Spinal Columns Spring/Summer 2016

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

Spring/Summer 2016

columns spinal

Spinal Cord Injury Alberta

The Honourable Kent Hehr

The POWER of Showing Up

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Contents Spring/Summer 2016

Editor Betty MacIsaac

Assistant Editor Zachary Weeks Layout/Design Megan Hoskin

Spinal Columns is published twice a year by Spinal Cord Injury Alberta.

Advertising rates available upon request. Ideas, submissions, requests, suggestions and letters are always wel-

COVER STORY

DEPARTMENTS

26 The Power of `Showing Up The Hon. Kent Hehr, MP on getting back into the game after spinal cord injury

by Heather Lissel

come. Address them to: The Editor, Spinal Columns Spinal Cord Injury Alberta

Back At It Vitamins and Supplements Nutrition Corner Stay Healthy and Active

#305, 11010-101 Street Edmonton, Alberta T5H 4B9 (780) 424 - 6312 Material printed in Spinal Columns may not be reproduced without written permission from

FEATURE STORIES

Forging a New Path

by Spencer Knight

Spinal Cord Injury Alberta. We neither

The Need for Independence Opening Doors to Visitability AADL Supplies

Skywalk Fun Rocky Mountain Blues

endorse nor guarantee any of the products/companies before purchase.

Spinal Columns is available in

New Wings

alternate formats by contacting our office as listed above.

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Flat on Your Back

by Spencer Knight

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

Think Positive

by Heather Lissel (part 2)

www.sci-ab.ca

Cover Photo: The Honourable Kent Hehr and his partner, Deanna.

Stemming the Hype Instant Diagnosis

From My Perspective

editorial

O

ver the past two years we have been using these three powerful words “Adjust - Adapt –Thrive” to describe the purpose of our programs and services. Through client and peer services we aim to support persons with new injuries to adjust to the many changes in body function that can

impact their health and how they may resume their roles within family and community. With the sup-

port of family, staff, volunteers and the community at large we believe that persons with disabilities can thrive in their communities and contribute to the economic and social fabric of Alberta. Adjustment and adaptation is not only important for individuals/families that have experienced catastrophic injury, but also for organizations such as SCI Alberta if we are to thrive. Here are some examples of how we work hard to adjust and adapt to change.

Over the past few years revenue sources have been fluctuating related to changes in the economic environment. This has caused us to regularly adjust how we deliver our programs and services. For example we have co-located with other organizations in most of our regional offices. This has proved beneficial as it allows us to more easily partner with other agencies around activities such as peer events as well as reduce our overhead costs. We have also piloted a couple of home based offices. We have also adapted by moving from a traditional phone system to a cloud based system. Our new phone system connects to our computer rather than a phone line and is fully integrated with the computer. It gives us the added advantage of connecting to all staff through one phone directory, reducing administrative costs for reception activities and long distance charges. Phone communication is enhanced as we can now see as well as hear each other. It allows staff and volunteers to video conference at significant savings vs travelling for group meetings. For example our Board can now meet virtually from the comfort of their home computer and still see each other for enhanced communication, yet experience significant savings to their time. Of course, with the adoption of any new technology, we encountered growing pains as staff learned to use a more complex system. Moving forward, staff now have the ability to have a visual and auditory connection with clients and volunteers thereby enhancing communication and reducing travel costs.

Another example of adapting is our move to online training for peer mentors. Historically, peer training required time and travel by interested peer volunteers. Over the past year SCI Alberta, in partnership with the SCI Federation and Laval University (Center for Interdisciplinary Research into Rehabilitation and Social Integration), have worked together to develop an online training curriculum which will be evaluated by researchers for its effectiveness in knowledge transfer. This new interactive online training can be taken at a time and location (home computer) convenient to the individual interested in becoming a peer volunteer. Again, this will enhance our ability to reach out and support our members.

SCI Alberta is also proud to be a partner in the creation of an expanded SCI registry project. Historically the Rick Hansen Spinal Cord Injury Registry was implemented in acute care and rehabilitation centers across Canada to collect data that would facilitate Canadian research into the care and treatment of persons with traumatic SCI. The Alberta registry project aims to enhance data collection by including questions about quality of life and community participation at intervals throughout the life span. SCI Alberta staff will be trained to assist in the collection of this data as part of their usual interviews with clients and they will ensure that if issues are identified, appropriate referrals are made to health care experts. The Community Follow-up portion of the registry will provide important information to policy makers within the provincial government. These are just a few examples but we know that we will have to continue to adjust and adapt if we are to thrive and continue to be relevant to those who look to us to

Head Office #305, 11010-101 street Edmonton, Alberta T5H 4B9 T: 780.424.6312 F: 780.424.6313 edmonton@sci-ab.ca Teren Clarke, CEO Calgary Office 5211 4 Street NE Calgary, AB, T2K 6J5 T: 403.228.3001 F: 403.229.4271 calgary@sci-ab.ca Red Deer Office T: 403.341.5060 F: 403.343.1630 reddeer@sci-ab.ca Grande Prairie Office T: 780.532.3305 F: 780.539.3567 grandeprairie@sci-ab.ca Lethbridge Office T: 403.327.7577 F: 403.320.0269 lethbridge@sci-ab.ca Lloydminster Office T & F: 587.410.2594 lloydminster@sci-ab.ca Medicine Hat Office T: 403.504.4001 F: 403.504.5172 medicinehat@sci-ab.ca St. Paul Office T & F: 587.410.2516 stpaul@sci-ab.ca Fort McMurray T & F: 587.410.2603 fortmcmurray@sci-ab.ca Spinal Cord Injury Alberta Toll Free: 1-888-654-5444 www.sci-ab.ca Find us on Facebook and become a fan!

Watch videos on our Youtube channel SCI Alberta Board of Directors Bryce Clarke - Edmonton Margaret Conquest - Edmonton Shamel Elsayed - Calgary Kent Hehr, MP - Calgary Steven Jeffrey - Fort McMurray Ron Jewitt - Edmonton Paul Nemetchek - Edmonton Cecil Pizzey - Grande Prairie Ray Royer - Calgary Souheil Saab - Calgary Christopher Schamber - Lethbridge Linda Seitz - Medicine Hat Ned Shillington (Chair) - Calgary Eleanor Sugarman - Red Deer Dale Williams - Grande Prairie Mission Statement To empower persons with spinal cord injuries and other physical disabilities to achieve independence and full community participation.

impact individuals and communities! Please know that we always welcome your ideas and responses!

