regarding episodic illnesses passed. If you would like to read this report, it is available at: bit.ly/takingactionreport.”

October 21 is the federal election. The MS Society advocates for us, but we can choose to make our votes count; bit.ly/canadamop gives members by postal code. You can even vote by mail if you live in Canada. Go to elections.ca and follow the instructions.

As the saying goes, “Bad officials are elected by good citizens who don’t vote" (George Jean Nathan).

the voice of bc & yukon

Shared VoicesFall 2019

Politics and MS: 2019 Updateby brenda worthington

The Accessible Canada Act (Bill C81) passed with unanimous support June 21. If you want to know more in non-legalese English, go to bit.ly/accessiblecanadaact.

“The Act was first introduced in the House of Commons in June 2018 and includes the term “episodic” in the definition of disability – a positive step in recognizing the nature of many diseases, including multiple sclerosis. The MS Society of Canada and people affected by MS participated extensively in the consultations leading up to the Act being introduced with the same message to include episodic in the definition of disability.” (mssociety.ca)

The MP for my area (NewWestminster/Burnaby) had a personal story; he paid tribute in the House of Commons to his cousin, a teacher who had an aggressive form. He said, “It was heartbreaking to see someone who had so much to give to this world pass away so much earlier than should have been. We as Parliamentarians need to do more to support Canadians with MS. I was pleased that Motion M-192

The Act was first introduced

in the House of Commons

in June 2018 and includes

the term “episodic” in the

definition of disability – a

positive step in recognizing

the nature of many

diseases, including multiple

sclerosis.

VOTE

makemsmatter.ca

Shared Voices | Fall 20192

Chaos and Confusion – All in my Head?

Editorial

Little things can cause big turmoil. When Telus lost its email capability in August, my brain went into panic mode. After we as customers got webmail, allowing us to receive and send new messages, my brain still couldn’t seem to get it; it seemed stuck.

A couple of evenings later, I lay in bed analyzing (that’s the clearest time for me). The two only steps missing were setting up group contacts and saving files in folders. The next day the rep showed me how to do both. My head swirled; had those options recently been added and I just missed them? Or was Telus changing Webmail? I didn’t know.

At this point, this has delayed only two things; setting up a new laptop, and sending out the fall issue of Shared Voices. No harm done. I’m still waiting for my email to return as of September 3, but now with a clearer head. And bonus, I unsubscribed from piles of newsletters so am glued to the computer less. And I got to learn something new!

Throughout, because of my muddled thinking I doubted myself. I wondered if others have the same issues with their thinking. Please write in. I’d love to know if and how your brain has changed since MS.

by brenda worthington

MS Society of Canada BC & Yukon Division 4720 Kingsway, Suite 1103, Metrotower II, Burnaby, BC V5H 4N2 604.689.3144 1.800.268.7582 1.866.991.0577 (YK) info.bc@mssociety.ca mssociety.ca

Editorial Committee:

Brenda Worthington (Editor) sharedvoices@telus.netDorit Hoffmann (Co-Editor) sharedvoices@telus.netLinda MacGowan lin@shaw.caAnne Stopps astopps@yahoo.caRalph Hurtig rhurtig@hotmail.comRon Jones rkj155@shaw.caJulia Hall

Contributors:

Writers: Denise Howse, Sarah Le Huray, Janet Millar, Leah Clark, Heidi ReidlLayout: Katie Lapi

Shared Voices is published four times a year by 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, BC & Yukon Division.

Shared Voices

Looking for more Shared Voices? bit.ly/sharedvoicesnewsletter

Shared Voices | Fall 2019 3

Voices

An Apple A Day – If You Wantby denise howse

In one week, my blood

pressure was back to normal

range. No kidding.

In the past twelve years, besides MS, I have had breast cancer (which does not deserve a big C) and because I now use a wheelchair, a whole host of other medical problems have appeared; some self-inflicted because I use the chair as an excuse to not be active. I have type 2 diabetes; high blood pressure and high cholesterol; bladder and bowel problems; swollen ankles and finally, low energy.

