Alberta’s Health & Lifestyle Magazine for People with Spinal Cord Injuries & Other Physical Disabilities
Fall 2012
CANADA’S
GOLDEN MOMENT by Darrell Nordell
Publications Mail Agreement #40011327
2s
Fall 2012 Volume 27 Number 4
DEPARTMENTS
COVER STORY
16 Canada’s Golden Moment
4 Editorial 5
Letters to the Editor
6
In the News
9
Meet the Staff
10 CPA (Alberta) Advocacy Housing 13 The Smart CondoTM Editor............................................Betty MacIsaac Assistant Editor........................ Zachary Weeks Layout/Design.........................Kyle Thompson
Spinal Columns is published four times a year by the Canadian Paraplegic Association (Alberta). Advertising rates available upon request. Ideas, submissions, requests, suggestions and letters are always welcome. Address them to: The Editor, Spinal Columns Canadian Paraplegic Association (Alberta) #305, 11010 - 101 Street Edmonton, Alberta T5H 4B9 (780) 424-6312
Aboriginal 18 A New Wheelchair for Perry The North Greenwich Arena of 16,000 is at capacity and the crowd is buzzing as the two best teams in the world collide...
FEATURE STORY
14 The Joys & Challenges of Parenting
Opinion 19 From My Perspective Health 22 CPA (Alberta) Fitness Centre Research 24 Every Volunteer Helps 25 Research Participants Needed 26 The Research Path Fitzone 28 Into the Wild Community 30 Tetra: What is it? 31 An Opportunity You Can’t Pass Up
Material printed in Spinal Columns may not be reproduced without written permission from the Canadian Paraplegic Association (Alberta). We neither endorse nor guarantee any of the products or services advertised 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.
Accessibility 32 Signs That Things Are Not Right Regional News 34 What’s New in Alberta Travel 36 Danny’s Northern Adventure 38 Birthday Road Trip
Publications Mail Agreement #40011327 Return undeliverable Canadian addresses to: Canadian Paraplegic Association (Alberta) #305, 11010 - 101 Street Edmonton, AB T5H 4B9 E-Mail: edmonton@cpa-ab.org
Eliza Yawney shares her experiences as a parent.
ISSN 1195-5767
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editorial
The federation of
the Canadian Paraplegic Association
moves forward with a name change
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n May 2012, the national office of the Canadian Paraplegic Association officially changed their registered business and operating name to Spinal Cord Injury Canada. At the same time the British Columbia Paraplegic Association changed to Spinal Cord Injury BC. CPA Ontario became Spinal Cord Injury Ontario effective November 11, 2012 and CPA Newfoundland and Labrador will be launching their new name before the end of the calendar year. Change process is underway for CPA NS and CPA Saskatchewan in the New Year. CPA (Alberta) was also hoping to change its name to Spinal Cord Injury Alberta within 2012 based on strong support by our membership. However there has been a delay because we were not able to achieve a registered name change related to the fact that other currently registered organizations exist in Alberta with “Spinal Cord Injury� in their title. As you may recall, in 2011, an online survey was conducted with members and volunteers of the network of the Canadian Paraplegic Associations in Canada seeking feedback on the best name to reflect the organization now and in the future. Alberta clients and volunteers were strongly in favor of changing our name to be more reflective of the persons who come to CPA (Alberta) for information, support services and peer programs which include persons with mobility challenges related to injury or disease at varying levels of the spinal cord. We continue to get advice from the Government of Alberta corporate registry services and legal counsel on how best to resolve this challenge of changing our name to be more consistent with the other provincial members of Spinal Cord Injury Canada. We will continue to advise our readership about the possibility of a name change for CPA (Alberta) in the next issue of Spinal Columns.
Canadian Paraplegic Association (Alberta) Toll Free: 1-888-654-5444 www.cpa-ab.org Find us on Facebook and become a fan! Watch videos on our Youtube channel: www.youtube.com/cpaalberta HEAD OFFICE #305, 11010 - 101 Street Edmonton, Alberta T5H 4B9 Telephone: (780) 424-6312 Fax: (780) 424-6313 E-mail: edmonton@cpa-ab.org Executive Director: Teren Clarke SOUTHERN DISTRICT OFFICE 5211 4 Street NE Calgary, AB T2K 6J5 Telephone: (403) 228-3001 Fax: (403) 229-4271 E-mail: calgary@cpa-ab.org RED DEER OFFICE #103, 4719 - 48th Avenue Red Deer, Alberta T4N 3T1 Telephone: (403) 341-5060 Fax: (403) 343-1630 E-mail: reddeer@cpa-ab.org GRANDE PRAIRIE OFFICE 10 Knowledge Way Grande Prairie, Alberta, T8W 2V9 Telephone: (780) 532-3305 Fax: (780) 539-3567 E-mail: grandeprairie@cpa-ab.org LETHBRIDGE OFFICE 1274 3 Avenue South Lethbridge, Alberta T1J 0J9 Telephone: (403) 327-7577 Fax: (403) 320-0269 E-mail: lethbridge@cpa-ab.org MEDICINE HAT OFFICE 26-419 3rd Street SE Medicine Hat, Alberta T1A 0G9 Telephone: (403) 504-4001 Fax: (403) 504-5172 E-mail: medicinehat@cpa-ab.org ST. PAUL OFFICE Box 653 St. Paul, AB T0A 3A0 Telephone: (780) 645-5116 Fax: (780) 645-5141 E-mail: stpaul@cpa-ab.org LLOYDMINSTER OFFICE 4419 52 Avenue, Lloydminster, AB T9V 0Y8 Tel & Fax: (780) 875-1046 E-mail: lloydminster@cpa-ab.org FORT McMURRAY Gregoire Park Centre 194 Grenfell Crescent Fort McMurray, AB T9H 2M6 Tel: (780) 743-0307 Fax: (780) 743-4563 E-mail: fortmcmurray@cpa-ab.org
Teren Clarke Executive Director
WEST-CENTRAL OFFICE PO Box 128 Wabamun, AB T0E 2K0 Tel: (780) 892-3431 Fax: (780) 892-3431 E-mail: westcentral@cpa-ab.org
CPA (ALBERTA) MISSION STATEMENT To assist persons with spinal cord injuries and other physical disabilities to achieve independence, self-reliance and full community participation. 4sSpinal Columns
CPA (Alberta) BOARD OF DIRECTORS Dale Williams, Chair Scott Sankey, Treasurer Pamela Bennett Maxwell Brunette Lisa Crown Harvey J. DeCock Kent Hehr Timothy Hill Ron Jewitt Ray Royer Souheil Saab Ned Shillington Eleanor Sugarman
inbox
LETTERS TO THE
EDITOR
Spinal cord injury affects not only the individual but also family members. Amanda’s brother experienced a spinal cord injury and passed away some time ago. Her e-mail below was sent to Guy Coulombe, current Manager of Rehabilitation Services and also refers to Margaret Conquest, past staff member. Hi Guy, Well, it has been a while since I saw you last. I received a wonderful call from my mom this morning and she told me she ran into you yesterday at Heritage Days. My mom was reminding me of your huge involvement in our lives back in the day. Trust me when I say this – that it has not gone unappreciated. You played a crucial role in my brother’s life. Although I don’t remember everyone from the early stages, I do remember your name, and my mom was telling me how important you were to us and same with Margaret! It brings tears to my eyes knowing that you and Margaret and the team at CPA are there to help families like ours to adapt and learn to cope basically. You both are truly incredible individuals! This is all so surreal to me; it’s like serendipity. I would love the opportunity to e-mail you or maybe even meet in person and reminisce about the past over a tea one day. If not, I would love to just write e-mails or have some form of communication back and forth. Till next time. Sincerely, Amanda
CORRECTIONS Spinal Columns Summer 2012 issue, page 34 included a picture of Dale Williams presenting an award which should have indicated Christina Scott (Boese). Charlotte Watkins also received an award but was not shown in the picture. Spinal Columns Spring 2012 issue, page 6 included an article about the Viper Power Trikes. Please note the e-mail address should be wheelez@gmail.com.
Change of Address Spinal Cord Injury Canada, formerly known as the Canadian Paraplegic Association (National), has moved! They are no longer at 230-1101 Prince of Wales Drive, Ottawa ON K2C 3W7. Their new address is: Spinal Cord Injury Canada, 512-130 Albert Street, Ottawa, ON, K1P 5G4
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inthenews
IN THE
NEWS
COURAGEOUS: Elmer Cardinal
(June 12, 1947 – August 22, 2012) Elmer was a long time and valued member of the CPA (Alberta) staff from 1998 to 2006 and then from 2007 until 2010. As Aboriginal Services Coordinator, Elmer worked with and advocated on behalf of aboriginal people with disabilities throughout Alberta but particularly in the St. Paul/ Saddle Lake region. Elmer was a Elmer Cardinal respected elder in the aboriginal community; soft spoken, humble and a man of deep conviction, he was also courageous, determined and oftentimes tenacious in his support of those who needed help, not only his clients with physical disabilities but also members of his own community. From providing food to others from his own garden to providing musical entertainment, Elmer was a man of many layers and talents and will be sadly missed. Elmer passed away from complications related to diabetes. “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying “I will try again tomorrow.” - Mary Anne Radmacher
A Giant Among Us: SHEELAH ZAPF (July 29, 1938 - September 4, 2012) CPA (Alberta) said goodbye to long time friend and volunteer Sheelah Zapf who passed away in September 2012. Sheela h and her husband Gene were busy for many years as hockey parents to young Bill. Life changed dramatically in the mid 1990’s when their 18 year old hockey all-star son, was body checked during a game and reSheelah and Gene Zapf ceived a spinal cord injury; and so began Sheelah’s relationship with the Canadian Paraplegic Association. A member of the Board of Directors for 14 years, Sheelah served in various capacities, including a two year term as Board Chair and many more years as Chair of the Fund Development Committee on a provincial and national level. Even though Sheelah retired from the CPA (Alberta) Board of Directors in 2007, she continued to be actively involved as volunteer speaker during United Way campaigns and provided countless hours in her capacity as Chair of the CPA (Alberta) Red Carpet Affair. She wore her heart on her sleeve and oftentimes there wasn’t a dry eye in the house as she spoke about her own personal experiences. Sheelah’s contributions as a volunteer with the CPA on a provincial and national level were significant,
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contributing in a major way to the success and good name of the association. Sheelah dealt with major personal health issues over the years, including dialysis treatment on a regular basis and a kidney transplant. Sheelah also contributed many volunteer hours to other community organizations, including the United Ostomy Association, The Kidney Foundation and St. Dominic’s Parish. CPA (Alberta) was proud to present Sheelah with the prestigious Ambassador Award at the 2008 Red Carpet Affair. Tiny in stature but a fearless warrior who took giant steps, making sure that concerns received the attention they deserved, Sheelah Zapf was an inspiration and role model for us all! Left to cherish her memory is her loving husband of 40 years, Eugene; her daughter Patricia (Robert) and her son William (Tanya), six grandchildren; brother William and sister Rosemarie.
