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! Outspoken WINTER 2016_! Outspoken Winter 2009 2016-02-04 10:27 AM Page 1

Outspoken! sciontario.org

Winter 2016

Advocate for children with SCI ACHIEVES MILESTONE GOAL SHARED STORIES OF HONOUR DENNIS HERNANDEZGALEANO – Accessibility Advocate Awarded Top Honours by Province Junior Board Offering Up a LAUGHTER-FILLED EVENING Join Us for the 16th Annual SKI & SNOWBOARD DAY

REMEMBERING

Kim

SPINAL CORD INJURY ONTARIO CHAMPIONS EXCELLENCE IN SERVICE, ADVOCACY AND QUALITY OF LIFE FOR PEOPLE WITH SPINAL CORD INJURIES


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critical steps supporting our clients step by step Since 1962, we have helped our clients to move forward with dignity, respect and trusted expertise. We value a full-circle approach that puts our clients ďŹ rst; caring for our clients through accident, rehabilitaon, and toward recovery. We believe in advocacy, in all of its forms, that makes our clients and their families feel at home, protected and conďŹ dent in the work we do for them. AWA R D S O F D I S T I N C T I O N Best Lawyers Internaonal . Disability HALL OF FAME 2015 . King Clancy Humanitarian Award LEXPERT Zenith Award . LEXPERT Ranked Leading Lawyers . Law Society of Upper Canada, Specialists in Civil Ligaon Marndale-Hubbard Preeminent Lawyers, Highest Legal Abilies & Ethical Standards

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28 Our Vision: Spinal Cord Injury Ontario champions excellence in service, advocacy and quality of life for people with spinal cord injuries. EDITOR, ADVERTISING, SALES Bev Jenkins bev.jenkins@sciontario.org CREATIVE DIRECTION/DESIGN gbc-design.com gbc@gbc-design.com CONTRIBUTIONS Chris Bourne, Mary Dufton, Spero Ginis, Dennis HernandezGaleano, Stuart Howe, Mary Ann Hug, Jeffrey Kerr, Jacqui Kinahan, Sarah McKinnon, Ben McColl, Lynn Miñeque, Angela Morton, Marie-Josée Perrier, Paul Robinson, Joanne Smith, Albert Stein, Diane TalbotSchoenhoff, Dan Thompson, Bria Weaver, Elizabeth Woudsma, Nancy Xia

Subscription to Outspoken! is a benefit of Spinal Cord Injury Ontario membership. To join, please call Membership Services at 1-877-4221112 x230 or email membershipservices@SCIOntario.org. For editorial enquiries, to submit a story, or for information about advertising in Outspoken!, email Bev Jenkins at bev.jenkins@sciontario.org Outspoken! is produced through the generation of advertising revenue. The opinions expressed in Outspoken! are those of their authors and do not necessarily represent the views of Spinal Cord Injury Ontario. Products and services advertised or described in Outspoken! are not tested or endorsed by Spinal Cord Injury Ontario.

31 18 10 – cover story Kim Demberline will be missed greatly by our organization as well as the city of Barrie, in which she played a role in helping make that city more accessible, and a model of excellence for others to follow.

FEATURES

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Remembering Kim Active Together A Lioness in Lamb’s Clothing It Is Not Always Sciatica There Is No “I” In You, But There Is an “I” and a “Me” In My Life. Advocate for Children with SCI Achieves Milestone Goal Lyndhurst Lodge – The Early Years Surgeons Reroute Nerves to Restore Hand Function For People Who Have Quadriplegia OGO

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Dennis Hernandez-Galeano – Accessibility Advocate Awarded Top Honours by Province Resources to Help You and Your Peers Stay Healthy and Active in 2016 In Honour of Jesse Redden Canadian Disability Hall of Fame Award Roll On In – Barrier Free Entrance Solutions Surgeon Who Became Paralyzed Learns to Operate Again BMI

what’s on!

•4

• 14 Join Us for the 16th Annual Ski & Snowboard Day • 15 Junior Board Offering Up a Laughter-Filled Evening

your health •6

Protect Your Precious Hands

peer support

community events

•7 •8 •9

• 36 How to Get the Word Out About Your Community Event • 45 Best Birthday Present Ever!

Peer Connections Open Session Volunteer Appreciation Dinner Healthcare Professional Extraordinaire 2015 Peer Support Events

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my view Stuart Howe

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Shared Stories of Honour

DEPARTMENTS

•9 For more information, visit us online:

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Guide to Advertisers

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45

sciontario.org

Spinal Cord Injury Ontario

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my view

Stuart Howe Commenting on his first 100 days as the new CEO of Spinal Cord Injury Ontario. Often, after a period of time, a new CEO will develop a “Big Idea” that guides the direction of where he/she wants the organization to go in the future. Have you developed a “Big Idea” for Spinal Cord Injury Ontario?

Q

A

So you have been here since October, what have you been doing leading up to taking over the organization on January 1, 2016?

Q A

Listening and learning! Although I have a healthcare/business background from my 16 years at SickKids, I am new to the field of spinal cord injury. I have used the time I have overlapped with Bill Adair, past CEO, to immerse myself in my new community. I have had the opportunity to spend a great deal of time learning about the operations of the organization while meeting many of our staff, at the provincial office and many of our regional offices. I have also been fortunate to be able to connect with a number of our clients and many of our funders and other stakeholders. Of course, I have also spent a great deal of time with Bill. He has been an invaluable source of knowledge on the history, politics, successes and lessons learned from his 22 years, as well as introducing me to his vast network of colleagues in what is admittedly a very complex arena.

Q A

How does your past experience prepare you for this job?

As I mentioned, prior to joining Spinal Cord Injury Ontario I spent 16 years in various business and operations roles at SickKids and then 18 months consulting for healthcare organizations on business innovation strategies. I have led large groups of staff and managed multi-million dollar budgets in the fiscally restrained healthcare sector. During my career, I have had the privilege of leading teams and organizations through visioning, planning and implementing transition and change – always focussed on improving operations and improving the experience and outcomes for clients. I have also faced the challenges of leading teams and organizations through difficult periods, so I have had the opportunity to learn what not to do and how to plan for the unforeseen.

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• Outspoken! • Winter 2016

When I was interviewing for this role I described to the Board of Directors my vision that Spinal Cord Injury Ontario would be the global leader in promoting the prevention of, reclaiming independence after, and pursuing a cure for, spinal cord injury. I have seen nothing thus far that makes me feel that we cannot achieve that ambitious goal. In February, we are embarking on a strategic planning process during which we will engage our board members, our staff, our clients and members, our donors, our sponsors and many, many other stakeholders as we define where we want Spinal Cord Injury Ontario to go in the future. I will make my case for my vision, but as CEO it is not my role to dictate the future direction, it is my role to ensure that our organization achieves the goals determined by our community.

What do you like about Spinal Cord Injury Ontario so far?

Q A

Without doubt, the number one thing I like is the passion for our mission. It is inspiring to work with, and for, a community that is universally passionate about achieving our goals and supporting people with spinal cord injuries and other physical disabilities. There are lots of other things to like: we have a strong reputation and very close relationship with our primary funder, the

Toronto Central LHIN; we are very well placed to be a leader in enabling the transition to a more client-focussed, communityfocussed health model – we already do it!; we are positioned to build on our recognized leadership in advocating for our clients and the wider disability community; and I could go on…

Is the job what you expected? Have there been any surprises?

Q A

The job is exactly as I expected; fast paced, challenging, inspiring and fun. The only real surprise is the smoothness of the transition with Bill – leadership change is a challenge for any organization, but Bill and the leadership team had clearly worked hard to ensure that the staff and our stakeholders were prepared and open to working with a new face – kudos and thanks to them for their forethought.

What do you like to do when you are not being a CEO?

Q A

Chilling with my family reading to my 5 month old son; playing trucks with my 3 year old son; and trying to understand my 13 year old daughter as I drive her around the city via bank machines! My favourite way to relax is to cook dinner for my wife as we sample red wines from around the world.

Stuart Howe Chief Executive Officer Spinal Cord Injury Ontario


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Thomson, Rogers Lawyers

PROTECT

With a longstanding record of successes, combined with a genuinely caring attitude, the personal injury team at Thomson, Rogers will always make sure that you and your loved ones are protected. Call us today for a free consultation and a copy of our Personal Injury Information Kit.

TF: 1.888.223.0448 T: 416.868.3100 www.thomsonrogers.com


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your health By Joanne Smith

Protect Your Precious Hands Every winter our hands take a beating. It only takes a of couple weeks of exposure to chilly temperatures and wheeling through salty, sandy slush for our hands and nails to become dry, cracked and brittle.

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ometimes even the warmest, water-proof gloves/mittens and deeply intensifying moisturizers aren’t enough to protect our precious appendages from the harsh elements. To help keep your skin and nails strong from the inside make sure to include plenty of the following nutrients in your diet this season. Omega 3 fatty acids help skin maintain moisture (salmon, sardines, halibut and walnuts). Vitamin C acts as a building block for collagen (broccoli, green/red peppers and berries). Folate is a water-soluble B vitamin that is vital for cell growth (spinach, romaine lettuce and lentils). Biotin is another water-soluble B vitamin that helps support healthy skin and nails (almonds, sweet potato, eggs and oats). Protein is necessary to make collagen and your nails are composed of laminated layers of a protein called keratin (fish, chicken, beef and nuts and legumes). Serve this recipe with chicken, salmon or steak and you’ll be pushing your way through those snow banks with a little more protection and ease this winter.

fruitful elements Specializing in optimal nutritional health for people with disabilities.

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• Outspoken! • Winter 2016

Loaded Sweet Potato 2 large sweet potatoes 2 tbsps. olive oil 1 clove garlic, minced 2 cups fresh spinach 1.5 tbsps. butter or coconut oil ⅓ cup chopped walnuts 3 tbsps. dried cranberries salt & pepper (to taste) 1. Preheat the oven to 400 degrees. 2. Bake the sweet potatoes for one hour or until soft all the way through. 3. When the sweet potatoes have about 15 minutes left to go, you can start to sauté the spinach. Add the olive oil and the minced garlic to a medium skillet. Saute over medium heat for 1-2 minutes, or just until the garlic becomes fragrant and slightly soft. Add the spinach. Season lightly with salt and pepper. Continue to saute until the spinach is wilted (2-3 minutes). 3. When the potatoes come out of the oven, carefully slice them open from end to end. Use a fork to lightly mash the insides. Add about a ½ tablespoon of butter or coconut oil to the inside of each potato and then season lightly with salt and pepper. Divide the spinach between the three potatoes. Top with one tablespoon of dried cranberries and chopped walnuts per potato. ●


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peer support

Peer Connections Open Session By Angela Morton, Regional Client Services Assistant

On Thursday, November 26, we held an Open Session for our monthly Peer Connections. With more than 30 people in attendance we had some great questions for our Open Session panel. PROUD TO SUPPORT THE PEER SUPPORT PROGRAM, HAMILTON REGION

