shared voices€¦ · shared voices | spring 2020 3 voices cannabis by heidi redl we are not all...
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the voice of bc & yukon
Shared VoicesSpring 2020
Transitioning — Winter to Springby linda macgowan
Shoulder season! What is it? For travellers, it is the period between Christmas and May when airfares, hotels, and travel costs are more manageable. For those who are not travelling, it is the period between Christmas and the arrival of spring — longer daylight hours, warmer weather, keenness to be outside.
Transition is painful when the cold seems to drag on forever. Winter can be fun until the holiday season is over, right? Snow turns to slush, rain is persistent, seasonal decorations are boxed up until next year, and walking outside feels less pleasant every day.
I never want to wish my life away — there is some reward/enjoyment in every day. At the same time, the winter months are attuned to challenges. The simple act of dressing in layers — a tank top followed by a T-shirt, sweater, jacket with the goal of keeping the back warm while waiting for a bus in the cool drizzle that is consistent with living in a rain forest, requires more energy. Add boots, a scarf and toque before venturing out.
Now about the dark! Between November 19, 2019 and March 8, 2020, daylight is at
a premium. We get up in the dark and come home in the dark.
Although getting longer after the shortest day of the year, December 21, the change in daylight in January is less than 2 minutes a day. As April approaches we wake to daylight and for most, our disposition improves, our outlook on life becomes more positive.
Managing Mood During Season Transition: We all have a little bit of SAD (Seasonal Affective Disorder) but don’t wait for spring. Now is the time to get out of the slump: add light in your home and as always, maintain exercise and outdoor activity. Keep your house bright with flowers fresh or dry, and for sure
colour. Get access to natural light by spending some time outside or sitting in a bright spot in your home.
The winter months decrease access to natural vitamin D, the primary source of which is sunlight. Adequate intake is key for many basic bodily processes and insufficiency is linked to depression, fatigue, feeling less motivated and even weight gain.
What to Wear? Make your transition wardrobe inspiring. It’s easy to get stuck in the rut of only winter attire. Dress in fun clothes — a yellow sweater brings sunshine on a cloudy day. Buy a brightly coloured umbrella! Add variety. It is so
Illustration by Katie Lapi
Shared Voices | Spring 20202
EditorialMS 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) [email protected] mssociety.ca
Editorial Committee:
Brenda Worthington (Editor) [email protected] Hoffmann (Co-Editor) [email protected] MacGowan [email protected] Stopps [email protected] Jones [email protected] Hall
Contributors:Writers: Heidi Redl, Karen Careless, Denise Howse, Mari Steiner, Allan MillerLayout: 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
Connect! Receive either of our newsletters electronically — just email [email protected] and write MSenger or Shared Voices in the subject line.
easy to wear the same jeans, same shirt, when you’re just hanging around the house. Ditch the blacks and greys for pastels and radical colours. Toss a silk scarf or bandana over your go-to outfits. Bonus: a scarf will keep your neck warm on cooler days when a wool infinity scarf is just too last season.
What else? Make a list of
priorities. Do the things you really enjoy and forget the rest. Maintain a regular schedule, even when darkness and cold temperatures tempt you to sleep in. Take care of your body. Exercise! Eat healthy food. Get enough rest. Pamper your skin.
Before you know it, you will be singing “Spring is Sprung, the Grass is riz, I Wonder Where the Birdie Is?”
Cont’d from Page One
Ch-ch-changesOur goal at this newsletter is to write about your most relevant
related interests. A province-wide poll and another on Vancouver Island has resulted in changing Out & About, Research News and Chapters’ News in this issue. Let us know what you think; we want to write articles that help, entertain or give practical info while having fun ourselves. After all, we’re in this adventure together.
Laughs to end MSOver 165 people gathered on Thursday, February 27th
at Yuk Yuk’s Comedy Club in Vancouver to enjoy an evening of laughter and good company. The event was organized by an amazing group of volunteers and we would like to extend our warmest THANK YOU to: Melissa Kaerne, John Newton, Michele Clarke and Glen Boswall.