Zachary Weeks & THE Diamond Jubilee Communications and Community Development Coordinator, Zachar y Weeks was presented with the 60th Anniversary Queen Elizabeth II Diamond Jubilee Medal on September 7th, 2012. The Honourable Laurie Hawn, PC, CD, MP (Ed- Hon. Donald S. Ethell, Zachary Weeks monton Centre) invited and Hon. Laurie Hawn, MP Weeks and other award recipients to celebrate their achievements with His Honour, Colonel (Retired) the Honourable Donald S. Ethell, OC OMM AOE MSC CD LLD, Lieutenant Governor of Alberta at the Coast Edmonton Plaza in Edmonton. In his nomination it was noted that despite facing each day with the challenge of spastic quadriplegia related to cerebral palsy, he excels at using today’s latest technology, including a power wheelchair to overcome his physical limitations. His passion to make the world more inclusive and accessible to persons whose participation is challenged by multiple barriers is enriched by his personal experiences growing up with a physical disability. He communicates passionately through written and verbal presentations motivating others to become change champions. In addition to sitting on various committees and boards, Zachary always makes time to lend a hand to those in need and is a mentor and peer supporter to others facing challenges. Congratulations Zachary! See more about Zachary’s evening at www.youtube.com/cpaalberta.
IN MEMORIAM Bruce Alexander Elmer Cardinal Sandra Carpenter Janine Dixon Ken Plotnikoff David Stables Ranjit Sidhu Sheelah Zapf
Calgary St. Paul Cold Lake Calgary Calgary Cochrane Calgary Edmonton
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meetthestaff
StafF Profiles
Jill Jackson joined CPA (Alberta)’s Edmonton office, as Client Services Coordinator in September 2011. She graduated from Mount Royal College in 1992 with a diploma in criminology. Not wanting to limit herself to a justice-related background, Jill went to Grant MacEwan Community College and obtained a social work diploma in 1994, and she has worked in the non-profit sector since. What Jill likes best about her job at CPA (Alberta) is her clients and supporting them in working toward a future filled with hope and success. Jill is married with two children. She enjoys spending time with family and friends, especially on camping trips.
Vahen King has worked as a Client Services/ Community Development Coordinator in the Lloydminster area for approximately one year. Vahen says “I enjoy growing and learning how to ‘give back’; living with a spinal cord injury has opened my eyes to a new world of possibilities. Working with CPA, allows me to grow and experience things I would never have thought possible, from freedom to travel, to developing my own personal goals”. Vahen has recently transitioned into a new role as a program coordinator for the new CLAT program. (Community Living Attendant Training Program). Vahen is intrigued by how people interact with each other and what makes them “tick”, which is why about 4 years ago, she became a Personality Dimensions/True Colours Facilitator. She says, “When looking at the four different personality ‘colour types’, it is fair to say, even though you may be predominantly one ‘color’ we are most definitely all plaid.”
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onyourbehalf
ADVOCACY Construction on the Boyle Renaissance project has begun.
Boyle Renaissance Project In August 2012, construction started on this 90 suite apartment complex in downtown Edmonton. Thirty-three units will be wheelchair accessible. Three of these units will incorporate smart technology and will include technology that can be controlled from an iPad or iPhone. All units, while fairly compact, make good use of floor space and innovation. Partners in this building include the City of Edmonton, MĂŠtis Housing Corporation and CPA (Alberta). Anticipated completion is the fall of 2013. If you are interested in becoming a tenant of this new apartment complex, contact Ross Norton at 780-424-6312 or ross. norton@cpa-ab.org to receive an application.
ACCESSIBLE PROPERTIES WEBSITE Calgary Accessible Housing Society is working with CPA (Alberta) to develop a website that will enable companies or individuals to list their accessible properties. It is hoped the site will include an assessment tool that can help determine accessibility. Individuals looking for an accessible home could then go to the site and determine if the property meets their requirements.
Edmonton NGO Office Project CPA (Alberta) continues to meet with a number of organizations that represent persons with disabilities to work towards the development of a nonprofit center for agencies. It appears there is good support within this sector (18 agencies) as well as within provincial and municipal governments.
Builders Award CPA (Alberta) and other community stakeholders have developed a Builders Award for housing developers and builders. This award will bring interest to the need for accessible housing and hopefully encourage developers to build more access-
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ible housing. We are presently working with the Home for Life Committee (chaired by Glenrose Hospital staff), Safety Codes Council, Calgary Affordable Accessible Housing Committee and the Edmonton Home Builders Association. The committee is now looking for possible sponsors for the award.
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housing The
Condo™
Smart by Heather Lissel
As anyone who has ever sustained a severe injury can attest, coming home is a difficult and frightening transition. Questions such as “How will I do this without a therapist to help?”, or “Will this equipment work as well in my house as it does here?” can be the cause of great anxiety. Now, with the help of a new model home on the University of Alberta campus, people with disabilities can be more assured that the skills they learn and equipment they receive while in hospital will work in a home environment. The Smart Condo™ is a one-bedroom, fully furnished model condominium that was constructed in order to provide students, researchers, and product developers with a testing ground for techniques and technologies. A broad range of simulation activities can take place in the condo. Examples include transfers, cooking, and toileting. All of these activities are captured using cameras that are discretely placed throughout the space. Dr. Lili Liu, co-academic lead with Dr. Eleni Stroulia, refers to the condo as “a living lab.” She notes that it is being used by students from a variety of faculties, including Occupational Therapy, Industrial Design, Computing Science, and Pharmacy, and will also be used by faculty conducting research, and industry for product evaluation and testing. In addition to the space being used for testing, teaching, and research, it is also an example of accessible design. Nonslip flooring, widened doorways and moveable cabinets are examples of some of the accessibility features. Having these features allows students and researchers to see what an accessible space looks like and how accessibility features facilitate independence. The Smart Condo™ is an excellent example of several different disciplines sharing research space and working collaboratively to solve problems. Having gone through five years of development it is now ready to achieve its mission to provide hands-on training experience to the next generation of health professionals and expand the development of technologies that improve the health of Albertans with disabilities.
Smart Condo Teaching Team: Robert Lederer, Lili Liu, Ioanis Nikolaidis, Greig Rasmuseen, Eleni Stroulia and Cheryl Sadowski.
To find out more about the Smart Condo™ and see a 360 degree tour, go to www.hserc.ualberta.ca/en/Resources/Spaces/ SmartCondo.aspx or simply Google “smart condo university of alberta”.
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feature
The Joys and Challenges of
Parenting by Eliza Yawney
The itsy bitsy spider went up the water spout, down came the rain and washed the spider out. Karsten please be quiet, Thomas is sleeping. Please don’t do that. Clean up time! Clean up, clean up, everybody everywhere. Clean up, clean up everybody, do your share. Oh the joys of having kids! After becoming paralyzed from a snowboarding accident in 2001 I wasn’t sure if my lifelong dream of getting married and having kids was going to happen. Who would want to date, marry and have children with someone in a wheelchair? But after a few awkward dates I was back in the game! And now, almost 12 years later, I am happily married with, not one, but two cute kids! Life is good. Many people have asked me, “How do you take care of two kids while being in a wheelchair?” How does anyone take care of two kids whether in a wheelchair or not? That is what I want to know. Because being a parent is hard! Parenting is one of the most rewarding roles in the world. But it doesn’t come without its challenges. I am currently reading a book titled “Kids are worth it” by Barbara Coloroso. She explains that sometimes what we think is the problem is just the reality. It would be easy for me to say that parenting is harder for me because I’m in a wheelchair. The wheelchair is not the problem. The wheelchair is the reality. I’m in a chair; I can’t change that. Now let’s focus on what the challenges are and how I’ve solved them. Carrying a baby around, using a crib, playgrounds and play places, grocery shopping, not running over any toesy woesys and keeping my cool, are some of the many problems I have faced as a parent. I won’t be able to cover all of the problems and solutions, but I hope to write future articles to expand on this list and possibly create a website or blog on parenting. When I found out I was pregnant with my first baby I was so excited! I contacted a few other moms in wheelchairs to ask questions about how they took care of their kids. Because let’s face it, I was a little nervous about how it would all work out! I wanted to know how they carried their babies around. One suggested dressing my babies in overalls so I could pick them up easier from the ground. This seemed like a really great idea; fortunately however I have enough strength to pick my babies up from the floor by grabbing them around the waist or the arms. My concern was how I was going to carry them around when I was
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Eliza with her husband, Davis and their two children.
