SHARED VOICES “the voice of the lower mainland chapter” Summer 2010 Dateline late November 2009 – I have just returned from a wonderful, restful, virtual vacation at Rio Caliente in Mexico. I was on this vacation for two weeks, but had an open-ended ticket so I could have stayed longer had I wanted. No cheap seats for me. First class - no packing, no airports, no planes and it put no dents in my credit cards, pretty perfect. But let’s go back a month – I am sitting in my apartment and I am not a happy camper. I am caught in that grey fog thing. I am telling pretty much anyone who will listen that I think I might be depressed. Talking on the phone with my long time friend Billie, she says, “You are burnt out. You have all the signs and symptoms.” We hang up and I think to myself, that was the stupidest thing she’d ever said. I don’t have a real job, I spend all day sitting in a wheelchair, I am not getting anything done, and that is what I am depressed about, so how can I be burnt out? I am miffed because she is being stupid, but I Google ‘burnout’ anyway and there it is in black and white. I read from http:// www.helpguide.org/mental/ burnout_signs_symptoms.htm “When you’re burned out, problems seem insurmountable, everything looks bleak, and it’s difficult to muster up the energy to care - let alone do something about your situation. Burnout is a state of emotional, mental, and physical exhaustion caused by excessive and prolonged stress. It occurs when you feel overwhelmed and unable to meet constant demands. Burnout reduces your productivity and saps your energy, leaving you feeling increasingly helpless, hopeless, cynical, and resentful.” Okay, she was right. I read on and sure enough I have all the signs and symptoms. How is this possible? Well, duh, I am the same woman who has been saying for years that living with MS is a full time job. Because everything takes so long. There are the endless medical appointments, endless health upkeep, endless organizing, endless planning, and there is the task of supervising the people who are helping you. Meanwhile, just the tasks of daily living take so much time - put laundry in the washer, then put it in the dryer, and then it needs folding. A days work right there, add emptying the dishwasher and it’s a long days work. Never mind that making the bed is an Olympic event. And it seems to never stop nor My MS Burnout results in a Virtual Vacation by ellen frank rio caliente continued on page 11...
Transcript
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 ”Summer 2010
Dateline late November 2009 – I havejust returned from a wonderful, restful, virtualvacation at Rio Caliente in Mexico. I was on thisvacation for two weeks, but had an open-endedticket so I could have stayed longer had Iwanted. No cheap seats for me. First class - nopacking, no airports, no planes and it put nodents in my credit cards, pretty perfect.
But let’s go back a month – I am sitting inmy apartment and I am not a happy camper. Iam caught in that grey fog thing. I am tellingpretty much anyone who will listen that I think Imight be depressed. Talking on the phone withmy long time friend Billie, she says, “You areburnt out. You have all the signs andsymptoms.” We hang up and I think to myself,that was the stupidest thing she’d ever said. Idon’t have a real job, I spend all day sitting in awheelchair, I am not getting anything done, andthat is what I am depressed about, so how can Ibe burnt out? I am miffed because she is beingstupid, but I Google ‘burnout’ anyway and thereit is in black and white. I read from http://www.helpguide.org/mental/burnout_signs_symptoms.htm“When you’re burned out, problems seeminsurmountable, everything looks bleak, and it’sdifficult to muster up the energy to care - letalone do something about your situation.Burnout is a state of emotional, mental, andphysical exhaustion caused by excessive andprolonged stress. It occurs when you feeloverwhelmed and unable to meet constantdemands. Burnout reduces your productivity
and saps your energy, leaving you feelingincreasingly helpless, hopeless, cynical, andresentful.”
Okay, she was right. I read on and sureenough I have all the signs and symptoms. Howis this possible? Well, duh, I am the samewoman who has been saying for years thatliving with MS is a full time job. Becauseeverything takes so long. There are the endlessmedical appointments, endless health upkeep,endless organizing, endless planning, and thereis the task of supervising the people who arehelping you. Meanwhile, just the tasks of dailyliving take so much time - put laundry in thewasher, then put it in the dryer, and then itneeds folding. A days work right there, addemptying the dishwasher and it’s a long dayswork. Never mind that making the bed is anOlympic event. And it seems to never stop nor
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 changeswith the mailing label to the aboveaddress.
