shared voices - ms society€¦ · multiple sclerosis — a self help guide by judy graham,...
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the voice of the lower mainland chapter
Shared VoicesWinter 2016
The ABCs of Gifting
Sitting this third day of five at respite, it’s a perfect chance to think. This “Respite Hotel” has a front desk, dining room, visiting area, open area and almost each room has its own bathroom (a few share) and TV. It’s good for Dorit to have space a few times a year, which is also a form of giving. Here are some committee suggestions for giving:
Gifting to Yourself: Health & Happiness
Studies correlate happiness and physical health. Chronic disease is correlated with stress. Can steps to increasing happiness affect our MS? It sounds worthwhile trying. After all, is there a downside? Shaun Achor, in a CBC interview, says in just 21 days, six exercises can change a pessimist into an optimist. And within 30 days, those habits change the neuropathways of our brains and turn us into lifelong optimists.
1. Gratitude Exercises. Write down three things you’re grateful for that occurred over the last 24 hours. They don’t have to be profound. It could be a really good cup
of coffee or the warmth of a sunny day.
2. The Doubler. Take one positive experience from the past 24 hours and spend two minutes writing down/pondering every detail about that experience. As you remember it, your brain labels it as meaningful and deepens the imprint.
3. The Fun Fifteen. Do 15 minutes of fun cardio every day, like gardening or walking the dog. The results can be as effective as taking an antidepressant.
4. Meditation. Every day take two minutes to stop whatever you’re doing and concentrate on breathing. Even a short mindful break can result in a calmer, happier you.
5. Conscious act of kindness. At the start of every day,
Three Ways of Gifting
send a short email or text praising someone you know. Our brains become addicted to feeling good by making others feel good.
6. Deepen Social Connections. Spend time with family and friends. Our social connections are one of the best predictors for success and health, and even life expectancy.
Begifting all Year
Write a card that begifts someone an event or experience. Some ideas: Begift a banana loaf within the next 6 months, two hours of babysitting at a mutually agreeable time, a cup of tea on a cold rainy afternoon in January, a salad lunch in July, a monthly phone call or a movie of your choice; a matinee at a theatre close to your home.
Shared Voices | Winter 20162
The Flicker grows to a Flameby brenda worthington
Editorial
Cont’d from Page One
4720 Kingsway, Suite 1103, Metrotower II, Burnaby, BC V5H 4N2 604.689.3144 1.800.268.7582 [email protected] mssociety.ca/chapter/lower-mainland-chapter
Editorial Committee:
Brenda Worthington (Editor) [email protected] Hoffmann (Co-Editor) [email protected] McGowan [email protected] Stopps [email protected] Hurtig [email protected] Frank [email protected] Jones [email protected] Hall [email protected]
Contributors:
Writers: Denise Howse, Madeleine MertlLayout: Katie Lapi
Shared Voices is published four times a year by the Lower Mainland Chapter of the MS Society of Canada, BC and Yukon Division. The contents may be reprinted with customary credit. Your submissions to Shared Voices are encouraged. Forward these and any address changes with the mailing label to the above address.The MS Society strongly believes in the freedom of speech. The articles published in Shared Voices present different points of view, and are not necessarily shared by the MS Society, Lower Mainland Chapter.
Shared Voices
Dr. Hashimoto says even if you cannot nap, it is important to find a space to rest.
Christmas shopping is stressful at best; make a list of things you’d like to get. And take people up on their offers to help; they can search for your items and reach the top and bottom shelves. Twice the fun, half the hassle.
Surprise your partner by ordering dinner in, no work, no dishes, time to connect.
Enjoy your Holidays!
Last winter, we reviewed Dr. Norman Doidge’s book, The Brain’s Way of Healing. Here is the promised follow-up on the intriguing PoNS device, which had dramatically improved MS symptoms in profiled patients. Helius Technologies (heliusmedical.com) were then conducting studies in Quebec and Pennsylvania. This year they published results of a second study and compared them. All candidates had secondary progressive and the more affected group had better results. Wow. In August, they opened a site in Surrey, BC! Exciting...and in late October, they were accepted by the International Standards Organization (ISO). Yes! And, in November Helius announced an upcoming PSA
on traumatic brain injuries, for which the PoNS device was also effective. No drugs, no surgery — just a device on the tongue could improve walking and talking. It’s unimaginable. Stay tuned for more.
