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Alberta’s health and lifestyle magazine for people with spinal cord injuries and other physical disabilities

Summer 2015

spinal

columns “

DO YOUR BEST TO BE PREPARED AND ACCEPT THAT YOU’LL MAKE MISTAKES ALONG THE WAY. ”

PARENTING

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Contents SUMMER 2015 VOLUME 30 NUMBER 1

EDITOR – BETTY MACISSAC ASSITANT EDITOR – ZACHARY WEEKS LAYOUT/DESIGN – STEPHENIE MOTYKA

Spinal Columns is published three times a year by Spinal Cord Injury Alberta. Advertising rates available upon request. Ideas, submissions, requests, suggestions and letters are always welcome. Address them to:

COVER STORY 14 Parenting With a Disability

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EDITORIAL

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IN THE NEWS

RECOGNITION 8 Staff Profiles

The Editor, Spinal Columns Spinal Cord Injury Alberta #305, 11010 - 101 Street Edmonton, Alberta T5H 4B9 (780) 424-6312 Material printed in Spinal Columns may not be reproduced without written permission from Spinal Cord Injur y Alber ta . We neither endorse nor guarantee any of the products or ser vices adver tised within Spinal Columns . Readers are strongly urged to thoroughly investigate products/companies before purchase. Spinal Columns is available in alternate formats by contacting our office as listed above.

DEPARTMENTS

“Do your best to be prepared and accept that you’ll make mistakes along the way.“

FEATURE STORIES

Publications Mail Agreement #40011327

16 A New Door Opens

Return undeliverable Canadian addresses to: Spinal Cord Injury Alberta #305, 11010 - 101 Street Edmonton, AB T5H 4B9 E-Mail: edmonton@sci-ab.ca

17 Survival on Parliament Hill 20 Social Media Brings Hope and Courage to New SCI Survivor

ISSN 1195-5767

www.sci-ab.ca “Social Media has probably played the biggest role in my recovery.”

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IN MEMORIAM In Pursuit of Justice

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ACTIVE LIVING Flying with the Edmonton Soaring Club

22 24 26

ACCESSIBILITY The Need for Independence

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FEEL GOOD Ten Tips on Fashion and Feeling Good for the Seated Individual

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INNOVATIONS Adaptive Products

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REGIONAL NEWS What’s New in Alberta

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OPINION From my Perspective

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IN OUR LIBRARY Magic Moments Cam Tait: Disabled? Hell No! I’m a Sit-Down Comic!

NUTRITION 10 Nutrition Tips - Living with SCI TRAVEL Introducing Coyote Lake Lodge

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editorial

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a m pleased to h ighlight a few initiatives that were completed or changed in the 2014/15 fiscal year. After nearly four years of planning a nd prepa ration we a re ver y proud to have launched a new name – Spinal Cord Injury Alberta! Why did it take so long? It was a comprehensive process including: stakeholder consultation with individuals and family members impacted by spinal cord injury (SCI) and other physical disabilities; consultation with referral sources such as health professionals in hospitals and home care, equipment supply companies, sponsors, donors, and volunteers; and collaboration with staff and board members from the federation of provincial organizations known as the Canadian Paraplegic Association. Strong support was received for renaming to Spinal Cord Injury because it was more inclusive and representative of our clientele who come to us for information, support in adjusting to the consequences of injury and support in adapting to an environment with many barriers to community integration and participation. The new name also makes a web search easier. The next step was to change our bylaws and complete the additional legal requirements for name change at the provincial and federal level. With those steps accomplished we needed to change our print literature, social media and website so that a public launch of our new name could take place on November 1, 2014. Officially, we are Spinal Cord Injury Association Alberta, but we operate publicly with the shorter name of Spinal Cord Injury Alberta, consistent with our federation members and our national coordinating body which is Spinal Cord Injury Canada. The provincial name change transitions followed suit with SCI Ontario, SCI BC, etc. The changes have not been completed in all provinces yet, but the eventual change is anticipated. Under our new name we continue to provide the same services and are proud to report that our newest program, the SCI Fitness and Wellness Centre at our Calgary office is growing as more and more individuals recognize the value of an individualized and supported fitness program which can help them achieve their goals for functional improvements, general health benefits and new social connections. We now have 2 full time kinesiologists/certified fitness instructors who support clients in their exercise endeavors. We have added an FES bike to our specialized equipment options and anticipate being able to introduce nutrition counselling as service available through the Fitness and Wellness Centre in Calgary in 2015. Over the past year our staff and some peer mentors have worked with a consultant to redesign our peer program model which will help us prioritize our program activities to those which have greatest benefit or impact for participants. This new model helps to inform our grant applications and also helped to inform a research project which was designed to test emerging best practices and grow the evidence behind peer programs across our federation of provincial Spinal Cord Injury Associations. This initiative is designed by Professor Luc Nureau and his research associates at CIRRUS, University of Laval. Roughly translated, CIRRUS is the Center for Research into Rehabilitation and Social Integration for persons with disabilities. We are proud that SCI Alberta will be the lead organization in driving the implementation of the project across the country. Finally, I want to congratulate our staff, volunteers and board members for their work which has contributed to another impactful year at Spinal Cord Injury Alberta, formerly known as Canadian Paraplegic Association (Alberta).

Teren Clarke, Chief Executive Officer 4

HEAD OFFICE #305, 11010 - 101 Street Edmonton, Alberta T5H 4B9 Telephone: (780) 424-6312 Fax: (780) 424-6313 E-mail: edmonton@sci-ab.ca Teren Clarke, CEO CALGARY OFFICE 5211 4 Street NE Calgary, AB T2K 6J5 Telephone: (403) 228-3001 Fax: (403) 229-4271 E-mail: calgary@sci-ab.ca RED DEER OFFICE Telephone: (403) 341-5060 Fax: (403) 343-1630 E-mail: reddeer@sci-ab.ca GRANDE PRAIRIE OFFICE Telephone: (780) 532-3305 Fax: (780) 539-3567 E-mail: grandeprairie@sci-ab.ca LETHBRIDGE OFFICE Telephone: (403) 327-7577 Fax: (403) 320-0269 E-mail: lethbridge@sci-ab.ca LlOYDMINSTER OFFICE E-mail: lloydminster@sci-ab.ca MEDICINE HAT OFFICE Telephone: (403) 504-4001 Fax: (403) 504-5172 E-mail: medicinehat@sci-ab.ca ST. PAUL OFFICE Box 653 St. Paul, AB T0A 3A0 Telephone: (780) 645-5116 Fax: (780) 645-5141 E-mail: stpaul@sci-ab.ca FORT McMURRAY Tel: (780) 743-0307 Fax: (780) 743-4563 E-mail: fortmcmurray@sci-ab.ca Spinal Cord Injury Alberta Toll Free: 1-888-654-5444 www.sci-ab.ca Find us on Facebook and become a fan! Watch videos on our Youtube channel www.youtube.com/cpaalberta SCI ALBERTA BOARD OF DIRECTORS Bryce Clarke - Edmonton Margaret Conquest - Edmonton Shamel Elsayed - Calgary Kent Hehr - Calgary Steven Jeffrey - Fort McMurray Ron Jewitt - Edmonton Paul Nemetchek - Edmonton Cecil Pizzey - Grande Prairie Ray Royer - Edmonton Souheil Saab - Edmonton Christopher Schamber - Lethbridge Linda Seitz - Medicine Hat Ned Shillington (Chair) - Calgary Eleanor Sugarman - Red Deer Dale Williams - Grande Prairie Mission Statement To empower persons with spinal cord injuries and other physical disabilities to achieve independence and full community participation.


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inthenews PREGNANCY AND SPINAL CORD INJURY - SCI BC LAUNCHES SCI PREGNANCY GUIDE

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b r o c hu r e a nd information booklet is now available at http:// sexualhealth.sci-bc.ca/ for women with SCI who are considering pregnancy outlining key things to consider prior, during and after pregnancy and where to go to get additional information, help a nd services.

CITY OF EDMONTON MAYOR’S AWARDS

H

eld on May 20, 2015, the City of Edmonton M a y o r ’s Aw a r d s recognized five outstanding nominees, including good friend, Louise Miller, as recipient of the Ewen Nelson Award for Self Advocacy.

FERTILITY TREATMENTS FOR SPINAL CORD INJURED MEN AND WOMEN Artificial insemination Therapeutic donor insemination Vibrostimulation and Electroejaculation Sexual dysfunction diagnosis and treatment Assisted reproduction technologies including In Vitro Fertilization Treatment costs may be covered by WCB or insurance settlements in some cases Cambrian Wellness Centre Suite 400, 2000 Veteran’s Place NW Calgary, Alberta T3B 4N2 (403) 284-5444

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meetthestaff

Staff Profiles

With a degree in Kinesiology and Health Sciences as well as a degree in Athletic and Exercise Therapy, Laura Nipp has been working as a Specialized Fitness Coordinator at Spinal Cord Injury Alberta in Calgary since May 2014. Laura is also a Certified Athletic Therapist, Kinesiologist and Yoga Instructor. Born and raised in beautiful Salmon Arm, British Columbia, Laura has a passion for promoting health and wellness through Adapted Physical Activity. As a Specialized Fitness Coordinator, Laura develops and implements long term rehabilitation programs for people with spinal cord injuries, brain injuries and other physical disabilities.