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
Across1. Speech therapy didn’t help4. Highest rates in the world5. Discoverer of MS7. A disease modifying therapy8. Lost control10. Alpha, Beta, and Gamma11. Hope for a cure14. MS attacks15. A cooling exercise17. Protective nerve covering18. An Italian vascular surgeon20. Diagnostic equipment21. Damaged myelin23. Ancient mind-body practice24. They are 3 times more likely
Down
1. Billy Talent for MS2. RONA MS bike tour3. From the inner ear6. MS shuffle9. Feeling better12. Nerve fibres13. I’m so tired!16. Famous actress19. EPA and DHA22. Low-fat diet
crossword
Shared Voices Summer 2010 3
voices
I have always thought of myself as aperson who makes the best of what I have. Afterbeing saddened for years because I could nolonger mow the lawn, I finally had an “aha”moment and got a John Deere lawn tractor so Icould. I love the freedom and the smell offreshly mown grass as I zip around the yard.
The other day my 4-year-oldgranddaughter was visiting and watched withinterest as I finished the lawn. When it cametime to get off the mower, I had great difficultymoving my legs over the blades and getting mybalance as I reached for my walker. Kylie lookedworried as I struggled and finally she said,“Gramma, you can’t walk so good can you?”
I looked at her sad little face and Ithought this might be an opportunity for a talk.“No Kylie, Gramma’s legs don’t work very wellbut I can do lots of other stuff well.”
“Like what?” she asked. “Well…..(thinkfast, I thought)….Gramma can sing you songsand read you and your sister stories…..”
Before I could continue, she piped in with“Yeah. And you do school with me real good andyou can ride your scooter real good and you canhelp me train Ash-Lee real good (cheeky one).” Ihave been trying to spend a few hours a weekone-on-one with Kylie practicing numbers andletters and generally helping prepare her forschool. She loves it and she loves being myassistant dog trainer, too.
This day she made me so proudbecause she saw right away what I was tryingto teach her. She understood the importance oflooking at your glass half full and not halfempty.
She grabbed the handles of my walkerto help steady me and laughed as we walkedslowly towards the house for a well deservedsnack. And I realized how lucky I am to beloved by this super cool kid.
A LESSON WELL-LEARNED by denise howse
kylie shows ash-lee what to do
You may like:
Good for camping or using the “facilities”hygienically anywhere and anytime:www.whizeasy.com or toll free 1.877.EZE-WHIZ(393.9449).
Thank you to member Sarah Lazar for this info.
The Easy Whiz
Mothers connecting & helping each otherthrough parenting with MS.
http://www.momswithms.com/
Moms with MS!!
book review
Shared Voices Summer 20104
IN THE BOOKWORM’S CORNERreviewed by anne stopps
“Once I did not know the word cope, now I know it too well. But as my bodyweakens, my spirit goes strong and occasionally soars.” So begins the tale ofRichard M. Cohen, the American veteran writer, TV producer and journalist whoat 25 was diagnosed with Multiple Sclerosis. This is his 30 year struggle to copewith career, family and declining health. Cohen has written a “reluctant memoir,a self-conscious stab at an important subject.” He goes on to say the book isabout “surviving and flourishing, rising above fear and self doubt and of course
anger.” Cohen tells his tale with much humor, saying, “I am just a guy with a fragile grip on my ownlife, peering through the fog that rolled in during a dream long ago and does not clear away.” Hegives good advice: “Run with MS, not away from it. We move forward with grace when the wind is atour backs.”
Cohen is a fine writer; his book is a brutally honest portrait of living through and learning froma debilitating illness. Blindsided explores the effects of his illness on raising three children and hisrelationship with his wife, Meredith Vieira (host of Who Wants to be a Millionaire and The TodayShow).