Last winter I was plagued with one cold after another. Little runny-nosed grandkids. See them almost every day and enjoy sloppy kisses and get a cold. Achoo!

By March, I was weak, my blood sugar levels were on the rise and I don't even want to talk about the two b's (bowel and bladder).

I spoke with my doctor who wanted to adjust my meds for the diabetes and blood pressure. I said give me a chance to rebuild my strength, and we agreed to re-evaluate in 3 months.

I got exercises from my physiotherapist and I went on YouTube and typed in ‘wheelchair exercises’. Up popped Bob and Brad

or FamousPT as they bill themselves. Using moves from yoga and qi gong, plus my PT's suggestions as well as Bob and Brad, an exercise routine emerged. Ten minutes. A head to toe slow stretch. No pain. Go for 15 minutes if you want. Add your own moves if you want. Heck, do them twice a day and live on the edge. NO PRESSURE.

Careful, mindful moves to strengthen my arms, core and legs. Can't lift your legs, use a yoga strap, if you want. Ten minutes in the morning. In one week, my blood pressure was back to normal range. No kidding.

Now to deal with unreliable bowels. I started reading about fibre. I read that a woman over 60 should have 25+ grams of fibre a day and we don't get enough in our diet. Apples and pears are right up there for fibre content. Oatmeal is good and fibre-enriched cereal is, too. Dark green vegetables, berries, beans and even popcorn and dark chocolate are good sources of fibre. This morning I had one piece of whole wheat toast with nut butter, an apple with skin on, and a handful of walnuts. An apple has anti-

inflammatory properties and relieves constipation and lowers blood sugar. Who knew? I think I was born constipated. Two days of my new fibre-rich diet and I can proudly call myself a super pooper. Bottom line? By May, my A1C (blood sugar) went from 7.4 to 7.1 (ideal is 7.0 for me).

B.M. every day. Blood pressure normal. More energy. Less swelling and aches. Doctor happy. Me? Going for a scooter ride and lunch out. See ya.

An apple. Ten minutes. Seriously life changing. Try it, if you want.

Connect! Receive either of our newsletters electronically — just email info.bc@mssociety.ca and write MSenger or Shared Voices in the subject line.

Shared Voices | Fall 20194

Every MS diagnosis is unique. No two people will experience MS the same way or exhibit the same symptoms. This describes how people live with it; because the disease varies so widely, and feelings of isolation are very common, it becomes important to have a network of people out there to listen, advise and support.

I have volunteered as a MS Society Peer Supporter for almost two years now, and find it very rewarding. Listening to someone talk through the experiences and understand the circumstances shows its importance. The power of the process is incredible; over time, you can hear people’s burdens and worry dissipate. I have MS too, and even though I am now comfortable with my diagnosis, it still helps to hear the commonality that this community has created.

I joined the peer support program because I wanted to give back on a one-to-one level and connect more

“I am very grateful that this service is available. As I am newly diagnosed, I would feel very isolated without knowing I could reach out with my question”

“I thought the response to my needs was very fast and the navigator was genuinely concerned and cared.”

“Feeling very unsure about what is happening to me. It was helpful to talk to an informed person.”

“My neurologist referred me to the MS website in the US for info, I spoke with the MS Drug Support plan people, 2 local MS staff, my Biogen nurse and countless others but no one recommended you. I’ve cried so many tears, felt helpless and very alone. Wish I would’ve known about you sooner. For the newly diagnosed, everyone should be told about this by all of the providers. Really comforting to know there’s help. The lady I spoke with was exceptional!!”

“The list of resources the navigator provided helped me to create an action list and gave me the motivation I needed to start a big and intimidating project. She read my questions carefully and gave answers that addressed them clearly. It helped me avoid climbing into the rabbit hole of information online and gave me areas to focus on so I don’t get overwhelmed. 5 stars!”

personally for as long as I was needed, and hopefully help navigate this process. I’m so grateful I’ve made a great connection with my peer – we’ve been corresponding well over a year now!