A 2013 graduate of Mount Royal University with a Bachelor’s of Arts degree in Psychology, Elysha Velji has been working as an Aboriginal Services Coordinator with Spinal Cord Injury Alberta since May 2014. Elysha Velji was born and raised in Calgary and her love of people is what got her interested in this line of work. She is thrilled that she has an opportunity to work with clients first hand and experience their way of life. When she is not working, Elysha is volunteering with Girl Guides of Canada, and hanging out with family and friends. She enjoys dancing and socializing, but also likes to wind down with a good book.

Born in Lethbridge and raised in Airdrie, Alberta Trevor Rutschmann completed a Bachelor of Science in Kinesiology from the University of Lethbridge in 2014. After graduation Trevor went on to receive his Exercise Physiologist certification from the Canadian Society for Exercise Physiology. While earning his degree Trevor had the opportunity to gain experience working as a Kinesiologist for Max Bell Physiotherapy and Lethbridge Physiotherapy. Trevor has experience working with athletes as he often helped out with the U of L Men’s Dryland Hockey training, and worked as a personal trainer at the U of L gym, before joining SCI Alberta as a Specialized Fitness Coordinator. Trevor’s hobbies include a love for sports, animals and travelling.

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inmemoriam

In Pursuit of Justice

PIPELLA, Edward Stanley (Ed) Q.C. November 14, 1931 - October 30, 2014

O

ne of 10 children, and the son of a dirt farmer whose mother could neither read nor write, Ed Pipella, wanted an opportunity for a better life. His mother sold her 10 best milking cows to send him from small town, Lamont, Alberta, to Calgary to pursue an education. Pipella knew this was a great sacrifice and privilege, and was determined that he would not let his mother, or the rest of his family down. And so it was with hard work and determination that Pipella embarked on a career in the legal field. He fell in love with it. He had a passion for “the game” and the pursuit of justice. Shortly after articling, he started as a sole practitioner working as a generalist in family and corporate law, real estate, and then criminal law. Pipella’s TRUE love, however, was helping those in need. When Pipella’s close friend was killed in a traffic accident in 1968, he was asked to represent the family. He later represented another friend who had sustained an incomplete spinal cord injury. Those experiences, along with the severe pain he suffered after

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being diagnosed at a young age with Ankylosing Spondylitis (a type of inflammatory arthritis), helped him realize how much personal satisfaction and reward he derived from helping those who were catastrophically injured. Ed Pipella, together with Pipella Law, have had a long history with

Spinal Cord Injury Alberta, since the early 1980’s, working alongside the organization and representing many of its clients. Over the years, Pipella Law has provided both financial and volunteer support by entering

various teams at the Calgary Ability Challenge Wheelchair Relays, and by providing financial support for the Odyssey Career Mentorship Program over a period of three years. This dedication and involvement continues today with Pipella Law’s continued support of many SCI Alberta peer events. Pipella was close to many of his clients who became like ‘family’ over the duration of their cases at Pipella Law. Some of the cases that stood out to him over the years, involved Patricia Gutek, Marilyn Erho and Garry Miller. In 1987, at the age of 10, Patti Gutek, was injured in a skiing accident which left her a C4-5 quadriplegic. Pipella was pleased t hat t he compensat ion Gutek received from the litigation enhanced her ability to lead a fulfilling life. She has had the resources to pay for the caregivers and equipment she requires to achieve her goals and dreams. With the help of caregivers, Patti has had the opportunity to travel around the world and complete Commerce and Law degrees over a period of 8 years, with portions of that study being completed in


Montreal, Miami and the United Kingdom. In 2003, Patti received her law degree and ‘returned’ to Pipella Law as a lawyer, where she continues to work on a casual basis, and raise her children in Calgary. Marilyn Erho was involved in a motor vehicle collision in 1995, leaving her a C6-7 quadriplegic. The person who hit her suffered a seizure and drove into the vehicle in which she and her husband were driving. After the accident, Erho initially hired a lawyer who was not experienced with accident-injury claims. Edward S. Pipella, Q.C., was recommended and her case was advanced and a settlement was reached. Erho now works as a Peer Program Coordinator with SCI Alberta. In the 90’s, Pipella also represented Garry Miller who became a paraplegic after an accident while operating his motorcycle. Miller sued his insurance agent for failing to give him maximum insurance coverage which was fought all the way to the Supreme Court of Canada. Pipella was proud that he had set a precedent that enabled people to sue their insurance agent for negligence. Pipella devoted his working life to his clients at Pipella Law where he specialized in nothing but personal injury litigation. It gave him satisfaction to settle cases and enable his clients to live more independent lives. He loved the law and encouraged young people to pursue a career in the area. Pipella stressed the importance of having empathy towards

his clients. He also passed this onto his daughters, two of whom followed in his footsteps and have pursued a career in personal injury litigation and had the privilege of working with him. Today, Ed Pipella’s daughters carr y on his legacy at the firm he founded, Pipella Law, now led by Tara D. Pipella - a dream of his that came to fruition and which made him extremely proud. Edward S. Pipella, Q.C., will be remembered and missed by many, including individuals and community groups, as well as countless others who were touched by his dedication and generosity.

IN MEMORIAMS Bill Diablo Diane Earl Michael Glover Perry Hegerfeldt Lisa Oakes David Reid Ron McKay Anita Rudelich

Fairview Edmonton Edmonton Stony Plain Grande Prairie Edmonton Grande Prairie Edmonton

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activeliving

HITTING NEW HEIGHTS

with the Edmonton Soaring Club

“The feeling of freedom and being able to leave your wheelchair behind on the ground is indescribable!”

by Kary Wright

All out! All out!” I hear from the back seat, a signal to the tow pilot to advance to full throttle. It is a sound that always puts a grin on my face! I can hear the tow plane rev up, the rope tightens and our glider starts to move. The acceleration increases until we are pushed back into our seats. What a ride! Soon we are airborne before the tow plane is, and skimming a long just a bove t he ground—gaining speed! We are towed to altitude and then we release. “Glider is released at 3000,” I hear as the tow rope is disconnected from us with a pop. The tow plane banks steeply left, and we bank hard right to separate the two aircraft. “Glider is all yours,” I hear from

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the back. “I have control!” I say. Talk about a sense of freedom! Here I am, taking full control of an aircraft! My electric wheelchair is on

the ground, and at this moment, I don’t want to ever to go back down! For the next hour and a half I search the skies for lift. The instructor lets me do all the flying after the tow. Sailplanes do not just get towed up

and then coast back down to the ground. When you see a puffy cloud in the air, that means that there is a thermal (a current of rising warm air) under it. Glider pilots take advantage of this just as birds do, and circle in the rising air, thereby gaining altitude. It is like sailing in the sky; you are using nature to stay aloft. It is so quiet and peaceful and the view is incredible! Club members have been known to stay up for seven or eight hours and cover hundreds of kilometers of ground before returning in time for a barbecue in the evening. It is common to circle inside a thermal with more than one glider and it is amazing to see another aircraft at such proximity. “There is Geoff over there!” says Pavan from the backseat on one flight. Soon we are circling in a thermal with


activeliving

Geoff, looking at each other as we go around with wingtips pointed at each other. We are careful to keep each other in sight and to keep a safe margin of separation between us. “I’m getting some great shots here!” says Pavan, photographing Geoff and the flight field. Pavan and Geoff are both instructors from the Lethbridge Soaring Club visiting Edmonton during the spring soaring week. This is the type of sharing that goes on between clubs. It is a tight knit community where people help each other out - a great bunch of people! I think most of the glider instructors in Edmonton, Calgary, and Lethbridge are now familiar with flying with wheelchair users. The folks in the club are very knowledgeable, helpful, and caring. They make it very comfortable to come out and try the sport of flying. I always fly with an instructor as my arm strength is not very good and I will probably never get to the point of flying solo. It would not be safe for me to fly alone as I am depending on adaptations to be able to manipulate the controls, and, of course, safety is paramount. There are lots of qualified pilots in the group who are willing to come along and help and it is a sport that is even more fun when shared. • • • • • •

The Edmonton Soaring Club is set up very well for people who use wheelchairs. They currently have a lift on an all-terrain vehicle that can pick us up out of our wheelchairs and set us into a glider. They have also recently taken delivery of a new glider that has hand controls specifically designed for persons with disabilities. This will allow full control of the glider to anybody with minimal arm movement. I am quadriplegic and even though I have very little strength in my arms, we have designed a cuff that will allow me to grab the joystick. Once my hand is on the stick, it takes very little physical strength to actually fly the glider. There are plans to make the clubhouse and its deck wheelchair accessible this year. That will make it easier to mingle with the others after flying is done. I would encourage you to come on out and give it a try this year. You won’t regret it and it costs less than you think. It’s great if you are able to take the controls and fly, but if you would prefer to just go along for the ride and take pictures, that is incredible as well. The feeling of freedom and being able to leave your wheelchair behind on the ground is indescribable!