Teren Clarke | Chief Executive Officer

4

Spinal Columns

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general news

News You Can Use Financial Assistance for Pet Care/Vet Services

If you use a companion animal you may want to check out the services provided by the Alberta Helping Animals Society. Their mission is to create opportunities for vulnerable people to access veterinary care and other services for their companion animals.

Find out more at 587-338-8668 or

Home Accessibility Tax Credit (HATC) The Home Accessibility Tax Credit (HATC), announced in the 2015 budget takes effect in 2016. The non-refundable tax credit applies to the total qualifying expenses up to $10,000 per year, which would result in a maximum non-refundable tax credit of $1500 ($10,000 x 15%). If you are planning to do home renovations and if you’re a senior or a person with a disability, or family member who lives with them, you may want to check into this further. To find out more,

Awards Luncheon and Notice of Annual General Meeting Join Spinal Cord Injury Alberta (SCI Alberta) at the Annual General Meeting (AGM) and Awards Luncheon on June 11, 2016 at the Sheraton Red Deer Hotel, 3310 50 Avenue, Red Deer. The Awards Luncheon will take place at 12:00 noon. and the AGM will take place at 1:30 p.m. With respect to the AGM and nominations to the Board of Directors of SCI Alberta, please forward your nominations to the Chair of the Nominating Committee, c/o SCI Alberta at the Edmonton office. Nominations must be in writing and signed by five members of the association at large, contain the nominee’s written consent, and be received at the Edmonton office 48 hours prior to the start of the AGM. For more information, contact teren.clarke@sci-ab.ca or 587-410-2563.

Spring/Summer 2016 Issue

7

recognition

Staff Profiles

Stephanie Myrick

My name is Stephanie Myrick and I am the Regional Program Coordinator in Fort McMurray. I moved here from St. John’s NL after getting my diploma in Therapeutic Recreation in December of 2012 and started working with SCI Alberta in February of 2013. I love my job and I hope to continue to raise awareness of the issues that affect people with disabilities and make a difference in the community. It took me a little while to adjust to Fort McMurray but I was lucky enough to have my sister and her husband here to take me in at first. I still miss my family back east, particularly my grandmother, but I’m content and happy to stay here until I can retire down south.

Note: In light of the recent Fort McMurray wildfire, we are relieved to say that at this point, our office and Stephanie’s home were spared. While rebuilding of this close knit community takes place, Stephanie will continue to serve her clients and will work from our Red Deer office in the interim.

Kirk Reynolds

Kirk Reynolds is the Manager of Programs and Services in the Calgary office.

He comes to SCI Alberta with an extensive background in sports, business and marketing after a successful career as an Olympic athlete, Manager of Player Development at Hockey Canada, Marketing Manager at Tim Hortons and Executive Director of a not-for–profit association with 13,000 members. “The SCI community has been a breath of fresh air. Everyone is so positive and engaging. I love coming to work every day. We have a great team here and throughout the Province, also the clients who come to the office to visit always leave me with a smile on my face.” The team at SCI Alberta (Calgary) has just wrapped up a successful year-end report and is now busy working on sponsorships with our partners for the upcoming fiscal year to provide greater programs and services to our client base in 2016. In his spare time Kirk enjoys reading, social media and spending time with his family, including wife JoAnne and daughters Aubrey and Vanessa.

Jacqueline Jewitt

I’m Jacqueline Jewitt and I am the Special Event Coordinator in Edmonton. I started here in 2014 as a summer student for our golf tournament. Currently, I also plan our Red Carpet Affair and other smaller events as well. Working here has taught me many new skills and allowed me to grow as a person. The people I have met through SCI Alberta have shown me that kindness and selflessness do still exist. I am also in my last semester of my Business Degree at the University of Alberta. In my spare time I do not enjoy studying, but it presently takes up all of my free time that I’d much rather be spending with my family, boyfriend, or on real hobbies!

8

Spinal Columns

nutrition & active living

Back At It

by Kasey Aiello

I

t has been such a great feeling

daily activities, in addition to feed-

tritionist. The goal of this program is

getting back to work after taking

ing and caring for my little guy. Ev-

designed to help you live a healthier

one year off for maternity leave,

ery time I thought I had things kind

and active lifestyle by making small

even though it was probably the hard-

of under control, things changed and

steps to create positive change. The

est year of my life except after my in-

the routine evolved into something

services we offer are:

jury. Honestly though, I believe deal-

completely new and different. If I’ve

ing with my injury has helped me tap

learned anything, it is to expect the

into my creative side and in turn I can

unexpected and that it is absolutely

• Personalized meal plans

be more adaptive in my surround-

crazy how little sleep a person can ac-

• Grocery store tours

ings, even when it comes to everyday

tually function on.

• Monthly workshops

• One on one nutrition counselling and goal setting

parenting challenges. Having a sup-

Getting back to my pre-baby

• Cooking classes

portive partner and family has also

routine has definitely been interest-

been the key to my success so far and

ing and my focus has been on trying

For a limited time we will be of-

I would not be doing this well with-

to stay healthy and to exercise when

fering a FREE Initial Assessment and

out them. Parenting with or without

and where I can. Organization is one

a weekly basic meal plan to get you

a disability is not always easy, but it

key to having successful weeks and

started, regularly priced at $25.00.

is entirely possible for many people,

I accomplish this by meal planning.

Prices range from $25-$75 a

including myself.

It helps to alleviate a bit of stress on

month, very affordable quality nutri-

Looking back I was very lucky

week nights and is great for saving

tion services.

to have a healthy and “normal” preg-

money when you have leftovers for

nancy despite being a C6-7 incom-

lunch the next day.

plete quadriplegic and even managed

Here in Calgary at SCI Alberta we

to have a quick and safe delivery. The

have recently started to provide Nu-

hardest part after having a baby was

trition Services and I am beyond ex-

probably regaining my energy to do

cited to be the in-house Certified Nu-

Spring/Summer 2016 Issue

Please contact kasey.aiello@sci-ab.ca for more information about in-house and distance nutrition services we can now offer you.