PEOPLE WITH MS - WITH THE COURAGE TO GIVEby Jackie Waldman2003 Conari Press
Waldman, whose own story of living with MS opens this book, has collected 24moving stories of men and women of all ages who have found the courage to doold things in new ways and new things that improve the lives of those aroundthem. Stories like Zoe Koplowitz, a New Yorker who runs marathons. “I decidedthat whether I had a week or a day, I needed to make the best of it, the most of
it”; Dr. Alicia Conill, who when she could no longer practice as a GP, founded the Conill Institute forChronic Illness. It organizes seminars for future doctors and caregivers so they can fully experiencethe challenges of people living with a disability; or Loia Feuchter, a teacher who taught for 23 yearsafter her diagnosis, until MS slowed her down, and forced her to retire. She then started a knittingguild to make blankets for a children’s cancer ward; teddy bears to hand out by the local firedepartment for scared kids; lap blankets, scarves, etc. all to help people in need. Loia started with 6members, she is now up to 54.
I think you get the picture. 24 lovely stories of a diverse group of people who may make youstop and think how perhaps you could give back to your community in one way or another. It’s agood (inspiring) read.
BLINDSIDED – LIFTING A LIFE ABOVE ILLNESSA Reluctant Memoirby Richard M. Cohen2004 HarperCollins Publishers Inc.
All books reviewed by the Bookworm are available free of charge (also mailed free) from the MSSociety Library. Call 604.689.3144 and ask for the librarian.
Shared Voices Summer 2010 5
Mike G. in Mississauga writes, “With resultsyears away, the thousands affected just cannot
afford to wait this long as this delay willessentially seal their fate for the rest of their
lives.”
How Are PeopleResponding tothe CCSVI Rally by ralph hurtig
On May 5, 2010, hundreds of patients ralliedacross Canada demanding funding andtreatment for CCSVI. Rallies were planned bygroups over the internet and carried out in mostmajor Canadian cities including Victoria,Vancouver, Edmonton, Regina, Toronto, Ottawaand Halifax. This day has been marked as“World CCSVI Liberation Day.” People aresaying they can no longer afford to wait forresults on these studies. Several people aregoing outside Canada to seek treatment costingthousands of dollars.
The Canadian government also felt thepressure from the MS Society who, on May 5,2010 lobbied for the Canadian government toprovide $10 million for the research into CCSVI.The president of the MS Society, Yves Savoie,
wants the Canadian government to play aleadership role by funding CCSVI research.
What are people saying about our fight forCCSVI recognition? Many comments posted inresponse to the CTV.ca news article titled, “MSpatients rally to demand CCSVI treatment” weresupportive. Some were asking us to wait for thestudies to be completed before we seek anytreatment.
Here is what they said -
One responder named MP asked us to “Think ofthe millions of dollars spent and years of
research, only to find out that the treatmentrelies on a little wire-mesh tube that has been in
use for decades.”
Graeme said that “This is a tough one. On theone hand, I completely understand not wanting
to offer a procedure that so far only hasanecdotal evidence to support it. On the otherhand, this is a disease that worsens in time, so
we can’t just stall.”
Bryan states that “A lot of work is going intothese trials to see if they work - but until weknow they work, and are safe - it would be
foolish in the extreme to start giving them topatients outside of controlled trials.”
To summarize, the public is very sympathetic to our rally that calls on the government to openup funding immediately, so that patients can be tested for CCSVI. We also have a strong commitment
from the MS Society to lobby the Canadian government for more support.
Shared Voices Summer 20106
Once in a while something happens allin one day to show a person how lucky she is.My best friend, Dorit, knew of my not so secretwish to go on the zip line during the Olympics.However, there were 80-odd stairs. On March17, she emailed a mutual firefighter friend,Derek Sampert - could he possibly get somecolleagues to help? He answered right awayyes, if his captain approved it. A few hours laterhe did, even specified a time! Dorit spilled thebeans and told me to be at the zip line at three.
True friendship, firefighters and the zip line:Does life get any better?
The guys showed up at the exact right time,uniform, shiny red truck and all; another personhad phoned CTV, who filmed it and put it onthat night’s news!
I am still shaking my head at their giving,thoughtful actions on that magical day: Dorit,Vancouver’s Bravest, and the person whocalled CTV pulled together and made animprint on everyone there. So much more thanjust an item off my bucket list. Thank you all!
by brenda worthington
Let’s remember the joy of February and March Maintain the Extraordinary Feelin
Shared Voices Summer 2010 7
On January 4, 2010, Lelainia Lloydlistened nonchalantly to the messages on hervoicemail. One caught her attention, “We arepleased to inform you that you’ve been chosenas a torchbearer for the first ever ParalympicTorch Relay.”