We would also like to acknowledge and thank Ventures International Products Inc. and TuGo for donating raffle items. The 50/50 draw raised over $350 and the winner graciously donated her winnings back to the MSS.
Laughs raised $6000!!! All this by just having a great time. Stay tuned for other fun fundraising events, such as the
Roller Disco – Future without MS on April 25 in Prince George (contact [email protected]) or Kick for MS on April 25/26 in Kelowna (contact [email protected])
Shared Voices | Spring 2020 3
Voices
Cannabisby heidi redl
We are not all the same and
so what works for me may or
may not work for you.
Well, let’s put it out there. This article is going to be about the elephant in the room. That great big green, slightly skunky-smelling elephant.
A lot of people with MS experience nerve pain. Unless you are one of the lucky few (and I sincerely hope you are), you will find yourself dealing with things like trigeminal neuralgia or random sharp, shooting pains throughout your body.
Until last year, the only pain relief available to us came in the form of addictive painkillers like Oxycodone, Tegritol or other pharmaceuticals.
Full disclosure here: I am a child of the ‘60s. I have known about cannabis, pot, weed, marijuana, mary jane or the jolly green giant for a long time. Until last winter though, in the deep throes of a trigeminal neuralgia flare-up, I didn’t know about the pain-relieving benefits of smoking a joint.
This is not an article promoting pot use, not at all. For myself though, I’m convinced of the relief cannabis provides. I had previously ended up in Emergency in screaming pain from neuralgia, which in my case is like chewing on tin foil. Over and over and over. The doctor gave me morphine
and my neurologist prescribed Tegritol, an anti-epilepsy medication to calm my nerves.
We are not all the same and so what works for me may or may not work for you. Tegritol eventually dulled my pain to a manageable level but it knocked my legs out from under me. It calmed the nerves in my legs to the point where I needed a wheelchair to get around. A friend mentioned the pain-eliviating benefits of cannabis. As an ex-smoker who lives down the street from The Cannabiz Store, a new venture in Kamloops, I had no trouble buying some and filling a pipe. The relief was almost immediate and within a week, I was free of neuralgia.
Now, whenever the neuralgia flares up, I grab my pipe, step outside and take a few puffs of my “medication.” A few puffs is all it takes to
control my pain and not only can I still walk well, I’m relaxed and yes, OK, I’m happy. That great big green, slightly skunky-smelling elephant was legalized at the right time for me.
Again, and I cannot stress this enough, THIS IS NOT AN ARTICLE PROMOTING THE USE OF CANNABIS. I’m simply telling you what works for me.
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 of Canada.
Shared Voices | Spring 20204
Today the big calamity happened. When attempting to get breakfast, I carried too many things and dropped a full bottle of maple syrup! My partner came to my rescue and did the huge cleanup without a word of complaint.
Caregivers can be our salvation and respite. As we with MS cope with our daily trials and tribulations, we rely on partners or home care to function smoothly.
Each of us requires different needs depending on the day and the situation. Some days are diamonds and some are coal. Dropping maple syrup
constitutes as a coal day.There are times when I need
help with the everyday stuff like getting out of bed, dressing and hygiene. Other days everything falls into place and I’m almost independent getting ready for the day and make breakfast. Some days I even bake, which I love. To be safe, I have someone else drain pots of water or remove hot pans from the oven or microwave.
Often my requirements fall into the hands of those I love. I don’t know about the rest of you, but I doubt my partner knew beforehand what would be required when we first got involved. However, he never complains or doubts my requests. It is me that lies awake at night wondering what would
Caregivers
Recipes
Caregiversby karen careless
I use these when my energy is low, I’m in a rush, or I’m trying to find a new taste. I have divided my additions into categories, some in the freezer, some fresh and some are just leftovers in the fridge. Use your imagination and experiment.
