shared voices fall 2013 - ms societyshared voices fall 2013 3 voices i took a pair of my wife’s...

SHAREDVOICES

“ t h e v o i c e o f t h e l o w e r m a i n l a n d c h a p t e r ” Fall 2013

We’ve all had moments when peopleseem to go out of their way to be kind. It canbe as simple as opening a door, helping us findsomething or, in one embarrassing instance,picking me up off the floor when I lost mybalance and fell. These are times when myappreciation is spoken and obvious, but thereare also a lot of times when it’s in the form of asilent ‘thank you’.

It seems to be human nature tofocus on the negative. I can get severalcompliments or experience manyuplifting moments, but one negativeremark or situation is what I focus on.Sound familiar?

Every morning, I make a listof ten things I’m grateful for andwhy. It can be a simple thing asmorning coffee (my favorite), or any of themany little things we take for granted that makeour lives easier. After I’ve made my list, I rereadeach item and say, thank you three times. Thisis a great way to start the day on a positivenote and no matter how cranky I feel when I getup, it always makes me feel better.

My husband is amazed at how strangerswill insist on helping me when we’re outsomewhere, even though he’s right there withme. ‘I need to do this for me’ they’ll say, or ‘Iwant to do this’. It seems going out of theirway to help me is actually helping them. Ibelieve people really want to be kind and arelooking for an opportunity: I’m more than happyto help them out! A big smile and a sincere‘thank you’ makes everyone feel better.

Feeling Good! by gloria bosanac

I know it’s easy to get bogged down witheverything that seems wrong in our world; we’reinundated with bad news and heart wrenchingstories. It can be a challenge for me to be upbeatwhen my body isn’t cooperating, and I’m feelingfrustrated and afraid. It can be hard to get pastthat, but that’s the time when gratitude has themost power. Being thankful for the tiniest thing or

remembering when someone was kind caninstantly help. It’s such an easy thing todo. I can’t control what goes on aroundme; I can only control what goes on

inside of me. With a disease like MS,it’s easy to let negative thoughts takeover. Being thankful for anything andeverything, no matter how seemingly

insignificant, instantly shifts our focus toa positive place and our body responds

accordingly.This simple technique has proven effective

for me time and time again. Try it. You’ll feel good.I guarantee it!

Don’t get left out! Receive our electronicnewsletter MSenger. Email Adrianne at

[email protected] and writeMSenger in the subject line.

shooting hoops

Canada Post Publication Number:40063333

Shared Voices Fall 2013

Editorial CommitteeBrenda Worthington (Editor)[email protected] Hoffmann (Co-Editor)[email protected] [email protected] [email protected] [email protected]

Shared Voices is published fourtimes a year by the Lower MainlandChapter of the MS Society ofCanada, BC Division. The contentsmay be reprinted with customarycredit. Your submissions to SharedVoices are encouraged. Forwardthese and any address changes withthe mailing label to the above ad-dress.

The MS Society stronglybelieves in the freedom ofspeech. The articles pub-lished in Shared Voicespresent different points ofview, and are not neces-sarily shared by the MSSociety, Lower MainlandChapter

ellen [email protected] [email protected] [email protected] [email protected]

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Layout by Derek Sampert

editorial

Shared Voices1501- 4330 KingswayBurnaby, BC, V5H 4G7604.689.31441.800.268.7582info.bc@mssociety.cawww.mssociety.ca/chapters/lmc

Contributing writers: Craig Elliottand Marilyn Lenzen

the race is on !!

Playing TogetherWhat fun! The Spinal Cord Injury ofBC invited the MS Society to jointheir 12th annual Bus Stop Hop onSaturday, August 17th. Ten teams offour participants – two able-bodied,two using mobility devices, tookpart.

The two-page trivia questionnairekept us busy, (how many spinalcord injuries are there in BC eachyear – 500, their FB and Twitterinfo, who is fourth in line to becomethe king of England – do youknow?). We had to access theirsand other websites, even engagingother skytrain riders for the

answers, while we raced, using everything Translink has to offer, toget to Lonsdale Quay, Science World (the able-bodied people hadto race using wheelchairs) and YVR before landing at the finish linefor a BBQ on Granville Island. Whew!

We met wonderful people. Take a look at the photos on our LMCFB page – you may want to join us next year!