The Edmonton Soaring Club is located just north of Chipman, east of Edmonton. Flying season starts in the early spring, whenever conditions allow. The club flies on Saturdays and Sundays but there are designated flying weeks during the year when the club flies all week long. For more information, check out their website at http://www.edmontonsoaringclub.com Here are links to some flying videos at the club that give an idea of how the lift works and what gliding is like https://www.youtube. com/watch?v=lfhwcRAE8wY and https://www.youtube.com/watch?v=qmvcRicwcvI For information about Alberta gliding clubs, go to http://www.soaring.ab.ca

Personal Injury Lawyers 403.255.2636 www.vogel-llp.ca

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parenting

PARENTING WITH A DISABILITY

by Heather Lissel

I

f you’re a parent, you can likely relate to some version of the following scenario. You: Pumpkin, it’s time to go home now! Pumpkin (scrambling to the top of indoor jungle gym): NO! You: Mommy (Daddy) said 5 more minutes, now it’s time to go. Pumpkin (ascending precarious rope ladder): NO! I don’t wanna go home! You: If you come down now, we’ll go for ice cream. Pumpkin: unresponsive You: I’m counting to five…. One … two… three…four…………five. OK, no ice cream. [waiting] You’ll lose your TV time if you don’t come down now. No, don’t go into that tunnel. [Tense pause] OK, I know you can hear me in there. You need to come out now or I’m coming in to get you. It’s at this point that you ignore the 50 lb weight limit on the inflatable

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slide, shimmy your way up through a squadron of squirming, screaming kids, locate and extricate your own squirming and screaming kid, and leave

amidst surly stares… That’s if you are an able-bodied parent. If you’re in a wheelchair it’s a different scenario. You may have a willing partner or friend who can scramble after Pumpkin. If not, your only choice may be to wait, laugh at your circumstances and vow never to make that mistake again. In many respects, parenting from a wheelchair is not that different from parenting in general. We all find out pretty quickly that kids don’t come with manuals and that our best parenting skills are honed through trial and error. Brittney Neunzig, a young woman with paraplegia who is currently raising two toddlers with her husband in Spruce Grove, had an experience much like the one described above. She was visiting a friend, also in a wheelchair, and when it was time to leave, her daughter climbed the stairs and sat just out of reach, very satisfied


parenting that she’d outwitted her mom. “It’s at times like that,” Brittney says laughing, “that bribery is your best option.” Souheil Saab has had similar experiences. Souheil is paraplegic and is raising two twin boys with his wife Josie in Edmonton. Speaking with Brittney and Souheil reveals that parenting from a chair requires more planning and preparation than able-bodied parenting. That’s largely because there’s less information available on what equipment is needed and where to find it, and fewer resources that address the unique concerns that parents with disabilities may have regarding safety and social development. With respect to finding furniture and equipment, Souheil spent a lot of time at stores, bringing things home, and testing them out as best as possible before the kids were born. He found he needed to be very specific about what his needs would be as store staff usually know little about the abilities of people with SCI or other physical disabilities. In the end, he and his wife were able to purchase all of their equipment – lightweight stroller, baby carriers, crib, and change table – at mainstream stores. Some of it they modified to make it work for them. “A lot of it was trial and error,” he says. Brittney had a family friend build her a crib that opened from the side and found that bathing her kids in the kitchen sink worked better than in the tub. She uses a harness to lift her kids to her lap and secures them with a seat belt that fits around her and them. Even with the proper equipment, a parent with a disability will need to accept that there are some things they may not be able to do. Brittney and her husband considered getting a nanny to help, but eventually decided to try it on their own. Souheil found that even though the children’s rear-facing car seats were light enough to carry to the vehicle, he wasn’t able to reach over far enough to buckle them in. He also had difficulty bathing the kids. Because he takes a long time to get out of bed, Josie is always the one to get up with the kids at night and first

thing in the morning. His first advice to parents with a disability would be to show appreciation for your spouse. “Make sure you thank your spouse [because] you know your spouse will do more,” he says. Many of the safety concerns that potential parents may have can also be addressed through careful planning and the right equipment. Souheil put larger casters on his chair to reduce the chance of tipping while the kids were in his lap. Brittney uses a child leash whenever she goes outdoors

W hile kids may exper ience sadness over being unable to share cer tain experiences with their parents, they typically adjust well. What they experience is simply regarded as normal. Brittney notes that her kids have learned to adapt, just as she has. Her son is quite comfortable approaching people at the playground (with Mom’s permission, of course) to push him on the swings. Souheil’s twins, who are still very young, love being able to run up and down the ramp of his van. “They push me around [in my wheelchair] a lot and like to crash me into things.” They have also learned empathy and respect, helping him by picking things up that he cannot reach or holding his hand to “help” lift him out of bed. Both Souheil and Brittney have found that with careful planning and a lot of confidence, parenting from a chair is possible and rewarding. They suggest doing your research and talking to other parents with disabilities. Do your best to be prepared and accept that you’ll make mistakes along the way. Appreciate your spouse and, as Souheil says, “Enjoy the time.” Sounds like good advice for us all. (Heather Lissel is a researcher, writer and project planner and can be reached at www.qprojects.ca)

with the kids. She’s also come to accept, and her kids have as well, that there are some things that aren’t safe for her to do. She avoids going to playgrounds with sand in case her kids need her. “I definitely don’t go places I can’t function well,” she says, “even to indoor playgrounds where I can’t get to [my daughter] if she falls.” Because it can take a lot of time and effort just to get to an event, Brittney sometimes chooses not to participate. She says, “I always have to ask myself if being there is enriching the experience.” When she doesn’t participate, she shares the experience with her kids by having someone take a video and watching it with them later.

Check out the following online resources and talk to other parents with disabilities. SCI Alberta may be able to connect you with others who are willing to share their experiences. Spinal Cord Injury Alberta 1-888-654-5444 www.sci-ab.ca Check out our Family Dynamics Playlist on YouTube Tetra Society, Edmonton Chapter Contact: Brittney Neunzig 780-619-2261 www.tetra.org Search for adapted equipment on the Tetra society website or contact them for help in having custom equipment made. Tetra is a non-profit organization and services are free of charge. Abilities Magazine www.abilities.ca (search for “parenting”) Apparelyzed, an on-line forum for parents with physical disabilities http://www.apparelyzed.com/

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feature

A New

Door Opens by Armando Zavaleta

M

ay 21st , 2014 wa s a regular work day for me. My friend, Alex, and I were delivering custom solid core doors. The job site was normal. I’ve delivered these types of doors before. We leaned all of the doors against the wall only to realize that a door we needed to bring back to the shop was at the back. In a foolish attempt to save time we came up with a strategy to pull out the door we needed. Seventeen doors fell on top of me with the lightest door weighing in at 70 pounds! My friend somehow managed to lift this huge pile giving me the few seconds I needed to crawl out. To think that just a few minutes before I was on ‘Facetime’ with my girlfriend making plans to soak in the sun over some wine. Initially, I thought my life was over. During the first month in hospital I spent most of my time crying. The biggest change for me was when I read Rick Hansen: Man In Motion, a gift from my dear friend and boss. I felt like I could relate, and more importantly, like I could achieve anything despite my injury. I began to realize that life would still carry on. I began to make goals for myself and started a new list of things I wanted to achieve. I didn’t know how I would be able to work, go to the gym or travel, let alone how I would even get around. I made so many assumptions about how my injury

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would affect my life. As I continue my life as a spinal cord injury (SCI) survivor, I realize that many of these assumptions were wrong. One of my biggest worries was that no one would take me seriously because I was in a chair and that I would be treated differently. Overall though, I think my friends and family look past the chair and see me for who I am. Before the injury my life was always pretty busy. I worked, went to the gym, did school assignments, made time for friends, family and my girlfriend and tried to travel as much as possible.