Protein: any leftover meat, chop it up, throw it in. I have used eggs, beef, chicken, lamb, sausage and my one of my favourite’s BACON.
Cheese: This deserves its own category! It’s a big one
Change a canned soup from HO-HUM to WOW
become of me should he not have the strength to lift me into a vehicle or off the floor. Or, what will happen should he require surgery, convalescence time or help?
In the meantime, I do what I can with thank you (never forget to express your gratitude) and doing the chores I am able to. It is too easy to expect that things will be done for us. I return favours doing what I can when I can (cautious to not create more problems) and giving hugs, kisses, and ‘I love you’ or 'what can I do to help?'
Our caregivers are the reason we are able to keep functioning. Never forget their care and love. We love these unsung heroes. Please tell them so.
because there are so many types of cheese and ways to use them. Such as sprinkling on top or mixing them into the soup.
Dairy: milk, cream, sour cream or yogurt, or dairy substitutes such as cashew cream or coconut milk
Herbs/Spices: Of course, the old standbys salt and pepper, garlic, fresh basil or rosemary, and onion, a perfect veggie in all its forms. I have added allspice, steak spice, ketchup/HP/Worcestershire/Tabasco/hot sauce/etc. Add a slight bit of
acid such as balsamic vinegar or lemon juice.
Veggies: Preferably fresh but could be leftovers, frozen or any hearty veggies will work.
Carbs: here I add croutons, tortilla chips, crackers, prepped noodles and grains, if you can imagine it, give it a try.
Being Prepared: As most of us have a lot of this stuff readily available. For example, I cut up leftover roast, put in sealable bags and later add it to my soup. Same with veggies.
Well here’s wishing you well and hope your endeavors turn out tasty.
by ron jones
Shared Voices | Spring 2020 5
Other pluses; users sit upright at eye level with walking companions;
weight is supported by the seat with no stress on the lower body; the handle bars provide additional support and can be adjusted to suit; and feet remain on the ground keeping users stable and safe.
I got my Alinker last fall; it's a lot of fun and great exercise for my legs. Depending on your ability, you might need to be patient as it takes some getting used to, (like anything new.) On their website it says there is talk about designing a power assist which would be great for hills!
People who live with mobility challenges such as MS, Rheumatoid Arthritis, Parkinsons, Cerebral Palsy, fibromyalgia and amputees gave testimonials, and you'll find videos on YouTube.
You can “rent to own” which means you start with renting the bike for a minimum of 4 months for a total of $1,000; the second option is to crowd-fund in which you sign up on their website and they will organize your campaign; the third option is to buy one for $2,630.Website: thealinker.caMy email is: [email protected] if you have any questions.
Getting Around
Do you remember the carefree days of your youth, riding your bicycle with a sense of freedom with not a care in the world? Fast forward to 2020 and enter The Alinker Walking Bike. It's a cool, bright yellow non-motorized, 3-wheel bike with no pedals. Inventor Barbara Alink is a Dutch designer, architect and humanitarian who now lives in Vancouver.
Barbara decided there was a need for some kind of device to overcome the stigma of a walking aid after her mother commented while passing some elderly people using canes, walkers and scooters, “over my dead body will I use one of those.” Four prototypes later and the Alinker was born 2014 in Holland and came to North America two years later.
She says “our goal is to make it as easy and fun as possible for people to stay physically active, socially connected and emotionally engaged in the community. It is also sunny (being yellow) and makes people happy and because it stands out it is safe.”
So, you ask, in order to ride one of these bikes, what important details do I need to know?
The Amazing Alinker 3-Wheel Walking Bikeby anne stopps
Fast forward to 2020
and enter The Alinker
Walking Bike. It's a
cool, bright yellow non-
motorized, 3-wheel bike
with no pedals.
ü You need to have some command over your legs (as you will be using muscles you have not used for a while);
ü Be able to lift one leg while standing on the other. (There is a seat);
ü Be aware of your surroundings;
ü Know your limitations in order to not overdo it or be unsafe.
