Ralph: I try working out three days/week doing warmup, weight lifting, and yoga-style stretching. I also enjoy running However, it’s challenging to maintain consistency.

On our quest to live well, we examined Blue Zones and can they apply to us affected by MS.

Blue Zones (BZ) are regions of the world where people live much longer than average. Dan Buettner in "The Secrets of a Long Life" identifies five areas: Okinawa, Japan; Nicoya, Costa Rica; the Seventh-Day Adventists in Loma Linda, California; Sardinia, Italy (particularly Seulo, with 20 centenarians from 1996 to 2016); and Icaria, Greece (nearly 1 out of 3 people reaching 90, 20% lower rates of cancer, 50% less heart diseases and almost no dementia.) Bluezones.com lists nine lessons. Brenda (using a wheelchair), Ralph (with invisible MS), and I (friend/caregiver to Brenda) are seeing how we fit in, limping along with the greatest intentions…

1. Move NatuRally:

They live in environments that constantly nudge them into moving; they grow gardens and don’t have all the mechanical conveniences.

the voice of bc & yukon

Shared VoicesSummer 2018

Finding our own Blue Zone

Dorit: Just this morning I added about 2 months by weeding out my garden plot.

Brenda: I have been trying an MS specific exercise program at themsgym.com the last few months and can pick up the many items I drop off the floor now!

By dorit hoffmann with brenda worthington and ralph hurtig

Shared Voices | Summer 20182

2. KNow youR PuRPose:

“Why I wake up in the morning.” Knowing your sense of purpose can add up to seven years to your life.

Dorit: I have a head-start, being a caregiver sure does. And my work, too.

Brenda: Family, friends, and when I had to leave work, I joined a support group. It was crucial to adjust…which led to friends, to volunteer work and fulfillment.

Ralph: I have a caring, close-knit family, and feel a keen responsibility to improve our environment. Being there for them gives me purpose.

3. DowN shift:

Even people in the Blue Zones experience stress; Okinawans take a few moments each day to remember their ancestors, Adventists pray, Ikarians take a nap and Sardinians do happy hour.

Dorit: If drinking wine counts – I’m totally stress-free. I find it tough to get ‘me time’, though I do practice mindfulness and gratitude throughout the day.

Brenda: I use a few favorite meditation sites; procrastinate,

then wonder why, when the after is so good.

Ralph: My stress relief involves communicating with loved ones that I am fatigued and unable to do things I might do if I was feeling better.

4. 80% Rule:

Okinawans stop eating when their stomachs are 80% full. BZ people eat their smallest meal in the late afternoon and then nothing more.

Dorit: There must be a special quota for caregivers. Especially for chocolate.

Brenda: I want to be a caregiver! This one’s hard – I love to munch.

Ralph: Portion size is a struggle. I sometimes feel like eating my way out of fatigue.

5. PlaNt slaNt:

Legumes are the cornerstone of their diets, with 3oz servings of meat eaten only five times/month. The majority of their food is plant based.

Dorit: Veggies? We might be Guinness record worthy here. But where’s the bread?!?

Brenda: YES to veggies. Growing up on moose meat, I

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) fiery-one@telus.netDorit Hoffmann (Co-Editor) wellness@doritstherapy.caLinda MacGowan lin@shaw.caAnne Stopps astopps@yahoo.caRalph Hurtig rhurtig@hotmail.comRon Jones rkj155@shaw.caJulia Hall jchall@shaw.ca

Contributors:

Writers: Denise HowseLayout: 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

Don’t get left out! 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 2018 3

became a vegetarian and am lately enjoying some meat again.

Ralph: I like eating salads with chicken breast or fish and bread. And I make invigorating shakes from fresh greens, avocados, and fruit once a day (See Rob’s story, Page 8).

6. Wine @ 5:

Except Adventists, most drink alcohol regularly and moderately. They outlive non-drinkers. Only 1-2 glasses/day with friends and food.

Dorit: Again, I’m pretty sure there is a different rule for caregivers.

Brenda: If I have to...

Ralph: Fermented foods like red wine and tofu can cause me to have an allergic reaction. I just keep the alcohol toned down.

7. faMily fiRst:

Keeping aging parents and grandparents nearby lowers disease and mortality rates of children in the home too. They commit to a life partner (which can add up to 3 years).

Dorit: I truly enjoy my work and some connections almost feel like family. Mine is only a weekly call away and I’m lucky my friend’s family took me in as well.

