shared voices - ms society of canada€¦ · shared voices winter 2017 i first started experiencing...
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the voice of bc & yukon
Shared VoicesWinter 2017
I first started experiencing unusual cognitive impairment due to MS long before being diagnosed. There were periods in the day when I was overwhelmed with dizziness and fatigue. I worked as a computer programmer at an insurance company and frequently used one of the beds at the company’s nursing station to take a nap during my lunch hour. I never questioned why I might feel so groggy, but found it difficult to continue with my work analyzing data and writing computer programs unless I was able to rest.
After being diagnosed with MS in 2001, I spent many years discovering how this disease
“Brain Fog” — A Cognitive Syndrome of MS
affected my spatial perceptions as well as my ability to think and reason. I was promoted to work in the “Data Warehouse” department (of twenty-five workers) to organize information from their Mainframe computers onto PC servers. My department manager, aware I had MS, was very accommodating in helping me cope with some visual deficits caused by optic neuritis; she provided me with a larger monitor and placed me at a window seat to improve the lighting at my work station, but gradually my self-esteem was being diminished in subtle ways.
One day I realized I was having difficulty locating an icon on the screen that should
have been clearly visible. My teammates joked and eventually we all laughed when they helped me find it. That was only the first incident of many more embarrassing moments to come. I realized my ability to continue as a programmer/analyst was being put to the test when I struggled remembering the names of some co-workers while trying to acknowledge them during meetings. What frustrated me was how I’d remember their names sometime later in the day or I might run to their desk to read the names only to forget them again. Cognitive impairment was the defining moment preventing me from using my skills to write new or troubleshoot existing programs.
I was proud to be part of a team, but my ability to work was now undermined by the stress of dealing with a cognitive impairment associated with MS called “brain fog.” I have experienced all the most common symptoms including dizziness, vertigo, depression, emotional changes, confusion, forgetfulness and headaches. According to an article presented by the
by ralph hurtig
Illustration by Katie Lapi
Shared Voices | Winter 20172
Best WishesEditorial
It’s natural to look back at the year as it draws to a close. 2017 has been a dilly. From the weather — a long, cold winter to a late spring and then record-setting heat in summer — to the fires, everyone has been affected. Now it is nearing Christmas, and
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 [email protected]
Contributors:
Writers: Denise Howse, Heidi ScottLayout: 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
DANA foundation, Cognitive Impairment in Multiple Sclerosis, A Forgotten Disability Remembered (dana.org), states that “Half to three-quarters of people with MS are unemployed within 10 years of diagnosis [due to] cognitive impairment [which] is the leading predictor of occupational disability, while physical disability, age, sex, and education contribute [to] less than 15 percent to the likelihood of being employed.”
Recently, my neurologist sent me to a neuropsychiatrist at the UBC MS Clinic to help me with anxiety and depression. Dr. Joseph Tham, who works at UBC hospital, has been assessing and treating my symptoms with some success. I realize it takes time; however, I have already seen some improvement with his thoughtful treatment plan.
To summarize, Improving Memory — Stretching — Staying active — Rest — Diet: These lifestyle changes have helped me overcome MS in many
ways. Although I can no longer manage my career, I am learning to adapt to the many symptoms associated with brain fog: I keep a pocket-sized personal log book to remind me of people’s names, important events, appointments and things I periodically forget. I find stretching benefits my exercise routine in two ways — stretching before helps improve flexibility and strength and post workout it helps reduce muscle soreness. Running, cycling and gardening are some exercises that work well for my lifestyle. Just thirty minutes doing any vigorous workout helps me with stress relief, self-esteem, immune regulation, and just a great overall improvement in mood while releasing those vital endorphins. I also find that rest is equally important to my recovery.
Check out the Overcoming Multiple Sclerosis website for some really cool ways to work on a recovery program that may benefit you: overcomingms.org.
Cont’d from Page One
although we have no recipes or related articles, our committee wholeheartedly wishes all of you a wonderful end to 2017. We look forward to learning about your experiences and getting to know you; we are all in this together.
— Brenda, Dorit, Anne, Linda, Julia, Ralph and Ron
Shared Voices | Winter 2017 3
VoicesThankfulby denise howse
This year was my 29th annual ‘girls trip’. Last year it looked like the trips were coming to an end. My friends could no longer help me into my minivan. We are all aging and although I can transfer, I no longer walk. I was sad, then rallied and purchased a newer minivan with a Bruno Seat (bruno.com/products/scooter-powerchair-lifts) that swings out and lowers, and we are good to go!