wheeling. My first baby, Karsten, now three years old, weighed 5lbs 13oz. He was so tiny I would just lay him right on my lap. I took him everywhere like that. I never worried about him falling off. When he was about three months old I was faced with the problem of him moving. He was strong enough to support his head but not strong enough to sit by himself. I decided to get creative and sew a strap to go around my waist and his while he sat on my lap. I used this until he was strong enough to sit and balance himself and even used it a few times when he was a toddler so he couldn’t jump off and run. My second baby, Thomas, was not as chill and relaxed as Karsten. He would stiffen while lying on my lap, push his feet against my stomach and kick himself off. I was faced with the problem of carrying around a stiff, colicky newborn. I wasn’t as creative this time around. I went out and bought a little cat bed from a pet store. I thought it was a great idea. I planned to attach it to my lap somehow. Really? A cat bed?? The look on my husband’s face when he saw it made me realize what a crazy idea it was. But I was desperate! At home, I would hold Thomas and wheel with my elbow and other arm and pull on doorways and other objects to get into a room so he wouldn’t fall off. But in public, I was too self conscious to do that and have people worry that I was going to drop my baby (which I have never, ever done). The problem eventually solved itself as he grew older and was able to sit. In the meantime, in public, I would have my husband or other adults carry Thomas. I have found that a lot with raising kids. We get so stressed about problems - like potty training (an article in itself) and eventually they work themselves out. During my first pregnancy I realized a regular crib and change table wouldn’t work. I am not able to reach and bend into a regular crib and most change tables are too high. My husband and father-in-law built a change table that basically looks like a table with sides so the baby can’t roll off. It was fairly inexpensive to build. I was lucky to receive some funding through the Rick Hansen Solutions Fund to cover the cost of having an accessible crib built. These two items have made my life so much easier. The crib is raised high enough so that I can wheel under and has one side that slides open to allow easy access. No bending and twisting. Both are approached straight on. When I go on
Photo by Kelsey Pankhurst.
feature
2 Eliza and her sons, Karsten and Thomas. holidays and don’t have these two pieces of furniture, I notice my back will hurt from twisting and bending from playpens and couches that substitute as change tables. So for me, these two items are a must. Prior to having kids, I served on the planning committee for construction of an accessible playground at Henderson Lake in Lethbridge, Alberta. Little did I know how much that playground would be a part of my life. In the summer of 2011 we moved close to Henderson Lake and I took Karsten to that park almost everyday. When he was starting to walk and climb on everything, I needed to be close. I was only able to take him to parks that were accessible with no gravel or sand. He is now at an age where I can take him to just about any park to play. Thomas is still little enough that he sits by my side while Karsten plays. Karsten has gotten really good at asking other parents to help him into the swings and push him. I will see parents ask him something and then he’ll point to me over on the grass. I wave, and they proceed to help him. It’s great! He knows he has to check in with me now and then, and most days I’m able to convince him it’s time to go. I have found that when it’s just me taking him to the park he listens a whole lot better than if we go with others. Maybe he knows I can’t haul him off kicking and screaming like other parents. As for play places, I just don’t go unless I’m with other parents. You have to pick and choose which activities you feel most comfortable with taking your kids. It is the same with swimming, the lake or skating. We only go as a family. But honestly, what parent likes taking two kids to a swimming pool when neither kid knows how to swim? Ok, so taking two kids under the age of three grocery shopping? All those in favour? That’s what I thought. My advice? DON’T DO IT! Whether you are in a wheelchair or not, it probably won’t be a pleasant experience. I would suggest waiting until you can go by yourself or bring someone with you. There will be times when you need to take your kids with you by yourself, but my husband made a good point. He said, if you took the shopping cart away from a walking parent (because I obviously don’t use a cart) then they are actually worse off than I am. At least I can strap the non-walking child to my lap. Going shopping with
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one child for me was doable. Karsten would sit on my lap and I would attach a bag to the back of my chair and load it up, being careful not to have the bag outweigh us. But shopping with two children is obviously harder. When Thomas was born I was too scared to attempt taking both of them on my own. I wasn’t confident that Karsten would listen and might go running out of the store into the parking lot. One day I really needed to buy something so I loaded both kids into the car, drove to the store, parked the car, thought it through…and then chickened out and drove away. I didn’t successfully go shopping with both of them until Thomas was about 8 months and Karsten was almost three years. Again, the problem kind of resolved itself with time. Karsten has since become a good little helper and will carry a few items for me as we shop. But not every shopping experience is successful. A while ago I took them both to the store to buy bulk candy for a birthday party. Bad idea! I placed Thomas on the floor and started filling bags with candy. Thomas gets excited about all the bright colors, starts squealing and scoots himself over to the bins. While he’s screaming because he can’t reach the candy, Karsten is helping himself to everything in sight, including the uncooked black beans. I am trying to scoop as fast as I can and explain to Karsten that the candy he is enjoying has not been paid for and therefore he’s stealing. While all of this is happening, an elderly man walks by and starts to laugh and says “I wish I had my camera”. Talk about a gong show! Have I ever run over my kids toes? Well, have you ever stepped on your kids toes? Is it really any different? Karsten crawled under my chair once and got stuck and I couldn’t wheel forward or backward. We eventually figured it out and he still has all his limbs. Someone once asked me what the little voice inside of me says when I feel like I can’t do it anymore. You really don’t want to know what that little voice says. I am not as patient as I may appear. Parenting is hard and some days are harder than others. And that’s the truth for anyone. Sometimes we lose our cool. Picture this…I’m flying down the ramp to our house chasing after my two year old, screaming like a crazy lady, wheeling across the bumpy front lawn, getting caught in a rut, almost launching myself out of my chair, still screaming. He gets away and into the neighbor’s yard. All of a sudden I stop. I am outside… anyone could be watching me. I’ve totally lost it! I may have to be a little more creative with solutions to my parenting problems and I may have to ask for help here and there, but who doesn’t? I’m grateful I married a man who helps with housework and laundry. He even likes to do the grocery shopping, thank goodness. This allows me to focus more on raising our children and trying to be a good parent. There is nothing that brings me greater joy then watching my two boys giggle and laugh together, or seeing Thomas clap his hands and wave bye-bye, or having Karsten explain to me how a steam roller and bucket excavator work. These are the real joys of parenting and that’s what makes it all worthwhile. The moment you bring a life into the world, there is nothing more fulfilling. I would love it if you shared your parenting stories with me and I hope to keep writing articles and have a continuous section on parenting. Please send feedback, comments and questions to elizayawney@gmail.com.
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Photo by Wheelchair Basketball Canada/Canadian Paralympic Committee
CANADA’S
GOLDEN MOMENT by Darrell Nordell
E
Team Canada won the gold medal in Men’s Wheelchair Basketball vs. Australia at the London 2012 Paralympic Games at the North Greenwich Arena.
tournament. A great exposure for him is the Australian tour in ven today, the third quarter of the 2008 Beijing Para2009 with Great Britain and Australia. Chad is quickly learnlympics still resonates in my mind. Going into the half ing his role on the team. Although the World Championships is with a 9 pt lead over arch rivals Australia, I was sure one of the worst showing for the Canadian Men’s team in over we had it. Well, as they say in the car racing industry 20 years, athletes and coaches know the real vision and goal and in wheelchair basketball, the “wheels” literally fell off and are the 2012 London Paralympics. by the end of the third quarter we were 8 pts down and facing 2011 is a Paralympic Qualification a 17 pt swing in the game. This eventuThe crowd is buzzing year for teams from the America Zone ally leads to our loss and a Silver medal, North America, Central America and which is an accomplishment, but for the as the two best South America. Three teams from the Canadian Men’s Team and going for our teams in the world Tournament of America’s attend the third consecutive gold medal, it was collide. London, Paralympics. Selection camp “failure”. We did not achieve our goals is held in May and qualifications are held in Guadalajara, Mexand we were facing retirement from some key veteran players. ico in November. Newly appointed Head Coach, Jerry Tonello has his hands full. Athletes commit to the vision of “Every Day in Every Way” In comes Alberta athlete Chad Jassman, a class 1.5 in the and six athletes sign contracts to play with semi-professional wheelchair basketball world. As Chad’s Alberta Provincial Head teams in Europe. One of these athletes is Chad Jassman who Coach and knowing his great work ethic, I know he has a good signs with a club team in Trier, Germany – his first professionchance of making the team. Chad ‘shows’ well during the camp al contract. Chad moves to Germany from his home in Calgary and his fitness level and speed are attributes of a high performto live, train and compete for approximately 8 months. When ance athlete. Even though Chad has played less than 5 years, Chad enters the court at the Para Pan Am Games in Guadalahe is selected to the team and starts his National Team career. jara, where Canada is ranked 2nd behind the United States, his World Championships 2010 in Birmingham, England and improvement is evident. Chad plays significant minutes for the team leading up to the
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feature The round robin tournament of 8 teams goes as planned with no games lost by Canada; however, semi-finals are against a little known team from Columbia. Canada is caught off guard! Columbia wins going to the Final, securing a spot in London. Canada plays Mexico in a packed stadium with one spot remaining for the Paralympic Games. Canada plays a complete 40 minute game and eventually has London calling. It’s 2012 with London only 8 months away and the Canadian team has moved past the Columbia upset. At the January Selection Camp for the Canadian Paralympic Team, only 17 athletes are invited for 12 spots. Chad makes it to the team and returns to Germany to finish the season. From that point on, the team gets together almost once a month; the schedule is grueling! Mid February: Tournament in Belgium with the Netherlands, Germany, Belgium and Australia. Canada wins all games and beats Australia to win the tournament. May: After Canadian Nationals, the team trains for one week in Richmond, BC, leaves for a tournament in Worcester, England and then into France. Canada wins against Great Britain, Spain and France! July: Three week training camp at Brock University. August: Off to Arnhem, Netherlands for Paralympic staging and more games. The team plays Turkey, Germany and Netherlands with 3 wins and 1 loss. The team trains and plays in 37° temperatures and no air conditioning. Athletes are worn out and need to rest. The team moves to Sheffield, England to train as they prepare to arrive at the Paralympic Village. August 25th, 2012: The Canadian team arrives at the Paralympic Village; a city within a city! Opening ceremonies and the first game is just days away. At the Paralympics, wheelchair basketball takes place the entire two weeks with athletes practicing, watching video, in coaches meetings, competing or conducting interviews with various networks and journalists. Some athletes have their own fan club of family and friends who come to cheer them on. Chad’s family and friends are present at every game. Canada’s round robin pool includes 2004 Paralympic Games bronze medalist Great Britain, as well as Germany (potential medal contender at the 2016 Paralympics in Rio de Janeiro, Brazil). Rounding out the field is Japan, Poland and Colombia. Canada opens against Japan, finishes with Colombia and most games are won by more than 15 points. Quarter finals are against Spain and the Semi Final sees Great Britain beating Turkey in their Quarter Final and has to play them once again. This game is tight until half and Great Britain is running on emotion. Canada wins a Gold Medal rematch with Australia! The Gold Medal game is one of the best and highest level wheelchair basketball games played. The North Greenwich Arena of 16,000 is at capacity and the crowd is buzzing as the two best teams in the world collide. In the first half teams are trading hoops and Chad plays significant minutes. The second half starts strong for Canada and by the end of the third quarter there is a 4pt lead. The fourth quarter is no different and Canada wins the Gold medal with a 64 – 58 win! Chad played an amazing tournament throughout the games and is now back in Germany preparing for another season overseas. It was an experience of a lifetime and as the paralympic motto reads “Inspire a Generation”. I believe the Canadian Men’s Basketball team accomplished just that! Spinal Columns