Throughout her life, Lelainia hadwatched the Olympics taking place in variouscountries on various continents, dreaming thatone day she could be part of such an event.Lelainia was a “Blue Jacket” volunteer for theOlympics in February. She was stationed at BCPlace Stadium for the Opening, Closing, andVictory Ceremonies where she was shoulder toshoulder with the athletes. She served on aspecialized team of 30 volunteers selected tobe Athletes’ Marshalls.
What effect did this intense schedulehave on her MS? Lelainia had completed acourse of Chemotherapy at the end of August2009 which failed to put her into remission. Sheexperienced a relapse within a relapse inDecember. In order to manage her symptomsand maximize her energy levels, she made sureher schedule allowed time to keepappointments and to rest on her days off. Herstrong desire to live her dream overshadowedany pain or discomfort. The two week transitionbetween the Olympic and Paralympic Gamesallowed for a much needed recovery period. The symbol of the Paralympics, the “agitos”, inLatin, means, “I move.” The three curves of theAgitos are red, green, and blue representingthe hues that most commonly appear on flagsaround the world. Despite the presence of oneor more disabilities in the life of each athlete,their performance in Vancouver was aninspiration to all.
The theme of the 2010 ParalympicGames was “One Inspires Many.” The 600Canadians selected as Torch Bearers werechosen for their ability to inspire others in theirdaily lives. Lelainia was torchbearer #147 andtook part in the 24 hour torch relay in downtown
A Part of Olympic History by linda macgowan
To learn more about her Games timeexperiences, please visit her blog at http://
tatterededge.blogspot.com
Vancouver. She carried her torch proudly at2:35 a.m. down Granville Street. Family andfriends held a night vigil to encourage and toshare in this moving event.
Lelainia is now the proud owner of herParalympic torch, thanks to the kindness andgenerousity of her in-laws. She feels incrediblyhonoured to have had the opportunity to be partof Olympic and Paralympic history.
and of rising above ourselves, throughout 2010!ng of the Oympics and Paralympics
lelainia carries the paralympic torch
MS Society’s Mission: Tobe a leader in finding acure for multiple sclerosisand enabling peopleaffected by MS to enhancetheir quality of life.
BURNABY - LawrencePhone 604.552.5560
METROTOWN – SamPhone 604.273.7574
LADNER/TSAWASSEN - ElainePhone 604.946.6658
LANGLEY - DennisPhone 604.533.7655
NORTH SHORE - Lower LonsdaleGerryPhone 604.987.6701
NORTH SHORE-Contact the MS SocietyPhone 604.689.3144
NORTH SHORE“MS Companions”SheilaPhone 604.990.1314
Tabbouleh is a tasty, easy to prepare salad eaten warm orcold. When I found my first Tabbouleh recipe, I was unaware that it isone of the most popular Middle Eastern salads. I decided to usequinoa to replace the bulgur used in traditional recipes. For variety Ilike to add other fresh herbs and vegetables such as fresh basil orlightly grilled zucchinis and mushrooms. Let me know what varietiesyou come up with and like best.
Some background facts may interest you concerning thishealthy grain. Quinoa was used over 5,000 years ago by the Incashigh in the Andes Mountains as one of their staple crops. In the1980s, it was introduced to North America as a superior, nutritiousfood and cultivated in Boulder, Colorado. Although quinoa istechnically a seed, it is eaten like a grain and is related to spinach.You can find it in bulk food sections of the supermarket or in yourlocal health food store. Considered to be a complete protein, it hasall the necessary amino acids required for your nutrition. Vegetariansoften use this food as a protein replacement for their meals. Quinoais also gluten-free, making it safe for celiac patients or those whowish to eliminate gluten from their diets.
Quinoa Tabbouleh by ralph hurtig
Ingredients:- 2 cups water- 1 cup quinoa- 1 teaspoon (sea) salt- ¼ teaspoon cayenne pepper- 1 clove garlic, minced- ¼ cup olive oil- ¼ cup lemon juice- 1 cucumber diced- 2 tomatoes diced- 2 bunches green onions, diced- 2 carrots, grated- 1 cup fresh parsley, chopped
1. In a saucepan, bring water to a boil. Add quinoa and apinch of salt. Reduce heat to low, cover and simmer for15 minutes. Allow to cool to room temperature, then fluffwith a fork.