Each step the flicker of hope gets brighter. Happy New Year!
A gift tag on the package, piece of paper or card makes it fun, creative and personal and you will receive more than you give!Conserving your Precious Energy
If you are like me, energy is a most valuable resource so I gauge what I need to do versus what I want to do. Some days, the bar is low; when just loading or unloading the dishwasher I consider myself a contributing member to my family.
Shared Voices | Winter 2016 3
Is Exercise a Cure For MS?Voices
by ralph hurtig
CBC News recently featured a scientific study where researchers at the Ottawa Hospital and the University of Ottawa have discovered a protein (VGF Nerve Growth Factor Inducible), when triggered by running, could repair brain damage in mice. The scientific journal Cell Reports published something even more interesting: VGF Nerve Growth Factor additionally assists with the healing of the protective shielding of nerve fibres called myelin. Researchers are saying running mice lived longer and running promoted myelin repair.
For me, this finding is a revelation. Running may have helped my body promote re-myelination in my brain which possibly prevented me from many debilitating effects. I’ve been running, swimming and cycling since I was diagnosed with MS in 2001. My GP prescribed antidepressants to help me cope with some of the effects of MS. She also promised to reduce the meds if I started a cardio exercise program. I gradually increased my workouts to about 40 minutes 3 times per week. She explained if I could
run for 45 minutes, she would cut my anti-depressants by half as it promotes the release of serotonin. I worked hard to keep up with her schedule but things didn’t always go as planned. Fatigue and dizziness affect me on a daily basis and usually comes unannounced. I fell one time on a run as a result of dizziness and cracked a rib. I decided then to use a treadmill where I could hold on to something should I lose my balance.
I found this news exciting for myself, but ironic for those
of us who can no longer run. However, there are many other forms of exercise many can do to increase cardio such as swimming or stationary cycling. As MS is a very individualized disease, it’s best to consult a physical therapist.
Running may have
helped my body promote
re-myelination in my
brain which possibly
prevented me from many
debilitating effects
“Sport” by flickr/Francois Peeters (CC BY-ND 2.0)
“Reading is to the mind what exercise is to the body.” — Joseph Addison
Shared Voices | Winter 20164
this. I have often met people who say things like, ‘I tried it for three months but it didn’t work’. My advice is to keep the faith and stick to it. The chances of getting worse if you don’t are overwhelmingly high. It’s just not worth the risk.”
A quote in the book really hit home for me: “there is no suggestion that anything in this book constitutes a cure, though it could well be called healing. The aim is to strengthen the immune system without resorting to drugs.”
I am waiting delivery of her latest book, Managing Multiple Sclerosis Naturally — A Self Help Guide for Living with MS. Look for the review in the spring issue of Shared Voices.
In The Bookworm’s Cornerby anne stopps
Bookworm
Graham developed “a
self-help management
strategy with which to
wage war on MS.”
Multiple Sclerosis — A Self Help Guideby Judy Graham, Thorsons an Imprint of Harper Collins Publishers, 1981.
I thought it was time we took another look at Graham’s classic book: Multiple Sclerosis A Self-Help Guide, published way back in 1981. Before the MRIs of today, the diagnosis was usually an unpleasant lumbar puncture and the medical profession touted diagnosis as bleak (there were no treatments).
Graham worked as an editor, researcher, TV producer for the BBC and wrote six books (three on MS).
Judy was 26 in 1974 when she was diagnosed. There was little thought that lifestyle changes of diet and exercise would have any influence on the progression of the disease. She researched as she simply could not accept nothing could be done.
One of her first findings was Dr. Roy Swank of the Oregon Health Sciences University in Portland, who since 1948 championed the low saturated fat diet. His clinical studies showed MS patients who ate less than 20 grams of saturated fat showed significantly less deterioration. Maverick doctors Professor E.J. Field and Dr. David Horrobin, in 1973 found essential fatty acids played a major role in MS, reducing the
severity, frequency and duration of attacks in the group taking sunflower oil.