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aboriginal
A New Wheelchair for
Perry Kootenhayoo by Kris Janvier
P
err y Kootenhayoo was only 18 years old when he was hit by a drunk driver on the Alexis First Nation Reserve. Perry described the night it happened, “One night my cousin and I were walking home from the town site when a police officer stopped us. He told us to be careful because there was a drunk driver out there and he didn’t want anyone getting hurt”. Perry shrugged it off as nothing and went on his way. As they came across a section of the road that had no street lights, he remembers his cousin shouting at him to jump. “What do you mean jump?” he replied. At that point, all he remembers is seeing the headlights. As a result of the accident, Perry suffered a C7 incomplete injury. Over the next year, he spent the majority of the time in rehabilitation. “The experience was very frustrating at first,” Perry said. “Finding out you need supports you didn’t need before, such as adaptive devices to eat and brush your teeth. But slowly you begin to gain your independence back. The Glenrose Hospital does a great job.” Following his rehabilitation, Perry returned to the Alexis First Nation Reserve. He described the difficulty of this experience, “Going anywhere on the reserve was a challenge. With gravel roads, and little to no accessibility, it made things difficult. I ended up isolating myself a lot. I lacked personal energy to do things, which became very draining.” Along with these challenges were the negative pressures that many Aboriginal youth face on-reserve. “There was a lot of pressure to drink (and sometimes overdo it),” Perry said. “This was the lifestyle I was trying to avoid.” Prior to his injury Perry spent the majority of his time playing sports and volunteering for Youth Canada, which specialized in non-violent conflict resolution for youth. “I was very involved with the community,” he said. This was something he wanted to continue following his injury. But the lack of motivation stood in the way. It wasn’t until Perry met someone from CPA (Alberta), that he decided he wanted to get on the right path. “I first became
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Perry Kootenhayoo and his new wheelchair. involved with CPA through the Aboriginal Client Services Coordinator. He helped me get a new wheelchair, talked to me about wheelchair rugby, and showed me that I could still be active,” Perry said. “This motivated me to the point I was almost stubborn about it. I didn’t want to feel isolated any more; I didn’t want to feel lazy. I got it in my head that I can do this. All I had to do is want to change. So I moved from the reserve into a transitional housing unit in the city, which gives you a place to stay until you can afford to live on your own”. One year later, Perry now has his own apartment downtown with big plans for the future: “I want to become more active, not only find purpose, but keep it.” Perry recently joined a local gym where he trains with staff from the Steadward Centre. “Down the road I hope to find a career where I can help others. And even further down the road I hope to see myself in the next Paralympics. What’s dreaming if you’re not dreaming big?” Perry asks with a smile. Perry believes the key to achieving his goals is positivity. “Staying positive is the key,” he said. “I do this by surrounding myself with people who have the same mindset as me, people who want to see me do better as a person.” When asked what advice he would give others going through a similar situation he stated, “Living with a disability doesn’t have to be the end. There’s still life after the injury. It’s the unknown that we put our fear and anger towards. The best way I could describe it is like a caterpillar that goes into the darkness of a cocoon, he doesn’t know what to expect, or how long he will stay in this dark place. But by enduring darkness, he emerges as something great: a butterfly.” Following another successful ChairLeaders event in Ottawa, Spinal Cord Injury Canada (formerly Canadian Paraplegic Association) had several new manual wheelchairs to donate to each Province. The hope was that a wheelchair would go to one deserving Albertan who had overcome great adversity with optimism, and would benefit from a new wheelchair. Perry Kootenhayoo was chosen as the recipient!
opinion
FROM MY PERSPECTIVE by Larry Pempeit
A
f ter celebrating my 30th anniversary with CPA (Alberta) this past August, I took the time to do a little introspection. This is my perspective on those 30 years. The first thing I came to realize was that we have made much progress in the areas of access and attitudes for persons with disabilities. While it may seem that we are continually butting heads with obstacles, I think we are moving in the right direction. Thirty years ago I drove to the CPA (Alberta) office located in a small strip mall in my full-size van; it had an unreliable platform lift and a power seat base that was made by my stepfather! My wheelchair was an old BEC that went about 3 km/h and made a howling noise that could be heard two blocks away. I now drive a modified minivan from my wheelchair and use a power wheelchair that can go at least 10 km/h, has a power tilt and has other available options such as seat tilt. I lived in a group home because it was the only option available other than an extended care center. Living in the community was nearly impossible unless you were able to secure funding from social services or had sufficient personal finances. Finding a caregiver wasn’t always easy; you had to provide your own training as there were no attendant/caregiving courses available. Now I am fortunate to own my own wheelchair accessible condo, home care is available at no cost to me through the selfmanaged care program; and training courses for caregivers are now available. I recognize however that we are still challenged in terms of recruiting and keeping caregivers. Curb cuts, which we now mostly take for granted, were not always available, other than a few in downtown Edmonton or at some busy intersections. I remember having to wheel down back alleys to access the sidewalk, which sometimes meant jaywalking. Going into a business wasn’t always easy as there were usually a few steps. This included new buildings. Thanks to an improved building code, new public buildings must be barrier free and many older buildings have been retrofitted. Going to a movie meant sitting in the aisle lodged against the
seat beside you so you wouldn’t slide to the bottom of the aisle. Restaurants, for the most part, were not accessible; and when you did get in, you often had to sit at the back. Thankfully, we now have decent seating in theaters and restaurants. Curb cuts are the norm and older areas are slowly being upgraded. If you didn’t own a vehicle and couldn’t transfer into a car, you mostly stayed home; there were no accessible taxis or buses. The parallel transit system was run by a charity and only provided service to children; buses in most major centers now have low floors and are wheelchair accessible; accessible taxis are available in many major centers; and a parallel transportation system is available to all citizens with disabilities regardless of age. I remember shopping and being the only person in a wheelchair; people looked at me as an oddity and children often pointed and asked their parents ‘What’s wrong with him?’ Now when I go shopping, it is typical to see many people with disabilities. I think increased technological advances have had the greatest impact. Thirty years ago there were no power doors to enter buildings, I had a CB radio in my van for emergency use, speaker phones weren’t available or you had to buy a special attachment, computers were science fiction, a GPS was a paper map and a large TV was 21 inches and weighed 50 pounds! I could probably go on and on about how things have improved but I think most of you are not thinking about the past but are focused on today and the future. And that is not a bad thing. From my perspective, I like to see that we are making progress so it was good for me to do some remembering, and I know many of you will be able to relate as well. I’m hoping the next 30 years will bring a society that is totally inclusive and accessible!
Personal Injury Lawyers 403.255.2636 www.vogel-llp.ca
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Serious Injuries • Serious L • Over 50 years serving Albertans with their personal injury claims. (Left to Right) Bill Hendsbee, Frances Zinger, Ron Jewitt, Frank Mackay, George Somkuti, Jean Oliver, Warren Stengel
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health CPA (ALBERTA)
&
SCI Fitness Wellness CentRE Calgary by Kelly Nitchie and Toby Redfern After 16 months of learning, planning and renovating, we are finally underway at the CPA (Alberta) SCI Fitness & Wellness Center in Calgary, AB. With the support of community partners including Canwest Elevator & Lifts, Motion Specialties, Pipella Law, the Rick Hansen Foundation and, most recently, Cenovus Energy, we are now open! We offer an intensive 36 week research program consisting of individually tailored exercises which focus on increasing core strength, physical function and overall quality of life. Participants will be part of a research study monitored by two investigators, Dr. Gregor Wolbring (University of Calgary) and Dr. Andrea Loewen (Alberta Health Services), tracking the potential changes in pulmonary function and impact on quality of life. The purpose of our study is to determine whether aggressive-exercise therapies are able to create clinically meaningful changes in persons with a spinal cord injury (SCI). CPA (Alberta) is very excited to be able to offer such a unique program in Calgary, as many of our members were traveling to Southern California regions to partake in similar opportunities. Individuals with spinal cord injuries can participate at no cost if they meet the study criteria. Eligibility at this time is restricted to persons with an injury of T-5 and above, cannot have been through a similar exercise program, cannot have been admitted into hospital for a respiratory related illness in the past six months (6 months prior to your start date) and is medically cleared to perform exercise. Participants may also have to provide a recent bone density scan to ensure they are not at risk for injury during exercises. Our preliminary investigation of specialized fitness programs and opportunities in Canada and the US indicated a significant gap in Calgary based options. By offering a barrier free facility complete with specialized equipment and trainers, we feel we can bridge the gap. The goal of the CPA (Alberta) SCI Fitness Center is to build on hope that occurs after discharge from hospital based rehabilitation and help make it a reality. Our facility currently offers two independent Guldmann X - Y lifts, complete with slings and “active trainers” (or adult jolly jumpers as our participants like to refer to it), two Easy Stand Elliptical Trainers, one ergometer, walking parallel bars, Total Gym and multiple matted areas for myofascia release, stretching and strength exercises. With our recent major equipment sponsor, Cenovus Energy, we have ordered a third Easy Stand Elliptical Trainer, a NuStep T-5 unit, and two 5 x 7 Mat Platform Tables. What does the equipment do? Easy Stand Elliptical Trainers provide participants with lower body range of motion and upper body strengthening; the unit has hinged break-away sections for each leg that allow full leg extension while standing, which can be moved to create a reciprocal movement in the legs. The NuStep T-5 simulates a natural walking motion while eliminating undesirable joint stress and promoting functional fitness. It is used to ensure safe and effective treatment of individuals within
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Kelly Nitchie works with clients. a wide range of ability levels by enabling independent control of step length, resistance level, pace, and exercise duration. The two Guldmann X-Y lifts allow participants to safely transfer between stations as well as into and out of their wheelchairs. The Active Trainers allow for supported standing and walking type exercises. The “Total Gym” allows participants to re-activate their leg muscles through repetitive movements. By triggering spasms through movement, SCI participants are able to propel the device numerous times, offering an intense workout, potentially providing increased muscle mass, functional improvement as well as cardio benefit. Since the centre opened in the Summer of 2012, we have seen some remarkable results and testimonials from our first group of participants. Stewart Midwinter wrote “It has been just over one year since my accident; I am currently labelled as a high level complete quadriplegic. Since starting the program my life has changed dramatically; it has only been six weeks and I can now push a manual wheelchair on my own, reach overhead and touch items I never could, and just recently I was able to sit straight up on my own on the floor mats for over five minutes without falling over”. Located in NE Calgary, right off McKnight and Edmonton Trail and positioned directly in front of a main bus stop, the centre is normally open between 8:00 am – 4:00 pm. Due to the outstanding response however, we have been opening as early as 6:00 am and closing as late as 6:00 pm. Along with our research program, we are also offering scheduled personal training sessions and drop in times to allow the center to be fully utilized by those with an array of disabilities, including cerebral palsy, stroke, SCI and more. CPA (Alberta)’s SCI Fitness and Wellness Center Calgary is now taking applications for the final two rounds of intake to the research study commencing in October and December 2012. Space is limited, so be sure to act quickly. Contact the Calgary office of CPA (Alberta), at 403-228-7433. Applications can be obtained on our website at www.cpa-ab.org. Go to www.youtube.com/cpaalberta to view more information about the centre.