The biggest change for me was when I read “Rick Hansen: Man in Motion” I feel lucky to have a wonderful person in my life who stayed with me despite my injury occurring only three months into our relationship. The biggest change is not being able to hold my partner’s hand while rolling about. In terms of my social life, being in a chair can be a little tricky, especially when it comes to being in a crowd. So what I do now is ask a friend to grab a beer for me instead of having to work through a crowd while trying not to spill my beer! An essential skill that every wheeler should master. Now that I’m in a wheelchair, I’ve found that one of the main barriers is lack of accessibility. Some of the places that were my favorite to hang out aren’t

the most accessible. I’ve had to find other ways to get into places, like going through the kitchen at my favourite bar. Going home for the first time after my hospital stay was the best! There really is no place like home and the smell of my mother’s cooking gave that saying a whole new meaning. The first day home was great but also very challenging; like having to crawl up the steps in order to get inside! For the long term, since going in through the front of my house wasn’t a possibility, we had to look at other options. For example, we built a small porch and installed a porch lift at the back door, ditched my old room in the basement and installed a very slow stair lift (very slow!) to a second floor bedroom. For the bathrooms, we simply installed a few sturdy grab bars and purchased a shower bench. I’m happy to say that I’ve been driving since October 2014. It was a long wait to get my licence but definitely worth it. I had to get my car fitted with hand controls, but that’s a small price to pay for greater independence. One thing that comes in handy is Bluetooth, for hands free calling. My three main goals in life before my injury were to 1) secure a job in finance as an (investment banker), 2) to see the whole world, and 3) own a home in San Sebastian, Spain. The only goal that has changed is the one about securing a job as a banker. I’m currently working for one of the big four accounting firms as a co-op student in assurance, but I’m still contemplating the career path I ultimately want to pursue. Rick Hansen and everyone I met on Unit 58 at the Foothills Hospital were my inspiration. Rick Hansen is living proof that nothing is impossible and that if you can dream it, you can achieve it. The patients and survivors of SCIs are all heroes. My advice for anyone who is newly injured is to try new things, whether it’s something specific, like physio, or just life in general. You may surprise yourself with all you can accomplish by simply trying and being persistent. Most importantly, trust and believe in yourself. Initially my injury affected my outlook on life in a negative way. Time has passed and I’ve gone back to believing that “the world is your oyster” and that happiness comes from within!


feature

Survival on Parliament Hill Steven Fletcher is the first Member of Parliament with quadriplegia to serve in the House of Commons. Fletcher’s spinal cord injury was due to a vehicular collision with a moose in 1996.

by Spencer Knight

I

t started not with a whimper, but with a bang shaking the Hall of Honour. On Wednesday, O c t o b e r 2 2 , 2 014 M a n i t o b a Conservative MP Steven Fletcher sat in front of the Reading Room doors in the Centre Block on Parliament Hill, attending the weekly Conservative caucus meeting with Prime Minister Stephen Harper. With the Parliament building in disrepair, many thought the first bang was the result of falling debris from the roof. However, fear soon swept through the Reading Room as one bang led to another and another until a chorus bursting from a rifle rang through the Centre Block. “It sounded like there were a lot of people storming the Parliament building,” Fletcher said. MPs are not allowed cellular devices in the caucus meetings and with that disconnection from the outside world, adrenaline and fear with a mix of gunfire can cause one’s worst nightmares to run wild. The Reading Room was thrown into chaos. Fletcher watched people take cover under desks and behind chairs or turn flagpoles into spears for self-defence. He told his caregiver,

Melissa, to save herself at the first opportunity. She bravely denied him. There was not much he could do for cover, as hiding under a desk was not exactly “accessible.” He backed up in his wheelchair towards the doors leading to the gunfire in the Hall of Honour and sheltered himself behind a wall of Tyndall stone. Although his position was still precarious and open, he would at least be protected from any bullets flying through the doors. The gunfire lasted 15 minutes that seemed to stretch on for an eternity. The MPs waited in anguish behind their towering barricade of chairs and flagpoles while the chorus of bullets climaxed and then silenced. With the shooter dead after a confrontation with Sergeant-atArms Kevin Vickers and his security team, the caucus was informed of the situation, and Prime Minister Harper was evacuated by his RCMP detail. Parliament Hill was put on lockdown so the grounds could be cleared of any other possible threats. After all, there were rumours of snipers on the rooftops; there was no room for chance. The MPs were able to get their phones and contact loved ones while they waited for an “all clear.” Fletcher took the time to call his father and tell him he was okay; his father was relieved and concerned whether Fletcher had his van fixed or not. This conversation shows something of the unshakeable nature of the Canadian spirit. Even in times of dire circumstance, there is this sense and desire to overcome adversity and return to normalcy. During his interview with Spinal Columns, Fletcher said that amidst

all the action, the one thing running through his mind was a thought of his family. “I always want my last thought to be of wilderness canoeing with my family […] in the boreal forest in northern Ontario.” He said that this is something he thinks about even when going in for surgery or right before he gets put under. His next thought was for the safety of his caregiver. Both of these reflect something iconic to Canadians. There is a feeling of doing what you have to do for the sake of survival, whether this means taking cover behind some Tyndall stone instead of a desk, building a wall out of chairs, or fashioning a spear from a flagpole. That survival instinct and the concern for the safety of others are what allow us to stare down the smoking barrel of a gun and come out unscathed on the other side. “Life happens even if you don’t have a disability. All we can do is live each moment to the fullest and be appreciative of that,” Fletcher said. “You can’t take [life] for granted, but I knew that after my accident.” In recounting these events, it is obvious that the appreciation of life and the conquering of obstacles is something inherent not only by Steven Fletcher but also by many individuals with disabilities on any given day. Life is rampant with obstacles and challenges—even living under a rock is not without the challenge of insects or spiders. So we do not wallow in the circumstance, we get creative. We forge a path to the nearest sanctuary of Tyndall stone; we stare down the smoking gun; we survive. Not with a whimper, but with a bang.

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feature

Social Media Brings Hope and Courage to new SCI Survivor by Kiesha Mastrodimos

O

n November 26, 2013, when I was 17 years old, I was driving home with my friend Brittany after babysitting. Out of nowhere a huge moose emerged from the ditch. With no time to stop, I instinctively slammed on the brakes—but not fast enough. The moose landed on the roof of my car, caving it in on top of my head. The roof shattered the C5/6 vertebrae in my neck, instantly paralyzing me and leaving me an incomplete quadriplegic (which means my spinal cord was not completely severed). It has been over a year since the accident, and I have accomplished and regained so much. I’ve graduated high school with my friends by doing my schoolwork in the hospital, and I recently got a job at Costco. Social media has probably played the biggest role in my recovery. When I was at the Glenrose Rehabilitation Hospital in Edmonton I was away from all my friends, so it really helped me keep in touch with everyone right from day one. That’s how most people initially found out about my accident. My g ra ndma Lucie told me about a young man who created a Facebook page during his recovery and recommended that I do the same. At first I was skeptical. I didn’t know what I would post or if anyone would join or even care. All I can say is 20

WOW! I’m so glad I started it. It has share my story and create awareness lifted me up and kept me motivated to others about my situation. I’ve every time I have felt depressed or had copious amounts of feedback saying I’ve helped them stay positive and impacted their lives with my positive attitude. It’s a good way to communicate and interact with others in similar situations. At work I have people come up to me and say, “You don’t know me but I know you. You’re an inspiration.” And things like that. In our region, everyone knows everyone, so I’m basically “famous in a small town” some say. Many of my friends and family are all over the place, going to college, etc., so social networking helps them keep up to date as well. After I woke from the accident, I just wanted to go back to school. Once I found out that wasn’t going to work, I pushed myself to do schoolwork in the hospital so I wouldn’t miss out on one of the most My prom night! important things in life: a high school felt like giving up. Seeing how much diploma. I taught myself to use a pen people support and look up to me again and to use a computer even gives me so much courage. better. I spent nights working until Because of social media, people 2 a.m., finishing essays and work I don’t even know, from all around sheets. Between therapies and a the world, follow my recovery. To social life, I was able to complete know you’re helping others by just my Social and English 30-1 classes. living your life is one of the most I had more time to understand the unexplainable and precious things curriculum, which I hadn’t before. you could ever know. It helps to Getting my diploma was the


greatest goal I have ever accomplished! That’s one thing I like to gloat about. But I couldn’t have done it without the three best teachers out there: Mrs. Davidson, Mrs. Nordhagen and Mrs. Carter. Many of the Beaverlodge staff assisted me throughout the process. They helped me get the assignments in, and they are still there for me. About a week after my accident I met with the doctor at the Glenrose Rehabilitation Hospital. I c ou ld b a r el y comprehend what “Social media has had just happened to me. I didn’t have probably played the enough time really, biggest role in my but he looked me in recovery.” the eyes and told me I would never walk again. I instantly looked at the clock and started to cry. I never looked him in the eyes after that. Since then I’ve used his negativity and discouragement as motivation to move forward and prove him wrong. My rehabilitation started about two weeks later and he was my doctor. He would come in every evening and check up with me. Even at the Glenrose I proved him wrong by regaining movement in my wrists, which

he thought was impossible! I get satisfaction knowing that I can prove them wrong, but I also understand the fact that they can’t give me false hope. I’ve taught myself to write, eat, type, do my makeup, and so much more. I just have to do it in a different way. I’ve proven doctors, skeptics and, most importantly, myself wrong. You really don’t know what you’re capable of until you’re pushed to the limit. I will spend everyday of my life working as hard as I can to achieve my goal of walking again. No matter what it takes. My mom is my biggest hero and inspiration. She’s the strongest person I’ve ever known. She has helped me every step of the way, before and after the accident, and the accident brought us closer than we’ve ever been. She deserves to go down in the hall of fame for Super Mom. I hope that in the future I will be able to walk, whether it’s independently or with help. I want to be living on my own and maybe start some college courses. I have just started to look at options for the future, but for now, I live day by day and barely know what I’m doing tomorrow. So we will see what life has in store for me!