I remember my first few months with MS and the myriad of questions I had. Yet the problem was I had nobody to talk to. There was no national peer support program back then, where I could be matched with someone like me. And finding that “person” – that one person who might be similar to you in age, or family situation, or symptoms, or medication – or whatever matters to you – is the key. And the peer support program can help in whatever mode people need – phone, email, skype, as often as you like.

Talking with someone you can find similarity with is the start to breaking the feelings of isolation. That’s a very encouraging part of living with MS. Should you like to talk with someone, please contact the 1:1 Peer Support Program at peersupportprogram@mssociety.ca or call and leave a voicemail at 1.800.268.7582 ext.3149 to request more information or an application, and indicate whether you live with MS or are a caregiver.

Helping Ourselves

Peer Support MS Navigator Feedback

by sarah le huray

PEER SUPPORT PROGRAM

Shared Voices | Fall 2019 5

Helping Ourselves

What happens in those quiet, dark hours when the rest of the world lies sleeping? Are you exploring the Sounds of Silence?

MS is a lonely disease. Even in the presence of others, I feel alone, but night is my time. I welcome the solitude.

Raindrops on the window, the rustling of trees in the wind, a dog barking, the screech of an angry cat.

I make a mental note of what needs to be accomplished tomorrow. The list is long – more tasks than I could possibly achieve. The MS energy level will dictate - euphoria – so much has been accomplished; disappointment - there is so much more to do.

I listen to the distant sounds of a train: chug chug and whistle blowing, remembering my childhood when I lived with my grandmother. There was always a train passing in the night. I hear a car creeping slowly. Is the driver tired, coming home late from work; reflecting on life; has spent time visiting with a sick friend? A siren! Maybe positive, joyful; perhaps fearful, scary. Conceivably a mom and dad going to welcome their first child?

I waver between being

Sounds of Silence (Simon and Garfunkel, 1965)by linda macgowan

hot and cold. A hot sack: “my mouse” - my granddaughter selected a covering of Minnie Mouse. It is filled with buckwheat and after a few minutes in the microwave, it makes the bed warm, relaxes my tight muscles. Now I’m warm. The quilt is flipped back as I seek cool. I push the covers away to turn then struggle to bring them back over my shoulder. The comfort of a sheet over my shoulder may attract a wink or 10.

Laughing and shouting or is it tears that I hear. People coming home or going out. I hear the faint rush of the skytrain test. It is 4:30am, then silence.

In spring, birds start their chat about the same time as the skytrain starts trips taking people to work. I know it is now 5:30.

When the hands of the clock rotate to 7:30, I wait expectantly for the buzzer to ring; a friend is here to help. A new day dawns. I emerge from the prison of this bed, shower, dress, tucking the fatigue, tiredness away, hoping for a better sleep tonight.

Hello darkness my old friend. I’ve come to talk with you again…

Photo by Dorit Hoffmann

by ron jones

A traditional Scottish winter root vegetable soup made in the slow cooker. Fat free, low calorie, satisfying and very tasty. A hug in a bowl.Prep Time: 15 mins Cook Time: 6 hours Total Time: 6 hours and 15 minsIngredients:

1 red or white onion, finely chopped2 cloves garlic, finely chopped2 large leeks, halved length ways and sliced3 large carrots, roughly chopped1 medium to large turnip (rutabaga), roughly chopped4 medium potatoes, roughly chopped3 pints / 1 3/4 litres / 7 cups vegetable stocka good grinding of salt and pepperInstructions:

1. Add all the ingredients to your slow cooker pan.

2. Mix well and add the stock, then season with salt and pepper.

3. Cook on low for 8 hours or on high for 6 hours.

4. Serve and enjoy!

Notes:Calories and nutrition are for 6 servings.

Calories 167 | Fat (grams) 0.7 Sat. Fat (grams) 0.1 | Carbs (grams) 37.6 Protein (grams) 4.4 | Sugar (grams) 8.7

Scottish Slow Cooker Vegetable Soup

Shared Voices | Fall 20196

THE BIG SING Metro Vancouver

Artists for Conservation Festival 2019

September 27–29, 2019, 12pm, VanDusen Botanical Garden, 5251 Oak Street, festival.artistsforconservation.orgArt exhibit benefiting wildlife; meet leading artists from various countries, buy art, enjoy live music, art demos, birds of prey, films, presentations, music and cultural performances.