Shared Voices Fall 2013 3

voices

I took a pair of my wife’s sunglasses infor repair at a Leo Franken Optical Consultantsin Kerrisdale on the way to drop my daughter offat a friend’s house. We walked in and I asked ifhe could do a quick fix on the glasses (theywere in two pieces). I was told “Absolutely,” if Icould come back in 10 minutes as the store hadseveral customers. When I returned they wereready. I asked how much and was told nocharge. Shocked - who does anything freethese days? I insisted I pay something and wastold, if I wanted to make a donation, he had abox where he collected money for MS! Turningout my pockets I apologized for only a fewdollars. Leo said he didn’t need anything and thecouple of dollars I had was more than enough. Ithrew my change in and left, thankful and with arefreshed outlook on humanity. When I got backto the car, I found my money; it must have fallenout of my pocket. Feeling like I must repent mysins, I raced back to the store as fast as mylimp would carry me.

I triumphantly told Leo that I had foundmy money on the car seat. With a smile on his

A Tribute to a Local Hero by craig elliott

face he told me I didn’t have to come back. Iexplained that I did as I have MS and the factthat he was willing to fix my wife’s glasses out ofthe goodness of his heart with only thesuggestion of a minor donation to MS touchedme greatly. I made a larger donation andthanked him again. Leo told me they have beenraising over $1000 each year, by asking adonation for any adjustment or screw repair hisfirm does.

I wonder how many unsung heroes thereare humbly raising money for MS with norecognition. I know I will buy my next pair ofglasses from this generous, kindheartedoptician.

My 4-year-old granddaughter was in the mall with her mom. She approached a lady whowas sitting in a wheelchair and said “ My grandma Lin has a chair like yours but hers isblue and has sparkles in the sunshine so the next time you get a chair, I don’t think you

should get black. You should get a more fun color.” - LM

How kids grow up to see the person and not the chair

Ed. Note: If you know of any such wonderfulpeople, please tell us about them. We wouldlove to pay tribute to the many who work behindthe scenes, making a huge difference insomeone’s life.

book review


This terrific little book is not just one storybut 26 truly inspiring stories of men and womenfrom across Canada, the US and South Africa,who also just happen to have MS. They write oftheir hopes, fears, day-to-day challenges, whilelearning from others’ optimism, with muchlaughter and what my mother used to call“gumption” (being resourceful and courageous).One does therapeutic horse-back riding, whileanother even climbs Mount Everest. All areproof positive that stories do in fact have thepower to make us shed a tear, heal and eveninspire. One writes that being a little clumsy in hermovements does not make her undignified, it onlymakes her grateful she can still move. Anothersays after being diagnosed, she began tounderstand that dis-abilities are just differentabilities; we need to discover our special ones.And that if a fragile daffodil can survive againstall odds, so can she.

MS - My Story(A Collection of Inspirational Voices)Edited by Liz Pearl2012 PK Press Toronto

In the bookworm’s corner reviewed by anne stopps

My favorite quote is from LornaMoorhead, founder of MS Moms: “my MS hasnot dealt me a hand I can’t turn into anopportunity to smile, even if I pee myself.”

Certainly worth a read it is available from the MSLibrary - Brenda will happily mail you a copy ifyou call her at 604.689.3144 or outsideVancouver 1.800.268.7582.

Websites you might like to check out:

www.missionpossible.comwww.wildwomenexp.com

www.msmoms.orgwww.MyOptimalHealthClub.org

www.EmpowermentThroughAdventure.com

I have the best great-nephew in the world; Ben (11) took the $5 from his newly lost molar to A&Wto buy himself an apple pie. As he sat eating, he saw an endMS jar, got up, and told his mom he

was going to donate the rest of his money to End MS, because he knew ‘that’s what Auntie B has’.What a beautiful family.

A proud BFK

From the Heart


help along the way

In early July, I was enroute to a meeting atthe MS Society offices in Burnaby - an arduousjourney on public transport from Ocean Park inWhite Rock. The helpful team at HandyDART puttogether a carefully crafted schedule –HandyDART-Skytrain-another HandyDART.

Three Skytrain stops from the station,where my next one would be waiting, the trainbroke down. Dutifully we passengers got off thetrain, a loudspeaker called us back on, the trainmoved and then returned to the station. Thiscontinued several more times and each time, wegot on and off the train.