9

nutrition & active living

Vitamins & Supplements Fast Facts on Vitamin D Vitamin D's primary role is to support the development and maintenance of bones and teeth.

Critical for the absorption of calcium and bone health.

Helps stimulate the immune system to fight infections.

The lack of Vitamin D can contribute to osteoporosis, depression, weakened immune system and susceptibility to illness.

Vitamin D deficiency is common, especially in the elderly, infants, people with dark skin and people living at higher

Eat Good Fats

latitudes or who get little sun exposure, especially winter

Sixty percent of your brain is made up of fats. People gener-

months.

ally do not eat foods high in essential fatty acids (good fats)

Best taken in supplement form as minimal amount is obtained from food.

which are vital for brain health and function. Essential fats can help boost your brain’s ability to make serotonin, as well as other neurotransmitters. A diet void or deficient in good

Food sources: Cod liver oil, eggs, goat’s milk, tuna, salmon

fats can alter nerve structure, fluidity and function, and this

and sardines.

in turn can negatively affect your mood.

800-2000IU of Vitamin D per day but consult with your doctor to be sure you are getting the right amount.

One particular essential fatty acid which is important for your brain health is DHA (docosahexaenoic acid). Research shows that people on anti-depressant medication who persisted in

Vitamin D may interact with some medications, including

having significant symptoms of depression experienced ma-

steroids and corticosteroid medications, weight loss drugs,

jor improvements when supplementing with omega-3 fats

diuretics, cholesterol-lowering medications, medications

with a high DHA content.

used to prevent and control seizures. Consult with your

*Patrick Holford 2004

health care professional if you are taking these medications.

Good sources of omega 3 fatty acids are walnuts, flax, hemp and Sourced from both and combined Kylie James, B.Sc, (O.T.), CNP and Joanne E. Smith, B.A., BRT Dip, CNP http://www.pva.org/atf/cf/%7BCA2A0FFB-6859-4BC1-BC96-6B57F57F0391%7D/ Eat%20Well%20Live%20Well%20with%20Spinal%20Cord%20Injury.pdf

pumpkin seeds. Foods high in DHA include salmon, mackerel, herring, sardines, anchovies, tuna, marine algae and eggs. Bad fats such as trans fats, hydrogenated oils, margarine, processed and fried foods interfere with the body’s ability to use the good fats and can displace good fats from the brain.

http://www.medicalnewstoday.com/articles/161618.php Note: Any medical information published on this website is not intended as a substitute for informed medical advice and you should not take any action before consulting with a health care professional.

10

Sourced from Eat Well, Live Well with Spinal Cord Injury Kylie James, B.Sc, (O.T.), CNP and Joanne E. Smith, B.A., BRT Dip, CNP

Spinal Columns

Thank You 2015 GOLF TOURNAMENTS in support of SCI Alberta

EDMONTON

AUGUST 27 - GLENDALE GOLF AND COUNTRY CLUB

GOLF CLASSIC

South Edmonton Common

RED DEER

AUGUST 14, 2015 - RIVER BEND GOLF & RECREATION AREA

RED DEER HOTEL & SUITES

THANK YOU to our many sponsors, golfers, volunteers and supporters

Nutrition C o r n e r

nutrition & active living

YYC Growers`Harvest Box

The YYC Growers’ Harvest Box offers a weekly selection of locally grown produce. Every week for 16 weeks over the summer, starting in June, you can receive a Sample Calgary CSA Farm Sharebox of freshly harvested produce.

They have various locations for pickup and a range of purchase options. Visit their website at http://www.yycgrowers.com

Check out these recipes

Avocado and Grapefruit Salad (Serves 2)

1 pink grapefruit

Segment grapefruit over a bowl to catch any juices and squeeze excess juice from the mem-

1 tsp toasted sesame oil

branes.

1 tsp extra virgin olive oil 1 ttsp maple syrup Freshly ground white pepper Sea salt

Use 1/4 cup of this juice for the dressing, whisking it with olive oil, sesame oil, maple syrup, a pinch of white pepper (about 2 ground peppercorns or 1/16 teaspoon), and a pinch of sea salt. Taste and adjust seasonings, if desired.

1 fennel bulb, thinly sliced

Gently toss fennel and pea shoots in half of the dressing. Arrange on two plates, top with

2 cups pea shoots

grapefruit and avocado, and drizzle remaining dressing over the fruit.

1 avocado, sliced

Slow-Cooker Chicken Burrito Bowls (Serves 6-8) 1 to 1 1/2 pounds boneless

2 teaspoons salt

Optional toppings:

salsa

skinless chicken breasts, chicken

1 teaspoon cumin

shredded cheese

hot sauce

thighs, or a mix

1 cup brown rice

chopped cilantro

diced green onions

1 14.5-ounce can diced tomatoes

1 15-ounce can black beans,

sour cream

shredded lettuce

1 cup chicken stock, divided, plus

drained and rinsed

diced avocado

more if needed

1 cup frozen corn

2 teaspoons chili powder Combine chicken breasts, diced tomatoes, 1/2 cup chicken stock, chili powder, salt, and cumin in the bowl of a 2 1/2 to 3 1/2-quart slow cooker. Make sure chicken is covered, and add additional stock if needed. Cover with lid and cook on low for 3 to 4 hours. Remove lid and add rice, black beans, frozen corn, and remaining chicken broth. Replace lid and continue cooking on low for another 3 to 4 hours. Check rice periodically in last hour of cooking, stirring once or twice to make sure rice cooks evenly and adding more chicken broth if mixture seems dry. Cooking is done when the rice is tender — if the rice is done while there is still liquid left in the slow cooker, remove lid and cook on high to let liquid evaporate.

Use two forks to shred the chicken into bite-sized pieces. You can do this either in the slow cooker itself and then mix it into the rice, or you can transfer the chicken to a cutting board if you prefer to keep it separate. Taste the burrito mix and stir in more salt or other seasonings to taste. Serve burrito bowls with a selection of toppings. The burrito mixture will keep for 1 week refrigerated or for 3 months in the freezer. This recipe makes about 7 total cups of burrito mix. Total cooking time from start to finish is 6 to 8 hours.