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research
Every
Volunteer Helps by Elizabeth Condliffe MS, MD PhD student with Dr. Monica Gorassini in Biomedical Engineering Resident in Physical Medicine & Rehabilitation
A
sensory information, we know that people with cerebral palsy s researchers in rehabilitation, we are often dependhad injuries to their brain early in development (usually before ent on volunteer participants. Similarly, people with 1 year of age). Therefore we decided to see if the direct pathway illnesses, disorders or injuries that require rehabilitafrom the brain to the motoneurons in the spinal cord, known as tion, frequently want results beyond what is currently the corticospinal tract, is damaged more in people with less inavailable and look to research. With the help of over twenty hibition in their spinal responses. To do this, we asked Zachary adults with cerebral palsy, including Zachary Weeks, we are and our other participants to return to the U of A – this time to doing research into some of the basic mechanisms that contribthe Peter S. Allen MR Research Centre. Here he changed into ute to difficulty moving for people with spastic cerebral palsy. scrubs and lay still for 25 minutes while we performed an MRI On Zachary’s first visit to Professor Monica Gorassini’s on his brain, including a special sequence designed to look at Motor Control lab at the University of Alberta, we performed pathways. Lying still in a small tube for 25 minutes is not fun an experiment evaluating his muscle’s response to a sensory for anyone, but it is particularly challenging and sometimes stimulation. We wanted to know how motoneurons (nerve cells uncomfortable for people with difficulty controlling their movethat control muscles) respond when sensors in the skin are actiments. Zachary required two extra straps to help his positioning vated. After Zachary transferred to our massage table, we atfor the MRI, but never complained. tached sensors to the muscles of his legs, which included putting In another effort to interpret the results from our first experia wire in one of his calf muscles. We then stimulated the sole of ment, we looked at the function of the corticospinal tract and his foot while he pushed against a board at the end of the table. some of the inputs in the brain to that tract. Once again ZachThe study Zachary was participating in was built on earlier ary and many others took half a day during the work-week to work performed in the lab. That experiment showed that people come to our lab. In this study, we asked Zachary to activate his without a neurological injury had a mixed response to stimulacalf muscles, and we stimulated his brain tion, including some inhibition of the mousing transcranial magnetic stimulation toneurons. In contrast, all participants Do people with (TMS) to activate the same muscles. with spasms after a spinal cord injury spasticity because of From this study, we are learning about (SCI) had a purely excitatory response. This suggests that the way sensory incerebral palsy have the contribution of some brain circuits that inhibit the muscles and some brain formation is processed in the spinal cord this same change? circuits that excite the muscles. Most is changed after SCI, which helps us expeople have a single dominant pathway from one side of the brain plain why treatments meant to increase inhibition can reduce to the other leg that is easy to activate. Already we have found spasticity in people with a SCI. With the help of volunteers like that many people with spastic cerebral palsy have pathways to Zachary, we sought to answer the question: “Do people with their legs from both sides of their brain, but that these pathways spasticity because of cerebral palsy have this same change?” are often harder to activate. Interestingly the answer to our question is not “Yes” or “No.” Our results are preliminary and the studies are ongoing, but We found that some people with spastic cerebral palsy had mixed it does appear that our findings will lead to an improved underresponses with inhibition just like people without cerebral palstanding of how the motor system can reorganize in response to sy, whereas others had purely excitatory responses similar to the injuries that can cause spastic cerebral palsy. In the future, people with a spinal cord injury. In research it is often easier to this new understanding will help us and other scientists to demake discoveries when one group acts in one way and another velop better treatments. Not all research produces such intergroup acts totally differently, as was the case with responses esting results, but the opportunity for interesting results could in people without and with spinal cord injury. The results were not exist without our dedicated participants who volunteer even not as simple when looking at people without and with cerebral though in this study we are not providing any treatment or other palsy. The challenge became to explain why the responses diftherapy to them. Our project recently received an award from the fered in some but not all people with spastic cerebral palsy. In Canadian Association of Physical Medicine and Rehabilitation. other words, can we predict which participants would have abWe received that recognition, but only in name: the true award normal responses and therefore be more likely to benefit from should go to Zachary and everyone else who participated in the treatments that target reducing the excitation (a possible surstudy and others still who helped to make it possible. gery) or increasing the inhibition (some medications)? To answer this new question, we needed to do more research. The identity of research participants is confidential. Zachary Weeks Although we saw a change in how the spinal cord processes asked to serve as a case example for this article.
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research
Research Participants Needed FES-assisted arm and leg-cycling/Leg-cycling-alone for improving ambulation after incomplete spinal cord injury Many forms of human locomotion, such as walking, running or swimming involve rhythmic coordination between the upper and lower limbs. Such coordination implies the existence of a neural connection between centers in the spinal cord controlling arm and leg movements. An incomplete spinal cord injury may affect this coordinated control of arms and legs and compromise the ability to walk. Therefore, our study wants to compare two training therapies for walking improvement: 1) Functional electrical stimulation (FES)- assisted arm and leg cycling training; 2) FES-assisted leg cycling alone, to identify the improvement in recovery of walking. FES is a common rehabilitation strategy where varying levels of electric current are applied to the muscles and assist in performing movements. No previous study has explored the neuronal coupling between networks controlling the arms and legs, comparing to leg training alone, to improve walking through FES training. The purpose of our study is to compare whether FES- assisted arm/leg cycling or leg cycling alone strengthens remaining connections between the brain and the muscles, to ultimately better improve the potential recovery of walking after incomplete spinal cord injury. Participants in our study will train one hour 5 times a week, either in FES-assisted arm/leg cycling or FES-assisted leg cycling alone, for a total of 12 weeks. Participants need to have an incomplete spinal cord injury and able to stand or take a few steps using assistive device. Specific tests will measure walk-
ing distance and speed, motor cortex excitability, spinal cord excitability, muscle strength, fitness. If successful, this paradigm is expected to help the rehabilitation of walking on the participants and should be easily translated to clinical practice. If you have any questions about this study, you may contact any of the individuals listed below: Rui Zhou, Graduate Student, 780-248-1876 Vivian K. Mushahwar, Ph.D, 780-492-4519 Su Ling Chong, B.Sc., P.T., 780-492-3796
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research the by Jennifer Jackson
M
PATH
eet the 2012 Bohdan V. Olijnyk Research Participant Award recipient Edgar Jackson. Since 1999, Edgar has participated in a variety of research projects involving the mandate of the International Functional Electrical Stimulation Society (IFESS). This year Edgar was nominated by the Spinal Cord Injury Treatment Centre (Northern Alberta) Society (SCITCS) and the local organizing committee of IFESS 2012 as a candidate for the Bohdan V. Olijnyk Research Participant Award. The unanimous decision to award Edgar came as no surprise to my family or I. You see, Edgar is my father and I can recall almost every medical research project in which he has enthusiastically participated. From the moment my father sustained his spinal cord injury he adopted an optimistic perspective, a model of livelihood which propelled him into a world of support, innovation and, most importantly, friendship. Edgar has participated in innumerable spinal cord research projects ranging in physical endurance and durationl commitment. He has worked with many doctors, scientists and researchers, all committed to the common goal of enhancing the lives of those affected with limitations in mobility. Edgar’s vibrant personality and openness to participation is the perfect conduit in developing and sustaining relationships
From L to R: Jane Burridge, Vadim Olijnyk, Edgar Jackson, Dr. Richard Stein, Dr. Vivian Mushahwar with the scientific community he now considers an integral part of his daily life. My first memory of his rehabilitation was at the University of Alberta (U of A) hospital after having a motorcycle accident which left him an incomplete quadriplegic. It was clear from the beginning that my father’s determination was going to guide us through what he considered another opportunity to strengthen our family’s love and support towards each other. His positive attitude and humour established a foundation of confidence for our family’s journey into the future. The next stop on Edgar’s road to rehabilitation was the Glenrose Rehabilitation Hospital. This is where my father found his physical and mental bearings, a place which opened an infinite horizon of potential for his rehabilitation and integration, to what I now consider his mobile life. Edgar maintained his relationships with the people who supported him during his time at U of A. He was one of the very early participants in the Department of Physical Therapy, Centre for Neuroscience, where
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he worked with doctors Jaynie Yang and Monica Gorassini on a number of projects. The outcomes of his participation vary, yet he is always satisfied to have contributed to the potential for medical progress. One such exciting project has become available to patients with a similar condition to my father’s, the WalkAide stimulator for dropfoot. A mechanism developed by Dr. Richard Stein, the WalkAide employs a tilt sensor that activates a mini computer strapped to Edgar’s leg that sends stimulation to his foot initiating dorsoflexy. In short, it allows his unmovable left leg and foot to seamlessly pass forward and, in turn, assists uninhibited walking. I have watched my father progress from a horizontal position to a limitless lateral standing. He began by willing his feet to move, an effort fueled with the desire to dance with his beautiful wife once again. This progressed to taking steps with a walker, then to two armed crutches and finally, with the assistance of the WalkAide, he took his first step without canes. This allowed my father to do something that he had been dreaming of since the birth of my sister Lindsy. In the spring of 2010, he walked my sister down the aisle! It was a moment of great pride and, I can tell you, there wasn’t a dry eye in the church. There have been many supporters along the path of my father’s rehabilitation. He has been very fortunate to work with the Canadian Paraplegic Association (Alberta), a site of great understanding always open to schedule revision and insurance that Edgar can attend his rehabilitation sessions. All of these circumstances have fueled my father’s spirited drive and offered him the potential to participate in a variety of sports including hand-cycling, wheelchair rugby, curling, fishing, hunting, rockclimbing and, his favorite sport of all, golf. With the WalkAide and a specialized golf cart, which allows him to drive right up onto the green, he has developed a whole new love for golf, boasting a 170-yard drive with one arm. My father’s efforts constantly amaze and inspire me; he is a man of infinite potential, a man not unlike that of Bohdan V. Olijnyk, the namesake of his award. Throughout his life, Bohdan exhibited a great spirit of volunteerism and community engagement. In 1994 Bohdan sustained a fall which left him paraplegic. Though his life changed, his positive attitude continued and promised a doubling of purpose, determining an ambition to adapt. He spent a total of 11 years pursuing a “never say never” motto. When he wasn’t a candidate for a program he made himself one, always encouraging his researchers. He and my father have much in common, the gift of humour, a humanistic nature, the ability to exhibit empathy and the energy to offer committed generosity. The IFESS held their annual conference in Banff, Alberta this September. SCITCS and the local organizing committee of IFESS 2012 recognized my father’s unwavering enthusiasm to participate in research that can, and will, improve the quality of life for many others. I am proud to say that they recognized my father’s spirit, a spirit that I have known my entire life. If you would like to participate in upcoming research projects, you can go to www.scialberta.ca or continue to check out the CPA (Alberta) website at www.cpa-ab.org or find us on Facebook.
