someone else to care for. Whenever we are going out, William wants to know if Leo will be coming with us. Leo gives him something else to focus on”.

Research has shown many health benefits associated with owning a pet for people living with other illnesses, but the benefits for people with Parkinson’s has not yet been investigated. In the UK neurologistsatCharingCrossHospital are reporting the case

of a woman whose walking, appetite, sleep and social life have all improved since she got a dog.

The School of Population Health is looking for another 25 Auckland based people to be interviewed as part of this research. They are looking for people with dogs and/or cats who also have Parkinson’s. If the findings of this study confirm there are real benefits of pet ownership, this may support programs to assist people with Parkinson’s to own or care for a pet in their own home, or support the introduction of pets into care homes.

Helping Seniors with Parkinson’s Connect (Continued from cover)

Although the exact relationship between social support and health care usage is difficult to define, there are clearly links. A 2004 report by theBCMinistryofHealthnotedthe sometimes contradictory research findings on isolation and healthcare. The report states that often socially isolated seniors use fewer health and social services, but notes that this may be explained by recognizing the role that informal and family support networks play in recognizing and affirming the need for formal assistance and facilitating access and entry into the formal care system. The report also references studies stating the combination between high distress and the absence of a social network/support leads to an especially high use of medical services. The report noted that,

although some studies report direct impacts on health from social support, the use of medical services among older adults is still primarily related to need. However, social support may also be exerting an indirect influence on health status and service use through need or perceived need.

The Victoria Epilepsy and Parkinson’sCentrehasbeenawarded a grant by the Home InsteadSeniorCareFoundationto build its Outreach Services to individuals and their families who might be feeling the isolating aspects of Parkinson’s. TheHomeInsteadSeniorCareFoundation was founded in 2003 as a means to further enhance the health, safety, support services and lives of older adults. The grant from the Foundation willhelpVEPCbuilduponits existing outreach services,

including outreach, educational and exercise programs funded in part by the United Way of Greater Victoria, by adding a part-time Outreach Assistant, Ms.LindsayBeal,toVEPC’sstaff.

We know that the physical and cognitive symptoms of Parkinson’s pose unique challenges to individuals and family members that can result in increased self-isolation. It is therefore important to link individuals with community services, supports and social opportunities. If you are lonely or you are concerned about a loved one, please contact us. VEPCprovidesa“safeplace”for individuals with Parkinson’s to engage with others who understand their condition.


Caregiver’s Corner

Respite - Taking a Pause

Authors: Kathleen Atagi, Recreational Therapist, Regional Resource for Adults with Disabilities, Home and Community Care; Elizabeth McCarter, Recreational Therapist and Yakimovich Wellness Centre Coordinator, Seniors Health, VIHA

[Article found in FCNS, Vol. 24, No. 6, 2011

Family caregivers regularly hear from well-meaning family, friends, neighbors and healthcare professionals that they should get “respite” for themselves to maintain their health. Too often, family caregivers think, “How do I take time for respite for myself, when there is way too much to do already?”

In preparation for writing this article, we looked up the word respite in dictionaries and then in a thesaurus and this is what we found–areprieve;apausefromdoing something; interruption in the intensity of doing something and take time out to relax.

The phrase, “a pause from doing something” seems easier to digest than the word— respite. A pause can mean taking a deep breath, stretching your body out, taking a minute to look out the window, answering the

telephone, listening to music, sipping on your morning coffee/tea; calling another family member to spend time with the care recipient while you go to lunch with close friends.

Taking a pause can be the beginning of taking time for yourself–apausecanbespontaneous, unplanned or planned, structured time or both. People actually accomplish more when they take time for short rests. Taking a breather allows you to take a moment for yourself and to re-energize yourself as a caregiver.

Research indicates the importance for caregivers to have respite options available in order to maintain the ability to be an effective caregiver. Seeking support and maintaining one’s own health are keys to managing the caregiving years (www.Help Guide.org). Maintaining health for both the caregiver and the care recipient is important to prevent caregiver burnout, social isolation and depression.

In recognizing your need for respite or a pause it is important foryoutoidentify:• Whatisimportantforyouas

a family? • Issupportwhatyouneedthe

most? • Wherewithinthe24-hour

time clock do you have free time?

• Areyouopentootherscoming into your home to provide support?

• Whatservicescanyouafford?

• Arethereresourcesinthecommunity that might meet your respite needs?

Consideringthesequestionsmay help better determine what respite options to pursue.