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accessibility mobility needs of family members of all ages – from children to grandparents – can be met. All it takes is society’s ability to accept this change. The challenges include attitudes towards safety, function, and aesthetics. It is impor ta nt to have some understanding of the history of the single-family detached home. Statistics Canada defines it as: “A single detached dwelling contains only one dwelling unit and is completely separated by open spaces on all sides from any other structure, except its own garage or shed.” Before the Second World by Ron Wickman War, most people lived in multifamily dwellings and multi-storey Ron Wickman is a well-known Edmonton architect who has been apartment blocks. Following the a leading advocate for barrier free design in buildings and landscapes. second world war there was greater automobile ownership, must admit that my own the curb ramp, the airport ramp less ex pensive heat i ng, at t it ude towa rds t he and smoking laws, I believe the electrical, and building costs; development industry has curbless shower must become and most importantly, indoor changed over the years with more com monpl ace i n t he bu i lt bathrooms. All of this helped to research and experience. As a environment. If I was given the make suburbanization popular. design specialist in barrier Early single-family homes free design, and a strong were small (typically under advocate for accessibility, 1000 square feet), and could I was quick to blame new even be purchased through home bu i lders for not catalogues as kit homes. As including more accessibility a result, bathrooms were features. Today, I better designed to be as small as understand that the public functionally possible. The demand for features such size of a bathroom was as curbless showers and designed around the average visitability is simply not able bodied person; this there. The concept of, “build average person was really it and they will come,” is a male standing close to not that common in the six feet tall. Every person developer world. On the This image shows the very step ramp my father used at our family who did not fit this “average other hand, the general public home before the renovations. person” had to adapt to the will only pay attention to what is opportunity to promote only one bathroom layout. Historically, marketed towards them. Clearly, accessible feature in residential there has been very little variety a lack of understanding of the design, it would be the curbless i n bat h room layouts, t hus benefits of the curbless shower shower. Its creation in new offering families little choice in and other accessibility features construction is actually very the matter. Today, single-family exists with those who build and simple, and adds very little cost. detached homes are associated those who buy. However, history has prevented with suburbanization, and are This article’s focus is on the the curbless shower from being most common in low density, curbless shower area in singlea normal part of new home h igh income a reas. Homes family detached housing. It is construction. The argument here are typically bigger, complete in the residential bathroom that is that the curbless shower affords with larger, more luxurious our independence and safety all bathers true independence and bathrooms. It is more common can be most compromised. Like choice in how they can bathe. The today to see bathrooms big

The Need for

Independence I

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accessibility enough to house a large soaker bathtub and a separate shower stall. The issue for persons with disabilities is the shower stall is again, only large enough for the average person. I grew up in a single-family detached home. It was a three bedroom bungalow at just over 1000 square feet. The home was built in 1967, designed to accommodate my father, who was already using a wheelchair. The problem was that my father and the builder knew very little about what would make the most effective accessible home. The reality was that both my father and the builder did not want to see a home that was very different from all the other houses in the neighborhood. The resulting home was a “standard� design with slightly larger hallways. My father could not turn around in a circle in any room but the

This image shows a large luxurious bathroom that is not at all accessible to persons with disabilities. I have renovated more of these bathrooms than I would like to count.

living room; not his bedroom, not the kitchen, and yes not the bathroom. My father would need to wheel-in to the bathroom, transfer into the bathtub or onto

the toilet, and then back out of the bathroom when he was done. There was no open space under the sink, and grab bars were not installed. Luckily, my father was young and had good upper body strength. The design of the

This image shows the front entrance of my family home after renovations.

bathroom did not make it easy for him, but he adapted. This was the result of an inexperienced design and construction industry at the time. Most existing and new singlefamily detached homes lack basic accessibility features unless a designated, immediate family member of a home already has a disability. Interestingly, the design world has shied away from exploring the world of accessible residential design. Rather it has been Occupational Therapists who have taken the lead as the professional group skilled in the assessment and making of recommendations to improve access to homes. Currently, there are no laws or codes in Canada that require homes to incorporate even a bare minimum of accessibility. There is a Visitability movement, begun by grass roots disability advocates in the 1980’s, that focuses specifically on changing construction practices in new housing. Th is movement, a network of interested people working in their locales, works on educating, passing laws, and spurring voluntary home access initiatives with the intention that

basic access become a routine part of new home construction. Clearly, this is what I would also like to see happen with constructing bathrooms as large wetrooms complete with curbless showers. The accessibility movement gained traction as more people understand that accessibility is a civil rights issue for people with disabilities and for our society. Accessibility features in residential design is also much more noticeable since more people understand that our aging population (Baby Boomers) are our fastest growing population. It has been the boomer population that has been driving the market for the last 40 years. Culturally, we must break the traditional views that the population of persons with disabilities is small, and adding basic accessible features in all residential design is an unnecessary cost burden on the majority. Soon we will understand that basic accessible features in our homes will benefit all people. Simply put, the developers of new single family detached homes build what sells. Key advisors to developers are guided by what has been selling. Although they are well placed to identify and perhaps help create new markets, they typically choose, conservatively, to lead developers to provide a single type of accommodation, in effect creating a lack of variety and differentiated products on the market. In general, private sector developers are motivated to maximize profit from property development; and their desire to maximize profits is a short term goal. In effect, they follow trends. Right now, curbless showers are not big sellers. Larger, more luxurious bathrooms complete with granite countertops, and larger soaker bathtubs have a high public demand. (Part 2 of a 4 part series)

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nutrition

10 NutritionTips by Joanne Smith

A

Living With a Spinal Cord Injury

s a nutritionist and someone who has lived with a spinal cord injury (SCI) for over 25 years, I fully understand the unique challenges you face in tr ying to stay healthy while living a full and active life. One of the keys to this delicate balance is proper nutrition. After sustaining spinal damage, not only is your body suddenly forced to cope with the direct impact of paralysis, but it must also deal with the psychological stress, physical pa in, bio-chemical changes and hormonal imbalances that ta ke place. Together, these factors can contribute to the development of many common, recurring and potentially life-threatening secondary health complications, such as pressure sores, arthritis, osteoporosis, pain, fatigue, impaired respiratory and immune function, bladder infections, altered bowel function, type 2 diabetes, cardiovascular disease and obesity which can negatively impact your independence. Incorporating whole foods into your diet is an important way to help maintain your health, improve daily functioning, reduce secondary complications, minimize illness, and maximize your potential. But changing eating habits is not easy and people with SCI face added challenges such as knowing which foods are best for specific secondary hea lt h concer ns, dea l i ng w it h budgetary constraints, difficulty organizing and preparing healthy meals due to limited function and/or difficulty swallowing. So I’d like to

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provide you with my Top 10 simple, yet vital nutritional tips for SCI to help you get started on the road to good health! 1. Drink 6-8 Cups of Fluid (including fresh lemon water and ginger root tea) Support Digestive Health/Reduce Bloating a nd Gas: Digestion is regulated by the autonomic nervous system, as well as hormones and other chemicals that control the movement and secretions of the digestive system. The autonomic nervous system may be affected with SCI, which can negatively impact peristalsis (the muscular contraction that propels food through the intestines). This, in turn, can slow the movement of food

Stop eating all white bread, cakes/pastries, candy & pop. through the intestines, as well as contribute to indigestion, gas, bloating a nd constipation. Fresh lemon water helps stimulate stomach acid production, while fresh ginger root tea stimulates the digestive system and eases passage of foods through the intestines. SCI Overall Health – People with SCI have compromised immune function and are at high risk of infection (ie. bladder and respiratory). Fresh lemon has vitamin C and ginger

is a natural anti-microbial, both of which support the immune system. 2. Increase Fibre Support Bowel Health: Fibre is critical to proper functioning of the large intestines. This is achieved by fibres’ ability to absorb water; provide bulk to the stool; and makes the stool more slippery, soft and pliable, which makes evacuation during bowel routines easier. Studies show that 19 to 30 grams of fibre a day for people with SCI improves bowel transit time, the amount of stool being passed during bowel care routines and creates better stool consistency to help prevent bowel accidents. Any more or less fibre can slow bowel transit time in people with SCI (Cameron et. al 1996). Help Maintain Healthy Cholesterol Levels – Studies demonstrate that people with SCI tend to have low levels of ‘good’ cholesterol and elevated levels of ‘bad’ cholesterol. Fibre binds with cholesterol in the intestines, which is then excreted. Increase your consumption of fibre rich foods such as vegetables, legumes and quinoa. 3. Increase Probiotics Support Bladder Health/Immune System: Urinary tract infections (UTI) are one of the most common and costly secondary health complications for people with SCI. Catheterization introduces unwanted bacteria into the bladder and these unwanted microbes can cause recurrent bladder infections. These infections can contribute to other debilitating and potentially life threatening conditions