PROUD TO SUPPORT THE PEER SUPPORT PROGRAM, CENTRAL ONTARIO REGION

PROUD TO SUPPORT THE PEER SUPPORT PROGRAM, KINGSTON REGION

PROUD TO SUPPORT THE PEER SUPPORT PROGRAM, LONDON REGION

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he open session was hosted by Ron Rattie, Peer Support Coordinator. The panel included Deborah Cox from the Rehabilitation Seating Clinic, Lorraine Brown from the Resource Centre, Ann Hammer, Registered Nurse from the Out-patient Clinic, and Dianne Schaible, Registered Physiotherapist in the Out-Patient Gym, as well as Peer Volunteers Max Meijer, Gary Luker, Sandy and Bob Stephens. Deborah talked about equipment and getting it in proper working order, and making sure that you come in to check/adjust your equipment when your situation changes. This is important, so that the required adjustments needed to be made to your equipment can be made to accommodate your changes. Lorraine spoke to the group about the resources offered at the resource centre, and about how to access groups outside of the rehabilitation centre. She also spoke about finding ways to go back to doing the things you love to do. Ann discussed making sure that you continue activities with a range of motion and keeping yourself fit. Dianne covered topics on life after physio, keeping up with physical activity and being active after you finish your out- patient physio. The peers also shared their stories with the group. Sandy and Bob talked about how it is just about living every day and life goes on. Sandy talked about how she does spend time alone and needs that time alone. Max, who relies on using a wheelchair and a cane talked about how some days it can be hard but you get through it with the supports you have in place. Gary had a question from the group about recovery. He told the group that recovery isn’t just about regaining function, but getting stronger and being able to live with what you have; recognizing your strengths and using them. The group was reminded that, “walking may not be the be all to end all,” by Ron. The honesty of the panel was amazing and it was important for the group to hear from others and share their experiences. Life goes on. You have to make the best of what you have. ●

Spinal Cord Injury Ontario

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Volunteer Appreciation Dinner By Jacqui Kinahan

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Does London and Area volunteer? Yes indeed they do! And they are really appreciated. 5

1. Aida Diodos and Delores Weaver, spouse and sister of Perry Meunier. 2. Nigel Gilby, Lerners Law Firm. 3. Carol & Mark McClean. 4. Mike Mulligan receiving his award. 5. Mike Mulligan, Lisa Bradshaw, Joan Wesenger and Donna Jarvis.

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• Outspoken! • Winter 2016

n November 9, 2015, the staff of Spinal Cord Injury Ontario, in London, and its many volunteers were brought together by the generous people at Lerners LLP Law firm for an evening of fine dining and recognition. The Sunningdale Golf and Country Club provided a lovely, accessible setting and a delicious repast. One of the many positives of an event like this is the opportunity to get to know and exchange information with other members of the spinal cord injury community, with both staff and volunteers. Nigel Gilby, a partner at Lerners Law Firm, spoke to the group about his background, both personal and in his law career, and why sponsoring Spinal Cord Injury Ontario peer related events reflects his desire to give back to the community. Meredith Burley of Spinal Cord Injury Ontario gave an overview of the Peer Support Program in the province, including the fact that nine of the ten support programs have a community of volunteers

who are trained and available to work one-on-one with newly injured individuals. Penny Watson, Peer Support Coordinator for London and area also spoke about the Peer Support Program, and how it not only reaches out to newly injured people but that getting to know the different Peer Volunteers has expanded her world. Special recognition was given to recently deceased volunteer Perry Meunier. Penny introduced each Peer Volunteer who attended the event on the evening and highlighted some of their background, and attributes that they had contributed to the program while handing out certificates of appreciation. At the end of the evening Diamondz Designated Drivers, sponsored by Lerners Law Firm, were available to give anyone a ride home if they had partaken in the festive beverages. Thank you to our sponsors, and everyone who came out on the evening. ●


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Bryce Donald, Regional Services Coordinator, Emily McDonald and Elizabeth Woudsma, Peer Support Coordinator.

Healthcare Professional Extraordinaire

2015

By Elizabeth Woudsma, Peer Support Coordinator

Spinal Cord Injury Ontario’s Peer Support Program was proud to present the Healthcare Professional Extraordinaire award, on Dec. 14, 2015, to Emily McDonald, MSW, RSW, Social Worker at Providence Care’s St. Mary’s of the Lake Hospital, South East LHIN. Congratulations Emily!

PEER SUPPORT E V E N T S Drop in to share ideas, discuss issues and spend time with your peers!

Disability Tax Credit & RDSP Thursday, February 25, 2016

A Conversation on Life Before & After a Spinal Cord Injury Wednesday, February 17, 2016 Time: Noon to 1:00 p.m. Location: Parkwood Institute, Main Building, Room A4East, 186, 550 Wellington Road, London, ON RSVP by February 15. For more information: Penny Watson, 519-433-2331 Ext. 224, penny.watson@sciontario.org. **Lunch will be provided**

Time: 6:30 p.m.to 8:00 p.m. Location: 520 Sutherland Drive, Toronto, ON For more information: Charlie Warriner, 416-422-5644 Ext. 242, charlie.warriner@sciontario.org.

Comedy Night! Thursday, March 31, 2016 Time: 6:30 p.m. to 8:00 p.m. Location: 520 Sutherland Drive, Toronto, ON For more information: Charlie Warriner, 416-422-5644 Ext. 242,

charlie.warriner@sciontario.org.

Spinal Cord Injury Ontario

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feature

K

REMEMBERING

Kim

Deborah Kim Demberline (Minnie) passed away peacefully with her family by her side on January 1, 2016, in Barrie, at the age of 58, after an unexpected month long battle of pancreatic and liver cancer. Kim is survived by her father Red Demberline, sister Sue (Fred) Fennell, and the loves of her life, her niece and nephew Jarrett and Jasmin Fennell of Barrie. 10

• Outspoken! • Winter 2016

im was born on July 19, 1957. She sustained a spinal cord injury in 1997, which led her to her beloved job at Spinal Cord Injury Ontario, to which she contributed for 15 years in numerous roles. Heather Hollingshead, Regional Services Coordinator said, “Kim began her work at our organization in 1999, as a volunteer, at the Wheelchair Relay Challenge, and in our office where she worked in administration. During that time she trained as a Peer Support volunteer. In 2012, she started as the Regional Services Assistant, and in March 2013, the Peer Support Coordinator. Kim was a friend to all of us and we grew very close to her family members as well. She will be missed greatly by the Barrie Team, the Peer Support Program staff and Spinal Cord Injury Ontario as a whole.” Chantal Graveline, Director, Client Services, Spinal Cord Injury Ontario, commented on Kim’s passing that, “We are very saddened by the passing of our dear friend and colleague Kim Demberline. She was a ray of sunshine in the Barrie office. Kim was totally dedicated and committed to enhancing the quality of life of people with spinal cord injuries or other physical disabilities. In the past year alone, Kim hosted more than ten Peer Connections events where clients could share their stories as well as resources to manage their lives independently. Kim was instrumental in supporting those encounters and would always extend a hand and a smile to all. “Kim came up with the title of our e-newsletter “FYI on SCI” and in this way, she will always be remembered. Kim also wrote an honour story last year in light of the 70th anniversary of our organization.” You can read her full story by visiting http://www.sciontario.org/2015AnnualReport/Wall-ofHonour.html#KimDemberline. Kim was very focussed on improving accessibility in the Barrie region, and changing people’s attitudes towards people with disabilities in the city. She wanted to make Barrie a model of excellence when it came to accessibility, so that other cities could follow their lead. In addition to her many roles in the community, she was on the Accessibility Advisory Committee of Barrie for ten years, and chaired that committee for eight of those years. A drop in celebration of Kim’s life was held on January 10, at the South Shore Centre in Barrie, at which numerous friends and family were in attendance. Kim’s family gave a special heartfelt thank you to Kathy Shannon as well as the Royal Victoria Hospital, Barrie, Palliative Cancer Care Floor nurses Jenna and Odessa for their sincere kindness, compassion and love. In lieu of flowers, donations were made to Spinal Cord Injury Ontario/EIP Barrie, which buys equipment for people with spinal cord injuries in the Barrie area.


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Kim, The Artist In addition to everything Kim did in the community, she was an extremely talented artist. She never trained or took a lesson, and didn’t believe she was great, but as you can see from her work, she was. Her sister used to call her a closet artist because Kim wasn’t confident to exhibit her work. Not everyone knew she painted, but at her celebration of life, her family displayed a number of Kim’s works. They took them from her art book which Kim had tucked away, and framed them for everyone to enjoy.

Kim never exhibited her art. Mostly, she created her work, and then made a card of the paintings to give to family members on special occasions. A lot of her cards were heartfelt because it took love and devotion to paint what she did for them. Heather Hollingshead said she was surprised at Kim’s celebration of life that Kim had created so many works, but everyone knew she was so talented. Her sister Sue said that in Kim’s younger years, Kim had a desire to go to art school, but

that never happened as life took off in another direction. Kim had not painted before her SCI, as she probably didn’t have time to sit in one place long enough to paint, but after her SCI, she used painting and drawing as a way to keep herself occupied. Through her painting she found solace in a special place. She used it to cope with her injury and get on with life. She used it as a way of coping and moving forward. When looking at the dates of her paintings, Kim hadn’t painted for the past seven years,

since 2008, and that was most likely because she didn’t have time to paint as she was really involved in the community. Heather had always admired The Clothespins painting, and this was left to Heather by Kim. Heather said that Kim always had a natural talent. “I saw that when she worked at Spinal Cord Injury Ontario. She would do everything so creatively, like our posters for the Wheelchair Relay Challenge. We were ahead of the game with Kim as she was so inventive in everything she did.” ●

Spinal Cord Injury Ontario

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feature with the Active Together project, I can speak to the potential that First Contact has in empowering individuals. We want to create a safe, fun, and comfortable experience in the sport or activity of the participants choosing. At the end of the day, we want everyone to come away smiling and wanting to come back for more!

Active Together By Ben McColl, Active Together Ambassador

It was once assumed that people with disabilities could not participate in sports like hockey, basketball, and skiing, but now sports like sledge hockey, wheelchair basketball, and mono-skiing are extremely popular.

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ortunately, for the 15% of Canadians who live with a disability, the new reality is that there is more opportunity than ever to get active. Communities and organizers of sport are beginning to realize that barriers to access like the built environment, attitudes and lack of opportunities have a huge impact on people with disabilities, and accessible practices are more often coming into the spotlight. The Council for Persons with Disabilities is aiming to increase participation rates and provide new opportunities in local sports and recreation for people with disabilities in the Peterborough area. This is achieved through our ‘Active Together’ project. After a short intake process, program participants are matched with ‘Active Together Ambassadors’; advocates who also live with a disability, and who are passionate about, and are active, in local sports and recreational activities. Participants then explore accessible sports or recreation of their choosing with their Ambassador. One of our goals is to provide participants with positive “First Contact”. This is one of the two additional stages in the Long Term Athlete Development for people with disabilities. As a person living with a disability myself, and an Ambassador

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• Outspoken! • Winter 2016

The Active Together projects aims at not only creating positive first time experiences with a sport, but also at creating awareness for accessible sports and recreational opportunities in Peterborough. You can visit our website for more information on this (www.pcpd.ca). Recently launched, the ‘Resource Hub’ page of our website lists all of our accessible sports and recreational opportunities, and it is growing every day. We also display these events in an easy to use ‘Events Calendar’ so users can keep track of events they hope to attend. Currently, Low/No Vision Curling at the Peterborough Golf and Country Club and Boccia at the YMCA are big hits. In 2016, through a unique partnership with Canadian Paralympic Committee and Canadian Mental Health Association, Ambassadors for the Active Together project will continue visiting local elementary schools providing workshops to students raising awareness of the importance of accessible and inclusive sport. For those interested in our program or any accessible sport and recreational opportunities within Peterborough City and County, please contact Caitlyn at activetogether@pcpd.ca or (705) 874-8661 and by visiting www.pcpd.ca. ●


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Different Roles. One Goal. Together we care for their future. Through your skill and compassion, you help them to heal. Through our legal expertise, and relentless drive, we ensure clients receive the financial support they need now, and in the years to come. If you or someone you know has suffered a critical injury, or would benefit from a legal second opinion, call McLeish Orlando today at 1-866-685-3311 or visit www.mcleishorlando.com

RR I E I HAMILTON H A M I LTO N I KITCHENER TORONTO TO R O N TO I BA BARRIE

1-866-685-3311 1- 8 66-685-3311 I ww www.mcleishorlando.com w. m c l e i s h o r l a n d o . c o m

CANA D I

AN

LAWYER M A

INE AZ G

™

A Noticeable Notice a ble Difference Differ ence


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what’s on!