Brenda: I love the ones I’m with, like that old song…

Ralph: I have close relationships with my children, parents and siblings where we can always share our thoughts and feelings. I like being involved.

8. BeloNg:

All but five of the 263 centenarians we interviewed belonged to a faith-based community. Attending services 4x/month adds 4-14 years.

Dorit: Vancouver is a tough place for me. I now have a few wonderful people I can call friends – a word that means something. Moving to New West, made it much easier to connect with neighbours, regular visits, a new work place where I’m part of a team… hard work, but oh how sweet it is to feel like you belong.

Brenda: Shades of my past. That’s a thorny one.

Ralph: I have my own personal views. And I respect other peoples’ beliefs.

9. Right tRiBe:

Social circles supporting healthy behaviors: Okinawans create ‘moais’ (groups of five friends that commit to each other for life.)

Dorit: An East German childhood meant a lot of organized collective activities, accountability, neighbours ‘watching’ as well as helping

and belonging to a sports team created a good start. I still have people there I can rely on. A meaningful profession, Brenda and involvement with MSers all are my tribes.

Brenda: I have people I can count on and appreciate my family more as the years go by. Even though they all live in different towns, just a text keeps you close.

Ralph: I’ve never considered being part of a tribe but do have four friends that I communicate and connect with on a regular basis. May need to find another friend.

CoNClusioN: Dorit: I know all research is flawed, though I can’t see any downsides trying to apply these 9 “rules.” I might just make it into my 90’s. I want to be here when they find a cure!

Brenda: Forget the number. I want to be healthy for as long as I can while living a fulfilled life: Fun, family, friends, projects like Shared Voices to spark that grey matter.

Ralph: I’m constantly looking for solutions on how to manage my MS conditions and have just finished completing a new BZ list to hang on my wall. Bluezones.com states ‘the average person’s life expectancy could increase by 10-12 years by adopting this lifestyle.'Dan Buettner, "The Blue Zones: Lessons for Living Longer from the People Who've Lived the Longest." (National Geographic Society), 2008.

Shared Voices | Summer 20184

BookwormIn The Bookworm’s Cornerby brenda worthington

Be Your Own Superhero: A Road Map to Resilience when Faced with Chronic Dis-ease by Barbara B. Appelbaum, Love Your Life Publishing, March 27, 2018

In the initial quotation, “She needed a hero; so she became one,” Barbara B. Appelbaum sets the pace for her memoir and guide to resilience. She explores her experiences with MS by training readers to become ‘superheroes’, finding elements in her own past to help us. She starts with a quiz to discover where we currently are. In the next four sections, she examines the elements: The Ordinary World, The Extraordinary World, Implementing G.I.F.T.: Four Real-Life Stories of Resilience, and Your New Normal.

This highly readable book tells her story with unsentimental honesty in a likable style, recounting her journey from childhood to current day.

In the first section, Appelbaum recalls “The Panic Game” her parents invented for them. They gave a traumatic scenario such as a fire, for the children to discuss. Played at dinner a few times a month, it eventually taught them to think strategically and calmly. During crises in

her adult life, she applied this technique; after being diagnosed with MS, she used the game to develop G.I.F.T.; to 1) Get clear 2) Increase understanding, 3) Focus, and 4) Take action.

With this, she says, “I may have MS but MS does not have me.”

Throughout, Appelbaum maintains a levelheaded, positive approach. She delves into aspects of resilience by definition and lists building blocks to attain it. She discusses her life’s five major obstacles, ending with a closer, specific look at MS.

Practical suggestions follow for dealing with fear and risk; changing our mindset to re-frame day-to-day living into one of adventure and to find our unique gift. She gives breathing exercises to calm anxiety, uses the familiar S.M.A.R.T. system to set intentions, and lists tips on silencing our inner critic to enable us to take control.

Appelbaum shows how to get clear and think restoratively (rather than negatively), and describes her ‘Wheel of Wellness’. She gives examples as she tells her own process, so we learn to make our own ‘Successful Personal Wellness Plan.'

Four people who live successfully with their MS using very different methods are profiled. We end with ideas on living, with such diverse topics as spirituality, planning our own wellness team, being our own advocate and a short chapter for men only. The information is current, and so are the books, apps and articles noted. All Amazon reviews give deservedly five stars.

She explores her experiences

with MS by training readers

to become ‘superheroes’,

finding elements in her own

past to help us.