BARRIER-FREE HEALTH AND MEDICAL SERVICES IN ALBERTA
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THE PROBLEM
Albertans with disabilities face barriers in accessing medical and diagnostic health services, as many doctor’s offices, diagnostic clinics, and medical equipment are not accessible. PUTTING THE PATIENT FIRST
Education and training should be provided to doctors and other healthcare professionals about people with disabilities and disability-related issues. Increased collaboration between doctors, people with disabilities, and the health care system to find solutions to accessible health and medical services for people with disabilities. The Alberta Family Care Clinics and Primary Care Networks must be accessible to Albertans with disabilities. Only accessible medical equipment should be purchased for the benefit of all Albertans. Doctor’s offices, diagnostic clinics, and medical equipment should be included in the Alberta Building Code. The College of Physicians and Surgeons Standards of Professional Behavior and Good Practice Expected of Alberta Physicians should include a duty to accommodate standard. The Government of Alberta should fund only services that are accessible to all Albertans, including people with disabilities. WHO WE ARE
The Alberta Committee of Citizens with Disabilities is a provincial organization that has worked since 1973 to promote full participation in society for Albertans with disabilities and eliminate barriers to health and medical services in Alberta. 106, 10423 178 Street NW, Edmonton, AB T5S 1R5 P. 780-488-9088 • F. 780-488-3757 Toll-Free. 1-800-387-2514 • E. accd@accd.net
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fitzone
Into the
Wild
by Amy MacKinnon
Imagine rolling into the large bustling kitchen where several different languages are being spoken, a fire is brewing in the coal stove, and the smell of delicious meals meet your nose from every corner of the room. As everyone sits down to their dinner they chat about the day’s activities, how sore their muscles are, and the beauty of our Canadian wilderness. They envy you, a citizen of Alberta who experiences this beauty so easily, just a hop skip and a jump from your home. This wonderful atmosphere of sharing and learning about other Canadians and those from abroad, in the middle of nowhere is now a reality for many people who use a wheelchair. Up until now, none of the wilderness hostels in Alberta were accessible, but thanks to a partnership between Hostelling International-Canada-Pacific Mountain Region (HI-C-PM) and the Canadian Paraplegic Association (Alberta), and funding provided, in part, by the Government of Canada’s Enabling Accessibility Fund, this experience can now be a reality. You may be thinking…”What is hostelling and why do I want to have access to this opportunity?” According to www.buckscounty.org “Hostelling is a way of traveling that gives you the opportunity to meet and get to know people from all walks of life in a friendly environment. While hotels tend to be expensive and to isolate guests, hostels offer affordable accommodations for people of all ages, and encourage interaction between cultures, age groups, and education levels.” The website also goes on to explain “Hostelling started as an idea. German schoolteacher, Richard Schirrmann, wanted to give his students fresh air and interaction with nature as a respite from the effects of living in a coal-mining town. The weekend travellers used empty school buildings for overnight accommodations; this eventually developed into a network of student “youth hostels.” Hostels exist all over the world; although the hostels with some of the most amazing scenery exist right here in Alberta, such as HI-C-PM’s Wilderness Hostels. Four wilderness hostels
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located along the Jasper Park Icefields Parkway were identified to be part of the project, and will benefit from modifications to make them more accessible. The facilities support a ‘wilderness experience’ which will be preserved, and include additions such as wheelchair accessible outhouses, ramps, and more ‘wheelchair friendly’ outdoor surfaces. The following facilities will benefit from modifications: HI Athabasca Falls, HI Beauty Creek, HI Rampart Creek and HI Mosquito Creek. CPA (Alberta) was fortunate that after some probing into the accessibility of their wilderness hostels, HI-C-PM invited us to perform accessibility audits on 6 facilities throughout the Icefields Parkway. In September of 2011, HI-C-PM Director of Partnerships Liz Ferguson, CPA (Alberta) staff Amy MacKinnon and CPA (Alberta) volunteer Margaret Conquest headed out on a 3 day adventure filled with problem solving, meeting new friends, and spotting many a bear on the highway, complete with inappropriately parked vehicles belonging to ‘amateur’ bear photographers. At the end of the 3 days everyone was tired, but excited about the possibility of opening the doors of wilderness hostelling to a new demographic. A year later, grant money has been awarded, permits approved, and work has begun! Some of the locations will be ready in the late Fall 2012, others not until the Spring of 2013, but watch for updates and information on the Adapted Adventures page of our website. I hope that everyone will consider hostelling in the Alberta wilderness as it is an affordable option that provides so much more than staying at a campground or hotel. A very big kudos goes to HI-C-PM for being open to providing more accessible options for guests. This project is just the beginning for them, so stay tuned for more updates on accessible hostels in Alberta! www.cpa-ab.org/programs_services/adapted_adventures www.hihostels.ca
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community
What is it? by Shirley Jago
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eet Maxine Tindall, coordinator with the Medicine Hat Chapter of Tetra! Maxine responded to a newspaper ad in 2001 and the rest is history. With an Occupational Therapy background, Maxine is very familiar with the challenges that people with disabilities encounter in their day to day living. Tetra is a non-profit agency that recruits skilled volunteers – engineers and technicians – to create assistive devices for people with specific needs that cannot be met by commercial items. Everything created through Tetra is unique, custom made and done by volunteers. When Maxine was asked what has kept her volunteering with Tetra year after year, she says it is the gratitude that she receives from clients who she can help. This can be something as simple as building back lost strength or as major as keeping the individual independent in their own home. “My greatest challenge”, says Maxine, “is that I may someday be presented with a project and be unable to carry it out. I always have my volunteers and the resources to rely on so hopefully this will never happen”. Maxine has celebrated many successes over the years, but one she remembers the most is a simple invention so that a client could maintain dignity and privacy while bathing. Every time this person stood to reach their shampoo and bath tools, they would fall. Maxine started brainstorming with the client and devised a pull curtain made from a sheet that had pockets and grommets added to it so it became a movable unit using the shower rod as the track. Once the client sat down in the tub, they were able to reach the curtain and pull their supplies towards them for easy access. Keeping volunteers can be difficult and Maxine says that Tetra is no different. Because these are client driven projects, volunteers are not required on a weekly or monthly basis, but she says this does work for some schedules. Her handyman, Mr. McFarland is her “go to” man and he enjoys the challenges on a casual basis. Tetra is celebrating its 25th year in 2012 and has grown to 45 chapters in North America. Most of these are Canadian and we are fortunate to have 5 Chapters across Alberta located in
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Maxine Tindall and her granddaughter work on a Tetra project. Edmonton, Calgary, Red Deer, Lethbridge, and Medicine Hat. Tetra volunteers work with people with a wide range of medical conditions, ages, needs and interests. They also work closely with health professionals and caregivers, many of whom request Tetra’s assistance on behalf of their clients. Similarly, Tetra works hand-in-hand with family members, who can also submit requests for assistance. Tetra’s focus is on quality of life - anything that overcomes a barrier or otherwise enhances an individual’s ability to participate in all aspects of life, including work, family, community affairs and recreation. Tetra volunteers do not copy existing, commercially available devices (although these can often be tweaked to fit someone’s particular need) and are unlikely to install ramps. Tetra Chapters have occasionally installed ramps but these are exceptions to the rule, which is: If a carpenter or construction contractor can do it, then it’s not a good use of Tetra’s technical volunteers. A common misconception is that Tetra can help fund the purchase of commercial assistive equipment – this is not the case. Tetra’s website (www.tetrasociety.org) has an entire database of devices that have been made over the years; these are in 9 categories covering all aspects of a person’s life. It is amazing to see how simple adaptations can make a world of difference to a person’s life. Within each of these categories is a title list; once a title is selected, you will see a brief description of the challenge, the solution, some local chapter information and, most importantly, a picture of the solution. Maxine has many devices showcased in this catalogue. When asked which is her favorite, she says ‘It isn’t there yet!’ Her favorite challenge is the next one! If you have some talent and like a challenge, Tetra may provide a great volunteer opportunity for you. If you live in the one of the five Alberta communities that host a Tetra Chapter, feel free to contact them to join their team. If not, consider starting your own chapter the way Maxine did in 2001! It is a great way to help people, have fun and give back to your community.