2. Meanwhile, in a large bowl, combine olive oil, sea salt,lemon juice, tomatoes, cucumber, green onions, carrotsand parsley. Stir in quinoa.
Directions
Shared Voices Summer 2010 9
On April 10th more than 140 people joined us for our Family Event at Science World. Theday was full of fun, snacks and science. The number of participants doubled this year and
the feedback and photos truly reflect the spirited atmosphere:
family day
Go Bananas, Whole Foods, Vancouver Aquarium,McDonalds, Aldergrove Zoo, Aquatic Services Richmond,Capilano Suspension Bridge, Crash Crawly’s, Maplewood
Farms.
“I asked the kids if they had fun and I got a firm ‘YES’ theydid. There are so many things to see and do, not only for thekids, but adults can play too!!! It was a nice touch finishing ourvisit going to McDonalds…just goes to show you that you arenever to old to play children’s games, especially the ones thatmake you think!”
“From beginning to end we had a blast!! Wechecked out everything on each level from howmuch we weighed in comparison to variousanimals to shooting pucks & guns and listening toour heart beats through a drum! We took theopportunity to watch the film Ultimate Wave –Tahiti and then enjoyed lunch at McDonalds! Itwas a pleasant, informal day enjoyed by the wholefamily. It is always great for our children to be in anenvironment where they are not the only ones witha parent with disabilities.”
“Our sons had a lot of fun damming the waterin the simulated “river” – always a favorite,getting wet and that feeling of power when thewater slows down or stops completely, goofingaround with the anti-gravity mirrors, andcreating music through various differentmeans, among other things. They haven’t beento Science World for many years so it was avisit down memory lane. I admit the illusion ofjumping in the air created with the anti-gravitymirror, some ingenuity, and the help of myhusband was very liberating. Walking may be achallenge but yes, I can jump!”
We would like to thank the following organizations fortheir support:
Shared Voices Summer 201010
out & about
Exercise your soul, your ears and your body.
Vancouver Symphony Orchestra
July 11: 7:30 - 9:30 pm Symphony at Deer Lake. This free concert is good for all ages: bring yourpicnic. Roads close at 6:30 pm, but the parking lot at Shadbolt, off Deer Lake Avenue, is reserved forpeople with disabilities and is accessible even after road closure.
For further information call: Shadbolt Centre 604.291.6864
Vancouver Folk Music FestivalJuly 16, 17 & 18
Friday 5:00 am - 11:00 pmSaturday 10:00 am -11:00 pmSunday 10:00 am -11:00 pm
This is considered the most accessible event in the City of Vancouver for people with any type ofdisability. Some valued features include raised covered seating to accommodate hot or rainyweather; an access tent where you can lay down for a rest, have a flat tire on your wheelchairrepaired, or charge your scooter or wheelchair when juice is running low. There are wheelchairaccessible Porta Pots throughout. At each stage, there is an access area roped off that ensures sunor shade, reasonable hearing and viewing of the events. The evening stage events are signed for thehard of hearing.
Bring your own picnic or enjoy a variety of international dishes at the food fair. The market place sellspottery, clothing, jewellery, candles, baskets and bags. A large variety of world music (not only folkmusic) is presented at 8 different stages throughout the day.
Community tickets can be purchased through a representative of the MS Society. You musthave a ticket for yourself and your attendant.
Ticket prices
Friday $22.00 eachSaturday $27.00 eachSunday $27.00 each
A weekend pass purchased before June 11 costs $133.00. With such a pass your attendant goesfree and you can have a different attendant for each day. If you are planning to attend most of thefestival, this is the most economical way to purchase your tickets.Weekend pass for Seniors (65+) $59.00Weekend pass for Students (with student ID) $80.00
For more information visit http://thefestival.bc.ca or call 604.602.9798
Shared Voices Summer 2010 11
do all my efforts seem to make much difference.And I also want to see my family and friends.And so, I conceded, I was burnt out. Sincequitting the job was not an option, what to do?