This year, we went to Sidney on Vancouver Island, which was close to everything we needed. The Sidney Pier Hotel had an accessible room with a king size bed and a roll in shower. It is on the water, has great service and the surrounding area is flat and manageable for the wheelchair pushers.
One morning we went to a small cafe for brunch. The doorway was narrow and there were chairs, coat rack and a bench blocking our way. Without blinking an eye, one friend held the door while another pushed the chair. The third friend moved all the paraphernalia that was blocking us and a couple of customers moved their chairs out of the way. There was one vacant table, squished against a wall. Two young guys jumped up and moved their chairs while my friend pushed our table over, so that another friend could maneuver me in to place. Then they pushed the table back and the two young men readjusted their chairs, we shared a laugh and settled in to eat.
A dashing older gentleman wandered over and said, “Excuse me ladies, but I want to congratulate you. I was a Vancouver fireman for 27 years and in the fire department, we stress teamwork. In all those years, I have never seen teamwork like I just witnessed. You, young lady, are very lucky to have friends that so obviously care for you. You also have an amazing attitude.” Then he acknowledged our two gentlemen assistants and gave them a wave. One of my friends did say they tolerated me but if I got
Without blinking an eye, one friend held the
door while another pushed the chair. The
third friend moved all the paraphernalia that
was blocking us and a couple of customers
moved their chairs out of the way. The third
friend moved all the paraphernalia that
was blocking us and a couple of customers
moved their chairs out of the way.
too demanding, they wouldn't think twice about kicking me to the curb. As if. The man squeezed my shoulder and told us to enjoy our day. I looked at my friends and told them, “He's right. I am lucky. I know I'm a lot of work and I really appreciate everything you do for me.” Sometimes you get so caught up with the everyday stuff you forget how important your friends and family are.
We had five days away. We ate too much and we shopped too much and we laughed just right. Another great getaway. Colour me thankful.
Illustration by Katie Lapi
Shared Voices | Winter 20174
Helping Ourselves
The Secret is in the Name — (MOVE)by anne stopps
You can tell the MOVE gym is different the moment you enter with its light, airy space. On the top floor of a big old heritage building in the heart of downtown Victoria, MOVE's vision is to “empower people with physical disabilities to achieve their potential” and they do. It is a warm, friendly and welcoming place for people of all ages who just happen to have a range of physical abilities: Parkinson’s, brain injuries, spinal cord injuries, Cerebral Palsy, arthritis or Multiple Sclerosis. The gym doesn't just focus on wheelchair users, but on others with varying degrees of difficulties – such as using a cane, walking poles, mobility scooter or power chair.
Interestingly, since the closing of the MS Society gym in Victoria, members with multiple sclerosis make up 60% of their membership.
MOVE is filled with a large selection of accessible equipment, including Three Nu-Steps, treadmill, standing frame and two MotoMed arms and legs, walking aids etc. The equipment was obtained from various sources (including some from the MS Society of Canada).
Laura, the gym coordinator, does an amazing job. When a potential new member comes, Laura does a complete assessment and sets up a program for them to follow. She tells me an average of 10 to 20 people exercise there every day.
MOVE is also very lucky to have about 35 trained, enthusiastic volunteers who are studying kinesiology, exercise and wellness, or taking athletic and exercise therapy programs from either the University of Victoria or Camosun College.
Volunteers are always on hand to help with transfers and assist members with all aspects of their exercise routines.
Gym is open 7 days a week, with 16 specialized exercise machines plus free weights, foam blocks, cushion rolls, bolsters and wedges.
Monthly membership is just $50 for unlimited visits, no contracts to sign, and financial assistance is available for those who qualify. MOVE subsidizes memberships etc. through donations, financial support from local companies and organizations and various fundraising efforts throughout the year. One-on-one assisted therapy is $50 per hour.
Check out the “Meet the Members” section to find profiles of some who share their views on belonging to the gym and how it has helped them.
MOVE Adapted Fitness & Rehabilitation Society (an independent registered non-profit society)Phone: 778.433.6559Location: #302-531 Yates St, Victoria.MOVE Website: moveadaptedfitness.ca
To find out more or book an assessment with Laura, call 778.433.6559 or email her at: [email protected]
Shared Voices | Winter 2017 5
Helping Ourselves
My Prognosis and diagnosing Doctor’s advice
I was diagnosed in June of 1978 when I was 32. This is how I remember what happened: The doctor said, “Well, you don’t have a brain tumor – you have MS.” I asked “what the H--- is MS?” He explained and of course I sort of understood some of what he was saying but was also relieved to find out exactly what was happening. He then said, “My advice to you would be not to tell anyone – even your wife – tell no one. I understand that it’s a lot to comprehend but I would like to see you in a week or two so we can discuss the implications and your prognosis.”