12

For both recipes and more, Spinal Columns

Gala Sponsor Sponsors

Thank You

LĂŠsions MĂŠdullaires Alberta

Patrons

Award Winners

Devoted supporters, the Wickman Family

Carola Cunningham, representative from Ambrose Place

Special Guests

Title Sponsor James H. Brown Guest Speaker Souheil Saab and his family

Spinal Cord Injury Alberta

Red Carpet Affair 2016

held at the Shaw Conference Centre on Friday, March 18, 2016

Without your support, we could not have raised over $40,000 in support of Albertans with spinal cord injury and other physical disabilities!

5 Star Sponsor

4 Star Sponsor

3 Star Sponsors

Print Sponsor

Raffle Sponsors

Photography

Volunteer Sponsor

Media Supporters

Stage Production

Decor Sponsor

Corkage Sponsor

Major Auction Donors

Please join us at the Ron Hodgson Chevrolet Buick GMC Golf Classic, August 11, 2016 at the Glendale Golf & Country Club. Visit www.sci-ab.ca or contact events@sci-ab.ca for registration and sponsorship information.

nutrition & active living

Resources to Help You and Your Peers

Stay Healthy and Active

by Marie-Josée Perrier & Spero Ginis

M

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 (SCI).

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” 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 evidence-based 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.

Members assist each other with their strength training at MacWheelers

14

Spinal Columns

nutrition & active living

“These resources are great, but I’d rather speak to a peer with an SCI”

“I’m already active – and I want to help others become physically active”

If you want to speak with a peer about physical activi-

If you are living with an SCI and you want to share your

ty, Get In Motion is a service that offers free physical activity

passion for physical activity with others, then the Active Liv-

counseling over the telephone to Canadians with SCI, Mul-

ing Leaders peer mentor training program is for you. The

tiple Sclerosis (MS), and Cerebral Palsy. If you decide to try

purpose of Active Living Leaders is to provide information

Get In Motion, when you register you will receive a welcome

and the skills for people with SCI and other physical disabil-

package that has an SCI Get Fit Toolkit, a sheet that outlines

ities to effectively promote physical activity to their peers.

safety tips for physical activity, addressing topics such as au-

The training program is composed of three parts, all online at

tonomic dysreflexia, and a set of resistance bands that you

www.activelivingleaders.ca, that can take as little as an hour

can use to do strength training exercises at home. Our coun-

and a half to complete. As this is an online program, you dic-

selors are trained to help in many ways and can address sev-

tate the pace of your learning. By the end of the first part of

eral topics, including:

the Active Living Leaders Peer Mentor Training Program, you

• Effective goal-setting and time management

will know the latest evidence-based information on physical

• How to find online and community or resources that can

activity and sport participation for people with SCI, as well

help you reach your goals

as the resources that are available to help people stay active.

• Brainstorming ways to overcome physical activity barriers

The second part of Active Living Leaders is unique and fo-

• How to exercise safely and maintain motivation

cuses on introducing peers to transformational leadership,

If Get In Motion sounds right for you, you can register for

which is a leadership style that helps individuals maximize

the service at: http://sciactioncanada.ca/get-in-motion.php.

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.

Students and members participate in a group fitness session at the Physical Activity Centre of Excellence at McMaster University

Spring/Summer 2016 Issue

15

accessibility/independence

The Need For Independence

M

by Ron Wickman Ron Wickman is a well-known Edmonton architect who has been a leading advocate for barrier free design in buildings and landscapes.

[Part 3 of a 4 part series.]

y own experience with the

enough to accommodate any future use;

desire to include a curbless shower. The

design and construction of

even if a person with a disability needs a

key here is to frame the shower area or

the curbless shower area

caregiver in the shower area too. When

entire bathroom, as I typically do now,

began in the early 1990’s. This typical-

designed right, this type of wetroom

with smaller joists than the rest of the

ly meant a renovation to a bathroom

will never need to be renovated.

floor. In this way we create a type of

in a single-family detached home.

Today, when I am the architect of

‘cake pan’ to fill in with light weight

Most homes were older and floors

a residential project, I design the bath-

concrete, and slope to a drain. It is

were framed with dimensional lumber

room to be a large wet room; and it is

critical to get this design correct in the

(2 x 10’s and 2 x 12’s). In these cases,

easy to convince my clients that this is

beginning. It is very difficult and expen-

we were able to trim the floor system

the best way to go, whether they are in

sive to create a curbless shower when

to allow for the curbless shower area.

a wheelchair or not. I also prefer to cus-

the bathroom floor is level with the rest

Today, floor systems are framed with

tom build the curbless shower area as

of the floor.

engineered joists; these joists cannot

opposed to a pre-built unit. The custom

I often work with families who

be trimmed down, therefore making

built shower area can be as big as we

simply want me to look over new house

the curbless shower retrofit much more

want to make it, can take on any look

difficult. This is why it is best to con-

we want and frankly, looks much better

struct a curbless shower area in every

than a pre-built unit.

new single-family detached home. Ren-

I have completed several group homes

ovations are getting more and more ex-

for adults with physical and cognitive

pensive and difficult.

disabilities. In these cases, the acces-

My own experiences confirm that

sible bathrooms must accommodate a

“curbless shower” areas were once

greater variety of individuals with dif-

thought of as only used by persons

ferent disabilities. These washrooms

with disabilities, especially individuals

must offer residents greater choice on

who use wheelchairs. We once spoke of

how to bathe. I am often asked to design

“roll-in showers”, implying it was for

spaces for individuals who have recent-

the use of individuals in wheelchairs

ly been disabled, and who use wheel-

only. Today, the term “curbless shower”

chairs, when their future is unknown.

better defines that this type of shower is

With therapy, they may walk again. The

better for everyone. The curbless show-

family begins to think of resale value,

er promotes safety, independence, and

and want a home that is designed to ap-

flexibility. One can shower while stand-

peal to the vast majority of the buying

ing, sitting on a shower seat or even

public. In this way the bathroom, that is

plans that they have already had drawn

sitting in a wheelchair; and there is no

really a large wet room, must appeal to

up. When I consult in these cases, I im-

curb to trip over. When the bathroom is

all potential users.

