the voice of bc & yukon Shared Voices Spring 2018 It happened on a Friday night, down at 4th and Trafalgar. We arrived early, waing on a lit porch to place our orders. Enter Albert, our blind waiter. He took in five people at a me, each holding onto the shoulders of the person ahead. Then Albert came for me, pushing me into absolute darkness, bumping into a lot of things, and seemingly placing me in front of a table. You could not see the hand in front of your face. When my red wine arrived, I designated my leſt hand to be the wine glass hand. That wine glass never leſt my hand unl the meal was over and the drink finished. The starter was a bowl of…? Albert said he’d tell us at the end. I took my first sip of wine but missed my mouth, hing my lower lip just above my chin. Only when we heard a lot of laughing throughout the restaurant, we realized there were also other patrons there. Our second starter came, which I recognized as deep fried zucchini. My oldest grandson absolutely hates zucchini, but thought those were chicken strips and very tasty. My main course was roni with shredded lamb, which was exceponally delicious. To See and Not to See – Dark Table All too soon the meal was over and I was the first one out, with Albert not bumping into a thing. What an adventure; seeing and experiencing someone else’s (dis)ability first hand. How most of us were confused by not seeing what we were eang. It turns out we eat a lot with our eyes. The starter had been poached apple with caramel sauce, popcorn and cranberries. The majority of us had no clue. I had a lot of fun and what a great learning experience. From the website: The blind dining concept originated in Switzerland in the home of a blind man—Jorge Spielmann— who blindfolded his guests in an aempt to show them what eang is like for a blind person. Spielmann’s guests enjoyed the experience immensely, and claimed that when their sense of sight was removed, taste, smell, hearing and touch were amplified to the extent that the social act of eang took on a whole new meaning. These inial dinners evolved into a restaurant concept that included a dark dining room and blind servers, a tradion that Dark Table will connue. With an unemployment rate of 70%, the blind face obvious challenges in a society that is preoccupied with visual communicaon, but in a dark dining environment, the tables are turned—the non-sighted servers guide the sighted. In the words of William Shakespeare, “There is no darkness but ignorance.” darktable.ca/about.html by ron jones
Transcript
the voice of bc & yukon
Shared VoicesSpring 2018
It happened on a Friday night, down at 4th and Trafalgar. We arrived early, waiting on a lit porch to place our orders. Enter Albert, our blind waiter. He took in five people at a time, each holding onto the shoulders of the person ahead. Then Albert came for me, pushing me into absolute darkness, bumping into a lot of things, and seemingly placing me in front of a table. You could not see the hand in front of your face. When my red wine arrived, I designated my left hand to be the wine glass hand. That wine glass never left my hand until the meal was over and the drink finished.
The starter was a bowl of…? Albert said he’d tell us at the end. I took my first sip of wine but missed my mouth, hitting my lower lip just above my chin. Only when we heard a lot of laughing throughout the restaurant, we realized there were also other patrons there. Our second starter came, which I recognized as deep fried zucchini. My oldest grandson absolutely hates zucchini, but thought those were chicken strips and very tasty. My main course was rotini with shredded lamb, which was exceptionally delicious.
To See and Not to See – Dark Table
All too soon the meal was over and I was the first one out, with Albert not bumping into a thing. What an adventure; seeing and experiencing someone else’s (dis)ability first hand. How most of us were confused by not seeing what we were eating. It turns out we eat a lot with our eyes. The starter had been poached apple with caramel sauce, popcorn and cranberries. The majority of us had no clue.
I had a lot of fun and what a great learning experience.
From the website: The blind dining concept originated in Switzerland in the home of a blind man—Jorge Spielmann—who blindfolded his guests in an attempt to show them what eating is like for a blind person.
Spielmann’s guests enjoyed
the experience immensely, and claimed that when their sense of sight was removed, taste, smell, hearing and touch were amplified to the extent that the social act of eating took on a whole new meaning. These initial dinners evolved into a restaurant concept that included a dark dining room and blind servers, a tradition that Dark Table will continue.
With an unemployment rate of 70%, the blind face obvious challenges in a society that is preoccupied with visual communication, but in a dark dining environment, the tables are turned—the non-sighted servers guide the sighted.
In the words of William Shakespeare, “There is no darkness but ignorance.”darktable.ca/about.html
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
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
by brenda worthington
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.
