the voice of bc & yukon

Shared VoicesSummer 2020

The Unexpected Moveby gabrielle veto

Working the first spring in my new yard I heard the oddest barking. I remember thinking “gosh, that dog sounds ill.” It took a while to realize those were sea lions, not dogs and the beach was really that close.

It was one of the first events that softened my heart and attitude towards our new home.

Moving was not my idea. A tentative 5 or 8-year retirement plan my husband and I were looking into, depending on how much longer he wanted to work. So, I felt blindsided when one day in July 2018 he came home and said, “that’s it, I’m done.” Blindsided is an understatement. No discussion, no planning, no research.

I loved the house we lived in and had researched extensively to buy, renovate and create our dream home. We hosted most of the family gatherings. We had great friends I could depend on, a neighbourhood and community that was known as safe and healthy. Our “oasis.” Even more so after I had to stop working. I couldn’t wrap my head around leaving everything and everyone behind. Because that’s what my husband was proposing. “Let’s move to the

island. It’s what we’ve always talked about.” And he was right, but in a very general sense. We had done no research, no fact-finding trips, we just knew the spots we liked to visit. In my mind, it was the “someday when we are ready to retire plan.” Not while in our fifties and after only five years in our lovely home.

To stay in the Lower Mainland would be a hard stretch financially and with two dogs and a cat, condo living was not a good choice. Heading out to the Fraser Valley was a no-go for the hubby. I think at this point I started seriously questioning everything: Why would I leave dependable friends and family, leave accessible healthcare? My GP knows me and is two

minutes away; I can make it in to the UBC MS Clinic easily. Volunteering, choir, agility classes are near. My MS is pretty stable and I’m trying to keep it that way.

Suddenly, the thought of moving felt like the most unstable and inadvisable thing to even attempt.

Counseling was the next step. As always, it helped me to clarify in my mind what I can and cannot control and see things a bit more clearly. Was I being selfish? Financially, we

I couldn’t wrap my head

around leaving everything

and everyone behind.

Illustration by Katie Lapi

Shared Voices | Summer 20202

Working Together

Editorial

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.caRon Jones rkj155@shaw.ca

Contributors:Writers: Gabrielle Veto, Nancy Chamberlayne, Allan Miller, Heidi RedlLayout: 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

could retire to the island so was I being unrealistic to “force” him to keep working so we could stay here?

Ultimately, the house-hunting began as did the preparations to sell, slowly. All indications were that nothing would happen quickly, the housing-market was softening so it would probably take a while. ‘No worries’, we told ourselves. As soon as our house hit the online listings our realtor had a call. Before the sign was even in the front lawn, we had a showing, sold within a day. I remember feeling almost physically ill. We had nowhere to move and a pre-planned three-week trip to England coming up. So, four weeks to find a community and house on the island, finalize a sale, pack, take the trip, pack some more and then move.

While still organizing and unpacking more than a year later, I have found a new choir and a dog agility coach. Ferries are a part of life now. Everything takes a little longer as our distance has increased,

but it’s manageable. The entire process made

me realize all my questions had been about me, my MS, my activities, my friends and family. Self-care and managing my MS are important, though in building my safe world, I failed to notice that my life partner was becoming pretty desperately unhappy with the status quo and starting to crack under the pressure of maintaining it.

This spring, our second on the island, as I putter in the garden, I listen to the sea lions bark and reflect on the collective trauma COVID-19 has brought to our lives. Moving was neither fun nor easy and the speed of it was traumatic. But I’m lucky enough to have a garden, a “retirement cottage” with no mortgage and a much happier spouse. Of course, I miss the Lower Mainland and my tribe, yet I’m still lucky enough to live in one of the most beautiful parts of the world. As I try to stay safe, patient, kind and calm, I count my blessings.

Cont’d from Page One

As I write, Earth Day non-celebrations are showing photos highlighting clear skies. People and companies are at their most generous. Musicians are uniting to give free concerts. Scientists from all countries are working together on a vaccine. Parents are showing their children great examples. We have reason to be proud.