By then, I was too late to join the meeting.Tired, feeling unstable and having missed myconnection, I called HandyDART about my

Kudos, HandyDART! by julia hall

predicament. They acted quite above and beyondtheir required duties. In no time, a HandyDARTbus arrived to assist me on the journey backhome; a smiling face helped me onto the bus -another smiling face helped me down to thestation and onto the Skytrain. When I got off thetrain, yet another helping hand assisted me to aseat to await the arrival of my final ride. Whathad become a trying and difficult trip had turnedcompletely around.

As I made myself a cup of tea, safe andsound at home, I was reminded of just howimmensely helpful people are - it is through theassistance of many kind souls that I and others,also disabled, can live independently. Thanks,everyone.

HAFI (Home Adaptations for Independence)

Funded by the Government of Canada andthe Province of British Columbia, the HAFIprogram was created to assist low incomeseniors and people with disabilities to financehome modifications for accessible, safe andindependent living. Eligibility is determined byannual income, home value in the region andother home owner assets. Criteria arereasonable, making this program available tomany.

Up to $20,000 per applicant ($40,000 for astrata if there are two) is available. The funding isissued as a forgivable loan requiring therecipient(s) to remain in their home for threeyears.

HAFI, administered by the HomeownerProtection Office (a branch of BC Housing),provides homeowners and landlords with eligibletenants, financial assistance for adaptations suchas handrails in hallways or stairways, ramps,easy-to-reach work areas in the kitchen orbathtub grab bars. Strata councils can apply forassistance to changes of common areas if thereare one or two building owners that are eligiblefor the program.

OfficeBranch of BC HousingHomeowner Protection

Suite 650 – 4789 Kingsway

604.646.7050Burnaby, BC V5H 0A3


out & about

9th Annual Taste of YaletownOctober 16 – 27

Similar to January’s Dine Out Vancouver, this event showcases the talents of chefs and the culinarytreasures of the area. For two weeks, Yaletown kitchens will offer VIP menus, special tastings andinnovative pairings to tempt the most adventurous foodie. Three-course meals are $18, 28 or 38.

Downtown Food Cart Walking Tour

Until October 31 (every Tuesday, Wednesday, Thursday, Friday)1:00 - 3:00 pmMeet at The Juice Truck, corner of Abbot St and Water St. Gastown

Explore the popular food cart scene in the downtown core – the largest in Canada. From Gastown toGranville Street, the tour will take you to the best street eating the city has to offer - traditional Indiannaan, Hong Kong dim sum, Australian pies. This tour is a fantastic way to sample six different foodcarts with an array of flavors.

The Food Cart FestJune 23 - September 22 (every Sunday)Noon - 5:00 pmFalse Creek

This weekly gathering of Vancouver’s top Food Carts high-lights the diverse and delicious culture of Street Food. It iscomplemented by community markets, live music and DJ’swith craft and food vendors and activities for kids.

by linda macgowan

Pumpkin Patch - Explore Southland Farm on a self-guided tour and pick apumpkin - admission by donation. $5 per pumpkin

Oct 1 – 31, 2013 9 am to 6 pm, 7 days per week6767 Balaclava Street (at West 51st Ave.)604.261.1295 or

Pumpkin Patch

http://www.southlandsfarms.com/pumpkin-patch.html


out & about

Vancouver’s Original Greek Food FestivalSeptember 20 - September 22 (Friday - Sunday)Hellenic Community Centre4500 Arbutus Street, VancouverTime: TBA

For more information, call the Hellenic Community Centreat 604.266.7148, or check http://helleniccommunity.org/In its 36th year, this three-day festival features authentic Greek food, live dance, entertainment, kids’activities, Greek language lessons and an agora marketplace.

Circle Craft Co-operative 40th AnnualChristmas MarketNovember 7 - November 11 (Thursday - Monday)Vancouver Convention CentreWest 1055 Canada PlaceHours and Tickets: TBA

At this market you will come face-to-face with fine BC and Canadian artisans and their work: wood-turners, glassblowers, sculptors and potters, clothing and jewelry designers, toy-makers.

May 16 - November 12 (daily) Vancouver AquariumThis year, thousands of jellyfish are ‘invading’ the Vancouver Aquarium.Over 15 different species from all over the globe are on exhibit, plusshows, activities and interactive displays.

Jellyfish

MS Society’s Mission: Tobe a leader in finding acure for multiple sclerosisand enabling peopleaffected by MS to enhancetheir quality of life.

