shared voices - ms society · 2018-11-30 · 2 shared voices | winter 2018 ms society of canada bc...
TRANSCRIPT
“My dad thought up the greatest Christmas gift a few years ago; he cooked a turkey in his home in Victoria. He delivered it in quarters, wrapped in foil and labelled white and dark meat. The mashed potatoes, carrots and dressing were in separate Ziploc bags. He even put the gravy in plastic containers in the freezer then popped the chunks out placing them in plastic bags. The whole Christmas
the voice of bc & yukon
Shared VoicesWinter 2018
Merry Christmas from the team at Shared Voices!
We all hope that looking back on 2018 brings you lovely memories as well as upcoming good times in 2019.
Here’s a time and energy-saving idea from Linda MacGowan from the winter 2004 issue that’s just as helpful today:
dinner was delivered to me frozen – requiring only a microwave, an oven for the turkey and a pot for the gravy. The family arrived to the smell of turkey in the air and no one was the wiser. If you have a friend or family member to help, your whole Christmas dinner can be prepared this way and served on Christmas Eve or Christmas Day just as it used to be. Just add cranberry sauce and enjoy.”
Shared Voices | Winter 20182
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) [email protected] mssociety.ca
Editorial Committee:
Brenda Worthington (Editor) [email protected] Hoffmann (Co-Editor) [email protected] MacGowan [email protected] Stopps [email protected] Hurtig [email protected] Jones [email protected] Hall
Contributors:
Writers: Michelle Querns and Michelle Hewitt Illustrator: Karen GarryLayout: 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 EditorialUshering in a New Yearby brenda worthington
One kind word can warm three winter months
– japanese proverb
I’m looking for Shared Voices bit.ly/sharedvoicesnewsletter
This issue closes 2018 for us as it ushers in a new year. Our poll, sent out in the late spring, had good suggestions from you and ideas for moving forward. We have already incorporated some and hope other new ones will keep this newsletter fresh and relevant. On a new ‘Advocacy’ page, Michelle Hewitt from Kelowna gives her viewpoint on plastic straws; I look forward to articles on the topics you are working on already and soon submitting. Many sound intriguing and fun!
Each winter, we look back on our year; at both our successes and struggles, and make what we hope will be lasting resolutions. If only we had a magic wand reassuring us our health would remain stable, or that a miraculous cure was on the doorstep in 2019! However, I believe not knowing the future keeps it full of possibilities (I’m not one to read the last page of a mystery novel beforehand).
Shared Voices has had a theme of community articles this past year highlighting how much we all need each other. With technology, no one has to be isolated. Reach out and contribute or take what is offered. You won’t be sorry!
Shared Voices | Winter 2018 3
Voices
I have MS. I had been very active but as the years passed, was becoming weaker and now used a wheelchair. I then started having home care support, and if I kept deteriorating at this rate, was looking into care homes.
Life changed at Pony Pals. I couldn’t wait to get on a horse and appreciated the one-on-one attention Candice Miller gave.
When I first started riding I could barely stay on the horse; hanging on to the bar attached to the saddle, we would slowly walk around the arena. The thirty-minute lesson seemed a lifetime.
After Pony Pals moved locations, the slight incline of the outdoor arena and trip to the dyke allowed me to practice my balance leaning back/forth as Mercedes walked. In the arena there are now exercises walking through cones for side movements; stop and go at the different letters also helps me balance. My legs are sore from guiding her through her paces. I’ve learned all sort of tricks; your eyes guide the horse in the direction you want her to go; rocking your hips increases her gait and keeping one rein against her neck keeps her on a straight path. It is a relief to take my feet out of the stirrups to stretch my legs.
This is my tenth year of riding at Pony Pals. Over the
Ten Years with Pony Palsby michelle querns
years I have broken both legs, not from riding but transferring in my house. The second time in 2018 when I broke my tibia/fibula, I thought, this is game over. Experts wanted me to stay in bed for a long period, but I was up within a week with the help of a hoist. I can no longer walk but can transfer out of my chair. I cannot stand for more than a minute, but my back remains straight and I can sit erect. All I could think about was getting back to riding.
Slowly I have let go of the bar using the reigns to guide Mercedes, and the ever-present side walkers are now there just in case. My riding time has gone from 30 to 45 minutes; I am stronger and no longer think of moving to assisted living.