Usual columns are replaced or changed in this unusual issue. We hope you enjoy them. Breathe deeply, reach out, be well, be safe.

Shared Voices | Summer 2020 3

about safety, safety for me and for the person assisting me. Some of these mobility aids can push my dignity to the limit but the last thing anyone needs is an injury.

The art of reframing uses creativity with a pinch of humour. Acceptance of those mobility aids, that are hard to stomach, is possible. It changes how you look at it. Everyone will have their own unique way of reframing; it is all in the eye of the beholder.

Voices

Reframe It/Change itby nancy chamberlayne

What do a surfer, a pole dancer and a frequent flyer have in common with disability aids? They all use equipment to do what they are great at or enjoy. These images have helped me look at disability aids, that are hard to accept, as helpful and positive. It is all in the art of reframing.

Reframing looks at an object or task from a different perspective, to make it more user friendly. With creativity and humour, it puts a new spin on those aids. I learned to do it many times during the 32 years I have had MS.

A cane becomes a walking stick or when adventurous, a hiking pole. A chariot sounds more regal than a wheelchair especially when accompanied by the song, “Chariots of Fire.” When it comes to a walker, if you are in the mood for food, a shopping cart comes to mind. My scooter is more palatable and fun when I off-road it, and becomes my bush scooter. It’s all about the art of reframing.

Recently, I have come face to face with having to use new mobility aids. A sliding board is my mini surfboard, used to slide from one sitting position to another, all to the Beach Boys’ song, “Surfing Safari.” The floor to ceiling transfer pole that helps me change position adds a unique touch to the decor of any room. To accept the pole —

like the jock I am — I use it as an exercise pole, or, if really playful and risqué, a stripper pole. The latest addition to my wardrobe is a designer belt or climbing harness. I am referring to the transfer belt which is a strong material belt that is synched around my waist for good support and grip to assist with a transfer by my husband, an aid or medical professional. Then there is the dreaded overhead lift which is an expedient form of transfer for a person that can not bear their own weight. A sturdy cloth sling and an operator is required to hoist and maneuver the person along a ceiling tract to the destination. When I have had to use it, I have felt like an animal caught in a snare, so I visualize myself going up, up, and away in my flying machine. I think of the overhead lift as a commercial 747 jet flight to an exotic location. My nine-year-old great niece came up with the best reframe, “Why Auntie Nancy do you have a zip line in your bedroom? You are so lucky.” Only in the eyes of a child.

These mobility aids are all

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Reframing looks at an object or task

from a different perspective, to make

it more user friendly.

Illustration by Katie Lapi

Shared Voices | Summer 20204

Some meditate, I tend to my garden, same mental delight. If you have a window, a windowsill or some floor space, a shelf and a grow light and the desire, there’s always something that’ll grow for you. I’m currently unable to work since my job as a massage therapist doesn’t do physical distancing very well. I love to cook and enjoy using fresh, local ingredients, and it doesn’t get more local than my window box.

Throughout the year I dry a few seeds of some of the tastiest vegetables, like cucumbers, tomatoes, jalapenos, etc. Letting a couple of beans fully ripen on the plant and one of each herb go to seed; all that takes care of next season’s crop without having to spend money on store-bought seeds. I even had some luck just planting a few popcorn kernels. A small harvest. But the joy?!

Easy ones for indirect light are lettuce, spinach, spring onions, radishes, kale, garlic, carrots, beets and

swiss chard. They might grow a little slower, but most prefer indirect light and not full sun.

Other easy and fertile potted indoor plants preferring sun are tomatoes, bush beans, all herbs, beets and carrot here, too, bush cucumbers or if you have window space, I had a fair amount of pickling cukes last year. All of these can be placed outside as well.

I planted my bush beans the end of February and we are already having our second full dish of beans today, with pickled jalapeno from last year and homegrown basil pesto,

Helping Ourselves

(Indoor) Gardening by dorit hoffmann

frozen in icecube trays last fall. Lunch will be a balcony salad, with a couple of radishes and fresh herbs. It’s partially about good, nutritious food, partially about saving money, but mostly about being present and in the moment, the fun, joy, pleasure, the calm and peace of gardening.