Shared Voices | Spring 20206
Mindfulness
Headspace
A great app for mindfulness, sleep, movement and meditation.<$6/mo or $70/yr headspace.com
Online Courses
Edx
Interested in free learning? There are many free online courses worth exploring. Through edx.com, for example, the topics of health and nutrition include “The science of beer” and “Lifestyle Medicine.” Many are self-paced, taking off the pressure on some of those energy-conserving days. edx.org/course/subject/food-nutrition
LOL — laugh out loud
I Heart Radio
It’s always great to laugh and maybe you find something in these top-rated podcasts that tickles your funny bone. bit.ly/comedyLOL
Gray Matter Boost Anyone?
Duolingo
Maybe for your next vacation or some elevator small talk or just because you read the research link and thought: hmm, maybe I’ll try learning another language. This is a free online program with over 30 different languages to try out. duolingo.com
In & About by dorit hoffmann
Out & About:In response to feedback, we are adjusting a few pages. Out & About originated in the mid 1990s, when print and email were the sources of information sharing; fast forward 25 years and we have social media and YouTube; life is different, and we are now provincewide. We will just publish an outing for each chapter, with an additional for Vancouver that visitors may come see.
The first page is now In & About, focusing on health and wellness tips and links. We hope you enjoy the changes.
Shared Voices | Spring 2020 7
Vancouver
Vancouver Naturopathic Conference
March 7, 8:30am, BCIT Downtown Campus, 555 Seymour St.Theme is “Clinical Tools for Mental Health.
The Health and Wellness Show
March 14 & 15, 10am-5pm, Tradex, 1190 Cornell St.Exhibitors from the health and wellness industry ready to help.
Abbotsford
Relive the Music 50s & 60s Rock 'N' Roll
March 18, 7:30 pm, Prince George Playhouse, 2833 Recreation PlaceA live band takes the audience through memories of the 50s and 60s.
Prince George
Healthy Adult Aging and Balance
March 18, 10am-11am, UBC Okanagan, 3333 University Way, Kelowna, 250.807.8000Research seminar by the Institute for Healthy Living and Chronic Disease Prevention.
Okanagan
Victoria Women's Expo
March 7 & 8, 10am-4pm, G.R. Pearkes Recreation Centre, 3100 Tillicum Rd.Today's trends and up-to-date products, information and services geared towards women of all ages.
Victoria
Out & About by linda macgowan
Shared Voices | Spring 20208
Getting Around
When Ruby entered my life I was at a low point. She offered herself freely to me but as in all relationships were there is joy, there is also disappointment.
Years ago my left leg wasn't working well and as a consequence, my balance was unreliable. I would look at our huge garden and feel an ache deep in my chest: of loss and anger and a deep sadness of what once was but was no longer. Freedom. To walk the trails of my town and stroll along the beaches. To weed my garden. Finally my brain disconnected and I stopped smelling the smells of spring. It was simpler and safer to stay inside.
But one thing about people with MS. Put us in a corner and once we stop feeling the pain of loss, we usually come out fighting. So Ruby came in to my life at just the right moment. She is, of course, red. She is big boned and sturdy to take the terrain I demand of her. She is a 4-wheel Invacare scooter and my saviour. Independence!
My first adventure? A stroll with my friend to Gibsons Landing. We started down the hill and my nose caught the whiff of grass-freshly cut- and spring flowers. I stopped Ruby and sobbed. My senses overloaded with the smells of spring. The outdoors I had been missing. We laughed and
Rubyby denise howse
Left: Me and my daughter and Ash-Lee Right: Me and three of the grand kidlets
chatted and I was giddy with excitement. I was out! Then, in the middle of the steepest part of the hill, Ruby came to a sudden stop. I forgot to mention we were enjoying the first ice cream cones of the year at the time! My friend told me to hang on while she pushed with all her might. And do not drop the cones. We made it to a level area and sat. What a scare! Eventually we limped home and the next day Ruby was diagnosed with faulty batteries. But oh the memories of that first adventure!