Almost everyone remembers in detail their initial diagnosis of MS. Life has changed forever. In my case, I felt isolated from my friends and family. Although they cared and wanted to understand, it was overwhelming and impossible to describe. I compare it to being pregnant: until you go through it yourself, you can’t fully understand the experience. Grief was a constant companion as my body lost previous functions. Who among us doesn’t think of ‘what I used to do before’? It’s tempting to divide life into two camps: pre- and post-MS. For me, joining an MS massage program and meeting others in the same position showed I wasn’t alone. I was part of a community who got it.
Several recent studies show the benefits of such a community. In this issue, we take a look: On the cover, Ron profiles another group
highlighting its benefits, rather than its limitations. Further down, Linda explores her life with the ups and downs of requiring personal help; Ralph encourages us to talk about and share if we experience ‘invisible MS’. We see Sydney Spragg’s 14-year strong dragon boat team commitment and Michele Clarke’s article describing her self-help group. The MS Society provides many opportunities to feel included; for example, the virtual self-help group offer to northern BC and Yukon on page 10.
In keeping with ‘community’, Shared Voices has completed a year going province-wide. We would love to get your feedback and suggestions, and will be contacting all of the society’s members this spring. It will be most helpful to get your responses.
Often, when one acquires a disability, s/he loses privacy. And it’s major. Let me describe my experience for you…
For many years, I’ve been unable to get out of bed on my own, to transfer onto the shower bench or get off the toilet. Morning stretching – passive/active is absolutely essential for getting out of bed, transferring and moving actively throughout the day. These are shared activities now.
I don’t have anything that anybody hasn’t seen before, so it should not be a big deal, but it is. As a child, I was taught to close the bathroom door and to not walk in on other people while they are showering or dressing. This required unlearning much of the imbedded principals my mother spent a lot of time and energy drilling into me. I now cannot shower or use the washroom independently, so privacy is definitely compromised. Sometimes I just long to be alone!
Getting through life takes exercise, visualization and determination. Many people take for granted features they encounter daily such as a managing the washroom, or easily covering terrain. And then there’s transportation: parking, access to public services, bus transport nearby. For me, spontaneity is gone; it is not easy to throw on a jacket, pick up a bag and walk out the door. I understand that, but many others do not. I have one son who will call on Sunday morning to ask if I can meet their family for breakfast in 20 minutes. Not on your life! I’m still waiting for a home support worker who slept in, to arrive one hour after her scheduled time.
The CISL (Choice in Support of Independent Living) program gives back some of my privacy, because I can now choose who is with me in these very personal moments. And what is more important – I could struggle to dress myself; it would take 2 or 3 hours or with help, I can have it done in 30 minutes and spend my time and
Getting through life takes exercise,
visualization and determination. Many
people take for granted features they
encounter daily such as a managing the
washroom, or easily covering terrain.
energy exploring the world and enjoying life.Even if assistance with personal care is not a
need, privacy can be an issue. MS is frequently an invisible disability. “Why do you need to sit down on the bus? You don’t look like you have a disability!; “What’s wrong with you anyway?” “You can’t possibly be tired, you haven’t done anything all day!”
I complete a questionnaire on an annual basis to validate that I have a disability. I haven’t walked in more than 20 years but I am asked the same questions every year! “Can you stand up?” “No!” “Can you hold 10 pounds when you are standing on your left foot?” If I can’t stand on two feet, how can I stand on one and hold 10 pounds! And on it goes.
MS may provide a series of losses but you are still the same person, with the same needs and dreams. Follow those dreams no matter how tiny they may be! CSIL was a way for me to begin. It could be for you. CSIL: bit.ly/CSILprogram
Illustration by Katie LapiIllustration by Katie Lapi
In August last year my husband, daughter and I went to Paris and Prague. We spent 7 days in Paris and 10 in Prague.
My little Go Go Scooter has a small battery. I have travelled a lot in the last couple of years and usually, have left it at the plane entrance. The baggage handlers take it down below and bring it back up after landing. Simple. I have had no problems flying in North American and even down to Mexico, but it was not so easy to, within and back from Europe; there were a lot of concerns regarding the battery and most of the time I would have to leave the scooter at check-in and take a wheelchair to the airplane entrance. In Paris, it did not show up for over 15 minutes and there was a lot of confusion as to where it would be...but thankfully it eventually showed up. If you will be flying with a mobility device (scooter or power chair), know exactly what kind of battery you have as you might be asked, also, how much your device weighs and its general dimensions.