The Downtown Eastside Heart of The City Festival

October 30–November 10, 2019, 9am–6pm, heartofthecityfestival.comHeart of The City Festival features hundreds of local residents and artists: twelve days of music, cultural celebrations, films, theater, dance, spoken word, forums, workshops, discussions, gallery exhibits, mixed media, art talks, history talks and history walks.

Julmarknad – A Swedish Christmas Market

November 16–17, 11am–4pm, Scandinavian Community Centre, 6540 Thomas Street scancentre.org/swedish-christmas-market

Steveston Christmas Craft Fair

Saturday, November 23, 2019 10am–4pm, Steveston Community Centre, 4111 Moncton Street, bit.ly/StevensonXmas

Ghostly Gastown Tour

June 12, 2019–November 16, 2019, Recurring weekly on Wednesday, Friday, Saturday at 7:30pm, Meet at Angel Statue Outside Waterfront Station, 599 W Cordova St, Buy tickets in advance: $23 + tax, ghostlyvancouvertours.com Come explore Vancouver's Oldest Neighbourhood on a 90 minute walk through the cobbled streets and alleyways.

Vancouver

Burnaby

Richmond

Out & About

6

by linda macgowan

Shared Voices | Fall 2019 7

2019 STA Christmas Craft Fair

Sunday, November 3, 10am–4pm, 541 West Keith Road Admission: $3

Shamrock Farm Fall Pumpkin Harvest

October 1st–31st (daily), 10am–5pm, 2276 Anderton Rd. Pumpkin Patch, U-Pick Pumpkins, Barn Market, Resident Farm Animals, Haunted House, Witches Brew Café and Barn Loft, Admission free

East Kelowna Community Market

Sundays, September 9–October 28, 10:30am–2pm, 2704 East Kelowna RoadA unique, locally run artisan market, in a quaint and historical hall. Live music, food trucks, outstanding group of crafters, artists and visionaries

Farmers & Crafters Market

Tuesdays, May 14–October 29, 9am–1pm, 14205 Rosedale Ave., Jewelry, plants, home baking, spices, fresh produce, cosmetics, woodwork

Huble Homestead Historic Site

Sept. 2–Oct 14 open weekends, Sept. 21 “Homicide on the Homestead,” Sept. 28 “Scavenger Saturday,” Oct. 25 & 26 “Halloween Spooktacular,” 30min north of PG, for information call: 250.564.7033 or visit: hublehomestead.ca, Admission is by donation

North Vancouver

Comox

Kelowna

Summerland

Prince George

Shared Voices | Fall 20198

The MS Society has a provincial resource manual, available online (bit.ly/msresourcemanual) or in print. To help plan next year’s summer vacation, here are a few potential savings:

Provincial Parks and Camping in BC

Many BC parks have accessible trails and facilities. Consult the BC parks website to inquire about specific accessibility information for a park. Use the “find a park” feature to find your park, click on that park’s accessibility icon.

Camping savings: Persons with disabilities, as well as their camping party (maximum 8 people), are eligible to camp free in road accessible BC parks and pay no charge for a 2nd non-recreational vehicle if they fall under one of the following categories:

• You are designated a “Person with Disabilities” (PWD) receiving PWD benefits under the BC provincial government Employment and Assistance Program.

• You have a child in the “At Home Program” through the BC government.

• You are a person living on-reserve and receiving disability benefits from a First Nation Administering authority.

Call: 1.800.689.9025 (Over the phone booking transactions $5 surcharge)

Community

MS Resource Manualcompiled by the MS Society, BCY Division

Reservations: discovercamping.ca (reservations must be made at least 2 days prior to arrival –campers need a credit card to make a reservation)Web: bit.ly/campingdisability

Disability Travel Card

The Easter Seals Disability Travel Card provides verification to a person with a permanent disability, enabling an adult attendant discounted travel. The card may be used for Greyhound Bus, Via Rail, and Coach Canada. Call the BC Lions Society or your nearest Easter Seals chapter for information on the Disability Travel Card and for an application form (also available online) at bit.ly/distravelcard.