I have been dumped in a deep hole and I have been stuck in a mud puddle. I have been abandoned in a blackberry patch because I simply had to get that big juicy berry. I have broken down on the highway. One little boy gave me a fire chief hat to wear and he said Ruby was a fire truck and I her chief. I have had races with children and joined parades. I have gone on countless walks with my little dog riding
shot gun, re-discovering the thrill and joy of nature. I have met friends for lunch and musical events. The grandkids fashioned me a coyote/cougar club and I have bear spray. I have met them all and Ruby and I are still here to tell the tale. Ruby 1 is now Ruby 3. Stronger, younger and more agile. We have been laughingly clocked by the police going 11 km/h in a school zone. My little dog, Ruby and I spent many Sunday's at agility classes and I smile thinking of the tight manoeuvres we had to make on the course.
Without Ruby, I would be living an isolated life longing for company and wishing I could have my old walking life back. Now as I cruise along with a grandchild or two on my lap and a smile of contentment on my face, I understand the special bond and the freedom I have because of my pal Ruby.
Shared Voices | Spring 2020 9
Voices
I was never very athletic, but tall for my age with long legs; when the coach tried to interest me in high jumping, I could never figure out my left foot from my right. Looking back, possible early MS symptoms? Now, however, I am grateful for those legs.
When I was diagnosed in 1976 'experts' said not to do strenuous exercise. I was weak and very wobbly getting out of the hospital. I started just walking around the block and gradually got my strength back.
Walking was my answer; I could do it anywhere and did not need special clothes or machines. So, with a good pair of shoes off I went and I found was enjoying it. I learned to plan not to overtire myself, a half an hour out and the other back.
When I started to fall, I got a cane. That gave me security
MS in motion — Walking is my Answerby mari steiner
and more balance/support and some freedom to go where I wanted to without help of a partner. I still use a cane when I am walking with my husband. Now I have Dolly, my walker, and we go on all sort of adventures. The point is I never stopped walking. I am slower, but I have time. I stop when I get tired but keep going, otherwise MS wins. MS saps your strength: it wants you to give in. I will NOT give up going to the library or for coffee with my friends.
My journey with MS has been long and I had to change a lot of things but even without MS life will make us change things. I no longer stand on one foot to put on my pants but neither is someone much older but otherwise healthy. So, you make adjustments that work for you. I plan my trips so I do not have to cross
Walking was my answer; I
could do it anywhere and
did not need special clothes
or machines. So, with a
good pair of shoes off I went
and I found was enjoying it.
the street unnecessarily. I walk purposefully. Also, I do water exercise to maintain my strength.
When I am out walking it is not only exercise, but a lift to my soul. I feel lighter and trouble free. I keep reminding myself, use it or lose it, and am so grateful I can!
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Shared Voices | Spring 202010
Division News Research Newsby stacey bradshaw by brenda worthington and stacey bradshaw
Shared Voices | Winter 2019 10
Equipment Donations
Do you know anyone looking to donate gently used medical equipment that may help someone living with MS in BC and Yukon? MS Society of Canada, BC and Yukon Division Equipment Provision Program (EPP) is in need of the following types of items: • Mobility Aids: manual
wheelchairs, power wheelchairs, walkers, scooters, backrests, cushions, transport wheelchairs (max dimension 20in x 20in)
• Personal Care: grab bars, safety rails, No hygiene equipment
• Home Care: patient lifts, lift chairs, hospital beds (Invacare beds only), mattresses, freestanding and tension mount systems (ARJO brand ONLY), Superpoles
Requirements:• EPP can only accept
equipment which has been purchased within the past 4 years and doesn’t require any repairs
• Please email us a picture of the equipment and the serial number.
Gift-in-kind tax receipts (based on current assessed value) are available for donated equipment. Feel free to send any inquires to the EPP Coordinator @ 604.602.3207 or [email protected] with any questions.