I drove home in sort of a daze. Once in the house, I, of course, told my wife and invited her to my next appointment with the neurologist. I went to the public library and read about MS. About a week later, we saw the doctor and he started by saying I had Chronic Progressive MS (now called Primary Progressive) and this type was the worst type a person could get...but he had a patient who lived for 10 years with it. My first thought was at most, I had 10 years or so to live. He explained the future debilitating aspects of the disease. So, various decisions were made such as my wife learning to
I’m Still Hereby ron jones
drive and going back to work and we did not tell the kids. This necessitated not telling any friends as most of their children were friends with our kids and we were afraid of the news getting back to them.
Over the next few years our little family thrived. The kids grew older and as my symptoms got worse our friends were told that I had a bad back and it was getting worse. My closest friend urged my wife to get a second opinion as I had told him nothing could be done.
Fast forward to 2017, 71 years old and I’m still here. My
"My advice to you would be not to tell anyone – even your
wife – tell no one."
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.
MS is reasonably stable and in remission. Yes I have other health challenges that are, hopefully, being resolved by my doctors. I use an electric wheelchair; I still drive and am involved in family life, MS Society stuff, hobbies, and much more.
I am grateful that I am still here and have happily outlived my prognosis. I got to see my daughters married, have 5 grandchildren and my wife and I celebrated our 50th wedding anniversary this year. I vacation (cruise) as much as possible. My life is full and I’m still enjoying it.
Ron at the Queen’s Award Celebration Tea
Shared Voices | Winter 20176
Out & About
Jan 26–Feb 3, 2018, coldsnapfestival.comThe Coldsnap festival will present 7 evening mainstage ticketed shows, 1 afternoon ticketed concert for kids, 2 evening shows featuring local and regional artists, and free daytime community outreach sessions. Beverages available for purchase. Events occur at different times and locations. Cost: free to $30
Prince George: Coldsnap Winter Music Festival
For All Music Lovers — Life After 5: Jazz Jam at 5 followed by Piano Lounge at 7:15First Thursday of each month. Rotary Centre for the Arts, 421 Cawston Ave.Jazz Jam open to both players and listeners of all ages. The Piano Lounge soloist, Tricia Dalgleish, has been performing professionally 20+ years. Bistro will be open Cost: by donation.
Family Sundays1 to 4 pm, 1315 Water Street, Kelowna, kelownaartgallery.com/family-sundaysHands-on activities, instructions and information, Family Sundays opens up the world of art for children and adults by providing opportunities to engage, discover, and create. Cost: $4
Kelowna
by linda macgowan
January 25–28, 2018, rosslandwintercarnival.comFamily events at multiple locations; including a parade, skiing, family variety show, live music, pancake breakfast, the Sonny Samuelson Bobsled Race that comes screaming down Spokane St. and much more. Watch for the world-renowned Slocan Ice Sculptures, take a dogsled ride by the Snow Volleyball or see the World Bigolfathon Championships. Food, beverages available for purchase. Dress warm and be prepared to have fun! Accessible events: washrooms, terrain, transportation, parking
Rossland: Rossland Winter Carnival
Shared Voices | Winter 2017 7
Wok around ChinatownDaily 10–2, Meet at the entrance of Dr. Sun Yat-Sen Classical Chinese Garden, 578 Carrall Street, visit awokaround.com or call 604.736.9508Shop from the freshest local and exotic fruits, vegetables, seafood, and meats; get to know this colourful district from a culinary, cultural perspective with the entertaining and knowledgeable Robert Sung. Begin at the Dr. Sun Yat-Sen Gardens, meander through the specialty shops and vendors, featuring products from barbequed crispy ducks, teas, herbal medicines to cookware. A viewing of historical landmarks, a visit to a symbolic merchant, and a dim sum lunch will be part of the tour.
Wok around Granville IslandDaily 10–12; 3–5, Meet at the intersection of 1505 West 2nd Ave. & Anderson St., visit awokaround.com or call 604.736.9508Explore the Granville Island Public Market on this 2-hour food walking tour. With a culinary guide, make your way through the vibrant stalls and sample delights such as maple-cured salmon, ciabatta bread, artisanal chocolates, Canadian cheeses, chai tea lattes and much more.
Life in ColourDaily September 16, 2017–February 18, 2018 Beaty Biodiversity Museum, UBC, 2212 Main Mall, beatymuseum.ubc.caColour your way through nature on a giant mural showcasing terrestrial and aquatic ecosystems from BC and around the world by artist Angela Gooliaff.