Graham developed “a self-help management strategy with which to wage war on MS.” The elements: a healthy, low fat diet rich in essential fatty acid such as sunflower seed oil or evening primrose oil supplements; vitamin supplements; testing for food allergies and sensitivities; regular exercise or yoga; maintaining a positive attitude to life; brain exercises and stimulation; adequate rest; satisfying relationships with other people and finally, resisting aggressive drugs which weaken the immune system.
So how is Judy doing now, 35 years later? In a recent interview on msdietforwomen.com, she said, “I can still walk, but not very far. I rue the time I broke the diet and often wonder how much better I would be now if I had stuck to it religiously. I am now back on a diet free of gluten, dairy and sugar. Almost straight away I had more energy and zest for life. I also go to a Pilates class twice a week, and favour other things which can help MS such as meditation, reducing stress and complementary therapies such as acupuncture.
My aim is to stick firmly to the diet, take supplements and exercise. I strongly advise those newly diagnosed with MS to do
Judy Graham
Shared Voices | Winter 2016 5
New Year’s Eve Slow-Cooker Pork Ribs
The meat just falls of the bone, it is so tender. It’s very good as leftovers for pulled pork sandwiches.
Directions:
1. Rub your favourite spices on the ribs (I like steak spice).
2. Stand the ribs up around the wall of the slow cooker working towards the center of the cooker, as much as it fits, pour a can of cola over it, set on low for seven hours.
3. When finished, empty the liquid and slather the ribs (while in the cooker) with the barbeque sauce of your choice and cook for 1 hour.
Recipes
by ron jones
by ron jones
Ingredients:
1½ pounds boneless chicken breast3 medium carrots, peeled and diced1 stalk celery, diced3 medium onion, diced2 cloves garlic, minced1 cup low sodium chicken broth1 cup water2 bay leaves1 tsp. Italian seasoning, or more to taste2 cups cheese tortellini or any pastaChopped fresh parsley for serving, if desired Salt and pepper to taste
Directions:
Add all of the ingredients to a slow cooker except for the pasta. Cook on low for 6 hours. Remove the chicken, shred or cube and put back in. Add in pasta and cook for 15 minutes or until cooked all the way through, add salt and pepper to taste. Discard bay leaves and serve immediately with chopped parsley for garnish.
“Pulled Pork Sandwich” by flickr/paulk (CC BY 2.0)
Chicken Noodle Soup
Shared Voices | Winter 20166
Out & About
Daily Nov. 25, 2016 – Jan. 2, 2017, 6400 Nancy Greene Way, North Van. 604.980.9311, email: [email protected], bit.ly/peakofchristmas2016Santa Claus, reindeer, ice skating, carollers, craft station and even holiday movies in the Theatre in the Sky. Be awestruck by the glow of light against a majestic mountain backdrop. Walk around Blue Grouse Lake, where stunning light installations bring radiance to the winter night, from a light tunnel to lanterns.
Dec. 31 6 pm – 8:30 pm, Fireworks at 9 pm, 240 Willingdon Ave, Burnaby Call 604.298.7946 or register @ bit.ly/illuminate2017Join us as the New Year begins and the old one ends! Get together with family and friends for indoor fun and activities, then head outdoors for free fireworks.
New Location! Jack Poole Plaza — home of the Olympic Cauldron Daily Nov. 26 – Dec. 30, 11 am – 9 pm. (6 pm on Dec .24, closed Dec. 25)Authentic German inspired festivities, colourful decor, authentic gifts, savoury food and drinks and family entertainment, perfect atmosphere to mix and mingle with friends and family. Tickets $8.
Nov. 24 – Dec. 31, 4 pm – 10 pm 1st and Crowe Street, at the Olympic Village, enchantvancouver.comThe highlight is the maze with hundreds of thousands of lights, towering reindeer, and a 64 foot tall tree with 85,000 LED lights. Navigate the brilliant lights to find Santa’s nine missing reindeer. Enjoy the Christmas market, food trucks, a 19+ area with buttered rum and eggnog, live music and entertainment, and a fire pit. Tickets: Adults $20, Kids $15.