Shared Voices | Summer 2018 5

Out & About by linda macgowan

June 8–10, bit.ly/prseafestPrince Rupert’s largest festival has been held annually since 1978. Friday, Saturday, and Sunday are packed with events, activities, food booths, and entertainment downtown and on the waterfront.See the website for individual events – fun for the whole family!

Third Tuesday each month, 7-8pm, Senior’s Centre – 719 Vernon StreetThe Laughter Club gathers to use laughter as a form of exercise. You don’t need to be happy; the practice of laughing itself improves your mood, and then you do feel good. It even develops your sense of humor, creates the chemistry of happiness and delivers many health benefits.Free! Bring your own yoga mat or sit in a chair. Bring some water.

Fridays, beginning June 29, 6:30pm, Gyro Park at the foot of Main StreetEvenings of open air music in a beautiful setting. June 29 features Brian Highly with acoustic favourites from the Beatles, Rolling Stones and others. Bring a lawn chair, blanket, supper, bring the kids and enjoy.Everyone is welcome to a free event in this fully accessible park. No food for sale.

Nelson: Laughter Club

Osoyoos: Music in the Park

Prince Rupert: Seafest

Shared Voices | Summer 20186

A walk by the water improves overall well-being, has a calming effect on our nerves, and provides free exfoliation massaging our soles/souls. After months of rain in Metro Vancouver, treat yourself to some outside time. Or if you are here on vacation, use as a guide. Pay parking and accessible washrooms unless noted.

Health Benefits of Walking by the Water

5. West Vancouver

The popular 1.7-kilometre Centennial Seawalk extends from the bottom of 18th Street to Dundarave Park. It has scenic views of Burrard Inlet, the Coast Mountains, the Vancouver skyline, and ships travelling under the Lions Gate Bridge. Ambleside is fully accessible and well used. Come walk the Seawalk, visit the dog park, play beach volleyball, relax in the sand and more! Concession.

3. Burnaby

Barnet Marine Park: Enjoy the spectacular views of Burrard Inlet or reading a book or taking a swim at the sandy beach or just come for a picnic.

1. New Westminster

Accessible from the New Westminster Skytrain station and car, the Westminster Pier Park is uniquely built with equal parts on land and water. It connects visitors to the mighty Fraser River and when combined with the Waterfront Esplanade Boardwalk creates a 2.5 km linear waterfront park, including a 600 meter boardwalk, concession, elevated viewpoints, benches, accessible picnic tables, two sand volleyball courts, a basketball court, public art, misters and playgrounds.

2. Belcarra

Something for everyone from easy trails to great hikes and beaches.

4. White Rock

The City of White Rock features over 80 acres of park land – participate in their wide variety of leisure opportunities; enjoy the majestic views from hillside walkways or stroll along the stunning promenade.

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Shared Voices | Summer 2018 7

There are amazing parks and waterwalks everywhere. Please tell us about your favorite place, where you relax and recharge. What is your preferred way of spending a summer day? Email fiery-one@telus.net.

6. Vancouver

Vancouver’s Seaside Greenway, at 28 km, is the world’s longest uninterrupted waterfront path – including Stanley Park Seawall, Conventions Centre, along Granville Island, to Spanish Banks.Riverfront Park Walk: The Riverfront walk is located south of Marine Drive along the Fraser River between Kerr Street and Argyle Street. The linear route is 2.4 km in one direction and is a fantastic option for those looking for a delightful waterfront stroll. The relaxing pace and consistent hum of activity in the area is dictated by the steady flow of traffic on the Fraser River. This area has a diverse array of park amenities and pub. Pay parking.

8. Delta

Brunswick Point is a nice walk along the dikes of the Fraser River and a popular place for bird watchers. A metal gate marks the end of the road and the beginning of the trail. It follows the shoreline, passing farmland before arriving at a point with a wooden bench, perfect to watch the birds. No washrooms.

9. Richmond

Britannia Heritage Shipyard Park is a historic shipyard, museum and waterfront park.Garry Point Park is a waterfront location with spectacular views.Imperial Landing Park is a long boardwalk, fishing piers and has an observation tower.Concession area for these three parks.Middle Arm Waterfront Park has piers, amphitheatre and multiple play areas. Terra Nova Rural Park has boardwalks, trails, heritage buildings and agricultural activities. Accessible washrooms at Starbucks.Find details: bit.ly/richmondparks

7. Deep Cove

At the far end of the Baden Powell Trail, which begins along Panorama Drive just beyond the park area in Deep Cove, is the fantastic Lookout Trail. Also known as Quarry Rock and the Grey Rock Trail, it crosses numerous creek bridges to get to the lookout with views of Deep Cove and Indian Arm far below. Not wheelchair accessible – many stairs.