Join Us for the 16th Annual Ski & Snowboard Day Thursday, February 11, 2016

Hit the slopes for another great ski event at Craigleith Ski Club. Please join us with your family & friends. Funds raised will support people with spinal cord injuries in Ontario. Your registration includes: • Fun Races • Sit-Ski Demonstrations • Lunch • Complimentary Beginner Ski & Snowboard Lessons (optional) • Après-Ski Reception • Auctions, Prizes & Awards Rates: • $175 per person • Group Discount:$875 (6 for the price of 5) • Children (ages 12 years and under):$75 Flat Rate 14

• Outspoken! • Winter 2016

Schedule of Events 8:30 a.m. - 10:00 a.m. • Registration • Ski Rental Pick-Up • Silent Auction Bidding Opens 10:00 a.m. – Noon • Hit the Slopes • Skiing & Snowboarding Begin • Complimentary Ski & Snowboard Clinics begin Noon • Buffet Lunch 1:30 p.m. • Fun Races Begins ~ Little John Trail Skiing & Snowboarding continue 3:30 p.m. • Après Ski Reception • Live & Silent Auction • Draws & Awards • Masters Golf Raffle For more information: Lynn Miñeque at 416-422-5644 Ext. 221, lynn.mineque@sciontario.org


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Junior Board Offering Up a Laughter-Filled Evening By Bria Weaver, Development Officer, Communications

By the middle of February, cabin fever may have set in. You may be itching to go out as the strong feelings of hibernation and holiday exhaustion wear off.

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e have the perfect solution – Comedy Night Presented by Spinal Cord Injury Ontario’s Junior Board of Directors! Mindful of how dreary winter can make everyone feel, the Junior Board thought that an evening filled with laughter would be the perfect remedy! Happening on Monday, February 22nd at Toronto’s Second City (99 Blue Jays Way location) at 6:00 p.m., guests will enjoy the festivities and depart the night with a big grin on their faces. The night kicks off with a light dinner and complimentary drink, and then the laughter ensues as The Second City Touring Company will offer up an unforgettable evening of classic and original sketch comedy and trademark improvisation. This is a fun event if you are looking for a night out with friends or finding the perfect Valentine’s gift for that special someone in your life. Tickets are $40 and available to purchase online at www.sciontario.org/comedynight or by contacting Bria Weaver at bria.weaver@sciontario.org or 1-877-422-1112 Ext. 218. We look forward to seeing you there! ●

Spinal Cord Injury Ontario

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feature

A Lioness in Lamb’s Clothing By Nancy Xia, Community Resource & Education Assistant

If I could use an animal to describe who I am, I’d say “a lamb” – soft spoken, slow to anger, blah, blah, blah... But I am totally aware of the fact that there is another personality lurking behind that supposed gentleness.

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he claws had come out a couple of times in the past and many times they took place in a public washroom. Yes, I think you know where this is going. I react when people abuse the only accessible stall in a half-empty washroom. It all started when I was still a student in university. The accessible stalls in my school were particularly luxurious with their own sink and vanity. One fateful afternoon, I was quietly waiting for the stall to free up. According to my observation under the door, the occupant was someone who managed to walk comfortably in high heels. I was losing patience when my class had already started. Though I was mad as hell, the little lamb was silent under the knife of the slaughter. Then, another girl came out of her stall and noticed the situation. “Is someone in there?” she asked. “Yes.” She knocked the door with fierce passion, “Excuse me, someone needs to use this.” Within ten seconds, the door opened. The person came out, she said, “sorry,” but not to me, to the other girl. Though I really appreciated the help, I decided that I would never again let another person stand up for me. I have a voice of my own and sometimes I have to roar.

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• Outspoken! • Winter 2016

I became increasingly confident and unapologetic when confronting people in similar situations. The most memorable encounter took place when I was watching Les Miserables in the Princess of Wales Theatre. During intermission, I went to the ground level where the

character of the play. Finally, she came out, there was this “uh-oh” expression on her face. “Sorry.” She said it sheepishly. To be fair, she meant it. I said nothing but slammed the door really, really hard in a theatrical style. So much drama, it was sassy and classy at the same time. Two weeks ago, I had a conversation with my girlfriend. She told me about her recent controversy over an accessible stall. She said that this lady came from behind and got into the accessible stall right in front of her eyes, as if she was completely transparent. “WHAT?!” Immediately, I had an image of this lousy piece of work; high maintenance, lots of makeup, repelling amount of perfume. “What did she look like?” I wanted to confirm. “She was middle-age, South-Asian, probably new to the country.” It shattered my expectation. For some reason, I found myself less mad. It got me thinking, could it be possible that some people have no idea what or who an accessible stall is actually for? Thinking back, prior to my injury, did I ever abuse an accessible stall? I used to be very ignorant about people living with disabilities and I didn’t know how much of a deal those extra spaces meant for someone who uses a wheelchair. Also, judging by the fact that I was apathetic toward the disability community, I would say, I probably abused and misused the accessible stall without even remembering it. I was just lucky that I didn’t bump into a grudge-

That made me feel more positive about the possibility that most people do not intentionally want to misuse an accessible stall. Perhaps a gentle reminder of what an accessible stall is for, would be equally educational and memorable. designated accessible washroom was located. This washroom had a wheelchair sign on the door. There was absolutely no excuse. As soon as I exited the elevator, I saw a nicely-dressed lady leave her line and walk towards “my washroom”. I gave myself some gas and attempted to reach it before she did. Too late, she shut the door right in my face. Everyone (all women) lining up outside of the washroom were staring at me. They were expecting a scene. All of the sudden, waiting in line with a full bladder became entertaining. On the other hand, while waiting in my line, I was thinking hard about various ways of making her the most miserable

faced lioness waiting to tear up my day. Yesterday at the gym, while taking off my contacts, a woman was about to get into the accessible stall. I said, “Oh, can I use... I need to use it soon.” She didn’t get it right at that instant, but three seconds later, “Ohhh, yes, of course.” She gladly went to the next stall. That made me feel more positive about the possibility that most people do not intentionally want to misuse an accessible stall. Perhaps a gentle reminder of what an accessible stall is for, would be equally educational and memorable. Perhaps a lioness could settle with eating hay and grass, because she’s a little lamb at heart. ●


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feature

It is not always I SCIATICA By Mary Ann Hug

In May, on Victoria Day weekend, I was out in my yard pulling up weeds. This is not an unusual activity for me to be doing in the spring. Later in the day, I began to feel a lower back pain and the next day my right foot started to feel tingly.

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• Outspoken! • Winter 2016

thought nothing much about it. After all, I had spent over an hour the day before bending over and weeding. By the end of the first week, I could hardly balance while walking because my right foot became almost numb-like. The next week, I made an appointment with my family doctor. Upon examination, he said that it was probably a case of sciatica and that I should go home and rest, take a week or two off from work and take a prescription pain killer. I did none of the above, but did rest as much as I could in between my nine hour a week work week as a personal support worker. At my age of seventy, nine hours was enough for me. By the third week, my entire right leg was numb and my left foot started to feel the same. My doctor had gone on holidays by then and was only returning in mid-July. I made a for-better-or-for-worse decision to wait until he came back from his holidays before doing anything else. By the end of June/beginning of July, I could only walk if someone was helping me. The quad cane I had bought in June was not good enough for me to use at that time. I could not drive, or of course, work. I had no idea why all this was happening and I had no idea why I was getting very incontinent, having trouble breathing and getting more and more out of breath. I also could not always eat and keep my food down. I was scared. I am on a couple of municipal committees and could not attend the meetings by this time. I had run for my City Council in the election last year and have been an active member of our historical society, and in fact, the


! Outspoken WINTER 2016_! Outspoken Winter 2009 2016-02-04 10:29 AM Page 19

Vice-President of that as well as the Vice-President of Three days later, I was moved into an operating No one had explained the museum board. I am also on the Heritage room and still not fully aware of what was going on anything to me at this committee here. As interested as I am in historical and what would happen. The surgeon said he would point. I was suddenly issues and buildings, I became unable to attend or have to go in and decompress my vertebrae in the C4, in Ottawa and did not participate in anything I was used to doing. C5 and C6 areas. There was a chance for blindness on know why. My surgeon Having written fourteen murder mystery plays and waking up. met me early on my also having had acted in most of them, I was unable first morning in Ottawa I did wake up about seven hours later. I had a large to even think, let alone do any more writing at this brace on my neck. I had some pain. I had no use of my Hospital. Saying only time. I had published a short story and had planned to legs. Both were still numb. But my numbness in my left that he needed to do start a novel as soon as my gardening was done. Well, hand was gone and also my right thumb was not surgery on my spinal my gardening was done! My work as a personal numb anymore. column as soon as he support worker was also done. I felt as though my life Only later did I find out that I could have died. My could fit it in to his was done! spinal column was closing and the nerves were being schedule, I found When my doctor came back from holidays, I compressed and not working properly because of that. myself in a haze and in insisted that he see me the same day. He took one I am glad I did not know this before the operation. My a hospital room, look at me and sent me immediately to our hospital. body was shutting down! waiting. He admitted me on the spot. Two people had to hold Now, almost four and a half months later, I have me up and walk with me at this point. I went from some feeling in both legs and am going to physiobeing at our local hospital for three days to being sent therapy to get more strength in my legs and to to Ottawa Civic Hospital by ambulance right after our improve my balance, which is still off. And, I want to neurologist had read the two MRI's that were done on my body. No one had walk again! Slowly but surely is the strategy. I may still need spinal surgery explained anything to me at this point. I was suddenly in Ottawa and did in the lumbar area at some point. But, I have come a long way since June of not know why. My surgeon met me early on my first morning in Ottawa 2015. I might not be able to ever walk ‘normally’ again, but want to walk as Hospital. Saying only that he needed to do surgery on my spinal column as well as I can. soon as he could fit it in to his schedule, I found myself in a haze and in a So, sciatica may not always be what you have. Be careful in what you do hospital room, waiting. and really take notice of what symptoms you have. ●

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Spinal Cord Injury Ontario

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feature

There Is No “I” In You, But There Is an “I” and a “Me” In My Life. By Paul Robinson

I am Paul Robinson. I am 64 years old. I had a spinal cord injury on November 1, 2015. My life changed, lying on the ground, I had fallen and I couldn’t get up; fear, the unknown, questions, no answers, overwhelming me. What was happening? Why is this happening to me? Afraid, anxious, scared, and having many other emotions.