The ring toss – grabbing a ring from the pole whilst on the horse and placing it on top of a barrel on the other side of the
arena – was a game changer. It resulted in my biggest change; to bend over and pick up items as small as a coin off the floor without using a reacher.
I’d be lost without Pony Pals. It is well run with happy horses, clean stalls and very kind volunteers who stay for years. May it go on forever!
Pony Pals: 3885B 96 Street, Delta. 604.590.0097
See additional therapeutic riding centres on page 8.
When I first started riding
I could barely stay on
the horse; hanging on to
the bar attached to the
saddle, we would slowly
walk around the arena.
The thirty-minute lesson
seemed a lifetime.
Photo by Candice Miller
Shared Voices | Winter 20184
Did you know?by the shared voices committee
Meals on Wheels are available in the majority of areas of BC. These guidelines show examples and prices, but check your area for more specific details.
Delivery: Meals are delivered between 11am and 1pm and are available Monday through Friday (excluding statutory holidays). For your safety, volunteers cannot leave meals outside your door if you are not home.
Client responsibilities: Commit to a minimum order of five deliveries upon starting the program, be home for delivery between 11am and 1pm and give notice of intent to cancel a meal before noon of the previous business day.
Meals & Prices: The hot meal includes soup or salad, entree and dessert and costs $6.75. Frozen entrees can also be provided for days when regular delivery is not available or if frozen meals are preferred at a cost of $5.75.
Payment: Invoices are mailed to clients or to a third party at the end of each month. Payment methods: Cheque (payable to "Health and Home Care Society of BC"), money order, Visa or Mastercard or in person at our office (exact payment only please – no change provided).
If you prefer recipes you can cook, you might like Chef’s Table, HelloFresh or freshprep (Vancouver area only): with these companies, you choose the meals, they deliver the ingredients to your door, and you prepare them.
If you know of any such services in your area, tell us. We’d love to have it.
To save you energy and time, food delivery services
To save you money:If you use a smart phone, WhatsApp provides free messaging over Wi-Fi: WhatsApp uses your phone's Internet connection or public Wi-Fi, as available, to let you message and call friends and family.
Close Totals!
You wanted to know how much the MS Society events raised. The 2018 totals for BCY Bike was $625,742 and Walk was $670,205 division-wide.
Illustration by Karen Garry
Shared Voices | Winter 2018 5
"Salt-rich Diet Appears to Trigger Inflammation and Promote Autoimmune Disease by Impact on T-cells," Study Reports: Friends of Tel Aviv University
Summary: A new study finds that certain environmental conditions like salt concentrations and temperature may precipitate structural changes that take place in myelin sheaths in the onset of multiple sclerosis (MS). Myelin sheaths are the 'insulating tape' surrounding axons; axons carry electrical impulses in neurons.
"Since we now have a new biophysical understanding to investigate the degradation of myelin sheaths, we are following up on other candidates that can induce such structural transition. There are several molecular candidates, including specific proteins and other alterations in the myelin's fatty acids, that are relevant, which may unravel further insights to fight multiple sclerosis and related disorders," researcher Shaharabani concludes.bit.ly/salt-richdiet
Research Newsby brenda worthington
Fort McMurray-Cold Lake MP David Yurdiga is pushing for changes to federal laws so people with episodic illnesses, such as multiple sclerosis, will have better legal protections.
The private members’ motion, which passed unanimously in the House of Commons on Tuesday, instructs the standing committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities to begin reviewing legislative and policy changes that could help affected people.The committee will also hear how people with these illnesses struggle to access treatments, secure housing and move around their communities, as well as employment.
“A lot of times, people who are employable are suddenly not employable because of those days,” said Yurdiga. “A lot of legislature has to be changed to accommodate individuals with episodic disabilities.” bit.ly/MSlegislativepush
New conceptual framework, called PRIMERS, has been proposed as a way of better understanding how physical exercise works to improve cognition and mobility in people with multiple sclerosis and using what’s learned to create new types of rehabilitation therapy for MS patients. PRIMERS, conceived by a team led by researchers the University of Alabama, is a way of examining the relationship between exercise and adaptive neuroplasticity — the brain’s ability to change over time and adapt to different situations.