BURNABY - LuPhone 604.944.3846

LANGLEY - MichelePhone 604.882.9120Sherry 604.888.7855

MAPLE RIDGE/PITT MEADOWSDavid or GregPhone 604.895.8202

METROTOWN – SamPhone 604.273.7574

NORTH SHORE - Lower LonsdaleGerryPhone 604.987.6701

NORTH SHORE-Contact the MS SocietyPhone 604.689.3144

NORTH SHORE“MS Companions”SheilaPhone 604.990.1314

RICHMOND - PatPhone 604.271.6065

SURREY - BarbPhone 778.373.0284

TRI-CITIES - ClaudettePhone 604.942.5561

VANCOUVERKitsilano - WendyEmail: [email protected] Violet HannEmail: [email protected] Van - DeannePhone 604.432.9111

WHITE ROCK - BridgitPhone 604.541.4091

FAMILY MEMBERS GROUPPhone 604.689.3144

Self Help Groupsongoing & open...


chapter news

THE YOUNGER PERSONSWITH MSPhone 604.689.3144

Hold the Dates

Newly Diagnosed Workshop

Accent Inn3777 Henning Drive, BurnabyOctober 19, 10 am – 3 pmRSVP: 604.689.3144 and ask for Stacey or [email protected]

Come learn more from experienced professionals in the field of MSand hear from a panel of people living well with MS.We thank Safeway Pharmacy and the Province of British Columbiafor their financial support of this workshop.

Great Educational WorkshopBonsor Community CentreSunday, November 17

Join us for a tasty, fun and informative afternoon of WHY and HOWto eat gluten free and how your nutrition affects your MS and yourlovely body and mind. Come curious and prepared to sample andlearn some super yummy, easy recipes you can apply at home. Weare lucky to have two fabulous guests:Cara Roth, Registered Holistic Nutritionist: http://cararoth.com/about-me/about-cara/Ray Porcellato, founder of Cloud 9 Specialty Bakery, one of thefinest gluten free bakeries you will find:http://www.cloud9specialtybakery.com/

Watch MSenger,Facebook and theLMC website fordetails and toregister.Brought to you byyour chapterworking groupCARES


helping ourselves

This is my story. A few years ago, myfamily doctor told me I should elevate myfeet for my edema, while having my usualafternoon MS rest/nap. Also, if this didn’tsolve the problem, we may have to look atother options. Well, this solution worked forquite a while, but I noticed the feeling in mylower legs and feet was changing. (My firstthought was, is this due to MS neuropathy?You know - the tingling numbness/ alteredsensation a lot of us experience.) Early inthe day my feet felt not that bad, but as theday progressed, they had less feeling andwere a slight bit more painful. I was alreadytaking gabapentin for an old injury to someshoulder nerves, which helped with both. Ona recent visit, my doctor offered two choicesfor the edema: to take a diuretic or trycompression stockings. I discounted adiuretic due to my MS bladder, so he

MY SWOLLEN FEET by ron jones

instructed me on the amount of compression I shoulduse. A friend had just given me a perfect pair to try,so I got them out. Holy Cow! Initially, it was adaunting task but I kept at it, and now it’s quite easycompared to those early days.

One of the first things I noticed were morevisits to the washroom, though that only lasted a fewdays. I soon returned to the way I was. The nextthing was that my feet and legs were a lot smaller.But best of all, the altered sensation is almost gone;the tingling is now insignificant as is the numbness.Are all the symptoms gone? No, but they arelessening even now and I am hoping for moreimprovement over the next while.

If you have edema, please talk to yourphysician and ask if and which kind of compressionstockings could help. Some Extended Medical Plansand PWD recipients may have them paid for. It iscertainly worth checking.

Twelve years ago after a bad MS relapse it was difficult for meto walk a block, let alone think about riding a bike 30 km. Over the lastdozen years, I have continued to strengthen my muscles and increasemy endurance. After ten years of supporting the MS Walk, I decided itwas time to raise the fitness bar higher and complete a MS Bike event.

After trying a Stromer electric-assisted bike, I became convincedthat with the boost from this high tech bike, I would be able to increasemy riding duration and FINALLY conquer the hills. I will never wear the yellow Tour de France jersey, but my smilewill be just as big as those elite athletes, when I cross the finish line atthis year’s MS Bike event. I hope I can be an inspiration for others livingwith MS. Let’s keep pedalling, to help raise money for research and theservices provided by the MS Society. I would not be riding todaywithout their support.

If you, or someone you know, would like to try one of the Stromerelectric bikes, visit the Stromer tent at Nat Bailey Stadium onSeptember 22nd.