community
HERE’S AN OPPORTUNITY YOU CAN’T PASS UP by Tom Parks
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aven’t we all had something we wished we could do, or at least do more easily? Nine years ago I suffered a cervical spinal cord injury resulting in paralysis from the nipple line down, leaving me with limited use of my arms and legs and all the other issues that go along with being diagnosed as an incomplete quadriplegic. Since then, like many other members of the spinal cord injury community, I’ve been working towards achieving a lifestyle that resembles the one I had before. Fortunately, I’ve regained the ability to stand, but cannot walk without assistance. Amazingly, I can move my legs in a cycling motion. After spending two years of rehabilitation in a disability program, I had built up enough endurance in my legs to feel confident that I could propel a modified recumbent Trike. This was a great breakthrough toward gaining more independence. One problem! How would I keep my feet on the pedals? After discussing the problem with knowledgeable friends and bicycle technicians, it appeared there was no simple solution to this problem. A system had to be devised that not only kept my feet on the pedals, but was easy enough to put on without requiring a muscle bound assistant. During discussion over coffee one day, someone suggested that I approach the Tetra Society, a group of volunteers with expertise in a variety of backgrounds who give their time and expertise to devise non-commercially available assistive devices for people with disabilities. I contacted them on their website http://www.tetrasociety.org/about/index.php and filled out the Request for Assistance Form identifying my problem. About a month later I received a call saying Tetra had reviewed my submission, and that a fellow named Ron would contact me and come out for an initial assessment. Shortly thereafter, Ron called. He told me he was a retired machinist with limited experience with bicycles. He listened intently as I described the problem and ideally what I thought the finished product should be able to accomplish. He even listened to all the possible solutions that I had come up with and
the reasons why they would not be feasible. We chatted a little, and then Ron said he would e-mail me with his ideas and a time when we could get together. I didn’t quite know what to make of our first meeting, as I had doubts about someone with limited cycling experience being the right guy to solve my problem. A couple of days later I received my first e-mail. I quickly responded as to why the proposal wouldn’t work. He e-mailed me back with a modification, complete with diagrams of top and side view. I studied what he had sent me and thought it was too simple to work. Ron patiently said he could build a crude prototype so that I could better understand what he was talking about. A few days later, Ron arrived with some pieces of metal in his hand. As he was attaching them to the pedals, we swapped stories and got to know each other a little better. Well, before you know it, I was slipping my feet into the prototype pedals, Ron was swinging the wire loops snugly behind my heels, securing my shoes to the pedals, and I was set. Astonished, I said “Why didn’t I think of that?”, to which Ron replied by just looking up at me and smiling. Since then I have called upon Tetra to help me find ways to overcome other challenges. Each time, they have managed to present me with unique products that I have used to gain even more independence. My involvement with Tetra has gone beyond solving physical problems. The new relationships that have resulted from working through the problem-solving process together are invaluable. This is truly a special group of individuals who use their skills and creativity to find ways to make big differences in the lives of individuals with disabilities. I’m the one smiling now! If this isn’t convincing enough, just go to the main Tetra Society website at www.tetrasociety.org/about/index.php. The site will give you the contact information for the Tetra Chapter nearest you, a complete list of previous projects, the Project Information Form, and Testimonials. You can even check out my pedals on the Calgary link for Previous Calgary Chapter Projects (www.tetrasociety.org/devices/details.php?id=480&cat_id=). Good Luck! Spinal Columns
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accessibility
SIGNS
I often see signs that confuse me. The below copper plated sign with a black wheelchair symbol with a slash through it is embedded in the ground walking surface. However, I do not know what this ground sign is even trying to communicate.
THAT THINGS ARE NOT RIGHT by Ron Wickman
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row ing up with a father in a wheelchair, I would often experience the built environment in an uncommon way. We often relied on signage to help us in our wayfinding, and hopefully shorten our journey. The below blue sign complete with a wheelchair symbol and the words “Please Contact Host for Accessibility” all in white was the type of sign that had more significance to us. When I was a young shy boy, I would often have to go find the “host” to help my father get into a restaurant or other space. I found this very intimidating.
In my travels around the world, I have made observations and documented accessibility features and signage that have been added to buildings that were not originally designed to be accessible. This dark brown wood sign complete with a wheelchair symbol, and the words “Press Button for Assistance” all in white also provides the phrase in Braille. I would like to see the day when signs like this are not required.
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I photographed the below brick colored paver sign with a cream colored wheelchair symbol embedded in a brick paver walking surface in a European city I recently visited. It is another confusing ground sign.
I do appreciate a directional sign pointing the way to a ramp, when the ramp might be difficult to locate. However, I have never understood the logic of a sign on a ramp. The following blue sign complete with a wheelchair symbol and the words “Accessible Ramp” is mounted on a guardrail near the top of the ramp. Is this sign really needed, and would a sign ever say inaccessible ramp?
Thank You 6
To our sponsors, golfers & supporters
Thank you to our provincial sponsors who helped fund golf tournaments in both Edmonton and Red Deer
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EDMONTON AUGUST 18, 2012 - GLENDALE GOLF AND COUNTRY CLUB
Golf Classic in support of the Canadian Paraplegic Association (Alberta)
RED DEER AUGUST 10, 2012 - ALBERTA SPRINGS GOLF RESORT
And a very special thank you to volunteers and staff who helped us to hold two wonderful golf experiences. Spinal Columns
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what’s new in
Alberta
CALGARY
Congratulations Kasey Kasey Holberton, Client Services Coordinator with CPA (Alberta) was named CTV Calgary Athlete of the Week “for her tenacity and fearless focus”. Hand cycling has become Kasey’s focus and passion. She hopes to make the national team and then qualify for the summer Paralympics. Read more at calgary.ctvnews.ca/athlete-strives-for-success-1.956861#ixzz26koDniyM. Generous Donation Tickets to the Garth Brooks Concert sold out in the blink of an eye! Thanks to a generous donation however, we received tickets to both the Calgary Stampede and Garth Brooks. Tickets were provided by the family of David Stables who passed away recently. David had a positive outlook on life, great ideas and always came out to peer events. He will be sadly missed. The concert tickets went to Bill Tillier who replied after the concert “I wanted to take a moment to thank you for the wonderful tickets to the concert. You know, I must say this was quite an experience, the loudest crowd I have ever heard! I very much enjoyed it and wanted to let you know.” The rodeo tickets were given to a very appreciative rodeo fan who was a patient on Unit 58 at the Foothills Hospital. A big thank you to the Stables family for their generous donation. Peer Events
Calgary’s Restaurant Club. In August, we started a north and south Restaurant Club. Each month, two restaurants are chosen and peers come out to enjoy a meal as well as assess the overall experience. This is a great opportunity to socialize, share ideas, and enjoy some great food. A portion of the meal cost is subsidized through sponsorship from Pipella Law. Monthly locations are posted on the Calgary Peer Program web site at www.cpa-ab.org/programs_ services/peer_program/peer_community/calgary.
EDMONTON Re-Walk On October 2, 2012, members of the Edmonton staff team attended a presentation of the Re-Walk, an overview of the medical consequences of spinal cord injury and preliminary findings from an Exoskeletal-Assisted Walking Program. Canadian Quadraplegic Association In a recent media release CPA (Alberta) clarified that it is in no way associated with an organization called the “Canadian Quadraplegic Association”. Although both organizations have similar names, the similarities end there. The Canadian Quadraplegic Association had lost its charitable status for various reasons, including not maintaining any books or records to support its financial and charitable activities and not providing receipts. For more information regarding the release you can go to our website home page at www.cpa-ab.org. Edmonton Peer Program
Murder Mystery Night It was Saturday, August 11, 2012 on the rooftop patio at the Carewest Dr Vernon Fanning Centre. A murder was committed! Well, not quite…but as guests arrived, actors from Out Of Our Heads Productions interacted with everyone and acted out a murder mystery. As participants tried to figure out “who done it”, they also enjoyed the beautiful sunny day along with burgers, chips and, to top it off, a 10 foot banana split for everyone to enjoy. Thank you to our volunteers and to sponsors, Canwest Elevator & Lifts and Motion Specialities. As many individuals said, “It was one of the best peer events I have ever attended.”
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Edmonton peer BBQ. This last year has been an exciting one for the Edmonton peer program. Not only have we started to grow in numbers but we have formed new focus groups. Classic Health Supplies sponsored our peer program for the first time this year which enabled us to form three new peer groups: Wise Wheelers (over 40), Young Guns (under 40), and Heels on Wheels (ladies group). These groups held various events throughout the year, ie. BBQ’s, Blues club night, football event, poker night, accessible
r egions golf, an evening dinner, and two Sobeys fundraisers. With money raised from the fundraisers, these groups purchased four season seats to the Oil Kings. The Peer Program is still running other events, such as bowling nights, annual BBQ, tax night, and much more. A 2013 calendar of events will be posted on our website in the new year. If you would like to find out more about the Edmonton Peer Program or if you would like to join any of the three groups mentioned above, please contact Brian McPherson at brian.mcpherson@cpa-ab.org or 780-424-6312 ext. 2241.