mediately look at the bathrooms. My

The above image of the bathing area highlights the situation. There exists a bathtub, a 5’-0” x 5’-0” curbless shower area, and a ceiling lift to carry one from a wheelchair into the tub. This area accommodates as many people as possible in the best way possible.

designed and constructed to be one big

I have completed many new homes

first recommendation is to construct the

wetroom, the shower area can be large

for persons with disabilities with the

bathrooms as wet rooms, so the shower

16

Spinal Columns

accessibility/independence areas may be curbless. Perhaps, those

wheelchair, and as he neared 60 years

who would benefit most from curbless

of age, he began experiencing shoulder

showers are our senior population.

problems. He was no longer able to eas-

Bathing can become much more diffi-

ily transfer in and out of his car and in

cult, more time consuming and more

and out of the bathtub. He traded in his

dangerous for people as they age, and

car for a van that he could drive from

acquire mobility limitations. Bathing

his wheelchair. We also modified his

is an everyday morning ritual for most

bathroom by adding onto the home a

adults. Falls while bathing become a

large curbless shower. I remember him

common occurrence for people as they

telling me that he would alternate be-

age beyond 65. Canadian data reported

tween the bathtub and the new shower

by the Public Health Agency of Canada

area. However, after his first shower,

(2005) shows that falls are the second

he told me that he would never take a

leading cause (after motor vehicle acci-

bath again. The new van and curbless

dents) of injury related hospitalizations

shower helped my father maintain his

for all ages; and almost 62% of inju-

independence. I started to believe that

ry related hospitalizations for seniors

my father would soon be in need of a

resulted from falls. Falls that result in

power wheelchair, again to allow him

injury are not seen as a major problem

to maintain independence. Sadly, he

because they happen in isolation, most

passed away only a few years after we

often inside the home and are consid-

finished the bathroom modifications.

ered to be individual problems. This is

Looking back, I now realize that my

why so many seniors who have been

father’s attitude towards aging was no

bathing all their lives continue to bathe

different than most people as they age,

even though it is more difficult and un-

whether they are in a wheelchair or not.

safe for them. They simply do not want

Once individuals become comfortable

to change the way they have tradition-

with performing certain activities, they

ally bathed. A change to showering rep-

are not always accepting of doing these

resents something they are not as com-

activities in an alternative way.

fortable with, and that some of their

Historically, developers are slow to

independence may be lost. The irony is

change. Maximum profits can be made

that the curbless shower actually makes

by rapidly building what sells efficiently

life easier; not more difficult.

and with as high quality as possible. In-

My father cherished his indepen-

troducing different building materials

dence, probably more than those of us

and methods risks extra building costs

who do not use wheelchairs. Fifty years

and extra construction time that cannot

ago, persons who were disabled as a

always be recovered in sales. However,

paraplegic or quadriplegic were not giv-

every once in a while, a new building

en much hope in terms of living a pro-

material and building method has such

ductive independent life. This is what

positive benefits that everyone notices,

my father was told when he was injured

from building subtrades to developers

in 1964. He defied all of the odds by be-

and the general public. When change

coming a City of Edmonton Councillor

happens in the homebuilding industry,

for 9 years and an Alberta Liberal MLA

it is rapid. The best example of such rap-

for 12 years. Shortly before he passed

id change that I can provide is that of the

away in 2004, he received the Order

engineered joist. This building product

of Canada. After almost 40 years in a

was initially marketed as a floor system

Spring/Summer 2016 Issue

The above image shows a bathroom with a curbless shower area that anyone could use. The shower area would never need to be modified, therefore it is flexible for all kinds of future use; it is sustainable in that expensive modifications would never be required.

that would eliminate squeaks when walked upon. A common complaint in the more traditional floor systems of dimensional lumber was that the wood would shrink, and the results in time would be squeaky floors. What quickly became apparent with engineered floor joists were other advantages. Mechanical, electrical, and plumbing subtrades found it easier to run ducts, wires, and plumbing lines through the engineered joists. They could get their work done more effectively and efficiently; their fees to contractors improved. The engineered joist could also span over larger distances, eliminating the need for many structural posts. Homeowners soon realized the ability to have flexible floor space planning; this is especially important with basement spaces.

Initially the engineered floor joist was much more expensive than dimensional lumber. Today, because developers, subtrades and homeowners realize the benefits of the engineered truss, prices have come down and are almost exclusively used in the construction of single family detached homes.

17

accessibility/independence

Opening Doors to Visitability Blatchford Redevelopment

by Ross Norton

T

It can be particularly difficult to

As a community, we need to do our

ty Studies created a locally based persuade any builder in the industry to

best to insure that City Council is well

task force to promote the con- incorporate the most basic features of ac-

informed so that they can make an edu-

cept of ‘visitability’ which means people cessibility into a project. In many cases,

cated decision as to whether or not they

with limited mobility can visit a home- builders say that incorporating such ad-

should regulate visitability. If we leave

owner. Homes would have no steps to at ditional features will result in exorbitant

it as a voluntary program, one can only

least one entryway, wider pathways and costs and no return on investment. They

assume that builders will choose not to

a main floor bathroom with a 60� turning often indicate they have no technical

include those features. How cool would

radius.

knowledge and they will incur extra costs

it be if Edmonton was to incorporate

he Canadian Centre on Disabili-

The most successful example of a in learning the new practice and pass that

visitability into Blatchford Redevelop-

visitable neighborhood can be found in onto the homebuyer. It seems we are liv-

ment, making it one of the most inclu-

South Winnipeg, named Bridgwater. Fif- ing in a time when ageing is something

sive neighborhoods in North America!

teen hundred homes will be construct- we deny, as even home buyers are not

Be sure to contact your Edmonton City

ed with visitable features. Bolingbrook, convinced. When we refuse to admit we

Councillor and express your support for

Illinois is another community that will are getting older, we do not plan for the

incorporating visitability into their vision

have three thousand visitable homes reality that we will most likely have fu-

for Blatchford Redevelopment and let

constructed. Both communities have had ture physical limitations that will affect

them know that access is important to

architectural controls regulated by their our ability to enjoy our homes for as long

everyone!

municipal governments.