I

had been slowing down and had some trouble walking, and was too stupid and stubborn to go to the doctors. But I wasn’t getting any better. After falling around August 15, 2015, I started needing to use a cane, and I fell again, on about September 22, and couldn’t get up. I needed to use a walker. A couple of weeks later, I went to family doctor, as I was having a lot of trouble walking. On Sunday November 1, I was in the Enniskillen Conservation Area, used the outdoor toilet, and got back to the van. Halfway home at Burketon, I lost control of my bladder and bowel, got back home and got the walker out of the van. Tried to get out and basically fell out of the van. I tried to stand up, but folded like an accordion. My pain was severe, and I crawled about 40 or 50 feet to the back door, tried to get up but couldn’t. I got to a chair, and my sister-inlaw’s brother came and asked me if I needed help getting into the chair. I sat that way for a few minutes, and tried to get up, but couldn’t. My sense of fear was very severe, and I was in shock and disbelief as to how this could have happened to me? I would be okay, I thought. Maybe I just pulled a muscle or something. Little did I know, I had just sustained a spinal injury; a life threatening, a life altering, a life changing injury. I had fears, many fears, but... Your fear has to turn into acceptance, your acceptance has to turn into hope, and your hope has to turn into a fighting spirit. Your fighting spirit has to turn into an attitude, an attitude that won’t allow this to beat you. Put this all together; accept, fight, attitude, hope and pray. Fight for your life, fight for your freedom, fight for your independent, fight for you. Your life has changed, you will be different, and you will become knowledgeable about your disability. Use your knowledge to help yourself and others. Treat your nurses, doctors, therapists, fellow patients, and cleaning staff with dignity and respect. And you will receive rewards for this, back in thanks, gratitude and recognition of your acknowledgement. Paul is presently a patient at Lyndhurst UHN, undergoing rehabilitation. He is in contact with Spinal Cord Injury Ontario. ●

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• Outspoken! • Winter 2016


! Outspoken WINTER 2016_! Outspoken Winter 2009 2016-02-04 10:29 AM Page 21

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feature

Advocate for Children “W with SCI Achieves Milestone Goal Diane Talbot-Schoenhoff, Founder and Executive Director of Support in Motion (SIM), is not one to rest on her laurels. Now that her charity has successfully advocated to the healthcare system to provide children and youth with spinal cord injuries access to specialized outpatient rehabilitation, she’s now encouraging other organizations to expand their services as well.

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e should be doing everything we can to assist people with disabilities to have better outcomes and quality of life. If we can help lessen the burden even a little, then we should be doing more.” Diane became a SCI advocate when son sustained a SCI nearly 11 years ago in a snowboarding accident at age 13. It was then that she recognized that there was a gap in the system when her son was transitioning from paediatric to adult services. Unlike their adult counterparts, there was no specialized, outpatient rehabilitation for children and youth with spinal cord injuries in Ontario. “Because I lived the gap, I didn’t want anyone else to go through it. I thought there was perhaps something I could do to make a difference. This recent decision to fund children’s rehab is a huge victory for children with spinal cord injuries, who will now get the services they deserve. Personally, there is healing in knowing that in some small way my family was able to make a difference.” But there were many hurdles to overcome in bringing about change, and Diane wasn’t alone in her mission. Finding the right people and organizations to raise awareness of this gap was the first step. It was while on the Rick Hansen Toronto Solutions Committee that she met Peter Athanasopoulos, Senior Manager, Government Relations & Public Policy, Spinal Cord Injury Ontario. Diane wrote a proposal outlining the need to fill the gap in specialized rehab services for children and youth with SCI. The project was called Support In Motion (SIM) and the committee unanimously approved it. Rick Hansen provided seed funding to SIM, via Spinal Cord Injury Ontario “Peter really helped me with the project and was one of our first champions. Spinal Cord Injury Ontario helped me get established in the very beginning. We decided to assemble a team of experts to look into


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the issue. We invited SCI scientist and physiatrist Dr. Cathy Craven and physiotherapist Craig Ganley to join us – we were the initial four people who started Support in Motion (SIM). We talked about the gap, how to fill it and how to get funds.” Once SIM achieved charitable status, and was providing children access to specialized rehab, Barbara Turnbull, with whom Diane had previously discussed the issue, wrote a feature in the Toronto Star. In July 2012, she reported there were hundreds of adults in the province who had incomplete spinal cord injuries each year. Children with the same injuries were even fewer—only a handful a year in Ontario—and they had even less intensive, outpatient physiotherapy services than adults. Together, Barb and Diane championed the cause. At first, Diane got a lot of push-back and she wondered why no one was addressing the gap when it was such an obvious one. Apparently the incidence wasn’t high enough in children to warrant attention. “Regardless of the low numbers, my thought was that you still have to provide the right services and those children are eventually going to be adults. It was a compelling business case – if you did intervention a few months after injury, you would ensure a better outcome and fewer secondary complications. And from a moral standpoint, not taking action was reprehensible. It just didn’t make sense and I felt people weren’t taking responsibility.” Toronto Rehabilitation Centre is an adult facility and Holland Bloorview Kids Rehabilitation Hospital handled inpatient care. Diane’s son Nick was an inpatient at Holland Bloorview for nine months and was sent home with a prescription for a power chair and no place to go for rehab. “People said, “This is a good as it gets,” but I knew ongoing rehab would ensure the best possible outcome. I was determined to get the services my son needed and then figure out how to help other families.” Eighteen months after the issue was exposed in the media, SIM was invited to make a presentation at Queen’s Park. Diane invited Holland Bloorview Kids Rehabilitation Hospital to join her team. They convinced the Ministry of Health and Long-Term Care that more had to be done. SIM then collaborated with the hospital in the writing of a proposal for a new spinal cord injury program whereby the hospital would take the lead and receive funding to follow children and their treatment closer to home. There are 21 such children’s treatment centres across the province, so this was a milestone achievement. Before she passed, Barbara Turnbull knew that the program was approved and would be taking place, but she was not able to take part in the formal announcement. The Ministries of Children and Youth Services and Health and Long-Term Care announced funding to give kids with SCIs, who have been recently discharged from inpatient care, more access to services. This funding has

Nick Schoenhoff, Diane Talbot-Schoenhoff

been granted for two years, and the program will be evaluated to determine if further commitments will be made. This now makes Holland Bloorview Kids Rehabilitation Hospital a hub, allowing it to train providers at other children’s treatment centres in the province and to purchase equipment. Everything is now entirely in place and specialized training – extra neurophysio training rehabilitation – began early November 2015. But this is not the end of Diane’s story... “Children with SCIs and their families need even more support than merely outpatient rehab. Especially at the onset, when families are groping around in the dark, they need practical help, peer support, counselling and even respite. But approval and implementation of this current program has at least opened our eyes to all of the other areas of need. So we still have more work to do.” Diane is founder and Executive Director at SIM, and is now doing communications consulting with the Ontario Association of Children's Rehabilitation Services (OACRS), the voice for pediatric rehab in Ontario. continued on page 46

This is a milestone achievement by this government to recognize the need for specialized rehab services for youth with SCI. While this government continues to look at efficiencies to ensure that the right people are getting the right services at the right time and place, this is an excellent opportunity to fully examine the continuity of services, programs and support for people with SCI, from children, to youth and into adulthood (age 16 and over). We look forward to seeing how Holland Bloorview Kids

Rehabilitation Hospital will be working with its provincial partners to ensure that this dedicated service is available to all Ontarians under the age of 16, and how linkages will occur between children’s treatment centres, allied partners and adult centres with rehab services. Congratulations Diane for all of your hard work on this important project. Spinal Cord Injury Ontario was proud to be involved with this initiative. Peter Athanasopoulos, Manager, Government Relations & Public Policy

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feature

Lyndhurst Lodge THE EARLY YEARS By Albert Stein

Ah the good old years! There probably are only a few patients left who went through rehab at the old Lyndhurst Lodge so there are few stories written about it.

Y

es there are old pictures around showing some of the patients outside on the driveway but I have seen only a few of the interior and there is no comparison to the current building. This is my recollection about Lyndhurst, and I hope it gives you an idea of the first early lodge building. The old building was a converted mansion that was in its day, a beautiful house with high ceilings, carved wooden panels on the walls, and great French doors that opened outward from some rooms. It had a gymnasium on a lower level and a large outside area that backed onto a deep ravine. When I arrived there in 1953, they had constructed

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a new wing for male patients that in addition to their rooms had a swimming pool, additional washrooms with roll in showers, and service rooms for GU supplies. The men occupied the lower level of the house and the new wing. The women were on the second floor of the main house which was accessed by an old elevator that could only carry one wheelchair at a time. The second floor also held the doctor’s offices for Dr. Jousse and Dr. Geisler. When you came in the main entrance the nurse’s station was directly ahead of you and to the right was a large library room and a massive stairway to the second floor. To the left was the dining room used for meals. It could not accommodate everyone so meals were sometimes served in shifts with the administration staff eating last.

The offices for John Counsel, Andy Clark and the secretaries were in the converted carriage house located off the end of the new wing and in addition to the Canadian Paraplegic Association offices, there was an apartment over the building that served as living quarters for the maintenance man and his family. It was around 1956, that Lyndhurst began taking in more civilian patients, and they constructed another wing on the north end of the building complete with additional rooms and a much larger dining room. They would soon realize they needed more space and the current location was too small. Talk about accessibility! None of the ramps within the building would meet today’s building codes. There was a ramp from the second floor


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down to the ground that was meant for a fire escape, but we used it mainly to sneak in late night snacks and party supplies. The ramp for the gym was accessed by going through the one large bedroom for six men, and was so steep that if you lost control going down you could punch a hole in the wall at the bottom and get a good crack on the head as well. The patients in the large bedroom had to be up and dressed before first chair class or you would be caught with your pants down by everyone (men and women) who were attending the class or going to the physio department which was in the gym area. Going up required a

change from the Toronto General Hospital. When my father died I found my old hospital bills for my rehab period at the Lodge, and gave them as mementos to Bill Adair. The Canadian Paraplegic Association was charging under $8.00 a day. How times have changed! Does this sound sad and dreary? It was quite the contrary and as a 16 year old kid I have great memories of late night dice and poker games in the swimming poor areas, beer parties in the gym after hours, and taxi runs from Swiss Chalet if we got hungry. Yes this was the beginning of the chain as it is today. Regardless of this funny business, everyone had to attend classes the next day

push by George White or the physiotherapy staff. The physio treatment area was in an area about 30 ft. by 30 ft. (compare that to today’s areas). The men patients were segregated in that those who were able to manage quite well were put into a room on the second floor (five men) until such a time when they were able to go home. The fire escape ramp was off this room so there were many occasions to get into trouble. How some things have changed? The nurses today do all of the duties that male orderlies used to do. In the years after WW2 there were many former medical corpsmen who worked in the hospital and did the heavy lifting and GU work. There are only nurses now. Under the old ward system in the hospitals there were 30 men in a large room with only moveable screens for privacy. Lyndhurst had only four to a room in most cases and this was a real

even when sick and hung over. I remember going to skating shows and hockey games at Maple Leaf Gardens when they loaded us into a flatbed semi-trailer, as at that time there were no accessible buses and no seatbelts. They just put blocks under our wheels and closed the back doors. Try this today and watch for the cries out about safety. Most of all, I remember the staff who encouraged us and pushed us to never give up. Everyone is aware of John Counsel and Andy Clarke of course but there were many others such as Barbara Duffin the head physio, Glen Jewitt the school teacher, Jim Bartlett the job placement officer, and of course George White the PT

instructor who was a double amputee himself and still he lifted us off the floor mats and pushed us up the gym ramp. I could fill pages with the stunts that we pulled and the things we did to keep morale at a high level, but the major rule was you still had to attend classes the next day, no excuses allowed, and no goofing off. That I hope never changes because it is a cultural shock when you leave Lyndhurst and you need all the training they provide. ● About the author: Albert is 78 years young. He sustained a spinal cord injury in 1953 from a diving accident which left him with quadriplegia, a partial

C5/C6 injury. He has been married for 52 years, and has two children and two grandchildren. He obtained a degree as a Certified General Accountant in 1978, and retired from Navcanada, the company he worked for, in 1998. He has volunteered for several Accessibility Advisory Committees in Simcoe County, and served on the Board of Directors of Independent Living Services in Barrie for eight years.