According to the PRIMERS conceptual framework, physical exercise promotes adaptive neuroplasticity by inducing both the integration and processing of multiple signals in the brain, which are then translated into a complex motor response as exercises are performed.
“We argue that exercise can be viewed as an integrative, systems-wide stimulus for neurorehabilitation because impaired mobility and cognition are common and co-occurring in MS,” the researchers wrote. bit.ly/msprimers
Salt-rich Diet Legal Protections PRIMERS
Shared Voices | Winter 20186
Out & About by linda macgowan
December 13–16, all day, Sun Peaks, 1280 Alpine Road, bit.ly/kamloopskick-offFree admission
Kamloops: Holiday Kick-Off Weekend
December 2, 9, 16, 23, 30, 1-3pm, Books and Company, 1685 3rd AvenueA relaxed gathering of logophiles & board game lovers.
Prince George: Scrabble Sundays
November 30, December 1, prspecialevents.com/winterfest.htmlIncludes caroling, lighting the trees, breakfast with Santa, parade, craft fair and more
Prince Rupert: Winterfest
Most of the events described here relate to Christmas activities but we still have January and February to manage before birds return and buds show up on trees. Minimize your encounters with rain and snow; invite a friend for tea, have a pot-luck dinner, have Scrabble & Monopoly game nights. Invite friends to bring their voices and other instruments and make music. Rest, read, sing and don’t forget to exercise!
December 16, 5pm-9pm, Evangel Downtown (101 Avenue) Dancing, bonfire, free hot dogs, carnival games, and so much more! Free.
December 31, 5-8pm, Tamitik Jubilee Sports Complex, 396 City CentreCelebrate together with games, swimming, skating – fun for the whole family. Free admission.
Fort St. John: Winter Party
Kitimat: Family New Year's Eve
Shared Voices | Winter 2018 7
Magic of Christmas at Butchart Gardens December 1 – January 6
Christmas Lights Across Canada December 6 – January 6
Shine a Light on Youth – This Christmas December 1, 1:30–4:30pmThreshold Housing Society - Winter Carnival in Bastion Square. Live music, hot chocolate, Santa Claus, and Christmas-themed activities for all to enjoy!
Farmers Market December 8, 15, 22 and 29, 8:30am–12pm, 644 Veterans Way, Qualicum Beach
Sole Sisters Walking Group December 5, 12, 19 and 26, 10–11am, Location information: bit.ly/solesisterswalkWhile this walking group program in the Oceanside area is intended for women 50+, all ages and all levels of fitness are welcome. No one will be left behind.
Lions & Save-on-Foods Free Family Skate December 2, 12:15–1:45pm, Oceanside Place Arena, 830 West Island Hwy, Parksville.Children must be accompanied by an adult, 19yrs+, Free admission and skate rentals.
Qualicum, Oceanside, Parksville Vancouver and Coquitlam
8th Hot Chocolate Festival across Vancouver January 20 – February 15, To find a location near you: hotchocolatefest.comVancouver’s best chocolatiers come together to make the humble hot chocolate hotter than it has ever been!
Lights at Lafarge November 24 – 3rd week of January, Town Centre Park, CoquitlamHoliday lights and illuminations around the lake. Venue is conveniently located near the Lafarge Lake-Douglas SkyTrain Station. Free admission
Kelowna
Light Up Big White December 1, 5-6:30pm, Big White Ski Resort, 5315 Big White RoadLaser show, family carnival, games and prizes, carolers, magic of thousands of LED lights all coming to life by 6:30 pm, spectacular firework display. Free admission.
A Touch of Christmas December 1, 9:30am-3:30pm, New Life Centre, 2041 Harvey Ave. handsinservice.ca/event/toc2018This Christmas Crafter and Vendors Fair is a unique one-stop experience. Cost: Adult (16+): $2
Victoria
Shared Voices | Winter 20188
The Volunteer Engagement Coordinators (VHC) team is excited to announce the winners of our BCY Awards. We received numerous nominations this year reflecting their amazing work and commitment. The selection committee had a tough time choosing the recipients with so many deserving candidates. Seven individuals were recognized for their exceptional volunteer efforts on Nov. 3 at the inaugural MS Connect ’18 conference in the Sheraton Guildford Vancouver Hotel.• Volunteer Impact in Programs and
Services: David Christian, Vancouver• Volunteer Impact in Fund Development:
Patricia Wilson, Surrey• Volunteer Impact in Advocacy and
Awareness: Michelle Hewitt, Kelowna• Volunteer Impact in Community
Engagement: Sandra Stibrany, Prince George
• MS Caregiver/Carepartner: Tom Lazar, Burnaby
• MS Champion: Sherri Mytopher, Fort St. John and Joanne Craven, Abbotsford (tie)The awards ceremony was a great
success and well received. Please join us in congratulating these incredible volunteers for their hard work and dedication. We could not reach our goals without their help!