The City of Edmonton decommis-

as possible.

There are so many reasons to include

sioned the municipal airport and an- visitability features into a home (zero nounced that they will be redeveloping step entry, wide pathways and a main it into a sustainable community, named floor bathroom); no step entry makes the Blatchford Redevelopment. It is pro- sense! Homebuyers may not know it yet posed that it will be home to 30,000 res- but visitability will mean they can live in idents and will be a model of social, envi- their homes longer. Family members and ronmental and economic sustainability.

friends who have trouble navigating stairs

When I think about social sustain- can visit. It means any family member ability, I think of people living in their and friend can visit your home, regardless homes as long as possible. But does the of their age or function! It means ease of City? Do builders? Do home buyers? moving, not just for those with mobility Should government insist homes are devices but also for baby strollers, bicycles built with a specific level of access?

18

or luggage from a trip.

A visitable home in Edmonton

Spinal Columns

AADL Supplies

accessibility/independence

by Guy Coulombe

Spinal Cord Injury Alberta regularly hears from our members about benefits supplied through the Alberta Aids to Daily Living (AADL) program. Whether it is “Medical Surgical Supplies” like; catheters, liners, briefs/diapers, dressings or wheelchairs, cushions and accessories, our members reiterate that the supplies they are provided with sometimes do not adequately meet the needs of their everyday lives.

AADL has “Quantity and Frequency Limits” which are based on client’s basic need, best practice and current research.

Quantity and frequency limits describe the maximum number of each benefit (quantity) a client can receive over a given period of time (frequency). These quantities are reviewed on an annual basis.

If you feel that the amount of supplies you are provided do not sufficiently meet your health needs, you are able to request a reassessment by a healthcare professional (AADL Authorizer). The healthcare professional may suggest trying an alternate product or if applicable, review your technique with you when you are using the product. Once you have been reassessed and all other strategies have been reviewed, the Quantity and Frequency Review (QFR) process can be used, provided the authorizer clinically supports your request. If you decline a reassessment or do not wish to follow the authorizer’s clinical directions, you are 100% financially responsible for any quantities above the authorized two-month amount (Medical Surgical supplies only).

All Quantity and Frequency requests require the following: • An assessment identifying clinical need. • Rationale explaining why the existing benefit no longer meets the client’s clinical needs (i.e. documented, significant and stabilized change in clinical condition since the previous benefit was provided).

The following requests are outside the Quantity and Frequency Review process: • Benefits for which the client does not meet the eligibility criteria • Requests for medical equipment and supplies that are not on the “Approved Product List” • Replacement of lost, stolen or damaged benefits • Replacement of benefits due to misuse or inadequate care and maintenance • Replacement of benefits for convenience or lifestyle • Replacement of benefits due to technological advancements • Funding for charges above AADL maximum approved limits (i.e. upgrading costs) • AADL Program Cost-Share Exemption Appeals Many of our members who love to travel have asked “What happens if you need more supplies if you are leaving the country?” Advanced quantities for those leaving the country pertain to only ostomy, catheters and dressing supplies, as per AADL

Do you trip, catch, or drag your toes?

The next step forward in Foot Drop independence.

WalkAide is an advanced medical device that may provide immediate and dramatic improvement in walking caused by stroke, incomplete spinal cord or traumatic brain injury, cerebral palsy, or multiple sclerosis.

policy.

Provide a copy of the “AADL Request for Advanced Quantities of Medical Surgical Supplies” form, which can be downloaded from the AADL website.

Mail the form to AADL at least one month prior to your departure date to allow for processing and to ensure that the vendor can provide adequate supplies for your trip. If approval is obtained, AADL will contact your store and grant permission to provide you with a greater than two-month supply.

Speak with your AADL authorizer to inquire about being reassessed

Call today and ask how you can book a free assessment to be tested to see if the WalkAide can help you!

www.walkaide.com

Limitless Orthotic & Bracing Solutions KNEE | WRIST | BACK | ELBOW FEET | ANKLE | SHOULDER

and to complete the Quantity and Frequency Review. Go to http:// www.health.alberta.ca/services/aids-to-daily-living.html and click on “Forms, brochures and documents” then scroll down to Quantity and Frequency Review.

Spring/Summer 2016 Issue

780-452-5771 www.khager.com

19

Skywalk Fun!

travel

by Kary Wright

A

lways looking for fun things to

about fifteen minutes before we were

with the hunt by pointing out the prey!

do, on a recent camping trip

ushered to a bus that was equipped for

They are also one of the only creatures

we decided to take a trip to the

people in wheelchairs. Within a couple

on Earth that possess the ability for in-

Columbia Icefields to try the Skywalk.

of minutes I was loaded inside, the rest

sight, problem solving and imitation.

The Skywalk is a semicircle walkway,

of the passengers boarded, and away

Ravens have the equivalent intelligence

with see-through floor and railing, an-

we went for the five minute trip to the

of a six-year-old human (no wonder

chored to a cliff approximately 900 feet

Skywalk!

they intimidate me)! Back to the story.

Our bus driver,

We wandered along, stopping and

Robin, made the trip

reading the signs, listening to the park

to the Skywalk very

employees, and acting as nonchalant

interesting with great

as possible even though anxiety was se-

commentary

along

cretly creeping up. Of course, I was at

the way. There were

the front pretending to be as brave as

pieces of the old high-

can be, but also excited to see this Sky-

way

walk!

alongside

that

we hadn’t noticed be-

There was a lump in my throat as

fore, bighorn sheep

we approached, but we had the ‘we’re

that she was familiar

here now so let’s do it’ attitude. I slow-

above the valley floor! We had watched

with, and rock markings from ancient

ly rolled my chair onto the glass, and

the ads on television and it looked like

glaciers. She also mentioned that the

stared down at the valley far below. At

fun, albeit a little bit scary! I seem to be

Skywalk itself is built to flex in the wind,

first it was a little tough on the stomach,

okay with height as long as there is a

and that we should not be surprised (ya

but then the beauty of the whole situ-

joystick and a set of wings attached, but

right) if we felt movement!