Illumination 2017 at Eileen Daily Pool
7th Annual Vancouver Christmas Market
Enchant Maze and Market
The Peak of Christmas at Grouse Mountain
Shared Voices | Winter 2016 7
Out & About
604.521.0412 or email [email protected], vagabondplayers.caThe Bernie Legge Theatre in Queen’s Park has some great plays throughout the year for only $15 each. An intimate and fun experience.
Daily Nov. 10, 2016 – May 11, 2017, doors open at 6:30 pm, shows start at 7 pm Vancouver Police Museum, 240 East Cordova, Call 604.665.3346 to cancel or reschedule. bit.ly/moviesinthemorgueThe Museum presents Movies in the Morgue, a somewhat random series of film screenings held right here at the old Vancouver city morgue — a gritty drama, a classic comedy or a heart-pounding action film — all while surrounded by the ghosts and gadgets of Vancouver’s past. Folding chairs are provided but bring comfortable pillows and blankets! Book in advance, seats sell out! Tickets $10. There is a 24-hour cancellation policy to refund or transfer them, otherwise, full charges will apply.
Weekly Thursday – Sunday Dec. 8 to Sunday Dec. 18, Studio 1398, 1398 Cartwright St., Granville Island, alchemytheatre.ca/aliceOutlandish creatures and quizzical conversations fill the stage as Alchemy Theatre shows one of the most imaginative tales ever written. This visually stunning production combines the best moments and characters from both of Lewis Carroll’s Alice’s Adventures. Tickets $25.
Every 1st and 3rd Sunday Nov. 6 – Apr. 30, 10 am – 3 pm 12138 Fourth Avenue, Richmond, canneryfarmersmarket.orgProviding a unique experience for Lower Mainland residents and visitors alike, this indoor community market, operated by the Gulf of Georgia Cannery Society, features local food and artisans merchants, inside the historic setting.
New Westminster
Movies in the Morgue
Alice in Wonderland
Cannery Farmers’ Market
Shared Voices | Winter 20168
G’day MateTravel
by linda macgowan
I spent the month of September "Down Under," encountering wonderful accessibility from beginning to end. Victoria and I flew to Sydney. We saw “My Fair Lady” at the Opera House directed by the great Julie Andrews, and visited the Wax Museum where wax figures looked real and real people like wax. We travelled on ferries sometimes getting off to explore towns and beaches, and walked the streets of Chinatown at night. People were friendly and helpful, patient and accommodating. They gave directions and offered alternatives that could make life easier, most of the time (Victoria endured a mighty push up a mighty hill only to find that the directions were wrong). We felt welcomed and disability and wheelchair was never a barrier. My son and his family were committed to Grandma Lin having full exposure to every adventure.
In Brisbane, we noticed "share chairs." There are 1800 free-to-use canvas/wood chairs placed randomly throughout the city. They are not locked; a park official said that last year, they lost only two! In Vancouver I saw a sign outside a church saying “Trust in God but lock your bike." I guess in Brisbane, they can trust their citizens, too.
We travelled down a crocodile-infested river, fed tiny wallabies — some with a joey
tucked in their pouch, snuggled koalas in the Koala Hospital, encountered two-foot-long lizards, and bats with a 4-foot wingspan. We got to see a rare, shy cassowary, a protected bird, with only 1200 remaining in Australia.
No real culinary delights, though. Restaurant meals mostly lacked in flavour and appeal but not in price. We did have some delicious fresh fish and burgers at the dock one night; Victoria even tried crocodile and we both enjoyed great Aussie pies.
As you know, washrooms are important. All but one location had separate men, women and accessible washrooms, always clean, with soap, paper towels, hand dryers, moisturizing lotion, all of which I could reach! Anywhere, near sandy beaches or outdoor pools, the handicap
washroom had a wheel-in shower.
The Great Barrier Reef was easy, with a lift-equipped boat. We even hiked the trail in a National Park with a trail rider (purchased from Vancouver), and stayed deep in the rain forest at a hostel where one cabin was ramped and had a wheel-in shower. A sign that said "No Swimming: Crocodiles" was definitely effective!