Parks Canada and Heritage Canada

Plan your visit to a National Park, a National Historic Site, or a National Marine Conservation Area by visiting the Parks Canada website or by phoning the Parks Canada Information Centre listed below for specific accessibility information:1.888.773.8888 (general inquiry),TTY 1.866.787.6221 (for people with hearing impairment)E-mail: information@pc.gc.ca or PCH.info-info.PCH@canada.caWeb: bit.ly/accesstotravel

VIA RAIL

VIA Rail offers special services that vary depending on the stations and train facilities.

Information on their website: accessibility, service animals, seating, meals, companions, special equipment, priority boarding, and visual, hearing, and speech impairments. Research the availability of the services you require and inform your travel agent or VIA Rail representative of your needs when you reserve. Provide 48 hours’ notice for them to accommodate your needs.Call: 1.888.842.7245 (1.800.268.9503 TTY) Email: customer_relations@viarail.caWeb: bit.ly/viarailspecialneeds

MS Resource Manual 2018

Shared Voices | Fall 2019 9

Leah Clark volunteers with the Kelowna Walk for MS in memory of her mother. Leah’s mother passed away from complications of MS and Leah has been fundraising and participating in the Walk almost every year since her mother was first diagnosed, when both Leah and her sister Erin were girls. She recently increased her participation and got involved with the Walk for MS committee. At first she was the Entertainment Coordinator and this year, she chaired the committee. Although it was a busy job, she loved it.

Leah’s sister Erin Brodsky and her husband and children are also long-time participants in the Walk. Erin was a young girl when her mother was diagnosed and both she and Leah watched first-hand how the disease progressed in a loved one

Volunteers: Erin Brodsky and Leah Clarkby heidi reidl

For information on

self-help groups in your

area, contact a community

services coordinator at

1.800.268.7582 or YK

1.866.991.0577 or

email info.bc@mssociety.ca

and turned their mother’s life upside-down. This cause is deeply personal for Erin and so she walks and fundraises every year to find a cure or a new treatment for people with MS.

The weather was perfect and the turnout was great. Activities included a magician, face painter, balloon twister, lawn games, snacks, luxury cars and motorcycles on display and sponsor tents to entertain everyone. BellMedia and KelownaNow offered “Spin the wheel for prizes." The Walk started at 10am and thanks to great community support, there were approximately $3,000 worth of donated prizes from businesses all over Kelowna for a chance to win.

The Kelowna Walk for MS raised around $60,000 between all their participants, Ben Klick’s music performance and cash sponsors.

Helping Ourselves

My sister has been a part of the MS Walk organizing the last two years and I am so proud of all the work she has done for this cause. This year she was the Head Chair and did an amazing job at organizing the event and bringing in all of the prizes for fundraising. It has such great volunteers who work on and during the MS Walk which helps make this event such a success!

by leah clark

Kelowna MS Walk

Shared Voices | Fall 201910

Chapter News

In August, here in Nova Scotia where I spend my summers, I had a massage by a young woman who told me this province has a very high rate of MS. Maybe the highest in Canada, she said. For her and her circle of friends it felt like the truth. Her best friend, who is 21, has MS and that friend’s brother has MS. Another close girlfriend in her age group has MS. Her financee’s best friend’s mother has MS. She told me the college where she studied massage therapy in Halifax presents a therapy module for working with MS patients.

Last year in the fall I took part in MS CONNECT 18. I took myself, my MS, and my daughter and we sat through lectures, heard reports from physicians in the field and scientists who receive funding for research. We applauded the volunteers who put in countless hours to raise funds and awareness for the cause. And I met other people with MS.