Family caregivers and care recipients need to have an open dialogue about respite needs with each other and with other family members in order to make decisions about the type of respite wanted, either planned or unplanned, in the home or in the community.

Suggestedtalkingtipsinclude:• Engagefamilymembers

in any decisions that are made by talking openly and regularly about your loved one’s needs and condition. Family members who don’t share the day-to-day caregiving experience may not truly understand the situation.

• Whenaskingforsupport,ask for specific areas of need and times of the day when you need help.

• Iffamilyisnotavailable,in-home services can be provided by volunteers or paid help, occasionally or on a regular basis. This option


Community Note:

Thenew2010–2012Seniors’Services Directory is now available. WehavemanycopiesintheVEPCoffices if you would like to have one for your personal reference. Please ask for one on your next visit to our officesat813DarwinAve.

allows the care recipient to stay within the home, and can be a valuable time for caregivers to meet their own needs.

• Respitecareoptionsofferedthrough the health authority are available by contacting HomeandCommunityCare,

Participants Needed in Two Research Projects at UVicResearch Study #1:AstudybeingconductedthroughUVICwantstobetterunderstandyourexperience of providing care at home to a loved one who is ill, and how you and your home care nurse work together to provide that care. If you are interested in finding out more about the study, pleasecontactFayeWolseat250-472-5501oremail:[email protected].

Research Study #2:AresearchprojectfocusedonexaminingtheneedsandexperiencesofdementiacaregiversistakingplaceatUVIC.Familymembersofindividualswithtypicaloratypicalforms of dementia may qualify to participate in this study. If you are interested in finding out more aboutthestudy,[email protected].

via the General Enquiries Line250-388-2273andaskingforaCaseManagertocome to your home to assess for respite care options.

Being clear on wants, needs and desires for respite with family, neighbors and friends is

an essential component in the caregiving journey. Although it may seem like a lot of work to plan and execute the activity, caregiver research has shown that taking a pause in the day has positive outcomes for the health and well-being of both the family caregiver and the care recipient.


Register Now for the Peninsula Co-op CharityGolf Classic

The19thAnnualPeninsulaCo-opCharityGolfClassicwillbeheldonFriday,June10thatOlympicViewGolfClub.TheeventraisesfundstosupporttheVictoriaEpilepsyandParkinson’sCentre’sservicestothecommunity.

ThisyeartheTournamentPlanningCommitteeischangingthethemeoftheevent.Thelasttwo years have had a Western theme, complete with hay, chaps and country music. This year the Committeedecidedtohonourgolf ’srootsbygoingwithathemeofgolftradition.Ofcourse,golftradition has to include golf ’s Scottish beginnings so look for a bit of tartan and bagpipe music at the 2011Tournament.Golfersareencouragedtodressforthethemesokiltsandsporransareallowed!

The tournament will once again feature a Helicopter Golf Ball Drop, this year sponsored by DirectCashATM.BallDropticketsareavailablebycontactingVEPC(seeinsertedforminthisnewsletter). Registration for the Tournament is already open (early-bird deadline April 30) and golfers canregisteronlineorcontactVEPC.Welookforwardtoseeingyou!

Victoria Epilepsy and Parkinson’s Centre (VEPC)Seeks New Board Members

Are you a person with Parkinson’s or epilepsy? A family member or friend? Or maybe a professional interested in contributing to your community?

TheVictoriaEpilepsyandParkinson’sCentre(VEPC)iscurrentlyseekingnewBoardmembers.We are particularly interested in individuals with backgrounds in fundraising, public relations, investments, and programming with strong ties to the local community and an interest in epilepsy and/or Parkinson’s.

VEPCismanagedbyavolunteerBoardofDirectorsmadeupofpeoplelivingwithepilepsyorParkinson’s and professionals with an interest in the two disorders. Board members are appointed for an initial one-year term followed by two-year terms. Each Board member is expected to serve on at least one Board committee. The Board of Directors provides overall direction for the organization and isresponsibleforensuringVEPC’sprogrammaticandfiscalhealthandaccountability.

IfyouhaveknowledgeandexperiencethatwillassistVEPCasitgrowstomeettheneedsofgrowingpopulationsofindividualswithepilepsyandParkinson’sintheVictoriaCapitalRegionalDistrict,weencourageyoutoapplytojoinVEPC’sBoardofDirectorsbycontactingustorequestan application. Board members are selected by the current Board of Directors and approved by the generalMembershipatVEPC’sAnnualGeneralMeeting.