nutrition such as fever, k id ney stones, sepsis, fatigue, bladder stones and autonomic dysreflexia. There is also growing concern and evidence that antibiotic therapy to treat UTI’s actually promote recurrent bladder infections by giving rise to antibiotic resistant strains of bacteria and by destroying all the good bacteria in the body, therefore compromising the immune system. Furthermore, one of the body’s most important defenses against bacterial colonization of the bladder is the protective shield of bacteria that line and protect the external portion of the urethra. When antibiotics are used, this normal protective shield is stripped away or replaced by less effective organisms. Probiotics replenish healthy, protective bacteria thus supporting the immune system. Support Digestive Health – ‘good‘ bacteria helps to maintain healthy intestinal flora balance. Many people with SCI have an imbalance of good bacteria in their intestines due to consumption of medications, antibiotic use and stress. Support Bowel Health - Trillions of bacteria live in the large intestines and assist with proper bowel function. A healthy balance of good bacteria in the large intestine can enhance peristalsis. I recommend taking a probiotic supplement every day and consuming probiotic rich foods/drinks such as sauerkraut, fermented vegetables, miso and kombucha. 4. Increase Calcium Rich Foods Support Bone Health: Following an SCI the body starts to lose large amounts of calcium and other minerals. It is extremely important that individuals with SCI consume bone supporting nutrients on a daily basis because when essential bone minerals are lost there is a significant risk of developing osteoporosis; the incidence of osteoporosis following SCI is as high as 88%. Increase non-dairy calcium rich foods in your daily diet such as broccoli, dark leafy vegetables, hazelnuts, kale, sardines (with the bones), salmon, sesame seeds and almonds/almond butter.

5. Increase Vitamin B-rich Foods Increase Energy: Fatigue is a common issue that affects many individuals with SCI and it can often lead to low mood, reduced motivation and decreased ability to perform every day activities. Factors that contribute to fatigue in people with SCI include depression, anxiety, side effects of medication, sleep difficulties, low blood pressure, reduced respi rator y capacit y, posture, poor diet, additional effort that is required to get up each morning and perform all the basic tasks of daily living, urinal tract infections, pain and spasticity. B-vitamins are required for energy and to support the nervous system. Increase your consumpt ion of B-v it a m i n r ich foods such as leg umes, whole g ra ins a nd avocados. 6. Decrease Grains Maintain a Healthy Weight – Over 65% of people with SCI are overweight with one third of these individuals being obese. People with SCI have compromised glucose uptake and reduced metabolism, which can contribute to weight ga in (a nd the subsequent high risk of developing cardiovascular disease, pressure sores and type 2 diabetes). Eat no more than 1-2 servings of grains (1-2 slices of whole grain bread or 1-2 cups of brown rice, whole grain pasta) a day. Instead focus on getting carbohydrates from vegetables and legumes. 7. Eat Protein for Breakfast Maintain a Healthy Weight – Eating protein for breakfast helps stabilize blood sugar and insulin levels, which in tur n ca n help with weight loss. Studies show that people who eat protein for breakfast lose more weight and keep it off longer than people who eat carbohydrates for breakfast. Ma i nt a i n Sk i n I nteg r it y – protein is necessary for collagen production and repair. Eat eggs, protein smoothies or Greek yogurt for breakfast instead of bagels, toast or processed cereals.

8. Increase Intake of Healthy Fats Bowel Health: Healthy fats can help lubricate the bowel and soften hardened stools, acting as natural stool softeners, without the negative side effects of pharmaceutical ones. SCI Overall Health – People with SCI are at high risk of developing mu lt iple second a r y hea lt h complications such as cardiovascular disease and pressure sores. High DHA Omega 3 essential fatty acids help support the nervous system, as well as improve skin integrity and help protect against cardiovascular disease. Eat fish such as salmon, sardines and halibut at least 3 times a week and I recommend taking 2-4, 1000 mg high DHA EFA’s a day (consult with your physician before taking fish oils). 9. Drink Your Nutrients Getting all the recommended amounts of nutrients and fiber mentioned above into your diet is a challenge for anyone, but even more so for individuals with decreased f u nct ion who h ave d i f f icu lt y preparing and/or consuming food. One of the easiest solutions to obtaining health-boosting nutrients and fiber is to drink them in the form of a juice or smoothie. There a re m a ny good qu a l it y, cost efficient, easy to clean blenders on the market that enable you to mix any of your favorite fruits and vegetables together and retain all the fabulous fiber needed to support bowel function. Juices and smoothies are a delicious way to pack nutrients into your diet and can be enjoyed as a breakfast or snack. 10. Eliminate Refined Sugar SCI Overall Health – Sugar causes weight gain, weakens the immune system, can lead to fatigue and contributes to inflammation. Stop eating all white bread/ pasta/rice, cookies, cakes/pastries, candy and pop. Joanne Smith B.A., BRT Dip., CNP Certified Nutritional Practitioner Co-Author of Eat Well, Live Well with SCI www.eatwelllivewellwithsci.com

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travel

Silence of the Wilderness

Introducing Coyote Lake Lodge by Ross W. Wein, President, Alberta Abilities Lodges Society

L

ocated 60 km directly west of the Cit y of Leduc in Central Alberta, 480 acres of property is being transformed into a family oriented, disability and senior friendly lodge! The over-riding goal of Coyote Lake Lodge is to provide opportunities for more seniors and persons with a disability to interact with nature all through the year. Wellness, nature, and Alberta legacy programming will be featured that we expect will attract local as well as national and international visitors. Since we were registered in 2006 and received charitable status in 2007, projects have included: 1) building an inventory of adapted outdoor equipment, 2) holding outdoor events alone and in cooperation with partners, 3) establishing a Disabled Travel Fund endowment, and 4) working toward an accessible wilderness lodge. As of December 2014, working towards an accessible wilderness lodge (project #4) has become a reality! The 3/4 of a square mile of hills and valleys is half forested and is a wildlife haven since it is part of a stream and forest corridor from Coy-

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ote Lake to the North Saskatchewan River. Beavers have built dams all along Coyote Creek. Coyote, fox, elk, moose, and deer tracks are everywhere and neighbours tell us of bear, mountain lion, and wolf pack sightings. Part of the land has gardens and hay meadows which will support gardens/sports/trail therapies. There is a main lodge with a commercial kitchen, dining room, library, four bedrooms, and a meeting room. Walkways lead to four, two-family cabins and a recreation centre as well as other storage buildings.complete the complex. Several months of renovat ions a re needed before we host guests, b u t w e w e lcome indiv iduals, families, professionals, clubs, and business groups as volunteers. Volunteers will renovate buildings to meet current building codes and international/ accessibility standards as well as plan and begin to build trails and cultivate the five acres of gardens. When we open for business, we will offer overnight accommodation where families will benefit from nature, exercise, and the silence of the wilderness. Families and guests

will gain respite, gain confidence, achieve better health, strengthened family relationships, and have lots of fun. We will also use the lodge as a base to launch trips to explore Alberta’s legacies in communities and in national and provincial parks. We hope you agree that Coyote Lake Lodge is worthy of investment. Ask to be included in our email list, tell your friends about this great project, and donate to our charitable

society if you can. Every dollar supports the development of this new opportunity to serve seniors and persons with a disability – just like the 35 years provided by William Watson Lodge in Kananaskis. Contact Us: Ross W. Wein, AALS President and Prof. Emeritus, Univ. of Alberta; 780-436-0141, rosswein@shaw.ca Larry Pempeit, AALS Director, 780-231-5142, lpempeit@shaw.ca Paul Roberts, AALS Director and ScotiaMcLeod, 780-420-2286, paul.roberts@scotiamcleod.com Postal address: Alberta Abilities Lodges Society PO Box 4455, Edmonton Alberta T6E 4T5


THANK-YOU To our Sponsors, Patrons, and Supporters Over $75,000 raised in support of services for Albertans with spinal cord injuries and other physical disabilities!