GRANDE PRAIRIE Volunteer Recognition Bernadette Pizzey was recognized in the Daily Herald Tribune for her volunteer work with CPA (Alberta) in Grande Prairie. Her volunteer assistance includes tasks such as setting up a volunteer workstation; a laptop with information links, community events calendar and communications for various volunteers. Thank you Bernadette for your many hours of assistance! First Annual Wheel-A-Thon in Mackenzie Region by Lisa Neufeld (re-printed with permission, Northern Pioneer) The first annual Wheel-A-Thon took place in La Crete on August 25, 2012 with four people travelling in wheelchairs and eight riders on bikes. Participants started their journey from Long Term Care in La Crete and travelled to St. Theresa Hospital in Fort Vermilion. Russell Christian, Thomas Peecheemow, Patrick Bulldog and Greg Bulldog made the entire journey in wheelchairs while George Wiebe, Tracey Thiessen, Rory Stafford, Lionel Gendreau, Twyla Molserry, Peter Dyck, Tina Jourdikian and Carson Christian travelled on their bikes. After a breakfast of pancakes and bacon served at Long Term Care before the journey, participants were on their way just before 10:00 a.m. and arrived at St. Theresa General Hospital at 3:15 p.m. Arrival at the finish line was about an hour and fifteen minutes earlier than event organizers anticipated. After the trip, supper was provided by Copper Cookery in Fort Vermilion. The breakfast raised a total of $626.25, however, with additional donations, the event raised a total of $1000 with more donations still coming in after the event. According to event organizer, Suzanne Braun Hanser, the event turned out great. “The guys did awesome with the trek out there. The traffic was great too. Once people saw what we were doing, they slowed down and waved, and honked at us. It was very nice.” said Braun. “After the guys realized how close they were to the finish line, they didn’t even want to stop for refreshments. They just wanted to keep going.” The idea of doing a Wheel-A-Thon came from one of the participants and resident at Long Term Care, Greg Bulldog. But as the day of the event came close, Bulldog started getting cold feet but in the end he participated and, according to Braun, Bulldog really enjoyed the trek. Having no extra battery for his wheelchair, Bulldog was unable to finish the last part of the journey. According to Suzanne Braun, they have some new ideas for future events. Braun is hopeful that next year’s Wheel-A-Thon will be even better. All four wheelchair participants received a trophy at the finish line to honour their hard work and effort. Money raised at the event will be used to purchase a handi-
van for Long Term Care. The event was also to help raise awareness about the difficulties faced by individuals who use wheelchairs, including wheelchair access to local businesses, as some businesses in the area are not wheelchair accessible. Mieke de Groot, Client Services Coordinator with the Canadian Paraplegic Association (Alberta), (CPA) also attended the event. Founded in 1961, CPA has been a leader in offering support, direct service, information and advocacy to Albertans with spinal cord injuries and other physical disabilities. Their mission is to assist people with spinal cord injuries and other physical disabilities to achieve independence, self-reliance and full community participation. Russell Christian, Greg Bulldog and Patrick Bulldog, clients at the Long Term Care in La Crete are also paraplegic and the CPA (Alberta) is there to help them achieve a better way of living.
WEST CENTRAL ALBERTA Discovering the Power in Me Workshop
The Discovering the Power in Me workshop at the Community College. With assistance from CPA (Alberta) and with funding from a FCSS grant, the Drayton Valley Learning Council organized a Discovering the Power in Me workshop at the Community College in Drayton Valley on October 25 and 26, 2012. Ten people attended the course which provides knowledge and skills that enable them to achieve a greater potential in their lives. Participants are taught techniques of utilizing their thought processes in a positive manner to achieve positive results in their lives, careers and relationships. New TrailRider West Central (CPA) Alberta and the Central Alberta Push to Open Chapter have now raised enough money to buy their very own TrailRider! More details to follow, but please start planning how and when and where you want to go! For information on this adaptive equipment, you can go to Google or YouTube and search for TrailRider.
PROVINCIAL Staff Retreat
CPA (Alberta) staff members attend professional development retreat- Sept. 11-13, 2012 at Camp He Ho Ha. Spinal Columns
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travel
Danny’s Northern Adventure by Ross W. Wein
Danny Wein and brother-in-law David Argument with a prize Chinook Salmon from the remote west coast of Haida Gwaii. Everyone Needs Nature.
T
he crewmember of BC Ferries apologized profusely in explaining that the elevator “stopped working last night” and with a smile suggested that “this is part of the northern adventure”. It took us a minute to realize that our British Columbia Ferry was named the M/V Northern Adventure. Danny, his mother Eleanor and I had been visiting family members on Haida Gwaii (formerly Queen Charlotte Islands) for a week of salmon fishing, crab trapping, and learning about Haida culture and the Gwaii Haanas National Park Reserve. Now we were on the way home as we boarded the ferry at Skidegate with our wheelchair-accessible van and a small utility trailer, which carried our necessary equipment. We were prepared for the limited accessible features of this ship (built in 2004 for 40 crewmembers and 560 passengers) because we had traveled to Haida Gwaii 10 days earlier. We knew that the ferry had one elevator, 2 accessible rooms, two accessible public washrooms, and collapsible wheelchairs. On the last crossing, the main engine stopped and a crewmember announced that we were “dead in the water because of a clogged fuel filter”. I thought the words “dead in the water” was a poor choice but the sea was calm and passengers took this delay in stride. Soon we were on our way again. Was this delay an omen for our return trip? Now, we were told that the alternative to the inoperable elevator was a stair-lift that would carry our son and his power wheelchair from the vehicle deck. Danny drove on to the stairlift platform and nothing happened. An engineer was called and many offered advice to no avail. Several crewmen suggested that
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they could simply carry Danny in his chair up the three flights of stairs. They reconsidered when I mentioned that Danny’s chair weighed about 200 pounds and Danny weighed about 170 pounds. After discussing the issue with Danny, he walked up the two flights of stairs with my help to a folding chair on Deck 5. Then a rubber tracked chair-carrier, operated smoothly by a crewmember, was used to transport Danny up another flight of stairs. That left the power chair, so I pulled the batteries and three crewmen with a good deal of joking carried the chair. I had help following with the batteries! At this point Danny had his power chair on Deck 6 and he spent much of the seven hour trip across Hecate Strait on the aft deck visiting people and watching for whales. The cafeteria is located on this deck and we were issued much-appreciated lunch vouchers for the “inconvenience”. As we approached Prince Rupert, the crew asked us to wait until other passengers and vehicles left the ship so they could assist us more easily. Danny’s transfer to Deck 5 began with the tracked wheelchair carrier and then four crewmen carried Danny in a folding chair down the two flights of stairs to the vehicle deck. Four other men carried Danny’s power chair and then the batteries. All of this was done with much banter and back slapping by the men. Danny received hugs from the women. Eleanor was handed snacks and drinks to send us on our way. As for many past travel experiences, I was impressed that so many generous people stepped forward to assist with such good will and humour. I asked the crewmembers if the special services provided to our family were included in their contracts and only received grins that I interpreted as “no comment”. Several employees said this was a new experience for them because the
travel accessible equipment normally worked properly. I am certain that our family experiences during travels has been similar to others with universal access needs when booking accommodation, using transportation, and visiting cultural and recreation facilities. Would we recommend that persons with a disability travel on limited accessible ferries and other boats? Of course we would! On this trip we also lifted Danny into a 20 foot fishing boat so that he could experience salmon and crabbing on the ocean. Who would want to miss this experience to a remote part of Canada? Certainly not Danny! Traveling experiences are fun, informative, and a great way to meet interesting people. Children are especially interested in learning about wheelchairs and persons with a disability; the parents often follow their lead. When something unexpected occurs, the experience is enhanced. Our family encourages travelers with universal design needs to make suggestions in writing after their trips to the employees, managers, and owners of the facilities and services. It takes time to reach those who will make changes. Often a letter will provide an effective stimulus because they may already know what is needed. We have written BC Ferries to compliment crew members on the special support given to our family and to make the usual economic arguments with the philosophy “if you build it, they will come�. We hope that pressure from the disability community will lead to improvements in accessibility and safety of ferries in Canada and elsewhere to effectively attract persons with a disability to travel more.
Do you trip, catch, or drag your toes?
Ross W. Wein is the president of the Alberta Abilities Lodges Society.
780-452-5771 www.khager.com
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travel
BIRTHDAY ROAD TRIP Re-print from June 2012 Carewest magazine
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ark Naylen has been living in Calgary for over 10 years but hasn’t always resided in the city. Mark lived in Ghost Lake with his mom for many years and he would go to Banff almost every week. When Mark’s mom passed away in 1999, he eventually moved into long-term care in Calgary. Mark expressed an interest in visiting Banff for his birthday to Karol Gouschuk, a representative for the Canadian Paraplegic Association (Alberta)(CPA), at an annual review of the Community Access for Persons in Continuing Care (CAPCC) program. The CAPCC program is a government-funded initiative that helps people under the age of 65 living in long-term care to connect with their community. It was Mark’s comment to Karol that set the wheels in motion. Karol began to look into how the CAPCC could make the trip possible and got in touch with Garrison Green Recreation Therapist, Charlotte Thompson to make Mark’s birthday wish come true. Charlotte and Karol worked together to make sure that Mark would be able to enjoy his birthday in the town where he used to spend a lot of time. “It was an honour to be a part of making this dream happen for Mark,” says Karol. On Mark’s 52nd birthday, Monday April 2, he went to Banff for the first time in over 10 years. “It was the perfect day,” says Mark. “It was a nice, clear, blue sky kind of day.” “We went strolling, did a bit of shopping and had lunch at Earls,” says Mark. “Kelly Ripa from LIVE! was in Banff that day, so the town was buzzing.” Mark says there were posters advertising her visit on every lamppost and street corner.
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Carewest Garrison Green resident, Mark Naylen (centre). However, it wasn’t the busy hustle and bustle of Banff that made Mark’s birthday so special. It was the beauty of his surroundings that brought back many happy memories. “During the drive out, I could see all of the countryside and the mountains,” he says. “I caught a glimpse of a doe and her fawn.” Mark, Tracy and their driver went for an unexpected adventure when they got lost in Canmore. “I thought we might have been lost, but knew for sure when the road changed from pavement to dirt and gravel,” he says. They made it back on route without much difficulty and all had a laugh. The last stop on Mark’s birthday trip was to the Canmore Nordic Centre Provincial Park where he used to spend time with his friends. “I have a lot of good memories of being there,” he says. It’s tough to fit Banff into one day and Mark hopes he can visit again sometime soon and go to the hot springs. Karol Gouschuk is a Community Access Coordinator with CPA (Alberta).
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