After one month filled with adventure we had no trouble catching Zs on the fourteen-hour nonstop flight home. I would do it again in a heartbeat but of course, there are new and uncharted waters to explore!
(Top and Bottom Left) Snorkeling on the Great Barrier Reef and enjoying the nearby beach. (Right) North of Cairns.
We travelled down a crocodile-
infested river, fed tiny wallabies
– some with a joey tucked in their
pouch and snuggled koalas…
Shared Voices | Winter 2016 9
BurnabyIrene 604.951.3563
MetrotownSam 604.273.7574
North Shore Lower Lonsdale Gerry 604.987.6701Success MS Richard [email protected] Companions Mary 604.984.0144
RichmondPat 604.271.6065
SurreyBarb 778.373.0284
Tri-CitiesClaudette 604.942.5561
New Westminster604.689.3144
White RockBridgit 604.541.4091
Vancouver Kitsilano 604.689.3144East Van Deanne 604.432.9111Maple Ridge/Pitt MeadowsGreg 604.895.8202
LangleyMichele 604.882.9120 Sherry 604.888.7855
Langley-AreaParents and/or Mid Career Group Tracy [email protected]
The Younger Persons With MS604.689.3144
Family Members Group604.689.3144Farsi GroupHamid 778.231.0167
Self Help Groups
Gramma Wrecks Our ToysPoem
by gramma denise howse
When we leave our toys upon the floor,Gramma wheels up and the toys are no more.In her wheelchair she glides through the house.Her wheelchair is quiet; as quiet as a mouse.If we leave our toys lying about,she will crush them with her wheels and we will shout.“No, Gramma. Please watch where you're going.You are breaking our lego, pencils and drawing.Watch out! There goes our little car. Our bouncy ball is crushed.Do you have to go so fast? Always in a rush.”Gramma just smiles and tells us she loves us but if we can't clean up our toys, she simply can't help us. The toys are scattered all over the floor.Plastic bricks and rubber balls. Look, one is bouncing through the door.
Gramma doesn't care if our dolls' shoe is there.She rolls on over it with nary a care.We cry out, “No. No”. But we know we're amiss.If we picked up our mess, she would have nothing to miss.She says if we cared for our things just a little,We wouldn't find ourselves in this horrible pickle.With a doll with one shoe and a car with no wheels.A torn paper plane and a cracked pail no one steals.She has asked us to pick up and be tidy.To care for our things and never be whiny.When we drop a trail along the floor, things get wrecked and are no more.
Gramma has warned us that when we come over to play,We can have loads of fun, but at the end of the dayIt is dangerous to leave our stuff on the floorShe can trip and fall as she goes to the door.When she is in her wheelchair she looks straight ahead.Not down on the floor where she would be filled with dreadAt the sight of our toys of which she spent moneycrushed and abandoned and not one bit funny.
So...the answer is there. As plain as can be.Pick up. Clean up. She'll be as happy as can be!
“Viisikko” by flickr/ansik (CC BY 2.0)
Shared Voices | Winter 201610
Chapter News
On September 28, 2016, our MS support group hosted Stacey Bradshaw, Community Services Coordinator from the MS Society, and nurse Nancy Bogle with the UBC MS clinic.
Stacey and staff had been in contact with us and arranged the venue. She opened the session speaking briefly about the MS Society, the Outreach program and then introduced Nancy.
Nancy is a well-respected and knowledgeable contributor to the MS community, involved with research at the UBC clinic. She also participates in some outreach programs and is available through the clinic to answer questions; she informed us regarding research, new treatments and medications and helped maneuver our way through the murky waters of the science of MS.
Nancy and Stacey spoke with us as a group and we were able to share our experiences with them. Then Nancy spoke privately with those of us who had requested a one-on-one meeting.
At the end of the session, our group felt satisfied; our concerns were addressed and our questions answered. We definitely would enjoy further outreach educational sessions.
Outreach on the Sunshine Coast
by denise howseThe MS Society has a new resource when you need answers: their MS Knowledge Network Navigators can help!