On to our first stop — Paris. Parisians are reserved but kind. I did not have one bad experience; in fact, it was a very memorable trip. The city seems to go out of its way to be accessible. The main Paris tourist website has a section for disabled travelers that tells how to get around, where to
stay and what to see (ca.france.fr/en/information/accessible-paris). Most attractions are free for disabled people and their caregivers, and almost all of them allowed us to go to the front of the line, or take a separate entrance where there are no lineups whatsoever. This is without a doubt the best part, as these were incredibly long everywhere (due to baggage checks), requiring at least an hour or more to get in. I did feel guilty going in before others, but when staff sees you getting close to the entrance, they come to usher you in right away. Many times I went in back doors, down private elevators and through secret hallways (in the Louvre). Needless to say, I sent a very grateful thank you email to the Paris tourist authority praising them on their excellent service.
Prague, on the other hand, was nothing like it. This may have been because we stayed in the suburbs and it was pretty difficult to get around in the streets. As well, Prague does not have as many touristy things to see and they are difficult to access. The four main areas of Prague — old town, new town,
Jewish quarters and palace were really beautiful and authentic but my scooter bumped along the many cobblestones which made traveling uncomfortable. In spite of these obstacles, the city truly is a beautiful place and the longer you stay, the more beautiful it becomes.
There is much more I could write, so if you are contemplating going to either destination please do not hesitate to email me and I will help you if I can. [email protected]
Recently, I drove my friend to a walk-in clinic. In fear of catching a flu bug from all the coughing in the waiting room, I stepped outside for some fresh air and was surprised by a friendly Samoyed, a fluffy white dog about the size of a Siberian husky, with bright blue eyes. Brad, the dog’s owner, was also outside, waiting for his wife. During our conversation, I mentioned I was diagnosed with MS and on long-term disability. His immediate response, like many others, was ‘but you look so good for someone who has MS.’
Unless I can be seen walking with an unusual gait, using a cane or sitting in a scooter, others do not see MS. I have invisible symptoms — bladder and bowel issues, blurred vision, cognitive problems, dizziness, fatigue, heat sensitivity, pain, difficulty in problem solving, and weakness. Just ask any of my close friends or family; they see me as a person totally overwhelmed with fatigue and know the MS is doing it. A stranger may see me as a person who doesn’t have a disease but might look angry or distant toward them; when dealing with brain fog, I may appear rude to others because I
Revealing the Mask of “Invisible MS”by ralph hurtig
don’t immediately answer their questions. I just sometimes can’t process it quickly. This undermines my self-confidence and can affect my relationships. People might assume if they can’t see it, there is nothing wrong with me. Perhaps they would understand more clearly if I produced a wallet sized MRI displaying the brain lesions confirming my condition?
After a while, I realized it takes time to know what you’re dealing with. Start by getting support from people who know about your condition and how it affects you, such as your neurologist or family doctor, to provide you with a treatment plan, including medications and alternative lifestyle changes. Be assertive and get the tests that confirm whether, for instance, the dizziness is an inner ear problem like Meniere's disease or an MS lesion in the brain; symptoms are difficult to describe and diagnose and may require a careful process of
During our conversation, I
mentioned I was diagnosed
with MS and on long-term
disability. His immediate
response, like many others,
was ‘but you look so good for
someone who has MS.’
elimination by specialists.It is easy to minimize your
symptoms, so share your concerns with your health team. Family members may be willing to work with you to modify responsibilities and activities. Identify yourself to the public as a person with MS. You may hear incredible stories from others familiar with it. After sharing my story with Brad, he immediately wanted to connect me with a friend whose wife has MS. You can make the difference in someone else’s life. Discard the mask. Break the silence and be the voice of ‘Invisible MS’.
Illustration by Katie Lapi
Shared Voices | Spring 20186
Out & About
June 1–3, 1–4 pm: 1084 Pacific Rim Hwy, Tofino Botanical Gardens tofinofoodandwinefestival.comThis weekend of food and wine is a signature event, showcasing local culinary talent and BC wines, craft ciders and beers, in these beautiful gardens. Accessible; Everyone will find something of interest.
1875 Columbia Avenue, Parks and Recreation, 250.364.0888 [email protected] or trail.ca $2 drop-in admission between 4–5 pm Saturdays in March. Activities for the entire family.