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Shared Voices | Summer 20188

58-year-old Rob responded to my Craigslist ad for lifejackets. He was the fittest person I have seen, and would never fit into even my extra-large life jacket despite his height of 6’3”. He had spent a lifetime in watersports and recently decided to get into shape so he could once again take up barefoot waterskiing. Although he never bought any of my lifejackets, Rob shared something more valuable about re-examining my lifestyle, which may easily fit into the Blue Zone lessons for longer living. One was eating fresh vegetables out of his garden. He emphasized that the fresher vegetables are, the more noticeable the benefits to your health; he prepares a super shake from the greens in his garden. Looking around my back yard, he spotted a twelve-by-twenty-foot plot where I could plant a garden like he has. His short visit with me about eating healthy and exercising has given me a positive attitude about Blue Zone living. I was so inspired; I tried a version of his recipe and drank it instead of eating an unhealthy snack.My version of Rob’s Creamy Vegetable Shake.

Ingredients:

ParsleyLeafy GreensAvocado

Frozen Wild BerriesIce CubesCoconut Milk

Directions:

Blend until creamy and thick. Enjoy!

RecipesKookoo Sabzi Vegetable Shakeadapted from Turmeric & Saffron by ralph hurtig

Kookoo sabzi is a fresh herb dish served for lunch/dinner during Nowruz (Persian New Year). This dish is a great one-pan vegetarian meal made of several fresh herbs and just enough eggs to hold it all together. Once you have all the vegetables cleaned and chopped, the rest is very easy. Serves 6-8

Ingredients:

2 cups chopped fresh flat-leaf parsley 2 cups chopped scallions or chives 1 cup chopped fresh dill 1 cup chopped cilantro 2 tablespoons barberries, rinsed, or dried cranberries also work 2 tablespoons walnuts, chopped 6 large eggs or egg whites 1/3 teaspoon turmeric 1 teaspoon salt 1/2 teaspoon pepper or more to taste 1 teaspoon baking powder Vegetable/olive oil to grease the pan

Directions:

In a large mixing bowl, beat eggs with a fork or a whisk until well blended. Add ingredients, mix until combined. Gently pour the herb mixture into a well-oiled baking dish, smooth the surface and place in a 350 F preheated oven for about 30 minutes or until the center feels firm. Remove from the oven and allow to cool before cutting. Kookoo could be served hot or room temperature with yoghurt, warm bread and pickles.

bit.ly/kookoosabzi

Photo courtesy of Ralph HurtigPhoto courtesy of Dorit Hoffmann

Shared Voices | Summer 2018 9

Trusting others. Trusting your instincts. Trusting your well being to a loved one.

Today in our self-help group we spoke about the whole trust issue. The conversation started with the comment of how, in our group of twelve, we have learned to trust one another. After all, we are sharing our most intimate feelings and our problems on everything from incontinence, to our fears and our joys.

MS makes us even more vulnerable as we age. Some of us are weakening in memory, others physically, most both. More and more we have to rely on others. If we are in a wheelchair we have to trust the person pushing us or helping us in and out of a vehicle. And really, we have been striving our whole life to be independent and strong. MS was not going to beat us. No siree. And yet, it keeps trying. As we stumble through our days we feel vulnerable. On my scooter along the highway, I am aware that I am a moving target, but I trust I’ll be safe... When I transfer from my wheelchair to my recliner there is a moment of – do I trust my legs to hold me up? Getting out of the shower, that moment of hesitation…

Every day we are faced with trust issues, and one of those is to trust our partners who love us and have chosen to care for us. Don't let go. Don't slip. Don't trip. We could be living in terror,

TRUSTby denise howse

but most of us don't because we trust. It is such a powerful feeling; if you can go through a day filled with trust in yourself and the people around you, you are a success. Really. To not live in fear of the unknown or the ‘what ifs’. To take a deep breath and trust.

When we meet with our self-help group, we should be confident that anything discussed is confidential. It does take a while to allow ourselves to relax, laugh with our new friends and share a tear when emotions run deep. We know that we are in a safe place,

and the same is true when we are with our family. Even my 2-year-old granddaughter helps me, pushing my chair or helping me with my shoes. My husband drives me to my various classes and he helps me daily with (mostly) good humour. I know my life would be entirely different if I didn't have my family for love and support. But here's the thing. They trust that I will tell them when things aren't right. I trust they will be there for me and in the end we make it all work.