Gala Sponsor

Red Carpet Affair 2015 Guest Speaker and Entertainer Justin Hines with his wife Savannah

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Stage Production

Volunteer Sponsors

Client Sponsors

The Percy Wickman Accessibility Award recipients Brenda Huband (L) and Lori Anderson (R) on behalf of Alberta Health Services South Health Campus with SCI Alberta CEO, Teren Clarke Wine & Beverage Sponsor

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feelgood

Ten Tips on Fashion and Feeling Good for the

Seated Individual by Teri Thorson

I

’ve struggled for many years with body im- needed it. Then after my crash that all ended. It age and it doesn’t help when you cannot find was like I lost my sexuality, my image, my femininthe right clothing. ity, my power all in a moEither they are too baggy ment. I saw myself as too in the legs, tight around skinny yet also flabby and the middle, showing my fat, short and GASP, I had butt crack, impossible to to rely on my brain. Well it get on or move in, or just has taken me a long time to all around hideous. learn to “feel good” about Eighteen years ago I myself and to develop my found myself in a unique clothing line “Normal? position after a spinal cord Fashions”, for women who injury. Previous to my inare seated. jury I was all about image. Not all of us however I was a model, dancer and can afford to custom make I rarely even spoke. I didn’t our clothing, so here are need to. My power was my some tips and tricks I’ve height, at 5’11. Never had learned along the way to much of a problem getting look good and feel good. Teri (right) and models from her fashion show. positive attention when I

1. Look in the mirror. What do you think is your best physical attribute? Eyes? Breasts? Arms? Find items of clothing that show them off! 2. Look in your closet and pick out an outfit or article of clothing that you love. Why do you love it? Is it the colour? The fit? The feel? Try to find other pieces that are similar and wear them more often. Yes - even when you are not going out somewhere! 3. Grooming and hygiene are very important to feeling good. Make sure you are clean, fresh and trimmed as much as possible. 4. Even when you’re not feeling Model from Teri’s fashion show. up to it, put effort into your image. For more information on “Normal? Maybe try a little makeup, perfume/ Fashions” or to book an image consul- cologne, something other than track tation, go to www.terithorson.com or pants and get out of the house! 5. Smile! A lot! Fake it till you contact terithorson@yahoo.ca.

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make it if you have to. 6. Most clothing you buy from a store should be altered to fit you. No one except mannequins are actually meant to fit those clothes. 7. Get active! Find something you’re passionate about and just do it! 8. Eat well, healthy and clean. 9. Stay positive! We all have issues we have to deal with and venting is good sometimes - but only sometimes. 10. Get uncomfortable! Try a new activity, style, a new way of dealing with things. It’s a great feeling to get out of your comfort zone and face your fears. We all have our up and down days. And that’s okay. Be in it. But don’t stay in it. Find what makes YOU feel good and find ways to add more of that into your life! Onwards and upwards!


innovations

Adaptive Products. A STEP UP

by Mieke de Groot

Wayne Hommy of Good Fare, AB found a good solution to having to “step up” into his truck. He asked if we would help spread the word in case there are others who might benefit from his experience. On July 6, 2012, Wayne sustained a T6 incomplete spinal cord injury after an abscess lodged near his spine. After being told he would not walk again and that he should consider going into a care facility, he and his wife, Eileen, agreed this was not an acceptable option. At the

same time they considered how they could retain their independence and active living considering their age. Wayne is now able to walk with the support of a walker, although he still uses a wheelchair for distance and visiting. With the help of an electric step, and a removable handle, Wayne now has complete control when it comes to getting in and out of his truck cab. He purchased the step from a local RV dealership however they are also available on Amazon! A local tradesman welded it to the truck

and the power was connected to a button easily accessed from the outside. At this time, Wayne does not use the steps to get out of the truck. He explains that he could have had the steps hooked up to the dome light the way they do in motor homes, but that’s not necessary for him and it would get in the way of his getting down. Wayne asked that we spread this idea around as it adds a great deal to his enjoyment and ability to manage his farm. He hopes the idea will help others.

LILYPAD SCALE The Lilypad Scale™ is designed for convenient, portable use anywhere in your home. It is incredibly thin and folds up for easy storage under a bed or in a closet. Using it is easy! Simply wheel on, press a button on your smartphone or Bluetooth 4.0 enabled device, and read your weight. The scale can store the weight of your wheelchair after the first time, so there’s no need to transfer out of your chair to weigh yourself. And while it can accommodate a user and wheelchair combination of up to 180 kilograms, the unit itself is lightweight, weighing just under three kilos. It works with manual and power wheelchairs as well as scooters. Go to www.lilypads.com for more details.

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Come spend a day golfing in support of a great cause on one of Edmonton’s finest golf courses! Texas Scramble Registration & Breakfast 6:30 AM Shotgun Start 8:00 AM

For more information or to purchase tickets, visit our website www.sci-ab.ca, or contact Angie Barron at 780-424-6312 or events@sci-ab.ca

MARLIN STYNER

Memorial Golf Classic Red Deer in support of Spinal Cord Injury Alberta

FRIDAY, AUGUST 14, 2015 Shotgun start at 8:30 am

River Bend Golf and Recreation Area Over $1 Million in Cash & Prizes to be won! For more information please contact:

Spinal Cord Injury Alberta 105, 4807 50 Avenue Red Deer, AB T4N 4A5 Phone: (403) 341-5060 Email: Doug.Manderville@sci-ab.ca or visit www.sci-ab.ca

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Numerous sponsorship opportunities are still available!


Spinal Cord Injury Alberta

Fitness & Wellness Centre

Featuring the Functional Electrical Stimulation Bike Who We Are

Our Facility

The Benefits

Certified Exercise Physiologists and Athletic Therapists who provide individualized, evidencebased exercise programming for people with spinal cord injury and other physical disabilities.

At the SCI Fitness and Wellness Centre we have state of the art equipment including: Standing frame elliptical trainers, NuStep, Adapted Resistance Training Equipment, Ceiling Lifts, Raised Mats and the Functional Electrical Stimulation bike.

Improved cardiovascular fitness, Increased muscular strength, Maintenance or improvement of bone density, Weight management, Enhanced energy levels. levels

If you think you can, you will.

5211 4TH STREET NE CALGARY, AB T2K 6J5 Monday - Friday 9:00 AM - 4:00 PM (403) 228-3001 www.sci-ab.ca

Adjust. Adapt. Thrive.

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regional

what’s NEW in

ALBERTA PROVINCIAL VOTE 2015

The recent provincial election saw a massive change to Alberta politics! SCI Alberta is looking forward to continued collaboration with the provincial government under the new leadership of the New Democratic Party. The Alberta Disabilities Forum (ADF), which represents 45 organizations and thousands of Albertans with disabilities, provided information on various topics, including available voter services, party contact list, how to visit a candidate and have your issues/concerns heard, as well as fact sheets related to issues of concern for people with disabilities. SCI Alberta was pleased to support the ADF through the circulation of these important and informative materials.

THE POWER OF SOCIAL MEDIA

SCI Alberta’s video “Raising Children from a Wheelchair” is one of our most popular videos and has become even more popular after being promoted on the U.S. website spinalpedia.com! http://www.spinalpedia.com/ blog/2015/05/strongest-moms-around-sci-moms/

Helping Way Fund - SCI Alberta understands that living with a disability can mean having to incur additional unexpected expenses! SCI Alberta’s Helping Way Fund is an emergency fund of last resort. Oftentimes additional funding is required by individuals to purchase supplies and equipment not fully funded under any government program. Some examples include purchase of a second wheelchair cushion, wheelchair repairs, etc. Applicants must have a spinal cord injury or related physical disability and live in Alberta or areas served by SCI Alberta. To find out more, contact your local SCI Alberta office!

CALGARY PEER PROGRAM

With the support of Peer Coordinator Marilyn Erho, our Calgary Peer Program continues to thrive. Ongoing events such as restaurant reviews, where groups get together to socialize and enjoy a meal as well as critique the food, location and accessibility, continue to be popular. Ongoing activities for those in rehabilitation at the Foothills Hospital include a monthly pizza evening and a hot chocolate/Timmy’s get together. With new additions to the peer program, such as the Twirling Spokes Square Dancing classes and the possibility of Self Defense instruction at our upcoming Family Fun Day, there are even greater opportunities to learn, socialize and share. SCI Alberta’s peer program continues to connect people who have “been there and done that”. Thank you to our Calgary Peer Program sponsors MediChair, Pipella Law and Scotiabank who make this all possible. To find out about upcoming activities in 2015 go to www.sci-ab.ca or frequent our Facebook page as we are always providing updates on the latest and greatest peer events.

COMMUNITY ACCESS

Community Access for People in Continuing Care (CAPCC) is a province wide program that assists adults under the age of 65 living in long term care to access and interact with their community and programs of choice. Alberta Human Services provides contract funding to organizations across Alberta to deliver this program. SCI Alberta currently holds the contract for Edmonton, Calgary, Red Deer, St. Paul and Lloydminster regions. This past quarter, we were able to assist approximately 400 individuals take part in community outings, such as movies, theatre, shopping, classes, family events, etc. In many cases, this is the only way some of our clients are able to access the community through these brief but important outings.

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Travel Bugs Peer Event on March 24, 2015


regional

EDMONTON PEER PROGRAM

Despite budgetary constraints that resulted in some loss of staff, including our Peer Program Coordinator in Edmonton, the Peer Program continues to thrive through the active support of staff and volunteers. Thank you! Our recent “Kutting Korners” evening is one example of peers helping peers, where members came together to talk about “tricks of the trade” and alternatives to high cost supplies, etc. To keep up to date on events planned for 2015, go to www.sci-ab.ca.