Vancouver
Vancouver Christmas Market Nov. 22–Dec. 23, daily 11–9, Jack Poole Plaza (site of the Olympic Cauldron)More than 75 artisan huts offer handcrafted gifts for everyone on your list. Sample Glühwein (mulled wine), a selection of German and Austrian beers, and a variety of sweet and savory delights. Entertainment for everyone: a Christmas Carousel, a market-wide scavenger hunt, and mascots “Holly and Jolly,” as well as Santa.
Chor Leoni Men's ChoirDecember 15 and 18, 4:30; 8, St. Andrew’s-Wesley United Church, 1022 Nelson St at Burrard, chorleoni.org/concerts-events Hear your favourite tunes, frosty winter songs, and familiar sing-along carols.
Shared Voices | Winter 20178
He walked toward me, walking tall with his back straight and a smile on his face. I was shocked because a year ago, my friend was stooped over, using a cane and barely mobile, his face etched with deep lines of pain.
Last year he was addicted to pain killers. He was not coping and knew he had to make a drastic change, so he got a prescription from his doctor for marijuana and started his research. His medication comes from the Island via mail order and he uses a vaporizer to smoke it. He has a blend for daytime use to relieve the pain he has from back surgery 25 years ago, plus two hip replacements and arthritis that is crippling him. He now takes a different strain for night time use and not only is he sleeping, he is off his pain meds except on severe days. His cognition has returned, and because his pain is manageable, he has resumed the daily activities he once enjoyed.
Most of the people I have spoken with are okay during the day. MS is something they live with, but night time gets them; that’s when restless or aching limbs, body pain and face pain make life unbearable. Most use marijuana oil or cookies, made with marijuana butter, regulating the quantity to manage their pain. Others take a capsule purchased from a
compassion club.I received an informative
email from a lady that says it all. “I have atypical trigeminal neuralgia due to nerve damage from an acute episode of MS. I also have complex migraines that cause pain on one side of my body. At first I was prescribed SATIVEX which is a spray made of Sativa. It was an expensive prescription and I was easily getting high (sensation of floating and dizziness). Someone suggested the Compassion Club in Vancouver. I went online to read about it, got a referral from my neurologist and went for an initial consultation. I received a membership card. In Canada, marijuana is tolerated when it is medicinal as long as you have your card with you. However, you should never cross the border with cannabis products even with your card.
I discovered that the cannabis tincture comes in different strains: Sativa gave me more energy but made me feel high, even if I started with a few drops (I am very sensitive to medication). Then I tried the Even Cross that is a mix of Sativa and Indica. This is the tincture I am still taking during the day. It does not make me high or hyperactive and it provides pain reduction. At night I use Indica; it is more calming, helps me get to and stay asleep. At one point, I made cookies, but they were hard on my bowels and made me uncomfortably high!
Medical Marijuana In Personby denise howse
I never experienced any of the symptoms mentioned in your article except for dry mouth which is very common with medication. I had dizziness only with Sativex and it is probably because I have vertigo as one of my MS symptoms.”
Thank you all for the information. I am sure our readers will find it helpful when they are making their personal choices. Remember to ask questions, do your research and consult a medical professional.
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.
Helping Ourselves
He walked toward me,
walking tall with his back
straight and a smile on his
face. I was shocked because
a year ago, my friend was
stooped over, using a cane
and barely mobile, his face
etched with deep lines of pain.
Shared Voices | Winter 2017 9
The Active MS support group is a small group whose members juggle jobs and/or raise children with the stress and unpredictability of MS, while keeping a positive attitude. I started the group almost 2 years ago as the only others in the West Kootenay are held during the day. We needed another option. We normally meet at 6 pm the second Thursday of the month in Trail. We are small enough, though, that if someone can’t make it we sometimes reschedule.
It’s a great group because each of us brings something different to the table that we are able to share with the others. No two of us have the same symptoms but are able to share the difficulties of being understood without going into a black hole of self-pity. To me this is really important. It’s nice to have people who don’t look at me funny if I talk about one of my invisible ‘weirdnesses’ but who also don’t let me dwell on them.
We talk about pros and cons of different DMTs and have tried to support each other in drug transitions, when what we are doing isn’t working. This is a big issue especially early after diagnosis. Each of us has our own risk tolerance, aggressiveness of disease, and life circumstances that influence our choices. I’m
the risk-taker of the group and have chosen to participate in a drug trial. One of us has drawn the short straw and has an aggressive form of MS, so after 2 drugs failing, went with the big gun, Lemtrada. Whatever the choice, we are there for each other.