Photos by Dorit Hoffman

I love to cook and

enjoy using fresh, local

ingredients, and it doesn’t

get more local than my

window box.

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 | Summer 2020 5

Research News

Virtual Reality Helps to Detect Mild Balance Problems in People with MS, Says New Society-Supported Study

People with MS are more likely to fall even if they don’t have trouble walking. In a study exploring this problem, researchers at the University of North Carolina and collaborators found that balance problems that were not detected in people with MS while walking were evident using virtual reality-based testing. The team compared balance in 14 people with MS and 14 people without MS using normal walking, and then using the virtual reality headset-based method, which involves giving people the illusion of falling. bit.ly/vr-ms

Self Care

Self-care is integral for our ability to live with chronic disease, and absolutely imperative if we are to thrive if living with multiple sclerosis. Disease does not make self-care easy, but it does make it necessary. bit.ly/ms-self-care

Researchers Identify New Potential Targets for Stopping Nerve Loss in MS

Researchers from the Gladstone Institutes, the University of California, San Francisco, and others reported results of studies aimed at mapping out processes that contribute to nerve degeneration in progressive MS and other disorders. bit.ly/stopnerveloss

People with MS and their Healthcare Providers Can Contribute to a Worldwide Research Effort to Improve Coronavirus Outcomes

These efforts will help healthcare providers identify the best way to handle this infection in people with MS, and will give people with MS the information they need to achieve the best outcomes. bit.ly/covid-ms

Research News from NMSS (US) and Britainby brenda worthington and dorit hoffmann

COVID-19 and MS

Researchers in Italy have published results showing mild symptoms in 223 out of 232 (96%) of people with MS who had suspected or confirmed COVID-19. 57 of the 232 people with confirmed COVID-19, with 5% having had severe or critical cases. The results are very early but suggest current disease modifying therapy (DMT) and shielding advice for people with MS is correct. bit.ly/ms-covid-italy

New Study Links Obesity to Faster Nerve Loss in People with MS

Johns Hopkins University researchers funded in part by the National MS Society report that people with MS who were obese experienced accelerated loss of optic nerve tissue compared to people of normal weight. The study followed 513 people with MS for about four years. bit.ly/nerveloss

Shared Voices | Summer 20206

Cirque du Soleil

Cirque du Soleil bi-weekly online performance. cirquedusoleil.com

Library Time

If you have a library card you can borrow e-books to read on your smart phone or tablet, up to three weeks, reserve your favourites in advance or if you haven’t finished what you are reading, the whole book will return to you. For all of these online activities, the price is right!

Travelzoo

Travelzoo allows you to take 20 virtual trips, to places you might have dreamt about. bit.ly/travel-zoo

The Shows Must Go On!

The Shows Must Go On! For the first time ever, full performances of Andrew Lloyd Webber musicals are available online, a different one each week, starting at 11 am PDT, Friday. There are 3 performances Friday and 3 Saturday. bit.ly/showsgoon

by linda macgowan

In & About

This unique time in our lives is providing us with an opportunity to:

� Rejuvenate: YouTube sites to guide aerobic exercise to music in a wheelchair, as well as stretching and strengthening ‘follow alongs’, meditation and so much more

� Recycle: every time I open a drawer or pull a hanger out of the closet, I put a few items I haven't used in years in a donation box.

� Reconnect: by telephone or video conference. I found some older post cards of my travels, sending one to my grandchildren each with a joke, note, and memory of the trip.

� Evaluate: are there things in your life you want to change?

Spinal Cord Injury Society

Spinal Cord Injury Society is offering a variety of online programs open for people with disabilities, ranging from a virtual glass of wine to fitness. Check them out! bit.ly/sci-virtualclass

Shared Voices | Summer 2020

Shared Voices | Summer 2020 7

In & Aboutby allan miller

Wow! We didn’t even know what that was a few months ago. We are living in a bouillabaisse of change. Please remember that we are not stuck at home, we are safe at home.