Spinal Cord Injury Ontario

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feature

Surgeons Reroute Nerves To Restore Hand Function For People Who Have Quadriplegia By Dan Thompson

A

pioneering surgical technique has restored some hand and arm movement to nine patients immobilized by spinal cord injuries according to a new study at Washington University’s School of Medicine in St. Louis. The surgeons rerouted healthy nerves sitting above the injury such as the shoulders or elbows, to paralyzed nerves within the hand or arm. Once a connection was established, patients underwent extensive Physical Therapy (PT) to train their brain to recognize the new nerve signals. The technique targets patients with injuries at C6 or C7; and consequently, it does not help patients with injuries at C1 through C5. “Physically, nerve-transfer surgery provides incremental improvements in hand and arm function; however, psychologically, those small steps are huge for a patient’s quality of life,” said the study’s lead author, Ms. Ida K. Fox,

OGO By Dan Thompson

O

go is a battery powered wheelchair that has a hands-free control system. If we can get a man on the moon, then we certainly have the capability to upgrade wheelchairs. That’s exactly why one man from New Zealand, after seeing his ‘mate’ struggle to perform simple tasks with his old wheelchair, took matters into his own hands. It took years of development and is an ingenuous reconstruction of a Segway, but Kevin Halsall unveiled the Ogo, a souped-up wheelchair. The Ogo is set to revolutionize the industry. Just like a Segway, the active moving seat control moves the chair in the direction in which you lean. For example, you put your weight forward, the Ogo will move forward. It’s completely intuitive and renders hand controls obsolete. This means your hands are completely free for anything else such as dribbling a

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A nerve transfer bypasses the zone of a spinal cord injury (C7). Functional nerves (green) that are under volitional control are rerouted (yellow) to nerves (red) that come off below the spinal cord injury. (credit: Washington University in St. Louis)

Nerve Transfer

MD, Assistant Professor of Plastic and Reconstructive Surgery. Society of Plastic Surgeons’ journal, Plastic and Reconstructive Surgery. Ultimately, medical professionals hope to discover a way to restore full movement to the estimated 250,000 people living in the U.S. with SCIs; however, until a cure is found, progress in regaining basic independence in routine tasks is paramount.

For more information, go to: www.kurzweilai.net/surgeons-reroute-nerves-to-restore-hand-arm-movement-to-quadriplegic-patients?utm_source=KurzweilAI+Daily+Newsletter& utm_campaign=11f661fe27-UA-946742-1&utm_medium=email&utm_ term=0_6de721fb33-11f661fe27-281952929 ●

It took years of development and is an ingenuous reconstruction of a Segway, but Kevin Halsall unveiled the Ogo, a souped-up wheelchair. The Ogo is set to revolutionize the industry. ball, and your core muscles are constantly used to maintain your balance so they will not atrophy. And that “got the Occupational Therapist very excited,” says Halsall. Users can swap out regular wheels for larger, all-terrain ones to permit the chair to zip down the beach or to travel on uneven pathways at over 12 miles per hour. Halsall concluded, “There are plenty of ways we could be tricking out wheelchairs, the Ogo is a hell of a good start, mostly for that hands-free feature. Its future remains uncertain, and we’re unsure of specifics like battery life, but there’s apparently solid investor interest.” For more information, go to: http://boingboing.net/2015/10/19/hands-free-wheelchair-controll.html Until next time… ●


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feature

Dennis HernandezGaleano

Accessibility Advocate Awarded Top Honours by Province Dennis sustained a spinal cord injury in his late teens but has never let his physical disability get in the way of accomplishing his goals.

W

ith the never-ending encouragement and support of his mother, he grew to be a prominent, active member of the Fort Erie community and has become a tireless advocate for accessibility throughout the region. Of the 101 awards presented to individuals by the province last November, Dennis was awarded the Community Champion for Accessibility. But how did he get involved, and why does he continue this important work? He said, “There was a mandate by the province through the Ontarians with Disabilities Act (ODA) , and the town advertised a position in the newspaper. You had to apply through the town hall. I was reluctant to apply, but I was encouraged by my mom. I was interested in the position, but didn’t know what I could bring to the table, as at 22 years of age, I didn’t have too much life experience. I’m thankful I did apply, was one of two of the youngest people on the committee, and I’ve been there ever since. I stuck with it, and throughout the years saw people come and go, but have had a great experience so far.” Dennis served as a member of the Town of Fort Erie Accessibility Advisory Committee (AAC) since it was established in 2002, and has served as Chair since 2011. Prior to that Dennis also served as Vice-Chair from 2007 to 2011. In the community, Dennis is also very active with the Greater Fort Erie Youth Soccer Club, serving as a Board member and soccer coach for many years. Dennis has been instrumental in getting walkways constructed or repaired in public parks, particularly where there are soccer fields. Dennis is also the Chair of the Fort Erie Active

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Transportation Committee that looks at improving ‘walkability’ in the community. He acts as a liaison between this committee and the AAC and has led the initiative to create bike racks throughout the various downtown neighbourhoods as well as a joint audit of all bus stops and shelters with both committees, building on their similar need to have active and accessible transit services in the community. He has also been a

community leader for the Rick Hansen Relays and was chosen as the Community's Medal Bearer for the 25th anniversary celebration. Most recently, Dennis was the catalyst to improvements made at Oakes Park, Optimist Park, Service Ontario, the Stevensville Canada Post Office, improvements to traffic signals at intersections and the inclusion of audible crossing signals, to name a few. And he worked with the Niagara Parks


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Commission to create an accessible pathway to the Monument so that Veterans can fully participate in Remembrance Day ceremonies. Dennis is very humble and downplays all of the work he does, but without his help, many things that have been done in the community would not have been accomplished. He has had an impact on everyone that he meets. He never gives up, and strives to find solutions to remove barriers for everyone. When asked about how his work is helping make positive changes for people with SCI and other disabilities, his response was very noteworthy. “Helping people see people with disabilities in a different way, and being more inclusive is one of our greatest achievements. You can fix buildings but if you can’t get around people’s mindset, you won’t realize change. To get everyone’s mindset around disability, that is the greatest achievement.” “Before, people would come up and push your chair instead of asking you and waiting for a reply. If people see you’re having difficulty going up a hill or something, now they ask first, so they can provide assistance if you ask for it, but at the same time you maintain your dignity. And we also need to encourage the private sector as to how they can be more accessible. When I go into a restaurant, that is not accessible, and there are ten of us, we look to go to another place. It may be one person that can’t get in or doesn’t want to return, but then they’ll be losing nine other people to their business. They’re just starting to grasp this concept. You’re also seeing the shift in the community in the way that people approach people with disabilities, and I see that shift in the public that they’re starting to get it.”

“In the work we do, we help with exposure, and help educate the public on how to approach people with disabilities. This includes hidden disabilities, and I had no idea of or had been exposed to this prior to my work on the committee. I’d always thought a disability was physical, but over the years I’ve learned about hidden disabilities, and the learning curve that everyone needs to undertake so they are more aware. For instance, two members on our committee had seizures, and one had a service dog, that now, because of the AODA (Accessibility for Ontarians with Disabilities Act), businesses/services need to accommodate them. Once when he came to my home, he had a seizure, and I saw how the dog comforted him and stayed with him until the seizure was over. It was so important for him to have this dog by his side, and now because of the change in the law, he will.” “Luckily, in my work, we haven’t encountered many roadblocks. My position is a volunteer, and we’ve been pretty fortunate as far as funding, and the town council has been very supportive. We are only an advisory committee, and it’s not that what we say has to be done, it’s what we think should be done. We conducted some audits and looked at all parks/buildings that pertain to the town, and made suggestions as to what can be improved. For instance, the arena had conventional doors with the button to open the door. The problem was that parents having big bags and kids hitting the button, the button was breaking all the time. So we

suggested they install auto sliding doors, similar to what exists at a hospital. The approach was universal accessible design. We looked at the entrance and adapted it for everyone. Now everyone goes in and out without difficulty. This project was so successful that they installed the same entrance into town hall, and it’s been working great ever since.” “As a committee, we are very proactive in supporting our mandate, as well as reinventing ourselves so we don’t become stagnant. We try to be as engaged as possible with the community, and are pretty well known, and thankfully, our local newspaper is supportive in telling our stories.” “We have a multi-year plan and strategic plan which we present to council every year. We put forth what was done and what we think can be done, and there is still a lot to be done. It’s all about budget of course but they’ve complied with almost everything we’ve suggested. We also share our experiences and work with other municipalities so we can learn from each other, and help make improvements to the whole region. We are very dependent on tourism, so this is vitally important to the region. Like my father said, if you’re going to do something, do it right, do a good job, or don’t do it at all. I want to make sure that the positive changes we’re making in our community can happen in others as well. I may be in Fort Erie, but I’m not too far from the Falls, so I want to have the same experience there as I do at home. Meeting with other municipal committees is also a good way to meet people and build relationships and it grows my circle of friends. It’s a never ending task to help keep the community more accessible.” “My work on accessibility has been a journey from the start, and a life experience. I’ve been blessed with the support I’ve had from my family and friends, and people I’ve met. I say if it wasn’t for my SCI, I might not have met them. I try to stay positive for myself, and for my mom who is very spiritual. She has helped keep my mindset positive. She’s always pushed me and encouraged me to do things, and a lot that I’ve accomplished. Without her support I probably wouldn’t have dove into it. Like anyone else, you take the good that comes and enjoy the good days as much as you can; roll with the punches.” Dennis credits Beverley Bradnam, for the committee’s successes, and his enjoyment in working with the town. Beverley is the Executive Assistant to the CAO and Policy Analyst for the Town of Fort Erie with a Diploma in Public Administration (DPA) with Distinction. She has three children and participates in provincial and regional committees, and is up to date with all the changes of policies, training, etc., that encompasses the AODA. “She takes time away from her family to do her work and is a positive influence on me, and we have an excellent working relationship. She is a very strong woman and reminds me of my mom; not one to sit back, gets results, has high energy, and helps make me want to be a better chairperson, and work harder to bring about true accessibility.” “There is a saying I always use when it comes to accessibility. Accessibility isn’t about disability, it’s about ability. It’s organizations like Spinal Cord Injury Ontario that make accessibility for people with spinal cord injuries a priority to improve quality of life, and has advocated this for many years.” ●

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Resources to Help You and Your Peers Stay Healthy and Active in 2016

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ost people know that physical activity is important for your health, such that the more active you are, the easier it can be to manage your weight, reduce your risk of disease, manage stress, and feel better overall. Being physically active can also make you stronger and improve your cardiovascular fitness, which helps make your tasks of daily living easier. Knowing the benefits of being physically active is important but only the first step. For some people, the next step is a little harder as they may be unsure of where to go for information or how to begin a physical activity routine. If you are one of those people, the first resource you should consult is the Physical Activity Guidelines for Adults with Spinal Cord Injury. The guidelines, available in 13 languages at http://sciactioncanada.ca/guidelines/, recommend that adults with a spinal cord injury complete at least two, 20 minute sessions of moderate to vigorous intensity aerobic activity per week and two strength training sessions per week. For strength training, 3 sets of 8 to 10 repetitions of each exercise for each major muscle group are recommended.