We also discuss exercise, diet, supplements, and anything else our friends and family throw our way. I sometimes go away and research topics and attempt to find the grains of truth under the claims and bring them back to the group. Exercise is something I push at every opportunity (but team, please tell me if I nag). This is one thing that has tons of research to support it.
Trail: The Active MS Support Groupby heidi scott
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 [email protected]
Whatever exercise you will stick to is the best kind.
Another important aspect of our group is we recognize our families have this disease along with us. We are not regular about it, but we try to occasionally include our families. This is the first year we had a team in the MS walk. With the funds received, we plan to take our families out to dinner and show our appreciation of their support and give them a chance to share their perspectives.
New members are very welcome. We just ask that you bring a positive attitude.
Our group at the MS Walk
Shared Voices | Winter 201710
The Multiple Sclerosis Society of Canada is excited to be expanding the 1:1 MS Peer Support Program to caregivers; parents, partners, spouses, friends, and family caring for people living with MS. We recognize there are certain needs and subjects where talking to peers in similar situations can provide some much needed support, respite, advice and comfort as well as community. Speaking with a peer who is also caregiving can provide much-needed support, respite, advice, and community.
We are looking for caregiver volunteers who, after training, will be matched with other caregivers across Canada to create meaningful connections about caring for people with MS.
The program is still being developed; however, interested volunteers are invited to submit applications. The training will consist of online modules completed at a volunteer’s own pace. The volunteer and peer will determine the frequency of contact – typically about one phone call/email every 1-2 weeks.
Information
Our National Peer Support Program is expanding!
Potential caregiver volunteers can email [email protected] for more information and an application form.
MS Webinar Series: Telelearning to live your best life with multiple sclerosis
Penticton Wellness Session
Thursday, January 4, 2018 Penticton Community Centre, 325 Power Street
Education Session facilitated by Denise Mend, physiotherapist with Dale Charles Physiotherapy. Denise will present some new ways to improve balance and strategies to deal with pain.
Register by calling 1.800.268.7582, ext. 7299 or email [email protected].
In 2017, the MS Society of Canada developed a series of eight free nationwide webinars. All have been recorded and archived for viewing so we encourage you to check them out!
New topics will be presented in our 2018 webinar series so check back for additional information in the upcoming weeks.
mssociety.ca/webinars
Shared Voices | Winter 2017 11
Ingredients:
4 large boneless skinless chicken breasts, diced (about 2 lbs.) 1 tbsp vegetable oil 1/2 c diced onion 2 cloves garlic, minced 1/3 c soy sauce 1/4 c ketchup
2 tsp sesame oil 1/2 c honey 1/4 tsp red pepper flakes 2 tbsp cornstarch 3 tbsp water 2 green onions, chopped Sesame seeds, toasted
Directions:
Preheat pot using the saute setting. If using a conventional pressure cooker, saute onions on med-high setting. Add oil, onion, garlic, and chicken stirring occasionally until onion is softened, about 3 minutes.
Add soy sauce, ketchup, and red pepper flakes and stir to combine. Pressure cook on high for 3 minutes. When timer beeps, turn cooker off and do a quick pressure release. Careful — hot steam — use wooden spoon! Add sesame oil and honey and stir to combine. In a small bowl, dissolve cornstarch in water and add to the pot. Select Saute and simmer until sauce thickens. Stir in green onions.
Serve over rice sprinkled with sesame seeds.
Recipes
Pressure Cooker Honey Sesame Chicken
If you have ever feared using a pressure cooker, then you might be interested in the electric “Instant Pot.” This can greatly reduce your cooking time and is very safe to use. What impresses me is that this all-purpose cooker can pressure cook, slow cook, steam rice, sauté and simplify the process of preparing your meal. My son recently bought one to save time and money, allowing him to cook a complete meal in one pot, and then transfer it to meal-sized freezer bags he can bring to work for the week. I enjoyed watching him prepare it.
by ralph hurtig
Ralph trying his son’s recipe
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
For more information or to receive invitations to 2018 estate planning seminars, please contact Taryn Harrison at 1.800.268.7582 ext 7250 or [email protected].
Gifts in wills are an increasingly popular way to support the MS Society, as together we believe in a future free from multiple sclerosis.
• Leave a lasting legacy• Make it simple - we can help you get started• Reduce the taxes you pay on your estate
BE PART OF THE MS LEGACY
LEAVE A LEGACY OF A FUTURE FREE FROM MS.
From the Multiple Sclerosis Society of Canada