Stay home, wash your hands for 20 seconds often, don’t touch your face, and stay two metres away from others.

Be kind, be calm, and stay safe.”

Dr Bonnie Henry, BC Provincial Health Officer.

� Routine: Replicating some of your pre-COVID-19 calendar and activities will anchor you with a familiar structure. Exercise on the days you usually exercise, meet friends for a virtual coffee date on the days you usually get together, go to a virtual concert in the evening.

� Get Up and Get Dressed: This will help you shift into daytime mode. Putting on a favourite shirt or fleece will get you ready to enjoy the day.

� News Cycle: Constant news about the COVID-19 pandemic is debilitating. Think about controlling what you read, listen to, or view. A couple of times a day might be enough.

� Free Music: There is lots available online. You can also subscribe to a music service or get out your old records and CD’s and connect to those memories.

� Travel: We will travel again someday! For now, you will find travel diaries, photos and videos of places you’d like to visit online. You can go over your photo collection to remember the trips you have enjoyed.

� Games: You can play free games online.

� Manage Screen Time: Turn off the screens and turn on the music. It's a different dopamine hit! Or just turn it all off and rest your eyes, ears, and brain. Stay active, stay positive, and stay connected.

� Ask For Help: There are two free sources in BC you can turn to for help with what you need. 2-1-1 (Previously for seniors now open to all) or look up 211.ca. It provides free information and referral to a full range of community, social, and government services, 24 hours/7 days/week. If you need help with food or pharmacy deliveries, community care 211 will put you in touch with the right people. For example, Victoria’s James Bay New Horizons Society for Seniors, has cancelled their regular programs and now delivers food and pharmacy orders, and more. 8-1-1 is a free-of-charge health information and advice phone line. It is operated through the Ministry of Health. A navigator can help you find related information; or connect you directly with a registered nurse, a dietitian, a qualified exercise professional, or a pharmacist to manage your health concerns, or those of your family.

Beautiful by Carole King You've got to get up every morning

With a smile in your face

And show the world all the love in your heart

Then people gonna treat you better

You're gonna find, yes you will

That you're beautiful, as you feel

In & About

Shared Voices | Summer 2020

Shared Voices | Summer 20208

Recipes

• 3 large yams, scrubbed, or regular or sweet potato

• ¼ cup butter• green onions• 1 tsp thyme, oregano, rosemary (2 of

the 3), salt, pepper to taste• 1 egg, lightly beaten• 4 ounces cheese, any cheese will work• 1/3 cup pecans or walnuts, almondsPreheat oven to 400°F degrees, bake the yam for 50-60min, until very tender. Cut in half lengthwise, scoop out the warm potato into a medium bowl, leaving a ½-inch-thick shell of yam, so they look like little canoes. Add the butter to the scooped-out potato flesh, mash with a fork, add egg, green onions, pecans, cheese, salt, and pepper, stir until combined, spoon into the yam shells, bake 20-30min, until puffed and lightly browned. Serve hot.**This is a use what you have on hand recipe, so substitute. Don’t make a special trip to the grocery store. I omit the salt. Freezes well so you don’t have to cook every day.

Double Baked Yamsby linda macgowan

• 1 spaghetti squash• extra-virgin olive oil• sea salt and freshly ground black pepper• your favourite tomato sauce• green onions, basil, cheesePreheat oven to 400°F, cut squash in half lengthwise, scoop out seeds, drizzle the inside slightly with olive oil and sprinkle gently with salt and pepper. Place spaghetti squash cut side down on the baking sheet and use a fork to poke holes, roast for 30 to 40 min or until lightly browned, fork tender, but still a bit firm, (time depends on size). Remove from oven, flip cut side up and when cool to the touch, use a fork to scrape and fluff the strands from the sides of the squash.Or use microwave, same as above, but add about 1/2 inch of water to the pan. Microwave uncovered on high for 10 to 20 min until color deepens and you can easily slide a knife into the flesh. The time can vary considerably. Let cool enough to handle and run a fork through the squash to unearth the spaghetti-like threads.Add your heated tomato sauce, top with green onions, cheese and basil. Enjoy.