ANNUAL GENERAL MEETING AND RECOGNITION AWARDS

Congratulations and thank you to some of our outstanding volunteers as well as Corporate Supporter, Priority Printing, who we had the pleasure of recognizing at our Annual General Meeting on June 13, 2015. Anna Despins, Jamie Graham and Cecil Pizzey were presented with the 2015 Regional Volunteer Awards and Priority Printing Ltd. was presented with the Corporate Supporter Award. Many thanks to our retiring board members who have given generously of their time and talents during their tenure with SCI Alberta - Harvey DeCock, Timothy Hill and Mark Wilson. Congratulations to Harvey DeCock who, after more than 20 years of service, was recognized as the first Honourary Board Member. Welcome to four new additions to the Board of Directors, Bryce Clarke (Edmonton), Steven Jeffrey (Fort McMurray), Cecil Pizzey (Grande Prairie) and Linda Seitz (Medicine Hat).

ACTIVE LIVING/ADAPTED ADVENTURES

SCI Alberta’s Adapted Adventures program grew tremendously over the past few years. In collaboration with the Paralympic Sports Association, the Adapted Adventures Program is now being managed by their program staff. For more information, contact Amy Ripley or Sydney Deegan at info@parasports.net.

RED DEER ON THE MOVE

The Red Deer office of SCI Alberta is now located at 105, 4807 - 50 Avenue (sharing space with the Multiple Sclerosis Society), Red Deer, AB T4N 4A5. Contact information remains the same at 403-341-5060 or reddeer@sci-ab.ca.

OPEN HOUSE

Thank you to over 40 people who came out to our Red Deer Open House BBQ on April 29th. It was wonderful to share the evening with everyone and to celebrate our new location and partnership with Multiple Sclerosis Society of Red Deer. Thank you to Save-on Foods East Hills Centre who helped to sponsor this special evening!

2015 PEER CONFERENCE AND TRADE SHOW

Coming up on September 4, 2015 in Red Deer at the Red Deer Sheraton Hotel. With presentations about nutrition, exercise, treatment and prevention of skin breakdown, recreation and leisure activities, this is a conference you won’t want to miss! To find out more or to register, contact reddeer@sci-ab.ca or call 403-341-5060

Award Winners: Anna Despins, Jamie Graham (top), Cecil Pizzey (bottom L) and Tim Downey and Maureen Hutchinson of Priority Printing (bottom R).

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regional

MEDICINE HAT NEW LOCATION

Check out our new Medicine Hat office located at 101 - 1201 Kingsway Avenue SE (shared space with Multiple Sclerosis Society), Medicine Hat, AB T1A 2Y2. Phone, fax and email all remain the same at 403-504-4001 (phone), 403-504-5172 (fax) and medicinehat@sci-ab.ca. An Open House took place on June 11 which provided an opportunity to check out our new digs as well as meet our new Regional Program Coordinator, Andrea Schulz.

STRETCHING IN THE SUNSHINE

In partnership with Medicine Hat Family YMCA, peers spent the afternoons of May 20th and June 10th relaxing in sun while learning stretching techniques and sipping on cold lemonade.

GRANDE PRAIRIE Grande Prairie SCI Alberta, under the leadership of Mieke de Groot, continues to be a beehive of activity! Some of their activities include the Grande Prairie Peer Bowling Group, involvement in the Accessibility Advisory Committee of Grande Prairie, the successful completion of the Community Living Attendant Training Program, and much more.

opinion

From My Perspective

A

few incidents over the last few weeks got me thinking about how wonderful the people are in this province. It may sound a bit sappy but as a person with a disability, I really appreciate how people go out of their way if they see you having some difficulty. And it’s not just about opening a door for you. It goes way beyond that. This past winter I was getting off the bus to cross the street to go for some groceries. As usual, the curb

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cuts were full of snow and present a real challenge for someone in a wheelchair. When the light changed to walk, I proceeded to try and cross the street. I made it to the bottom of the curb cut and that was it! I couldn’t go forward or backwards and just sat there spinning my wheels. I began to worry because it was below freezing and I was getting very cold. I wasn’t sure what I was going to do when a guy in a van pulled up, put his four-way flashers on and jumped out. He proceeded to push me out of the snow and onto the street and stayed until I was totally across the intersection and on my way. This past week my service dog and I were in the mall when she decided she had to take a poop. Well this is a real predicament, since I can’t pick it up and dispose of it. I sat there thinking...what am I going

by Larry Pempeit

to do? I can’t believe it! Then out of the blue a man walks over and says “It looks like your dog had a poop. Do you have any bags?” When I said I had one in the back of my chair, he grabbed the bag, picked up the poop and disposed of it. Once again, a kind stranger saved my day! These are just two times that I can quickly recall where somebody helped me out of a difficult situation but if I think about it, I realize it is a daily occurrence. Whether it’s something simple like adding sugar to my coffee or reaching something from a top shelf, people are just great at helping each other out. Too often we only see the negatives and not the positives things that make life so much easier and enjoyable. I would like to say a big thank you to all those who go out of their way to help someone else! Or that’s how I see it.


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inourlibrary MAGIC MOMENTS: TWELVE LITTLE STORIES ABOUT DISABILITY, FAMILY AND FAIRLY NORMAL LIFE BY LISA BENDALL This collection of essays, most of them prev iously published in magazines and newspapers, embraces the joys and challenges of family life. Author Lisa Bendall is married to Ian, who is intelligent, funny and kind…and also happens to be quadriplegic. Together they are raising a daughter, holding down full-time jobs, sharing a mortgage, looking after a dog — like many other folks. Readers are invited to share this family’s journey, from major milestones to fleeting, yet magical, moments. With humour and heartfelt emotion, Bendall w r ites about facing dow n judg y parents, fielding absurd wheelchair

CAM TAIT: DISABLED? HELL NO! I’M A SIT-DOWN COMIC! BY HEIDI JANZ a journalist, sports writer, public

It seems to me that anyone with disabilities who sets out to write their life story is faced with a unique challenge, namely, finding an artful, engaging way to write candidly about both trials and triumphs, victories and failures, without letting your story slip into the socially-dominant stereotype of the “Super-Crip” who accomplishes extraordinary things in the face of ex t raord i na r y obst acles, solely by virtue of his/her own intestinal fortitude. This challenge becomes even more formidable when you just happen to have built a successful career as

36

speaker, and comedian, who just happens to hang out with Canadian icons like Wayne Gretzky and Rick Hansen---and just happens to have Cerebral Palsy. Yet, this is precisely what Cam Tait has managed to do in his newly published autobiography, cowritten with Jim Taylor. Perhaps the main thing that keeps Cam Tait: Disabled? Hell No! I’m a SitDown Comic! decidedly outside the stereotypical Super-Crip genre is its sustained focus on the important role that various communities of people have played in Cam Tait’s life. Indeed, a golden thread that runs through the book is the power of human interdependence and community— whether the community is formed within a neighbourhood, a school, a sports team, a profession, or a condo complex. By consistently grounding his story within the various communities into which his journey has taken him, Tait powerfully—and, at times, poignantly—illustrates ways in which others have crucially impacted his life, and how he, in turn, has impacted the lives of others. In addition to being a compelling personal narrative, the book also serves as a kind of chronicle of the

remarks, surviving home renovations, embarking on family road trips, even battling parking spaces during holiday shopping season. For all this family’s unique traits, readers may recognize more than a few universal themes…whether or not they themselves have family members with disabilities. Book available in paperback or on Kindle. A m a z o n . c o m : h t t p : / / w w w. a m a z o n . c o m / Magic-Moments-Little-Stories-Disability/ dp/1511752599 For the Kindle edition, click here: http://www.amazon.ca/Magic-Moments-LittleStories-Disability-ebook/dp/B00WD5MPS0

histor y of Edmonton’s disability community. As readers follow Tait through his years at Glenrose School Hospital, then through his, sometimes triumphant and sometimes painful pioneering days as the first person with disabilities to take NAIT’s Radio and Television Arts program, to his early career writing for The Spokesman, a local magazine on disability issues, and finally, through to his three decades writing for the Edmonton Journal, they witness Edmonton, as a microcosm of Canadian society, become a place where people with disabilities are increasingly included in the mainstream. Ultimately, perhaps the most compelling aspect of Tait’s book is the candour with which he writes about his setbacks and struggles, perhaps most notably, his struggle with depression. In a society which often views the lives of people with disabilities as being of lower quality because of the dependence on others which having disabilities necessitates, Cam Tait’s story is a powerful antidote to this prevailing culture of ableism, for it is not a story of the one-dimensional life of a Super-Crip, rather it’s the story of a multi-facetted, complex, and very human life well-lived.


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WARNING: Do not be misled by lawyer ads claiming extremely large structured settlements which were achieved many years ago when interest rates were very high. For instance, the $5.8 million lump-sum settlement noted above could equate to a $45 million structured settlement if we assume a very high interest rate and a 40 year payout. Such large structured settlements are no longer available due to today’s very low interest rates.

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S U N L I F E P L A C E , 1 0 1 2 3 - 9 9 S T. , E D M O N T O N

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Spinal Columns Summer 2015 Volume 30 Number 1  

This issue features: Parenting with a Disability (do your best to be prepared and accept that you’ll make mistakes along the way), A New Doo...