YoucanreachVEPCat(250)475-6677,[email protected], or visit our website at www.vepc.bc.ca


The Story Within: Creative Writingin the Community

The Faculty of Fine Arts at UVic is offering an exciting new experiential learning course from May18toJune29,2011thatlinkscreativewritingstudentswithpeopleinthecommunitywhohaveastorytotell.ThiscourseiscoordinatedandtaughtbyIsaMilmanandMelanieSiebert–localwriterswithexperienceincommunityhealthandsocialengagement.IsawaswiththeVEPCover14yearsbefore retiring last December.

This course is for beginning writers who feel they have a story to tell but who could benefit from some instruction in writing techniques and strategies. The aim is to create a supportive environment that is suitable for people with little writing experience. The one-on-one writing partnership aims to provide an encouraging, low-stress environment where participants are able to work at their own pace and comfort level.

Thiscourseislookingforpeoplewhohave:• Adesiretoworkonacreativewritingproject• Adesiretoworkinaone-on-onelearningenvironmentwherecommunitywriterscomplete

assignments, are given feedback, and work on revising their writing• TheabilitytoreadandwriteinEnglish• Theabilitytofocusonawritingprojectforatleastanhouratatime• Theavailabilitytocommittoaminimumofthreehoursperweektoworkwiththeirwriting

mentor over the six week duration of the courseAll individuals, whether with PD or their caregiver/family or friend, are invited to participate. As

Isa says, “It is for people who have a story to tell and want to tell it, and just need help.” Isa is looking for about 20 people to start this project.

If you are interested and want more information, please contact Isa at [email protected].

What’s Happening Around Town:There are many interesting and informative opportunities happening around town, too many to

list here. There are workshops, activities, social meetings, and support groups covering many topics and involving many different people.

All of the recreation centres offer programs for fitness and health related activities, as well as the many community groups offering social activities and classes. Please be sure to check the following communitywebsitestoseewhatmaybeofinterestyou:YakimovichWellnessCentre:http://www.viha.ca/hshc/yakimovich_wellness_centre.htm FamilyCaregivers’Network:http://www.fcns-caregiving.org SilverThreads:http://www.silverthreads.ca ShoalCentre(Sidney):http://www.beaconcs.ca/pages/shoal.html


Education Services for Parkinson’s is focusing on two areas through the summer and into the fall months.

The first is the presentations that I give here in theCRD.Theseare primarily

directed at care home residents, and usually because a resident is experiencing PD and their fellow residents just want to know more about the condition and what they can offer as support. I also give presentations to home care nurses, to student nurses and resident care aide students. I love giving these presentations and always enjoy the question and answer period at the end.

One program that we are particularly proud of we are producing in coordination with Lynn Pollock. Lynn is a pharmacist and also a member oftheBoardofDirectorsoftheVEPC.BetweenJanuaryandAprilof2011,LynnPollockprovidedone-on-one consultations with our members. Each Wednesdayforthose12weeks,Lynnmetwithourmembers throughout Victoria, Sidney, and the WestShore area to provide detailed information concerning their specific medications— all of their medications including for conditions other than PD.

Many of the people who spoke with Lynn are not just made more aware of what their medications are accomplishing but also how medications can interact with each other (for example, if you are also taking aspirin or a pain killer or if you are also taking meds for diabetes or heart disease or arthritis), when the best time to take meds are, and what to expect of the medications.

The success of this program has been overwhelming, with the scheduled spots often booked many weeks in advance. We hope to be continuing this program in the fall, starting in September or October. We will announce it through the e-newsletter that is sent out monthly or, if you don’t have a computer, please call the office (250-475-6677) for more information.

As you know, we have extended our education services out to the West Shore area and this is a very enthusiastic group— about 25 people show up each meeting. At this time, our meetings are bi-monthly with our next one on April 20th when Maureen will present on PD and the family. Our June15thmeetingwillbeapot-lucklunchtohelpcelebrate our second year in operation.

Lissa Zala

Education Services

We offer our compassion to the families who have lost the following loved ones and extend our sincerest thanks tothosewhosentdonationsintheirmemory:Don Tyson, Rodney Cleaver, Niven Thomson, John Dickson, Maurice Tugwell, Brynmor Jones, George Mackereth, Fred Crowe, Margaret Karlson,

Margery McEown, Willie Baldus


Agency Update

Our April newsletter usually heralds the beginning of spring (no groundhog needed here). As I pass my second anniversary with VEPCandwritethis column, I recognize that I

have a tendency to reflect on the weather. I am truly becoming a Victoria resident!