Spaghetti (squash) with tomato sauceby dorit hoffmann

Photo by Dorit HoffmannPhoto by Dorit Hoffmann

Shared Voices | Summer 2020 9

Community

Week 7 at home, no work, no physical closeness, no income, not getting out, no routine. I struggle(d). I love my job, my patients, the fact that I can help, having a purpose, and getting paid for all this rocks! My brain knows I’m in a good place, have food, a wonderful home, patients are asking for and about me, I qualify for the CERB assistance and I have time to just be. Read even! My emotions though are on the other team. They comfort in worry, are knotted up just above my stomach, have taken hostage of my sleep, nag me to check my account 3x/day and scream for carbs. And then there is wine. I’m only half kidding. I truly do know how very fortunate I am and that being at home is the only right thing to do. Also, in my 28 years of being self-employed I have never had a PAID vacation!! Though my monthly expenses of rent, mortgage, license, insurances, taxes etc are around $5,500, the $2,000 are more than I would get if I’d taken a vacation. Never mind the expenses of all the adventures. So, I’m already winning, but… The parts of this article below really helped me to allow for my own journey to unfold.

We each respond in our own way. “The first few weeks you should make ample

room to allow for a mental adjustment. Allow yourself to work through the anxiety. Next, ignore everyone who is posting productivity porn on social media. It is okay that you cannot do a Zoom yoga class. You are on your own journey. Cut out the noise. Instead, focus intensely on your physical and psychological security. Create social connectedness with a small group of family, friends, and/or neighbors, maintaining physical distancing. Identify the vulnerable and make sure they are included and protected.

Embrace a New Normal — When your foundations are strong, build a weekly schedule, prioritize the security of your home team, then carve out time blocks for different categories. Things will start to feel more natural, and work

Mental Journeyby dorit hoffmann

will also make more sense. Have faith in the process. Support your team. Emotionally prepare for this crisis to continue for 12-18 months, followed by a slow recovery. If it ends sooner, be pleasantly surprised. On the other side of this journey of acceptance are hope and resilience. We will know that we can do this and find light in all the nooks and crannies. We will learn new recipes and make unusual friends. And we will help each other”.

Loosely taken from Aisha Ahmad, assistant professor of political science at the University of Toronto

Resources

� 310-6789 for individuals who would like emotional support & information specific to mental health in BC, available 24/7, toll-free in BC (no need to dial an area code)

� bcpartners@heretohelp.bc.ca if you prefer email. Take a test at cmha.ca/mental-health-meter

� BC/YUKON Kids Help Phone: 1.800.668.6868

� Yukon: Yukon Distress and Support Line 1.800.563.0808 / Kaushee's Place Crisis Line 1.867.668.5733

Illustration by Katie Lapi

Shared Voices | Summer 202010

The need for information, resources and support programs for people affected by MS is as urgent and critical as ever. Given we are unable to provide in-person programs and services, we are quickly pivoting to providing much needed support virtually. We have created a COVID-19 web resource (bit.ly/mssocietycoronavirus) at mssociety.ca specific to MS and continue to monitor and update as new information is made available. We also recently introduced a virtual rehabilitation and wellness series (bit.ly/msvirtualprogram) in partnership with a number of other community partners, and we are looking to expand virtual wellness and support offerings, like virtual yoga, 1:1 peer support, and group support programs. There is also an unmet need for those who have difficulty accessing the internet, and we’re currently looking at non-digital means to ensure support gets to those who need it.

Are you in need of support and connection and want to see if there is a virtual peer support group that would meet your needs? Have an idea for virtual support that would benefit your community? Let us know! We would love to hear your ideas on how we can work towards supporting and promoting community connection. Email info.bc@mssociety.ca

Programming Update

Division Newsby stacey bradshaw

10

No matter who you cycle for, coming together with people across Canada in support of the MS community makes a difference. We know our world looks different right now and things continue to change every day, but one thing that remains the same is our commitment to the MS community and to a world free of MS.