I was diagnosed with MS 31 years ago. After my daughter was born, before my son arrived. I am fortunate that MS has touched me lightly. Benignly, even. The great diagnostic continuum, with all its side channels and differing

Me and the Bond MS Connect BroughtBy janet miller

types and degrees of symptoms does not easily describe my particular MS. Never an episode, right-sided weakness and muscle atrophy, a bit of drop foot, balance problems, a lurching walk, the use of a cane and overwhelming fatigue.

After years of studiously keeping everything about MS at arm’s length, of steering clear of other people with MS and dealing with my symptoms alone, of trying not to freak myself out with too much internet research, I bravely (I thought) attended MS CONNECT 18 in Surrey, BC.

How lovely it was to finally meet other people who have MS. They asked me how I was doing, spoke of hospitalizations, recovery, rehabilitation, disability difficulties, physiotherapy, online exercise programs, medications, supplements, cannabis, what works for them, what doesn’t work. They spoke of the importance of family support, of friends. They saved us chairs at the tables, we saved chairs for others.

MS CONNECT 18 instilled in me a wish to find out more

about my own condition, become more knowledgeable. My GP arranged for my first MRI in 15 years. I had an appointment with my Neurologist.

I hope current research helps everyone, especially young people, who have been diagnosed with MS.

I look forward to MS CONNECT 19.

See you there. We’ll save you a chair at our table.

Learn more about MS Connect on page 12.

The great diagnostic

continuum, with all its side

channels and differing types

and degrees of symptoms

does not easily describe my

particular MS.

Photo by Janet Millar

Shared Voices | Fall 2019 11

Better Living Tips

Stress is an inevitable part of life. Research suggests that more than 90 percent of illnesses result from your body’s response to stress. Of the many ways of decreasing it, focused breathing, meditation and exercises can be a daily routine. We’ve talked a lot about exercises in the 20+ years of Shared Voices.

As for some easy breathing meditation, this one I use a lot at work and with kids. Great before getting up, last thing at night, during the day whenever you get a moment, try the 4-7-8 breathing. Inhale through your nose into your abdomen to the count of 4, hold your breath to the count of 7 and exhale through pursed lips to the count of 8. Repeat until your mind stops wandering and you can stay present through two full cycles.

Another simple mindfulness meditation is a visualization technique I use. (I cannot keep my brain quiet, but if I organize that constant chatter into a focused image, it’s calming and refreshing.) Next time you have a shower, imagine your body being clear, transparent, almost hollow and visualize the water going through you, starting from your head, washing out worries, fears, sadness, pain… and feel it replenish with light, joy, courage, strength, gratitude for specific things in your life… With your next shower start with your head again, then move along to your chest and heart, then to your arms, feel the pain, spasticity get flushed out through your fingertips and visualize the strength return. (I’m quite nerdy about anatomy and try to visualize how my arthritic finger joints regenerate and new cartilage is forming, and how the blood vessels

Meditation and StressBy dorit hoffmann

from my neck through my shoulder into my hands open up and push the numbness out. I swear it helps!) Be as detailed and specific as you can. It’s empowering and gets you out of your head. Work your way through your body adding more parts each time, include your organs, joints, muscles, feel everything that doesn’t belong leave your body through your fingertips and feet, down the drain, and turn down the water temperature a wee bit. Feel your body recharge.

Please let me know your successes or challenges and what has worked for you. We can always learn from each other.

Illustration by Dorit Hoffmann

Next time you have a shower, imagine your

body being clear, transparent, almost hollow

and visualize the water going through

you, starting from your head, washing out

worries, fears, sadness, pain… and feel it

replenish with light, joy, courage, strength,

gratitude for specific things in your life…

“Sometimes the most important thing in a whole day is the rest taken

between two deep breaths.”— Etty Hillesum

12

The MS Society of Canada acknowledges the financial assistance of the province of BC

Canada Post Publication Number 40063333

Return Undeliverable CanadianAddresses to Circulation Dept:4720 Kingsway, Suite 1103, Metrotower II, Burnaby, BC V5H 4N2

October 5 + 6, 2019Westin Wall Centre3099 Corvette Way Richmond, BC V6X 4K3

SAVE THE

DATEFor more information or to purchase tickets:

msconnectbc.ca