You can connect:• By phone: 1.844.859.6789• By email:
[email protected] • "Self-serve" by visiting the
Information and Support sections of mssociety.ca
Ask any MS-related question on research, treatments drug approvals, community services and provincial health systems. Navigators also can help with services of the MS Society and give a “how-to” of other organizations’ community and health system resources.
MS Knowledge Network
Get Connected at MSLink.caIf you haven’t had a chance to look yet, check out MSlink.ca, premiering last issue. In it you can
post an article, or find exercise classes or diets for MS. Essential Designs volunteered and set up this site for us to connect, learn and be heard. It’s definitely worth your time to check it out!
Shared Voices | Winter 2016 11
Caregivers' Corner
Vacation …ahhh! Time to enjoy and relax! Now everybody has their own idea of the perfect vacation. For me, it’s to go on a cruise.
A cruise ship is like a huge facility housing a few of my favorite things — a luxury hotel nestled in a shopping mall. (I must admit I couldn’t type those words without reaching for my inner Julie Andrews). It has restaurants, nite clubs, bars and stage shows.
So you just have to check into your room once then off you go to whichever shoreline you have decided to explore. No long hours sitting in a car or plane to move to another spot. This is definitely the way to avoid stress and fatigue on vacation.
I have been on two cruises so far. The first was a round trip from Vancouver: up the inside passage to Alaska and back. This one was especially stress-free as it left and returned to Vancouver — where I live.
The next was a little more involved as I had to get to New York City. I went four days early to explore the city — of course no way was that long enough. I too love NYC! Then off to Boston, the Maritimes and up the St Lawrence to Quebec City. An overnight there, which was terrif because I got to explore that city before flying home.
I learned something important about tendered
ports — passengers must reach the port by getting on smaller boats. This is NOT a power chair friendly procedure. That meant I could not go visit one of the ports of call and was very disappointed not to see where Anne of Green Gables lived. But knowing the facts going in, it is much easier to accept being left aboard to be reading in the sunshine or partaking in one of the many delights.
I have booked my next cruise. In two days I am catching a flight to Barcelona, again arriving four days early to explore. I’ll then head off on a round trip to Malaga, Cadiz and Gibraltar. I am beyond excited!
If you are anything like me, you are probably thinking this is way too expensive a holiday…but is it really? No, really it’s an all-inclusive package covering our accommodation, food and entertainment for the whole time you are aboard. If you use the same cruise line, your discount grows.
There is one further expense I must allow given my current level of ability. I have to take along a caregiver. My first cruise I was really stressed over trying to find somebody to hire. I found Ace Personnel — I was able to interview several people to find a good fit. Yeah! I’m travelling with the same lady this time so i don't have to pay a finder’s fee.
I have now thought of two ways to give my hubby Steve a break from me, or at least the care & concern that comes with life with me & MS! The first one I tried was booking myself into a respite centre. While that was a fun experience, I did not find time spent with older, often demented, clients to be as stimulating as booking myself into a cruise. Go figure…
Steve usually takes the opportunity to head out of town himself. When the cruise is over and we both are home — we start our post-vacation period fresh!
by madeleine mertl
My Perfect Vacation: A Cruise
12
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:4720 Kingsway, Suite 1103, Metrotower II, Burnaby, BC V5H 4N2
Laughs to EndMS Comedy FundraiserAs per the front page giving theme, give someone a good time. As it's the third year, it must be good! Tickets sold out quickly last year due to word of mouth, so get yours in advance! For Christmas, write a loved one a gift certificate and keep checking MSSenger (tickets go on sale early 2017).
About Ivan Decker
One of Canada's leading young comedians, Ivan
Decker is a hilarious voice for the millennial generation. His fun and silly approach to stand up often reveals
the humor hiding in the everyday trials of today’s
young adult with careful dissection, brilliant timing, and intelligent observation.
He has performed stand-up comedy Canada wide with numerous television and radio appearances including regular spots on the popular CBC program “The Debaters," 3 performances at the prestigious Just for Laughs festival in Montreal and multiple TV tapings as part of the Winnipeg and Halifax Comedy festivals for CBC.