ation took over, and we soaked in the

remove those and I’m much less com-

Once we arrived and disembarked,

unbelievable view! We were suspended

fortable. Heck, I can hardly look over a

we were offered free audio devices

above this gorgeous mountain valley,

balcony in a high-rise (but of course I

where we could key in the number of

the snowcapped peaks poking into the

let on like it was no biggee)!

different points along the walkway and

blue sky, and at one end of the valley

We camped near Jasper and chose

get information. For instance, at one

there was this huge glacier with a river

a warm day to go (I tend to get a lit-

station there was information about

flowing from it! The whole platform did

tle whiney about getting cold, just ask

the glacier, which is 100m thick and at

move a little when people walked on it,

my wife). The day arrived and it was

another, there was a parks employee

but since we were warned about this, it

warm and sunny as predicted. We left

speaking about the birds, mentioning

didn’t seem to be a problem. Once we

the campground in the morning, load-

that the Golden Eagle can fly as high as

got used to it we didn’t want to leave!

ed into the van and away we went! The

10,000 feet and dive at over 300 km/

We soon noticed people looking

drive from Jasper to the Skywalk takes

hr! He also mentioned that the great

straight down at something. “There

about an hour and is very picturesque

horned owl has a crushing power of 300

is something moving down there, is

with vivid blue lakes, rushing rivers and

pounds per square inch with its talons,

it a bear?” someone asked. “No, it is a

falls, towering pine trees swaying in the

and that a raven actually does not hunt

mountain goat! And there is a baby be-

wind and wildlife, including bighorn

very much at all but is a scavenger and

hind it!” came the reply. Sure enough,

sheep and deer along the road.

We

relies on other hunters. Ravens are ac-

way down on the rocks there was a

parked at the Icefields Parkway, picked

tually smart enough to follow a wolf or

mother mountain goat with her little

up our tickets and only had to wait

even a human being, and actually help

baby following behind. Soon nearly ev-

20

Spinal Columns

“

There was a lump in my throat as we approached. . .

travel

”

erybody was looking straight down and watching the wildlife, not even noticing that we were several hundred feet above!

We really enjoyed our visit to the skywalk. What a great way to ‘push the walls back’ when they are encroaching on you! It felt great to do something out of the ordinary that was so exciting! It is a fun experience that is completely wheelchair accessible, and the Brewster staff went out of their way to make sure we had a great time. I would recommend this trip to anyone in a wheelchair who might be interested in a safe, exciting, wheelchair-friendly adventure!

Where is the

Skywalk located?

Just a few minutes from the Icefields Parkway between Banff and Jasper.

Spring/Summer 2016 Issue

Was it easy to do from a wheelchair?

It is completely wheelchair accessible.

There was no stress at all in the whole process.

Is it expensive? $29.95 for the trip and you can stay as long as you like. Buses take you back to the Icefields Parkway every 15 minutes.

21

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travel

Rocky Mountain Blues

by Lynn Boutette

“Southern Alberta is a "black hole"

The next day however, all upset

participate in a fully authentic dinosaur

when it comes to accessible tourism, it’s

vanished as we drove southeast for

dig, sleep under the stars at the camp-

what I’d like to see change,” says Gar-

about two hours through beautiful roll-

site, hike the natural preserve and climb

ry Brown, owner of the newly formed

ing countryside when suddenly we were

the hoodoos.

Rocky Mountain Wheelchair Tours, a

surprised to see the grasslands plunge

On a wheelchair accessible bus tour

division of 4Seasons Transportation.

into a canyon of spectacular colours

of the park we saw partially excavated 47

“Accessibility laws are provincial. (So)

from black to ochre and red – a barren

million-year-old dinosaur skeletons. In

there (is no enforcement) in our national

moonscape gouged by glacial water at

fact, bones scattered around looked like

parks. It’s all voluntary.”

the end of the last Ice Age when rapid

rocks until our guide told us to look for

Alberta Parks is aiming for inclu-

erosion created strange rock formations

the mineralized honeycomb-like pores

sion, but currently their website lists

such as hoodoos and coulees. We were in

on the surface of the ‘rocks’. Many of the

only disabled access campsites. William

the badlands or mauvaises terres as the

over 120,000 specimens that have been

Watson Lodge, located in Kananaskis

French Canadians called them, a broad

found are now in the world’s largest pa-

country, is totally accessible (I’ve stayed

blanket extending for 200 miles into

leontological research facility, the Royal

there), but it’s only available to people

Saskatchewan. And for this Canadian

Tyrell Museum. The museum houses

who reside in Alberta. Thanks to Garry’s

who has often heard about the badlands

spectacular displays of dinosaur skel-

vision however, I enjoyed travelling for

in the United States, it was a surprise to

etons. Since Joseph Tyrell unearthed

six days from the comfort of my wheel-

find out that they exist here and more-

the skull of a meat eating lizard – later

chair in an accessible van courtesy of

over, are renowned for having the richest

named Albertosaurus – discoveries have

Rocky Mountain Wheelchair Tours.

fossil beds in the world.

included: a new species of horned dino-

My husband and I, and my support

In this stunning landscape, which

saur; North America’s first feathered di-

worker and her boyfriend landed in Cal-

millions of years ago had a humid sub-

nosaur; a new species of fossil fish, and

gary at the end of July. They stayed with

tropical climate much like North Caroli-

many others.

friends and we stayed at Delta Calgary

na today; teams of paleontologists have

Note: the park is NOT located near

South, although we had some trouble

been uncovering Alberta’s cretaceous

Drumheller. It is about a two hour drive

getting the room with a wheel-in show-

history since the 1800s. Dinosaur Pro-

from the park to Drumheller and the

er that I had booked nearly a month be-

vincial Park, now a UNESCO World

Tyrell Museum. I recommend going to

fore. Unfortunately, at time of booking

Heritage site, gives visitors a chance to

Dinosaur Park and the museum on sep-

most hotels will only take a request for a wheelchair accessible room and will

Leo, Lynn and Emelda at Dinosaur Provincial Park, Alberta

not guarantee it (This has happened to me many times. On arrival, the accessible room has often been given away to able-bodied individuals and although the hotel offers you an upgrade as compensation, this doesn’t help much if you can’t get into the bed or bathroom). So after one uncomfortable night, the room I had requested was vacated (What if it hadn’t been available? Booking another hotel in high season is next to impossible).