“I have the guidelines, but I’m not sure where to go next.” By Marie-Josée Perrier & Spero Ginis

Tis the season to make resolutions and commit to changes that will have a positive effect on your health and wellbeing. One common resolution is to become more physically active.

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There are two free, online resources available at SCI Action Canada (http://sciactioncanada.ca) that can help you begin a physical activity program and work up towards meeting the physical activity guidelines. First, the SCI Get Fit Toolkit highlights how to plan for physical activity, as well as provides some possible strategies to overcome common barriers to physical activity, such as bad weather or lack of transportation. The toolkit also provides ideas and suggestions for new sport and exercise activities to try. The second resource is called Active Homes. Active Homes is an evidencebased resource that guides you through strength training exercises that you can do at home. If you visit the Active Homes section of the SCI Action Canada website (http://sciactioncanada.ca/activehomes), you can download a copy of the Home Strength-Training Guide for People with Paraplegia or a separate guide for people living with tetraplegia. The guides are available in English and French and are supported by corresponding videos that show the exercises being performed by a peer with instruction by a personal trainer.

“These resources are great, but I’d rather speak to a peer with an SCI.” If you want to speak with a peer about physical activity, Get In Motion is a service that offers free physical activity counselling over the telephone to Canadians with SCI, multiple sclerosis, and cerebral palsy. If you decide to try Get In Motion, when you register you will receive a welcome package that has an SCI Get Fit Toolkit, a sheet that outlines safety tips for physical activity, addressing topics such as autonomic dysreflexia, and a set of resistance bands that you can use to do strength training exercises at home. Our counsellors are trained to help in many ways and can address several topics, including: • Effective goal-setting and time management • How to find online and community or resources that can help you reach your goals • Brainstorming ways to overcome physical activity barriers • How to exercise safely and maintain motivation If Get In Motion sounds right for you, you can register for the service at: http://sciactioncanada.ca/get-in-motion.php.


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In Honour of “I’m already active – and I want to help others become physically active.” If you are living with an SCI and you want to share your passion for physical activity with others, then the Active Living Leaders peer mentor training program is for you. The purpose of Active Living Leaders is to provide information and the skills for people with SCI and other physical disabilities to effectively promote physical activity to their peers. The training program is composed of three parts, all online at www.activelivingleaders.ca, that can take as little as an hour and a half to complete. As this is an online program, you dictate the pace of your learning. By the end of the first part of the Active Living Leaders Peer Mentor Training Program, you will know the latest evidence-based information on physical activity and sport participation for people with SCI, as well as the resources that are available to help people stay active. The second part of Active Living Leaders is unique and focuses on introducing peers to transformational leadership, which is a leadership style that helps individuals maximize the quality of their relationships with others, empower those they mentor, and encourage their mentors to go beyond what they thought was originally possible. This part of the program involves watching a 25-minute video on transformational leadership. The final component of the program is three practice sessions that can be completed at your own pace. The purpose of the practice sessions is to give you a chance to consolidate knowledge and new leadership skills prior to working with peers. You can download a copy of the Peer Mentor Training Handbook with all of the information and resources highlighted throughout the program. Upon completion of the training, you will receive a Certificate of Completion to identify you as an Active Living Leader – SCI. Of course, you are also welcome to complete the other two sections for MS and other disabilities. ●

Jesse Redden

His Spirit, Passion and Tireless Dedication to Helping Others By Mary Dufton Jesse Redden was a devoted, tireless and energetic volunteer for Spinal Cord Injury Ontario. He provided peer support and was active in the annual Guelph Wheels in Action and Kitchener Waterloo Wheelchair Relay. In 2011, Jesse was in a car accident and sustained an incomplete spinal cord injury.

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adly, Jesse died in April 2014, at the age of 25 due to complications from pneumonia. In his short life, he left his mark on everyone who knew him, especially Sheila Daniel, Development Officer for Spinal Cord Injury Ontario in London and Deborah Rose, former Regional Services Coordinator for the KitchenerWaterloo region. They both shared their memories of Jesse. This is their tribute. Sheila remarked, “I met Jesse through Deborah, who was the Kitchener Regional Service Coordinator in 2012. He joined the Wheelchair Relay Challenge planning committee and was the event spokesperson in 2013. As the spokesperson, Jesse attended every media event. Jesse (left) with Sheila Daniel and Bill Adair. Though he was uncomfortable at first, he did a great job with interviews and presentations. He was well liked by everyone.” Deborah met Jesse while he was hospitalized and recovering from surgery, after his accident. She said, “He was polite and a bit lost, wondering who I was. I had a service puppy in training in my care and it was a romance made in heaven. That puppy made his day. “Though I only knew Jesse for a short time, he made a big impact in my life and the lives of those around him. I honour Jesse because of his wonderful spirit and sense of humour. He had a great passion for life and never let his injury stop him from reaching his goals. “I admired his courage to face his demons past and present. Jesse’s life changed in a single moment, which was something I could not imagine. Jesse recognized he had choices and chose to explore this ‘new norm’ with his eyes wide open, he tread towards facing it with wonder. I so admired his innocent/young spirit”, remarked Deborah. Sheila recalls how proud he was of his ‘souped up’ van. “He took great pride in telling me about all the cool elements he had added including sound proofing because he loved his loud music. But most memorable was the story of when he was told he would never walk again, he kept dreaming that he could walk so he focused on that dream. Eventually he was able to walk again with use of a cane. He would then laugh and tell me he now dreams of running. Given more time, I think he would have done it!” Jesse and Deborah met regularly after his injury. She knew she could count on him to accompany her to events whether it was for raising awareness or for providing peer support. Jesse also diligently looked for opportunities that would lead him to a new career. He was motivated to create a vibrant life. “I last saw Jesse before I moved to New Hampshire and he treated me to lunch. It was one of the best lunches I ever had,” said Deborah. “From Jesse, I learned to never stop believing in what we can do and achieve, even when others doubt it can happen!” I honour Jesse’s memory by telling his inspirational story to others and by living my life like him, with passion!” ●

Spinal Cord Injury Ontario

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feature

Hon. Elizabeth Dowdeswell, The Lieutenant Governor of Ontario with Bernie and to the right, Hon. Vim Kochhar, Chair, Canadian Foundation for Physically Disabled Persons

Canadian Disability Hall of Fame Award Bernard Gluckstein, Founder, Gluckstein Lawyers, has been recognized many times for his work to advance the causes of people with disabilities, including being a King Clancy Award recipient.

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n Friday October 30, 2015, Bernard added another prestigious accolade to his title when he was inducted into the Canadian Disability Hall of Fame. Congratulations Bernard, on this momentous accomplishment. Bernard continues to exemplify the mission and values of his firm, setting the bar high, while asking everyone to reach it with him. His legacy of giving back is impressive and admirable and for this we would like to express our gratitude to him. Each year the Canadian Disability Hall of Fame recognizes outstanding Canadians who make extraordinary contributions to enriching the quality of life for people with physical disabilities. Alongside Bernard, the other 2015 inductees were Lauren Barwick, a top ranked equestrian and CBC's Rick Mercer, a popular Canadian television personality. The influence of trailblazers such as Bernard Guckstein, Lauren Barwick and Rick Mercer who have committed to making a significant difference in the lives of people with physical disabilities by creating awareness and change is remarkable. ●


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feature

Roll On In BARRIER FREE ENTRANCE SOLUTIONS By Jeffrey Kerr

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ontinuing the theme of my 2015 Spring and Fall articles which discussed the key features in a visitable home and barrier free bathrooms, I would like to focus on barrier free entrance solutions. The entrance to your home sets the stage and creates the first impression for people who use a wheelchair or other mobility device. Ideally a home should have at least one entrance that provides a barrier free entry. Fortunately, builders and contractors have more choices than ever for options to increase access to the home. Consider modifications such as landscaped pathways, ramps, platform lifts, in addition to the options for locations of these changes – front, side, rear of the house and even the garage. Many homeowners worry that some of the changes will negatively affect the look of their home. But today, barrier free entranceways are not only functional but can also be visually appealing. A barrier free entrance to the home includes an accessible path of travel and a zero threshold door. An unobstructed path to the home will minimize or even eliminate the need for assistance. A home with a barrier free entrance has many advantages – and not just for people with disabilities. It is easier to move furniture and baby carriages in and out and eliminates the risk of icy stairs in the winter time. New home builders have an advantage when designing a home, since it’s much easier to design and build a home to be barrier free than it is to retrofit one.

Landscaping Options For existing homes with large front yards, contractors can often develop options through landscaping. Visually, a landscaped pathway that gradually slopes in line with the rising ground can have a beautiful effect. This is accomplished by incorporating a practical design and grading to overcome changes in the level of the property. In addition to increasing accessibility, the landscaping solution increases the resale value of the home.

Wood ramps.

Ramps The most common entrance solution is a wooden ramp. Although much less common, metal ramps are also an option. A variety of ramp configurations can be used including straight, U-shaped or L-shaped. While ramps are not as visually appealing as a landscaped option, the impact can be softened with landscaping over time. A ramp may be the preferred option for practical or financial reasons. There are also temporary, portable or modular ramp options that can work in some situations. The use of a ramp does not have to be restricted to provide access to the front of the house. In some cases, the design may be better suited to a side or back entrance. A professional assessment will be needed to sort out all the variables including the location, slope, length, width, level landings, handrails, and the effects of snow. A ramp that is required to overcome significant changes in level will require a great deal of space. The building code requires ramps to have a minimum of 1 inch rise per 12 inches of length, however, people with limited strength may need a more gradual slope – but remember, the more gradual the ramp is, the longer the ramp will have to be. Some properties simply do not have the required space.

Mechanical Lifts

Landscaped ramp.

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A vertical platform lift, also known as a porch or deck lift can provide another option. These lifts consist of a platform that is raised and lowered by means of an electric gear system. The structure is firmly attached to a reinforced concrete pad on the ground. The lift can actually be less expensive than some ramps and takes up much less room.


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Garage When the front, side or back entranceways are not practical solutions, modifications can sometimes be made within the garage. A professional contractor can determine if there is enough space to accommodate a ramp or platform lift to provide access from the garage to the home. One advantage to the garage option is the fact that wheels stay dry in the bad weather.