Tofino: Food and Wine Festival
Trail: Toonie Time at the Trail Aquatic & Leisure Centre
by linda macgowan
May 4–6, Friday: 1–6 pm, Saturday: 9:30 am–5:30 pm, Sunday: 10 am–4 pm, Strathcona Gardens Arena, bit.ly/campbellriverexpoFind what you need to create your dream home and ideal lifestyle. Accessible; FREE Admission; food and drinks are available.
March through May: Wednesdays 4–6:30 pm & Saturdays 10 am–2 pm 2300 Bowen Rd, Beban Park, islandrootsmarket.comThe Island Roots Market Co-operative: get local food and the accompanying farmers’ produce. Accessible; FREE admission; everyone is welcome; food and beverages are available.
April 27–29, Friday: 1–6 pm, Saturday: 9:30–5:30, Sunday: 10 am–4 pm 2687 James St, Duncan, bit.ly/cowexpoFind what you need to create your dream home and ideal lifestyle now.Accessible; FREE admission; food and beverages are available.
March 3–May 21 Five centuries of magnificent art from the McMaster Museum of Art’s Levy Collection and Bequest from Herman Herzog Levy.
February 3–May 6 Takashi Murakami: The Octopus Eats Its Own Leg A major retrospective exhibition of the monumental paintings of international art icon Takashi Murakami.
The Science Of Ripley's Believe It or Not! January 25–April 22, TELUS World of Science, 1455 Quebec StreetPrepare for an incredible journey through the curious collections of Mr. Ripley, the explorer extraordinaire who travelled the world collecting artifacts and stories from the remarkable people and places he encountered.
Off Balance Dragon Boat TeamSundays, False Creek Community Centre, top of docks 10 am, docking 10:30 amPaddles and life vests provided, able-bodied helper encouraged if assistance required, especially welcome to load and unload the boat. Bring along your spirit!
Vancouver
Shared Voices | Spring 20188
Shared Voices has now gone out BC & Yukon wide for a year. We would love to know what you think. Do you have additional ideas? Look for a Survey Monkey poll from the MS Society shortly; give us your input and make suggestions.
Last fall, Tom & Sarah Lazar went on the zip line at Grouse Mountain as part of a series that profiled caregiving. Narrated by Dr. Yvette Lu, this short video shows their daily life and fun day, ending with tips and suggestions by Dr. Lu. storiesforcaregivers.com/project/3
Repair Nerve DamageSkin cells may help to
repair nerve damage in MS: A personalized treatment for multiple sclerosis may be one step closer, thanks to a new study that reveals how a person's own skin cells could be used to repair the nerve damage that the disease causes. bit.ly/skincellrepair
How are we doing? Stories for Caregivers
by brenda worthington
by brenda worthington
by brenda worthington
Did You Know?
MS in the News
Mediterranean Diet Pilot Study is testing
whether the Mediterranean Diet can help MS bit.ly/msmeddietCBD
What are the actual benefits of CBD? Supporters of CBD in marijuana claim it can improve — or even eliminate — health conditions ranging from anxiety to cancer, with minor side effects. bit.ly/benefitscbd
Stem CellsCustom Stem Cell
treatment could offer MS relief: Scientists have shown in mice that skin cells re-programmed into brain stem cells, transplanted into the central nervous system, help reduce inflammation and may be able to help repair damage caused by multiple sclerosis. bit.ly/customstemcell
Claire: The YPG is special to me because it’s my only place where everyone understands how it feels. There is not pity. It’s empathy.
My favourite aspect is getting to express oneself of course.
It’s a chance to air one’s experiences of the past month and get useful tips from other members of the group. I’ve really appreciated others’ kindness in their particular experiences plus sharing knowledge and information is always so useful!
Carrie: “You have MS” — an extremely short sentence that changes everything about your life — forever.
So many unknowns, questions and concerns. The emotional roller-coaster rides. Hours of medical appointments, research, decisions about therapies.
Family members and friends who want to support you, but don’t always know how. The list seems never-ending.
Then, an invitation — “We’re starting a new monthly support group for newly diagnosed people who are in a ‘younger’ age category — are you interested?”
I am so glad I accepted the invitation to join this group.
Knowing I can say anything about my MS — and REALLY be heard and understood.