LOWER MAINLAND AND FRASER VALLEYRichmond Therapeutic Riding Association: 3671 No 3 Road, Richmond, 604.241.7837
Southlands Therapeutic Riding Society: 3095 West 51st Ave., Vancouver, 604.261.1295
Valley Therapeutic Equestrian: 3330 256th Street, Aldergrove, 604.857.1267
BCTRA: 885B 96th Street, Delta, 604.590.0097
North Fraser TRA: Box 31601 Meadowvale Shopping Centre, Pitt Meadows, 604.462.7768
North Shore Riding Centre: 1301 Lillooet Road, North Vancouver, 604.988.5131
PRDA: 1088 208th Street, Langley, 604.530.8717604-530-8717
Elk View Equestrian Academy: 9815 Chilliwack Central Rd., Chilliwack, 604.745.3699
INTERIORCDSCL: 849 Erickson Rd., Creston, 250.402.6793
Powell River Therapeutic Riding Association: 4356 Myrtle Avenue, Powell River, 604.485.0177
VANCOUVER ISLANDVictoria Therapeutic Riding Association: 6917 Veyaness Rd, Saanichton, 778.426.0506
Comox Valley TRS: 4839 Headquarters Rd., Courtenay, 250.338.1968
Cowichan TRA: 843 Tzouhalem Rd., Duncan, 250.746.1028
Errington TRA: 7581 Harby Rd W., Lantzville, 250.248.6614
Volunteer Awards
Additional Therapeutic Riding Centres in BC
(L to R) Sandy, Sherri, Patricia and Tom(Centre) Kanata (Michelle Hewitt’s granddaughter) Joanne (positioned in front)
Shared Voices | Winter 2018 9
Division News
The Prince George MS Self Help Group is planning to add an evening meeting, for people who work, at the Baptist Church on 5th and Gillette. It will take place on the third Wednesday of each month. They are NOT cancelling the 1-3pm meetings on the third Thursday of the month.
For anyone interested, Amy would like to know what time frame works for you. Please email [email protected] with your preferences.
Don’t get left out! Receive either of our newsletters electronically — just email [email protected] and write MSenger or Shared Voices in the subject line.
An MS Society member – one of us – has written a family-friendly musical that will be performed Feb.14 - 16th, 2019 (three evenings at 7:30 and Sat.16th at 2pm). Based on Dorothy Canfield Fisher's novel of the same name, it is like an American Anne of Green Gables. It has a cast of 35+, with children and adults, seasoned performers and newbies. Evergreen Cultural Centre 1205 Pinetree Way Coquitlam, BCTickets: $20 adults $15 students/seniorsCall 604.927.6555 or purchase online at evergreenculturalcentre.caA perfect Valentine’s Day outing!
The Northern Virtual Support (NVS) group is for anyone in the Northern Chapter, living with MS, who wishes to meet likewise people. The online support group is a safe and welcoming place to discuss fears, ask questions, share stories, and gain information.
NVS group has been offered since June of this year. There are currently 30 individuals signed up for it and we have a range of 4-10 participants every 4th Friday of the month. We use a platform called Zoom, which allows for an interactive way to connect. There are two ways to connect when using Zoom. One is to sign-in using video and the other is via phone. Before each meeting we send out a “meeting code” which is as simple as one click and it takes you right into the online meeting room. We enjoy adding a piece of education to each meeting and always are open to new topics participants wish to discuss. Two recent interests were mindful meditation and diet and MS. There is always a check-in at the beginning, which opens the conversation to sharing whatever is on your mind; this often leads to invaluable discussion. The participants have a wealth of knowledge and it’s great to hear what others know. To join this group please email [email protected]. We look forward to hearing from you!