Getting Through The Door And one final consideration: getting through the door. Traditional doorknobs can be extremely difficult for some people to use. The solution could be as simple as installing lever handles which require less flexibility and strength to open. An automatic door and lock opener is also an option. A barrier free entranceway to the home will increase accessibility and visitability while adding to the overall property value at the same time. As our population ages, any modifications that make access easier will appeal to a broader market. For more information on buying and selling wheelchair accessible homes, condos and investment properties please contact: Jeffrey Kerr, Broker, RE/MAX Unique Inc. Direct Land Line: 416.424.2222 Website: www.AccessibleHomeFinder.com Email: info@AccessibleHomeFinder.com ●

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Tel (705) 644-1200 fax (705) 646-8845 emptiers@assistivedesigns.com www.assistivedesigns.com Spinal Cord Injury Ontario

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community events

How To Get The Word Out About Your Community Event

By Bria Weaver, Development Officer, Communications event. Ensure you encourage friends to invite people within their More than ever, people in our community are own social circles. choosing to hold their own events to support people with spinal cord injuries through the work of Spinal • Social Media Posts – On your personal accounts post information about your event to help keep it top of mind for your Cord Injury Ontario. We are so thankful. Here are friends and followers. Ask friends (in person, by email or through some tips on getting people to your event. social media) to share your posts. Social media posts that have

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our event date is set, the venue is booked and the entertainment is lined up. All you need to focus on is getting people there. Here are a few ways you can spread the word about your event:

• Facebook Event – Facebook event pages allow you reach a large number of people easily. The event reminder notifications are perfect to gently remind your friends you have an upcoming

UPCOMING EVENT Charity Open Cash Spiel February 27 & 28, 2016, Smith Falls ON If interested, please contact Dan Andress at (613) 283-2999 or Paul Vaillancourt at littlepro59@gmail.com 36

• Outspoken! • Winter 2016

images are more popular than posts without images. Our secret weapon to create engaging graphics (and allows us to add text to photos) is Canva.com, but you can also use Paint, Photoshop and various other free, online graphic tools.

• Event Listings – Most local papers, radio stations and TV stations have a ‘what’s on’ section on their website or in print. Some local radio and TV stations may also mention events on air. A quick Google search will help you find media outlets in your area. Write an exciting, enticing event description, and remember to include all the key details and a contact person in case someone has any questions. Follow these tips and your event will be a bustling experience! What would you like us to write about in regards to Community Events in the next issue? Share your third party event ideas or experiences with us and we may feature them in a future issue of Outspoken! magazine. Email Bria Weaver, Development Officer, Communications at bria.weaver@sciontario.org. ●


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NOT JUST A PRETTY BASE.

The F5 CorpusŽ goes beyond good looks to stretch the boundries of logic. How can a smaller footprint offer greater stability, or a lower seat-to-oor height allow you to reach higher? How can faster still be more powerful at low speeds, or a completely rigid frame offer a stable, comfortable ride? Experience it at permobil.com


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feature

Surgeon Who Became Paralyzed Learns to Operate Again By Dan Thompson

Dr. Ted Rummel thought his career was over when a blood-filled cyst, a cavernous hemangioma, developed on his spine, and then it burst; and consequently, that left him with paralysis.

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espite this, the Missouri Surgeon continued to operate on his patients while using a stand-up wheelchair. It took a year of intense rehabilitation before he was back at work and weaving his magic. To operate on shoulders, the Orthopaedic Surgeon is strapped into the aforementioned upright chair; however, he can also repair knees, elbows and other joints while sitting in his wheelchair.

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“When I'm able to do this and I can get a piece of my life back, it’s huge," Rummel told the Make Medicine Better blog, adding, “It's so special.” Rummel practised more than 1,000 surgeries per year in O'Fallon; however, he had to redefine himself after he was permanently injured. The first surgery he undertook was watched over by another surgeon in case he needed help. But he never did. “One of my first thoughts was, Oh my gosh, my life as I know it was erased,” he said.

“Who you are out of the O.R. and you have to redefine yourself.” Rummel maintains his physical strength with daily exercise; however, he “…found the key was to communicate with family and loved ones. I got to know my family again, and I regret the time I wasted”, he says. “The entire thing has made me phenomenally better with my family. It’s just been a very powerful experience” Specifically, he credits his wife Kathryn. This is yet another example of someone overcoming obstacles to live life to its fullest! ●


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BMI By Dan Thompson

Research into brain-machine interfaces (BMI) is making it possible for those with severe motor disabilities to become mobile and interact with the physical world through telepresence.

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talian and Swiss researchers working at the Ecole Polytechniaue Federale de Lausanne have done a number of studies with “motor-disabled end-users operating different brain-controlled devices…without the assistance of BMI experts.” Approximately half of the end-users mastered their BMI so they were able to maneuver their telepresence robot and do text entry. The goal is to have BMI technologies give end-users who are immobile the means to move around in their homes or institutions and interact with family and society. But in this real world application, the user signals the robot through a brainwavedetecting skullcap. The robot has its own vision control and guidance system and uses that to do route planning and avoid obstacles in its

path. The user sees the world through a webcam and converses through a Skype window. The skullcap is covered with sensors that allow the user to imagine limb movement which then gets translated into basic computer commands – forward, backward, left, right, etc. The infrared sensors on the robot alert it to obstacles allowing it to follow the intent of the user without running into things. Robert Leeb, one of the researchers on the Project, states, “Imagine an end-user lying in his bed at home connected to all the necessary equipment to support his life… with such a telepresence robot, he could again participate in his family life.” How many years will it be before we see wide use of BMI technology? For single-purpose devices such as a robotic arm it may be within a decade. But for a mobile BMI that gives an immobilized person the means to interact with the larger world, we are still a long way from a reliable, affordable commercial technology. Even in one of “The Big Bang” episodes, Sheldon found he was unable to open his own office door. So as promising as the work at the Ecole Polytechniaue is currently undertaking, getting us to a point where people who cannot move will have full freedom of movement through telepresence appears to be many more years away. For more information, go to: http://www.21stecentech.com/mindcontrolled-robot-helps-people-motor-disabilities-world. ●

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Shared Stories of Honour By Sarah McKinnon, Development Officer, Annual Giving

Throughout 2015, I have had the privilege of speaking with people about their lives and asking them who they would like to honour. As part of Spinal Cord Injury Ontario’s 70th Anniversary, we wanted to celebrate the lives of the people in our community by gathering and sharing their stories of honour.

Abdi Zeinab & Team

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Spinal Cord Injury Ontario would like to extend a special thanks to Mary Dufton, who volunteered her time to help with the honour stories. Mary conducted interviews and wrote many stories as part of this project. Thanks Mary!

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’ve spoken with people from across the province, who have been connected with Spinal Cord Injury Ontario in many different ways. The one thing all of these people have in common is their desire to share their story and let others know how much they mean to them. Needless to say, it was an amazing experience. There is a thread that weaves in and out of each story, stitching them together and it’s a passion for life. These stories demonstrate resilience, compassion, and how far we’ve come in 70 years. Dr. Brené Brown (of the infamous TED Talk about The Power of Vulnerability), says that, “courage starts with showing up and letting ourselves be seen.” I want to thank those who have shared their stories with us, for having the courage to show up and tell their stories. I am so grateful for your willingness to share your experiences. The following pages include excerpts from some of the stories we’ve collected. To read the full versions and see of the stories, please visit: www.sciontario.org/honour.

Abdi & Zeinab “We were introduced to Spinal Cord Injury Ontario through a nurse at the hospital. Christine, a Peer Support Coordinator, came to visit Abdi and me. For Abdi, it was important seeing someone like him. She was the first person throughout all this to say anything positive. After hearing for a month and a half bad news after bad news, she put a light at the end of the tunnel. It


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It’s really like a big family, that’s how it feels. We want to honour and extend our sincere gratitude to everyone who has been in our life and helped us through this journey: Christine, Charlie, Maggie and Sharol. was the first time that someone showed us there could be life after a spinal cord injury. It’s really like a big family, that’s how it feels. We want to honour and extend our sincere gratitude to everyone who has been in our life and helped us through this journey: Christine, Charlie, Maggie and Sharol. But we especially want to recognize and honour Sharol. She has done so much and she is so experienced. She knows everything at the tip of her fingers. Sharol is very kind, very resourceful, and very attentive. Even the way she speaks to you; her smile, it makes you feel calmer. It’s so simple, but it matters.”

Stephanie, Regional Services Coordinator, Peterborough Alec Denys is a Peer Support volunteer with Spinal Cord Injury Ontario but has also supported other projects. When I think of leadership, commitment, and leading by example to create change to improve the quality of life for people with disabilities, there are few who have the stamina and dedication that Alec does. I would like to honour Alec because he is a role model to many, with a kind heart and an open mind. I am

When I think of leadership, commitment, and leading by example to create change to improve the quality of life for people with disabilities, there are few who have the stamina and dedication that Alec does.

proud to work with Alec on projects in our community and you’d be hard-pressed to find someone else who understates his own work, while at the same time makes the biggest positive impact on those around him.

Alec Denys. Photo: Clifford Skarstedt, QMI

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Spinal Cord Injury Ontario

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Gayle & Gary Gary Froude and Gayle Dempsey are pillars of the arts and culture community in Port Carling in Muskoka. Their life turned upside down, though, when Gary ended Gayle, Gary and Heather Hollingshead. up in the intensive care unit (ICU) at the hospital because of an unidentified virus. He was totally paralyzed, unable to move anything but his eyes. The exact cause is unknown but is an unidentified virus. Faced with the challenge to adapt to a new way of living, they have approached it with the same vigour as when they were building the arts community. Gary and Gayle met Heather, a Regional Services Coordinator with Spinal Cord Injury Ontario, when Gary was in the ICU. She has been with them on this journey ever since. Although there are many people that Gary and Gayle would like to honour, Heather is at the top of their list. They explain that without her, they wouldn’t have the quality of life that they have now. Gayle and Gary also honour each other. For Gayle, she honours Gary because he’s had the courage and desire to keep going, to keep getting better and to get home. She honours him especially for his resiliency and courage. For Gary, he says, “it would have to be the same for me with Gayle because she’s still here. It’s been a long year and a half road, she’s still here and she’s still at my side. That’s pretty phenomenal, too.”

Penny, Peer Support Coordinator, London I honour the Peer Support volunteers for all of the contributions they’ve made through volunteering. They are the core of the program. Without them, it wouldn’t happen. They are the ones I call after first meeting a new client to set up a match. I am so grateful for their willingness to go out and share their life story. I think what sets the Peer Support program apart is the “it” factor. Our volunteers, and myself, know what “it’s” like to live with a spinal cord injury. It’s the piece between professionals, family members; the “it” that you can’t explain to others, but someone else with a spinal cord injury gets “it.” We get “it!”

Elizabeth Ottawa’s Elizabeth Winkelaar is very active in her community. For more than a decade, she has been a recreational and competitive adaptive sailor and for almost as long, a dancer with the local Propeller

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Dance troupe. Elizabeth sustained a spinal cord injury when she was 18. Elizabeth explains who she would like to honour. “First, I honour my parents for helping me adjust to my paraplegia. They did not waste time on blame or anger. They were very sad and scared, but they rose above that to be there 100 percent for me. They gave me the strength and courage to face the challenges of a new life. Their unconditional love, devotion, sense of humour, and simple hard work gave me the support I needed to approach having paraplegia with a positive attitude. I also honour all of the women with disabilities who have been my friends and mentors throughout the years. Some of these relationships have developed through Spinal Cord Injury Ontario’s Peer Support Program and others have come from sailing with other sailors with disabilities at the Nepean Sailing Club. There is no time too dark or confusing to share with these women. These are true friends; friends who accept me unconditionally and who are there for me by simply making a phone call or reaching out by email. From these women, I have learned to laugh in the face of pain, that all things get better with time, that all things are easier when shared.”