I knew, a vacation. I’d worked as a travelagent for all those years, so turning a realvacation into a virtual vacation was easy. Idecided on Rio Caliente because four friendswere heading there in a few weeks and it was inmy mind. I had sent a number of people thereand they all had a good time. But the thing is,my pretend destination could be anywhere: thepoint is I am not home. It’s not that I want to besomewhere else, I just want my expectations ofwhat I am supposed to accomplish in any givenday to disappear. Occasionally I amuse myselfpretending I am actually in Mexico, and had Iwanted to I could have spent all sorts of time onthe computer doing Mexico and eating Mexicanfood at local places, but for me it is aboutputting daily life on hold.
After three days I began to relax. I’dcheck my email, look at events and say out loud,“I can’t go there, I am in Mexico.” I stoppedtrying to do things like go out or be productive.In my mind, I was out of town. One day Idiscovered to my delight that I could sit in thehot springs as long as my heart desired withoutmy legs turning to mush. Another week passed, Iscreened calls and the very few people who Iwanted to see I sent my private jet to bring themto Mexico for dinner. I watched a lot of TV, whichhas the same effect of numbing my brain as lotsof heat, and sunshine does. Then I discovered Icould hike in the hills. I unwound and camehome believing I could begin life with anotherfresh start.
All in all it is a perfect vacation, and as aretired travel agent I highly recommend it. Mightyou need a virtual vacation in the near future?
cover story continued
Thank you all very much for your supportat our AGM May 15th, 2010. I will hazard a guessmost of you didn’t just come to hear our annualreports, but to get some updates on CCSVI herein Canada/BC.
It was nerve racking to know I had to speakin front of some 200+ peopleanticipating....umm...vocal passion. I don’t haveMS but have been working with people who dofor 25 years. Yet I cannot even imagine whatmost of you are feeling since the exciting newconcept of CCSVI and the “liberation” treatmentsurfaced. It must be incredibly tough to knowwhat to believe and who to trust and what to do.Your curiosity and determination have broughtlight to some missing links within thisorganization, especially when it comes tocommunication. We are quickly trying to connectthe dots so you will be up-to-date as soon asnew information is available, as well as pass
from the chairalong concerns, thoughts and questions youmight have. Please know, all of us on the LMCBoard of Directors are on first name basis withMS, either directly or through somebody we careabout, and would love nothing more than seeingMS disappear. I would just like to encourage youto do as much research as possible with asmany different sources as you can and ask theright questions if you consider treatment; thingsare happening so fast right now and a fewmonths can make a huge difference. We have afacebook page (www.facebook.com/pages/MS-Society-of-Canada-BC-Yukon-Division/17391571590#!/pages/Lower-Mainland-Chapter-of-BC) we will keep updated, you cancontact the MS Society and you arealso welcome to email me at [email protected] again for your compassion and care,kindly, Dorit Hoffmann, LMC Chair
Return Undeliverable CanadianAddresses to Circulation Dept:1501-4330 KingswayBurnaby, BC V5H 4G3
The Lower Mainland Chapter acknowledges the financial assistance of the Province of British Columbia.
How we celebrated MS Awareness Month
City Council announces May MS Awareness Month in thefollowing communities: North Vancouver, Surrey, Pitt Meadows,Vancouver, Port Coquitlam, Richmond, Vancouver, NewWestminster, White Rock and West Vancouver.
Cities show support by hoisting the MS Society Flags at thefollowing City Halls: Richmond, Burnaby, Port Coquitlam andNorth Vancouver. Also, look for a cluster of flags in Vancouverat Main & Terminal and Denman & Davie.
LMC participated in the carnation campaign
LMC Self Help Groups entered photos of theirgroups into MS Society’s promotional contest.
May 14th A Meeting for the Chapter Chairs washeld in Coquitlam.
May 15th The LMC and BC and Yukon DivisionAnnual General Meetings and EducationalConference was also held in Coquitlam.
May 27th World MS Day: LMC adds its voice tothe Global Movement.
more chapter initiatives...
ms flags flying at the corner of denman & davie
port coquitlam mayor greg moore announces may ms awareness month with