Northern Virtual Support (NVS) Group
Prince George MS Self Help Group
Shared Voices | Winter 201810
Division News
MS Connect Nov 4th, 2018by dorit hoffmann
Last Sunday a few of us went to this event with the focus on exercise, wellness and living well with MS, and the speakers were outstanding. My favourite was the panel with some MS health and wellness experts including Dr. Sarah Donkers ([email protected]), a physiotherapist and researcher from the University of Saskatoon. Talk about passion; she is determined to make her patients’ lives better. One great program they have started is a web-based physiotherapy, as some people travelled 3-4 hours to come to their sessions. Her group does an initial assessment and provides specific activity suggestions online, with follow-ups. Sarah is studying the effects of movement and activity on MS – and dear friends, it’s promising. Though initially it is possible that symptoms might increase and everybody has to find that balance, like with the general
public, MS and movement are good buddies. Improved strength, balance, walking performance and a decrease of depression, fatigue and comorbidity (such as diabetes and heart disease) are just some of the benefits. One study participant said: ‘Living with MS is an uphill battle with or without exercise – might as well exercise.’ Great attitude. They are looking at even more exciting findings for the long term: a decrease in the inflammatory markers, enhanced remyelination and more effective neural pathways.
Dr. Sarah’s guidelines were simple:• It’s never too late to start.• Start where you are at. • Be persistent. • Ask for help.• Small bouts – even 10
seconds – are beneficial.
• Start slow and gentle. Initially increase intensity rather than duration.
• Gauge your fatigue, give it a quantifiable number, like 4 out of 10, try some movements, check in with your body and keep a journal.
Maybe you are lying awake at 3am, like me; why not try to visualize moving your legs, feel this quadriceps muscle lift your knee as if you take a step? Research has been shown over and over again that during imaginary exercises the same areas of the brain are activated as in “real” exercises.
Check out visualization research at bit.ly/visualex
Shared Voices | Winter 2018 11
Advocacy
As the festive period approaches, we tend to be in social situations more. Perhaps we go to parties, or meet with friends and families. Perhaps we treat ourselves to a festive drink at the local coffee shop. But for some of us, drinking out has become more difficult. The recent drive to ban single-use plastics, and with it, plastic straws, has become mainstream; from the local coffee shop to the City of Vancouver to the federal government. Going out and knowing a plastic straw will be readily available has become a thing of the past. For those of us who rely on these straws, it makes planning to go out all the more tricky.
Yes, the environmental cost to the planet and our oceans of
Plastic Straws Suckby michelle hewitt
single-use plastics is huge, and we should all do what we can to minimize our impact. However, the biggest pollutant to the oceans comes from industrial fisheries, and when it comes to beach clean-ups, plastic straws and drink stirrers are way down the list, coming in as the 6th most found item. The top 3 items? Cigarette butts, food wrappers and plastic bottles.
When I mention the need for plastic straws to others, even the most well-meaning people suggest all manner of options I could try. However, people who need these straws have already done the research, and they know what works best for them. In fact, this issue has become so widely discussed by disabled people that someone made this chart to explain why the other
versions don’t work, and that plastic straws are the option that we have found to work consistently.
If you’re not someone who uses a straw, but you want to support someone that does, what can you do? It’s the same as any issue where you want to support others – be an ally. Walk along side them, educate yourself about the issue, and don’t speak for the person needing support – let them speak for themselves. And if someone tells you plastic straws suck, say yes they do – for a very good reason!
For now, I have a package tucked in my purse.
More information can be found on all aspects of the straw debate on Michelle’s blog on mssingabout.com.
Many disabled people need plastic straws to drink, eat, take medications, etc. Here's how current alternative, resusable options are a harm to us.
*Pressure to create bio-degradable straw options that are safe for the environment AND for all disabled people should fall upon manufacturer, NOT marginalized disabled consumers. *Once we accept the necessity of plastic straws, we can work together on other environmental initiatives that are effective, inclusive and accessible.
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.
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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
February 7, 2019 • ThursdayYuk Yuk’s Comedy Club • 2837 Cambie St., Vancouver
In support ofDoors open @ 7 pm • show starts @ 8 pm
Contact Adrianne Boothroyd at 604-689-3144 for tickets.
New laughs! New comedians!New location - close to transit!
Wheelchair accessible!
$25 admission
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