Muniba “My husband, Arshad, sustained a spinal cord injury at work one day three years ago. In a moment, everything changed. I want to honour all of the people who have been by our side and helped us through this experience. We met Charlie, a Peer Support Coordinator with Spinal Cord Injury Ontario, while Arshad was in the hospital. It was a turning point. When Charlie came, I was surprised to see him because it was my first experience seeing someone in a wheelchair and doing everything: driving, having a family, living independently. We became hopeful. Muniba with her family. Charlie introduced us to Stephanie, a Regional Services Coordinator, who would be able to help us get the right equipment, navigate the healthcare system and WSIB. Stephanie also helped us realize it would be possible for Arshad to come home. I want to honour Stephanie because she taught me that we are living the same life as before, just in a different way. I’d also like to honour our friends and Arshad’s sister and brother-in-law. We have survived with the help of our friends and Arshad’s family. They have been a real blessing. Finally, I want to honour Arshad, my husband. He has had to experience all of this and he is still there for us. I am so grateful that he’s home. He’s spending his time with us and can see our kids grow.

Marg

Elizabeth, Photo Credit Propeller Dance.

• Outspoken! • Winter 2016

I was in a pretty dark place after my surgery. There were complications and through the procedure I sustained paralysis. I was having trouble accepting the reality that I wasn’t going to wake up and get out of this nightmare. While I was recovering in the hospital, Matt came in to talk to me. He’s a Peer Support Coordinator with Spinal Cord Injury Ontario. A week later, I met his colleague Darren, a Regional Services Coordinator. I’m so glad they


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came into my life when they did. I want to honour Matt and Darren because they mean so much to me. They are both so into their jobs and helping people; there should be more people like them in the world. I know that I can trust them and count on them. Matt and Darren should absolutely be honoured because if you’re talking about heroes, these two are heroes in my life.

Joey & Vanessa In 2009, when he was just 22 years old, Joey Desjardins sustained a permanent spinal cord injury while dirt biking with his friends. At that time, he was working in construction and recently engaged to be married. “I had no insight on life with and after a spinal cord injury. Chris Bourne and Angela Clair, Regional Services Coordinators with Spinal Cord Injury Ontario, showed me that I could have a full life. I was introduced to wheelchair sports such as alpine sit skiing, water skiing, wheelchair basketball and competitive hand cycling.” This was really important for Joey who had always been athletic. Although he is grateful to Chris and Angela for their support, the one person he honours most of all is Vanessa, his wife of five years. They met in high school, long before his injury and have been together ever since. “She doesn’t get much attention, but she has a bigger role in my life than people think.” Joey honours her by being loving and supportive and by always remembering how important she has been and continues to be in his adapting to having a disability. Vanessa motivated him to stay positive, and to never lose hope. She has been with him through his difficult rehabilitation and encouraged his pursuit of education and sports. Together, they are strong, dedicated and ready to face whatever lies ahead.

Diane, Regional Services Coordinator, Sault Ste. Marie There are two groups of people who I would like to honour. The first group is every client that I’ve ever worked with. I learn so much from each person, whether they have a new or an existing spinal cord injury. Although clients’ lives may be similar when it comes to the level of their injury and ability, each story is so unique. I’m very proud to be part of the journey and see people achieving their goals. A spinal cord injury is something that can turn your world upside down for sure, but if you can begin to look at things differently, it presents an opportunity for personal growth. I’ve learned a lot along the way and I’m very grateful because when people share their stories and successes with me, it helps me provide even better support to the next person. The second group I would like to honour are the people who participate in our coffee social. Every month, we meet at the Sault Ste. Marie Spinal Cord Injury Ontario office. It’s so nice to see people in the community come together and provide support to each other. I also think it’s a really cool thing that it continues beyond our coffee group, when people run into each other at the mall or at community events. There is so much to be said for this kind of peer-to-peer connection. You could never put a dollar value on that.

Nigel Honours Larissa There are many people with spinal cord injuries who I could honour. I have had the privilege of acting for a large number of people with spinal cord injuries through my occupation as a personal injury lawyer. I have seen too many young people in their prime who have had to face the challenge of rebuilding their lives after a spinal cord injury and yet they have found a way to continue and be productive. I have had the honour of representing individuals, such as a young hockey player who sustained an injury and has

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gone on to be a multimedalist winner in the Paralympics for wheelchair rugby. Similarly, I have represented a high school student who lost the ability to use his legs due to an accident during a wrestling match in gym class. He has taken up sledge hockey to replace the athletics he can no longer do and courageously moved forward with his life. But for this article, I want to honour Larissa Gerow. I met Larissa for the first time when she was in the Critical Care Trauma Unit at the Larissa Gerow and Nigel. hospital. She was, and still is, a beautiful young woman of only 26 years Whenever I saw her, and of age when the driver whenever I still see her, Larissa is always smiling of a vehicle who had failed to look to his right and has an optimistic outlook on life. She never before making a rightlet her disability stop her hand turn. This caused from travelling to various her to fall from her bicycle, resulting in quad- parts of the world despite the difficulties riplegia. involved in doing so. There were no outward signs of a physical injury; no bruising, no cuts or scrapes, and I found it incredible to believe that after something that happened in a moment, she would have to adjust to life with quadriplegia. As I came to know Larissa and work with her for many years, what most amazed me about her was her unbelievably positive outlook on life and her optimism despite her injury. I am ashamed to say that here I was, a healthy individual who is able to walk, to run, to bike, to dance, and to hug my loved ones, and I had a more pessimistic outlook on my own life than Larissa did on hers. Whenever I saw her, and whenever I still see her, Larissa is always smiling and has an optimistic outlook on life. She never let her disability stop her from travelling to various parts of the world despite the difficulties involved in doing so. For example, on one occasion, she had to sit on an airplane for six hours until the airline found staff to assist her in getting off the plane. For another trip, she had the tenacity to persevere and search out what ended up being one of only two vans available for rental in France that were equipped to be used by someone using an electric wheelchair. She has been part of a peer support program to help other individuals with spinal cord injuries to realize that there is, in fact, life after sustaining a spinal cord injury. My hat goes off to Larissa, not only because of the great things that she has been able to accomplish, but because of the things that she has taught me about life, about living, and about what's important. ●


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community events

Best Birthday Present Ever! By Chris Bourne, Regional Services Coordinator

What girl doesn’t look forward to her 7th birthday party? Like any other little girl, Evelyn Davies loves birthday parties and was especially excited for her big day.

H

er excitement was partially because all of her friends were joining her to celebrate, but it was also in anticipation of something very generous that she had planned as a follow up to her party. Evelyn’s mom, Esley Albert, is a Physiotherapist at the Ottawa Hospital Rehabilitation Centre and Evelyn recognized that her mom

works in a rehabilitation setting served many people with spinal cord injuries. Evelyn has always been interested in “helping people who use wheelchairs.” She saw her birthday party as a great opportunity to do this. While she could have asked for some new ski boots, art supplies or other fun things for her birthday, Evelyn invited her friends and asked them to bring a donation. Her plan was to collect money to donate to an organization that works with people who use wheelchairs; she chose Spinal Cord Injury Evelyn has Ontario. Acknowledging that Spinal always been Cord Injury Ontario’s Ottawa office interested in has some clients who are interested “helping people in becoming more active and require who use wheelspecific knowledge and equipment chairs.” She saw to do so, Evelyn decided that her her birthday donation would go towards subsiparty as a great dizing their registration costs for the opportunity circuit training class that her mom to do this. helps run. How big-hearted is that? Evelyn raised $60 at her birthday! Stories like this demonstrate how Spinal Cord Injury Ontario reaches far beyond the clients the organization serves, and has the support from donors big and small. Without the patronage of generous people like Evelyn Davies, enriching the lives of our clients and supporting them to address issues that have arisen as a result of their injuries, would not be possible. Evelyn’s birthday party also shows that no fundraising event is too small. Thank you so much Evelyn! ●

Spinal Cord Injury Ontario

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Advocate for Children with SCI Achieves Milestone Goal continued from page 23

Nick Schoenhoff, Diane Talbot-Schoenhoff’s Son The impetus for Diane’s fight to help provide children and youth with spinal cord injuries access to specialized rehabilitation to make the most of their recovery was her son Nick. On February 23, 2005, Nick Schoenhoff broke his C5 vertebrae in a snowboarding accident north of Toronto. He was airlifted to Sick Kids Hospital where he underwent seven and a half hours of reconstructive surgery to fuse his C4, C5 and C6 vertebrae. He had sustained a serious spinal cord injury and was diagnosed with quadriplegia. Doctors told him he’d never likely move again from the neck down, but could still live a productive life using a wheelchair. He was 13 years old at the time of the injury. After two weeks in intensive care, Nick was transported to inpatient rehabilitation hospital where he lived for nine months until he was neurologically stable enough to return home. Slowly, muscle by muscle, he began to move again in his therapy sessions and could take a few steps with a walker. At discharged time, his parents were given a prescription to purchase a power wheelchair. Since no outpatient rehabilitation was routinely available in tertiary spinal cord rehabilitation centres in the greater Toronto area, the family was told to seek private therapy. Convinced that more recovery was possible, Nick’s parents sought additional, specialized physiotherapy to further his mobility and improve his rehab outcome. Today, Nick walks with one cane at home and uses a manual wheelchair for greater distances. ●

If you are a parent caring for a child with a severe disability, you may be able to receive some financial help. The government’s Assistance for Children with Severe Disabilities Program helps parents with some of the extra costs of caring for a child who has a severe disability. Who can get help? A parent or a legal guardian whose child: • is under 18 years of age; • lives at home; and • has a severe disability may be eligible to receive help under this program depending on the family’s income.

GUIDE TO ADVERTISERS Spinal Cord Injury Ontario thanks its advertisers who have made it possible for the production of this issue of Outspoken! For information about advertising in Outspoken!, email Bev Jenkins at bev.jenkins@sciontario.org LEGAL Gluckstein & Associates www.gluckstein.com Howie Sacks & Henry LLP www.hshlawyers.com Judith Hull & Associates www.judithhull.com McLeish Orlando LLP www.mcleishorlando.com Oatley, Vigmond Personal Injury Lawyers LLP www.oatleyvigmond.com Thomson Rogers, Barristers and Solicitors www.thomsonrogers.com

MOBILITY & MEDICAL SUPPLIES Assistive Designs www.assistivedesigns.com Frog Leg Mobility Inc. www.froglegmobility.com Permobil www.permobil.com RGK Wheelchairs Inc. www.49bespoke.com SCI Supply Inc. www.scisupply.ca

REAL ESTATE REMAX Unique Inc., Brokerage www.AccessibleHomeFinder.com

STRUCTURED SETTLEMENTS Henderson Structured Settlements LP www.henderson.ca

For more information on provincial funding please visit:

TRANSPORTATION

www.children.gov.on.ca/htdocs/English/topics/specialneeds/ disabilities/index.aspx

Uber Canada Inc. www.uber.com/app

For more on financial resources, please visit: www.cheo.on.ca/uploads/13463_financial_resources.pdf.

WELLNESS CENTRES Walk It Off Spinal Cord Recovery & Wellness Centre www.walkitoffrecovery.org

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LIFE ISN’T CHEAP View Jim’s touching reunion with Rory at hshlawyers.com/reunions

It’s a cold reality: the survivor of a catastrophic incident will require a huge sum of money over the course of their life for rehabilitation and care. That’s why we dedicate all of our experience and skill to pursuing the maximum award in every one of our cases. In addition to providing compassion and support for our clients, we fight for their lives. Literally. Proud Sponsor of SCI Ontario’s Peer Support Program

OFFICES LOCATED IN TORONTO AND ACROSS ONTARIO

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