Why I am riding AGAIN… by marilyn lenzen


helping ourselves

Trigeminal Neuralgia (TN) is at timesexcruciating facial pain, considered one of themost painful sensations in human experience(Mayo Clinic). It affects 2% of those with MSand is different for each person. For some, it’smanageable, for others, it’s sporadic, betweenintensely painful stabbing or burning sensationsand long pain-free periods. Still others haveongoing extreme pain and discomfort. BothJulia and Brenda share their experiences:Julia: When first diagnosed with MultipleSclerosis twenty years ago, double vision andbalance issues were my initial symptoms.These have continued and worsened. Aboutfive years ago jaw pain stopped and startedfor no apparent reason. After severalemergency trips to my dentist, no apparentdental issues were found, and TrigeminalNeuralgia in my gums was diagnosed. My TNhas been relatively manageable, by using onlyextra strength Tylenol.

Brenda: The ‘jabs’ began in the 1990s. Initially,acupuncture helped but the pain returnedyearly or so. After my acupuncturist said thatsomething had changed and he could no longerhelp, I requested my dentist remove aperfectly good tooth, desperate for relief. Thespecialist she referred mentioned an earlierpatient had something called TrigeminalNeuralgia. Ah – I checked it out and it was MSrelated. My neurologist prescribed gabapentinuntil stronger medication (Topomax, morphine)was necessary. She then referred me to a

TRIGEMINAL NEURALGIA

surgeon, who suggested I have a rhizotomy,burning the offending nerve, done in day surgery(http://drhoney.org/rhizotomy/). It left my right jawnumb, and with a tendency to dribble. However, itwas certainly preferable to the pain! Nine yearslater, it has returned, and my options are to go onstronger meds again or have another rhizotomy. Asno additional dangers are indicated, I’ll go on thewaiting list to have it done again. The medicationsare turning me into a zombie.

If this sounds familiar and you have concerns,check out The Trigeminal Neuralgia Association ofCanada website (http://www.tnac.org/), whichincludes detailed information, offers a newsletter,and has a support group site - both online and inperson for those living in the Vancouver area.

by julia hall and brenda worthington

The Spinal Cord Injury website has its own “craigslist!” Check it out at:http://sci-bc-swapnshop.ca/


helping ourselves

It can be very uncomfortable for care-partners to push a wheelchair that is either loweror higher than their comfort level height, possiblyinviting back strain, neck strain and poor posture.Easy-to-use handle extensions may just be thesolution.

Stroller handles attach quickly and easilyto all major brands of manual wheelchairs, usingball bearing pins. They will be installed on yourchair, ready for use at a moment’s notice. Notools required.

Stroller Handles for Wheelchairs by dorit hoffmann and linda macgowan

A quick release cam handle allows foreasy adjustment, better steering and control forpeople of all sizes, a push down with one handmakes it easy to go up and down curbs, evenhigher ones, giving you better leverage. Thesedevices can add up to 8 inches in height and willaccommodate up to 300 pounds.

Stroller handles are essential whennegotiating cobblestones, uneven terrain,unpredictable stair heights and widths. They areeasily removed when your chair needs to befolded for placement in the car or when travelingon an airplane. Stroller handles can be purchasedfrom any mobility device vendor. The cost may bepartially covered under extended health benefits,or see if you qualify for help from the MSSociety’s Equipment Provision Plan.

It is a noticeable improvement to be ableto change hand positions and – as is the distanceto the chair, you’ll be able to walk with a longerstride, maybe even run, and going downhill allowsfor full control without getting white knuckles.

An extra bonus: The “pusher” is able tostrengthen all the shoulder muscles and the“pushee” can sleep comfortably while you watchyour favorite movie.


The Lower Mainland Chapter acknowledges the financial assistance of the Province of British Columbia.

Canada Post Publication Number 40063333

Return Undeliverable CanadianAddresses to Circulation Dept:1501-4330 KingswayBurnaby, BC V5H 4G3

kids up front

Are you a family with children 18 and under looking for fun activities? Our Chapter has a partnershipwith KUF which is a charitable organization that provides access to arts, culture, sports and recreationfor kids who otherwise would not have the opportunity. If you are interested please call 604.689.3144or email [email protected].

jean shows her artwork

shibley-fry brings along her best friend abetew wears her enthusiasm

shared voices fall 2013 - ms societyshared voices fall 2013 3 voices i took a pair of my wife’s...

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