Seasons, of course, are also metaphors for life. In February I lost my father— a wonderful man who loved history and the arts and who had a fulfilling career and family life. Latterly he was challenged by several chronic conditions— not Parkinson’s, but, like Parkinson’s, conditions that resulted in his health deteriorating over time. Gradually family care-giving increased, first provided by my mother and then, as his needs became greater, also by my sisters and I. My last two years of family care-giving have given me a new appreciation for the unrecognized work that spouses, partners, children and siblings undertake. Family caregivers often work through exhaustion to support people with love and humour. Family caregivers balance multiple roles and place family first. Family caregivers save the healthcare system millions of dollars. Family caregivers can get frustrated, get isolated and can burn out.

One week per year we recognize the work of familycaregivers.ThisyearFamilyCaregiverWeekisMay7ththrough13th.Locally,theVictoriaFamilyCaregivers’NetworkSociety(FCNS)isan important resource for family caregivers and

fororganizationssuchasVEPCthatsupportindividuals and families. As we head into May, I stronglyrecommendthatVEPCmemberscontactFCNS(250-384-0408)abouttheresourcestheyoffer— an extensive library, educational workshops and support groups— and that you look out for special events that raise awareness and highlight the role of family caregivers.

OurfamilyatVEPCisgettingbigger.Asmostofyouknow,VEPChasalmostcompletedanewStrategic Plan the result of which prioritized the needs of isolated seniors with Parkinson’s and theirfamilies.VEPCiswindingdownagrantfrom the United Way of Greater Victoria which allowed us to focus our programming, extend our reach and develop the new Parkinson’s exercise class in partnership with Saanich Silver Threads. We learned a great deal from that project and are looking to new ways to reach those most at risk of isolation.Withthatgoalinmind,VEPChasbeenawarded a grant from The Home Instead Senior CareFoundationtosupportanewpart-timeParkinson’s Outreach Assistant. It is with great pleasurethatIwelcomeLindsayBealtoVEPCandthis vital position. Lindsay brings with her a wealth of experience, most recently with the Victoria Brain Injury Society, and a deep knowledge of our community’s resources. She will be a wonderful additiontoVEPCandtotheParkinson’sProgramin particular. Welcome Lindsay!

On that happy note, I will bid my adieu and wish youawonderfulFamilyCaregivers’Week.

CatrionaJohnson

P.S. See enclosed insert about VEPC’s Annual General Meeting to be held June 22nd. I hope you can attend.

Publications Mail Agreement No. 40050532Return Undeliverable Canadian Addresses to:

Victoria Epilepsy & Parkinson’s Centre Society813 Darwin AvenueVICTORIA BC V8X 2X7

IMPORTANT CHANGE OF ADDRESS NOTICE - To reduce agency costs for newsletters returned with incorrect addresses, please keep us informed of any change in your address so that we can ensure you receive the newsletter

“The Transmitter”Published 4 times yearly

Editor: Lissa ZalaCanadian Mail Publications

Agreement #40050532

DIRECTORS:President - Michael DomanVice-President - Mary Clare LegunTreasurer - Bill MorrowSecretary - Tony WadeChristine CoatesAlanna HolroydDavid MedlerDr. Alex MollChristopher PittLynn PollockBlaise SalmonSusan Ward

STAFF:Executive Director - Catriona Johnson, M.S.Parkinson Program Coordinator - Maureen Matthew, B.S.W.Epilepsy Program Coordinator - Jennifer Morgan, B.A. HonoursEducation Services Coord. - Lissa Zala, M.Ed.Parkinson’s Outreach Assistant - Lindsay Beal, M.Ed.Office Manager - Della Truitt

EDITOR’S NOTE: 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.

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Advertising GuidelinesAcceptance of advertising does not constitute an endorsement bytheVictoriaEpilepsy&Parkinson’sCentreoftheproductsorservices listed.Distribution:800Victoria&VancouverIslandAnnualIssues: January, April, July, October

For ad rates, format, deadlines and payment options please contact DellaTruitt,VEPCOfficeManager,at(250)475-6677oremail:[email protected]

Confidentiality GuidelinesWe respect your right to privacy, so please be assured that our agency does not share our membership list with outside individuals or organizations. Occasionally we may ask you to volunteer some information so that we can better understand our clients’ needs and improve our services.