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

Shared Voices | Summer 201810

Chapter News

Victoria Education Session:

MS 101

Thursday June 28, 2018 11am-1pm Sidney Army & Navy Club 9831 Fourth Street, Sidney, BC

Join Ed Ishiguro (Professor Emeritus, ‘Department of Biochemistry and Microbiology’), University of Victoria as he discusses how our digestive tracts are colonized by trillions of bacteria, microbiota, believed to have a profound influence on health and disease.

The main highlight will be on recent research indicating the possible involvement of certain gut bacteria in the pathology of multiple sclerosis. The discussion will include relevant background information on the immune and nervous systems in nontechnical language.

RSVP by calling Erin at 250.388.6496 ext 7301 or by email erin.patrick@mssociety.ca All Welcome, bit.ly/vicguthealth

June 25, 2018 12:30pm–1:30pm Hilltop House (2nd floor, boardroom) 38146 Behrner Dr., Squamish, BC

Are you sick of feeling tired? Learn how you can combat MS fatigue and improve your overall brain health. It will equip you with practical information, tools and resources provided by health professionals who specialize in MS.

Snacks provided. Register/get more information by contacting Stacey at 1.800.268.7582 ext. 7226 or Stacey.bradshaw@mssociety.ca bit.ly/msfatiguebrainhealth

The MS Society of Canada BC & Yukon, Northern Regional Chapter will be traveling to parts of northern BC to offer you free education sessions to explore why and how people with MS experience changes in mood, and provide the latest info on how these symptoms can be addressed from physical activity, medications and counselling to self-management strategies.

Register now for any of the locations near you: Call Lonnie at 1.800.268.7582, ext. 7259 or register at the following link bit.ly/MSandmood

June 16, 2018, 1-4pm MS Society Victoria Office 306-3301 Douglas St, Victoria, BC V9Z 3L2

For the newly diagnosed and all affected by MS. Join us for an afternoon of MS education.

Topics include: Nutrition, Mindfulness & Pain Management, Counselling, Treatment options, Research & Lived experience.

To register call 250.388.6496 ext 7301 *Space is limited, please RSVP* bit.ly/vicms101

Sydney Education Session:

Gut Health

Northern BC Education Tour:

Mood & MS

Squamish Education Session:

MS Fatigue Management & Brain Health

June 4: Quesnel June 13: Prince George June 15: Vanderhoof June 16: Smithers

June 18: Terrace June 20: Kitimat June 22: Prince Rupert

Shared Voices | Summer 2018 11

Researchby brenda worthington

Sheep disease toxin shines a light on multiple sclerosis

In a recent study, those with multiple sclerosis were found to be more likely to harbor antibodies for a disease toxin normally found in sheep. Could this be the missing puzzle piece? Could a sheep disease offer clues about MS? bit.ly/sheepdisease

The MS GymThe Colorado-based online

group provides free exercises designed to work around brain lesions and slow MS progression, titled the R.I.S.E. Movement System. Co-Founder of The MS Gym (with wife Misty), Trevor Wicken’s 15 years of experience has proved successful, as shown by many testimonials and a growing community. Membership (optional) directs people to daily exercise videos

for their individual symptoms and gives support and resources to feel less isolated. MS Gym is on Facebook and YouTube, but information can go out by mail. Wicken holds a Bachelor’s Degree in Sports Medicine from Colorado State University, and a Master’s Degree in Exercise Science from California University of Pennsylvania. See themsgym.com.

This one peptide could treat MS

For decades, researchers have been struggling to find cures for humanity’s most crippling diseases, such as Alzheimer’s, multiple sclerosis, rheumatoid arthritis, and Crohn’s. bit.ly/mspeptide

Surprise finding could lead to new MS treatments

Researchers identify the overabundance of a specific protein in the brain of people who have MS; next step is to figure out the protein’s role and possibly develop therapies. bit.ly/surprisefinding

Cladribine's effect on patients with highly active MS

A post-hoc analysis from the 2-year study CLARITY has demonstrated that cladribine, also known as Mavenclad, reduced the risk of six-month EDSS progression by 47% vs placebo, as well as having a greater treatment effect (82%) on patients with highly active multiple sclerosis. bit.ly/cladribineeffect

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