Sharing stories, hopes and
Younger Persons With MS/NMO Support GroupStories for Caregivers reflections by members,
collaborated by michele clarke
frustrations, laughter and tears, questions and answers, experiences and advice.
The YPG has helped me balance, reframe and reset when I needed it the most.
To our YPG — Thank you for your amazing support and friendship over the years. You are an incredibly special group of people who are making my
MS journey so much easier.Michele: The Younger
Persons Group (YPG) has helped me manage my emotions and frustrations and find my new path. They have given me “Hope”.
After a long hospital stay that I had 9 years ago, I contacted the MS Society to get support during my recovery. They told
From left to right: Seated - Andrea, Stephanie; Standing - Michele, Carrie, Claire, Lelainia, Alyssa (Facilitator)
For information on self-help groups in your area, contact a community services
Northern BC and Yukon: Virtual Self-Help Group Program
We are looking for new and helpful ways to connect with people affected by MS. We are currently considering creating a virtual self-help group program available for people in northern BC and the Yukon Territory.
Vast distances, weather and mobility issues often create barriers to attending a face-to-face group. With a virtual self-help group, people can call or log-in using a telephone, smart-phone, tablet, or computer. It could be a great opportunity to connect with a facilitator and other people who are also affected by MS.
Depending on interest, we could incorporate educational topics into the sessions. Our hopes are to help people cultivate meaningful connections, decrease isolation and to provide an opportunity to learn new information. If this is of interest to you, please complete this short survey: bit.ly/virtualselfhelp or call 1.800.268.7582 ext. 7259 and ask to speak with Lonnie. In the Yukon, call 1.866.991.0577 ext. 7259. Thank you!
me about a support group that had been created for younger people with MS. Joining this group was a life changing moment for me. The YPG listened to my story and gave me support as I managed my recovery from this relapse. The YPG meets one Saturday each month and is an opportunity to share ideas, resources, and offer encouragement to each other when faced with challenges. And, they are my cheer squad for when I have had a moment of success!
It was that relapse that took me out of the workforce. I felt lost, and alone, when I couldn’t work anymore. You see, my coworkers were my friends. Sometimes friends fall away when you are unable to do what you used to do with them. That is difficult, and for some, it can lead
Younger Persons With MS/NMO Support Group Cont’dto isolation. Being a member of this support group, and knowing that they are now good friends, I always have a friendly shoulder to lean on. We don’t have to wait until the monthly meeting to reach out to one another. Another YPG member is just an email, text or phone call away. They aren’t just my support group, they are my “support network”!
We need to build strong support networks. I am thankful that the MS Society has helped me by telling me about a support group that I was able to join. Through this group I have made new friends and I am grateful for that. I am not alone. You are not alone. We are all in this together!
6 medium– firm, crisp baking apples like Granny Smith or Braeburn½ cup brown sugar1 tsp cinnamon⅛ tsp (generous pinch) grated nutmeg⅓ cup dried cranberries or raisins3 Tbsp unsalted butter1 cup hot water
Ingredients:
1 cup (200 gr) light brown sugar, packed4 Tbsp unsalted butter*1 tsp sea salt, or to taste
½ cup half and half (or use equal parts heavy cream and milk)1 Tbsp real vanilla extract
Directions:
Combine all ingredients in a small/medium saucepan and simmer over low heat, whisking constantly or until thickened and no longer watery (6-9 min). Keep in mind it thickens more as it cools. Refrigerate in an airtight container up to 2 weeks. You can re-warm it slightly to make it more drizzle-able. (If using salted butter, reduce salt to ½ tsp or add it to taste.) Best served over baked apples sprinkled with popcorn, on a Saturday night in front of a great movie!
Recipes
Baked Apples with Caramel Sauce, dried Cranberries and Popcorn
Easy Caramel Sauce
by natasha of natashaskitchen.com
Photo Courtesy of Dorit Hoffmann
Recipe inspired by Ron's Dark Table experience.
Directions:
1. Preheat oven to 375˚F. In a small bowl, combine ½ cup brown sugar, 1 tsp cinnamon and ⅛ tsp nutmeg and stir with a fork. Stir in dried cranberries and set aside.
2. Wash apples, place in casserole dish just big enough to hold apples without touching.
3. Top each apple with ½ Tbsp butter and sprinkle with cinnamon mixture.
4. Pour 1 cup hot water into the casserole dish and bake at 375˚F for 45 minutes to 1 hour until apples are soft (but not mushy).