Research News
When does MS begin? Researchers from the Harvard T.H. Chan School of Public Health in Boston report on a study that examined blood (serum) samples from 60 military personnel who went on to develop multiple sclerosis years later. Compared to samples from a control group, those who eventually developed MS showed higher than usual levels of a molecule (neurofilament light chain – NfL) that reflects damage to the nervous system. The levels of NfL were increased as early as six years before the clinical onset of MS. bit.ly/MSbeginRepurposing an existing drug for MS: The drug, called DITPA, mimics the action of a thyroid hormone and has been used in clinical trials to treat a rare disorder (AHDS). Dr Petratos, of the MS Society of Australia, has shown this drug has the ability to encourage precursor cells within the brain to become myelin producing cells, and these then might enhance the ability of the body to repair areas of damaged myelin in the brain and spinal cord. He has shown that this has promising effects on laboratory models of MS and it may reverse some symptoms of MS. bit.ly/repairMSStudying alpha lipoic aid as treatment for MS: Lipoic acid (LA) is an inexpensive, natural, antioxidant with multiple biological effects that have shown benefit in the disease processes associated with progressive MS in both animal models of MS and small human trials. LA had a beneficial effect as seen on brain MRIs and maintaining walking speed in a pilot trial of LA in secondary progressive MS. bit.ly/lipoicms Online meditation course improves short-term well-being in MS: Online mediation training, involving 139 people with relapsing-remitting multiple sclerosis (RRMS) and secondary progressive multiple sclerosis (SPMS), improved quality of life (QoL) and lowered depression, anxiety, and sleep problems. bit.ly/onlinemeditationms
Shared Voices | Spring 2020 11
Helping Ourselves
How I rollI travel with a cane, a rollator (four-wheeled walker), or locally with a power wheelchair.
Get the DiscountsWhen going to sites or performances, I have used the Easter Seals Access 2 Entertainment Card (Canada) or asked for a free companion ticket. In most cases, we got a free ticket for my wife as my travelling companion, including all the theatres in the UK and the London Eye. Most of the time, we were put at the front of the line and given VIP treatment. Always smile and ask!
Plan A, Plan B, Plan CMost travellers have a Plan A. Some have an A and a B. We have an A, B, and C. Uber and Lyft have been a relief when we have walked a lot, and I start to crash. Be flexible.
Help tips: Travelling for the First Time with a Disability by allan miller Smartphone
I always travel with my smartphone and we use it to order taxis, Uber, and Lyft, find restaurants and, of course find public transit routes. Because I use it for photos, too, I don’t have to carry a camera. Hotels, most airports and coffee shops will have free wifi.
Plane, train, ferry, or carWe travel locally by car or rent cars when we need to. We have found that public transit is good in most cities. Do your research and contact local tourism centres. Trains in the UK are good, and AMTRAK in the USA is inexpensive and accessible. BC Ferries will provide wheelchair assistance and put you at the front of the line.
Travel LightI have a master list on my computer for packing, and I modify it for different trips. Medication, tablet, and smartphone go in carry on, and we check the rest.
Use Available AssistanceWe always use wheelchair assistance at airports and other venues. If I fall, I will have a bad day, but the airport staff will have a worse day because they will have a lot of forms to fill out! Some airport transfers require long walks, and wheelchair or electric cart assistance is invaluable. When you book, tell the airlines, ferry, and train staff that you will need assistance.
Pause and pace yourselfWith MS fatigue and MS cog fog, I have to pause and rest a couple of times a day. That’s what coffee shops are for!
Savour the momentI have experienced many kindnesses when asking for assistance, and other times they have been spontaneous. Travel includes the unexpected, and that will enrich your trip.
Reference bit.ly/scibcaccessibletravel Contact Allan Miller at [email protected]
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Sunday, May 24, 2020Register today at mswalks.ca
CHANGE THE FUTURE OF MS
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