You join thousands of MS Bike participants all working toward this singular goal. How, when and where you choose to ride is completely up to you. We will be sharing our virtual routes in the coming weeks. You will be able to commit to riding your local MS Bike route on your own or take on a specific challenge with varying lengths all the way up to 7,117km, the length across Canada! Register today.

msbike.ca

Shared Voices | Summer 2020 11

Success: a bar of hard milled soap to a sliver in three weeks.

Community

Our MS Writers’ COVID-19 Copeby brenda worthington

When looking for coping ideas, I knew our writers would have things to say.

Crystal W: I am trying new recipes and either drop meals off on friends’ doors or have them pick meals up on my porch. Isolation helps you realize what in life you truly appreciate. A simple hug even! We need to be thankful for the big things, but perhaps more importantly, for the little things and remember to appreciate them.

Denise H: I try to keep a loose schedule: I read for two hours and watch our prime minister and Dr. Bonnie Henry every day. They are calming. I do not watch any other news. I am painting a huge painting, which I hope takes me months to complete. I am sleeping in until 9 and I am very slack on the housework front.

Ceci T: My 12-year-old daughter is home while I am at work. She keeps busy with art projects and school and online dance lessons and we do facemasks and movie nights. I’ve taken on a house project of tearing out carpet and redoing some flooring. I also started my own wechallengems 100k and a half marathon to end ms. We have more family time, board games and walks, snuggles and lazy days.

Karen C: I’m doing all the jobs around the house I have avoided like photo albums, updating my will, and cleaning drawers and cupboards. I’m touching base with long-lost friends. I get outside daily and appreciate my environment. I am making it a point each day to contact someone who is living alone. Sometimes hearing another voice is so important and I need to know my friends are safe and well.

Diana G: If you have a driveway and sidewalk chalk let your children colour rainbows or draw a metropolis. In the kitchen, have them help and create.

Sausanne R: I am enjoying this time off to do things around the house I have put off, such as filing and preparing photo books. I have been gardening with my daughter (who got laid off). I do look forward to this isolation ending but will also look back at this time fondly as one where I was able to relax and just do whatever I want around the house.

Paul E: We have two children at home who are studying online. We’re cleaning up more around the house and yard.

Sherri M: (Note from the editor: Tragically, Sherri’s grandfather was a victim of covid-19. It is now very real in our MS community. We all send her heartfelt condolences.) I was busy working with four communities to proclaim May MS Awareness Month and to have our flag raised. I am not able to present in person now, but I’m still getting it done and the word out. Also, I get a lot of cleaning and reading done I never have time for. There's always something positive in situations, even if it’s a difficult one. Self reflection has been big and I think everyone is learning what really matters. You realize how brave all the people still working are and likely always were and never got recognized for it. I make sure to say thank you.

Photo by Dorit Hoffmann

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

Cherri is the manager of an A&W in Quesnel, which raises an outstanding amount every year during the Burgers to Beat MS campaign. In 2019, Cherri’s A&W raised $7,063.46. Preparations for the “big day” start well in advance and on the day itself Cherri has arranged to have a DJ playing music, there is a silent auction, door prizes and free goodies. Classic cars are on display in the parking lot. She tries to spice things up a bit with one new idea each

year. In 2019 her A&W also had a gaming truck, mini horses, and a "pie in the face" toss with two Quesnel city counselors. Leading up to the day Cherri’s family and friends help out by baking and decorating cupcakes that are sold specifically for MS donations. She has also taken on recycling books and selling them for MS. She has even set up three main prizes that people can win by donating a set amount to MS.

Cherri was given the task of taking on the MS fundraiser a few years ago and she has excelled at it, probably because she makes it her mission to make this the most successful it can be. Her very dear aunt lives with MS, so the cause is close to her heart. She fully credits the support from fellow staff, family, friends, and the community which donates their time and/or products to the outstanding success of Burgers to Beat MS Day in Quesnel.

Profile

by heidi redl

Cherri Riley

#WECHALLENGEMSJ O I N T H E V I R T U A L M O V E M E N T

w e c h a l l e n g e m s . c a