24

Spinal Columns

travel

arate days. Unlike the park which has

per. It is one of the most scenic drives in

nice ramp for my wheelchair. Be sure to

many tours and trails (not all of which

the world; in fact, National Geographic

drive out to the stunning azure-coloured

are accessible), the museum tours of the

identified the whole Banff-Jasper route

Maligne Lake and take a boat tour. The

badlands do not accommodate people in

as one of their 20 drives of a lifetime.

tours are listed as being accessible but

wheelchairs. The next day took us to Wa-

Scenic stops along the way include beau-

the paved path around the lake is only

terton Lakes National Park, and along

tiful Peyto Lake which has a paved but

partially accessible.

the way we stopped at the historic Bar

very steep path out to the viewing area.

U Ranch (a few buildings of which were

And although we didn’t stop this time,

accessible). Waterton Lakes is home to

Johnston Canyon, Bow Summit, Storm

western Canada’s first oil well, a bison

Mountain and Lake Minnewanka are

paddock where we spotted a few bison

some of the more traditional stops for

in the distance, and the Prince of Wales

‘wheelies’. Note: the Banff and Jasper

Hotel, to name only a few attractions.

gondolas are wheelchair accessible with

We didn’t make it to Head-Smashed-In

the following exceptions: Banff – the

Buffalo Jump – where 6000 years ago

path leading to a second viewing area

Plains Indians stampeded buffalo over

is not accessible and in Jasper the sec-

the cliffs to their death – but I heard it

ond floor of the upper terminal, where

was a very worthwhile visit and accessi-

the restaurant is located, is not accessi-

ble.

ble, nor is the dirt trail to the summit. A The historic Prince Of Wales Hotel,

‘must-see’ along the way is the Columbia

built in 1927, is the area’s most recog-

Icefield, even though it has receded a lot

nized landmark. It stands isolated on a

in recent years. Brewster bus lines has

bluff overlooking a spectacular vista of

a wheelchair accessible snow coach to

mountains, lakes, and prairie. Nearby,

get you right out onto the glacier. Since

visitors can take a boat tour into Glacier

we did not want to pay the $55 each for

Park, Montana USA. Unfortunately, the

the tour we drove our van across the

boat could not accommodate my power

road hoping to get close to the glacier.

wheelchair.

Unfortunately, my wheelchair could

We also took a drive along scenic

not navigate the path but, since I had

Red Rock Parkway through a canyon of

done the bus tour before, I was content

brilliant red argillite. Linnet Lake is an-

to sit on the deck at the Discovery Cen-

other roadside gem that sits on the north

tre and look out across the glacier. The

edge of the town site across the road

newest attraction, the Glacier Skywalk,

from the park ranger station just north

is a glass-floored bridge that takes visi-

of the visitor centre. It is a short walk on

tors out over the Sunwapta River gorge.

a paved (but rough) trail around the lake

But despite the name, in my opinion,

and is almost completely sheltered from

the views here are not any better than

Waterton's famous winds. For a list of

those that are available for no additional

wheelchair accessible trails, you can get

charge along the Icefields Parkway.

the ranger guided activity guide available throughout the park.

The company is in the process of arranging both group and self-guided tours.

Alberta Parks Accessibility

Accommodation

Guided interpretive programs should be booked in advance.

Our last stop before leaving Alberta was Jasper where we stayed at the

No trip to Alberta would be com-

Jasper House Bungalows. Our cabin,

plete without driving the Columbia Ice-

which accommodated two couples, had

field Parkway from Lake Louise to Jas-

two steps, however they made a very

Spring/Summer 2016 Issue

For more information

25

cover story

The Power of ‘Showing Up’

by Heather Lissel

Kent Hehr, MP, on getting back into the game after spinal cord injury

W

oody Allen is quoted as

quadriplegic. I don’t know if I want to

connections with other people who had

saying “80% of success is

live.’”

been in his shoes. It all took time and

showing up.” This simple

Kent’s will to live didn’t return over-

philosophy of showing up rather than

night. “Those were really dark days,” he

backing down from a challenge can

recalls. With help from Spinal Cord Inju-

He persisted. Over time he found

make starting over with a spinal cord in-

ry Alberta (formerly the Canadian Para-

that his experiences as a quadriple-

jury (SCI) seem more achievable. In this

plegic Association Alberta), Kent and his

gic gave him a unique perspective and

article, Member of Parliament for Cal-

family got the support they needed to

knowledge that could impact others in

gary Centre, the Honourable Kent Hehr,

find him housing at a group home. They

a positive way. That awareness is the

talks about how something as basic as

also received encouragement and infor-

flame that fuels his work as a federal cab-

going out for coffee can be the catalyst

mation on how he could return to school.

inet minister. Hehr was recently elected

for a person’s recovery from SCI.

SCI Alberta helped him make valuable

as Member of Parliament for Calgary

effort. “It wasn’t easy. It was not easy to rebuild my life” he says.

Twenty-five years ago, a young Kent Hehr was seriously injured in a random drive-by shooting. “One evening I was going out with some friends…and I was the victim of a drive-by shooting. Well, the next day I woke up in the Foothills Hospital…my world had crumbled! The day before, I was going to school, working at Safeway, playing on the hockey team, had an active social life and the next day, I had no idea what my life would become. In fact, my first words to my parents were ‘Mom, Dad, I’m a C-5

26

Spinal Columns

cover story

Centre and serves as Minister of Veter-

close yourself in, to stay in your room,

The key is in the coffee. “Make

ans Affairs and Associate Minister of Na-

to watch TV, to cut yourself off from

sure you go out to the restaurant. Make

tional Defense. “I think having a person

the rest of society because you’re going

sure you go for coffee. Make sure you

like me, a person who’s had a different

to feel a little different. You’re not going

go where other people are. Don’t shut your-

life experience, is important to both

to sense that there are opportunities out

self in,” Hehr says with conviction. “Just get-

of these files…I’ve never been to war,

there. I was like that as well.” “[Today]

ting out there, interacting with [others]…on

served in peacekeeping or any missions

I get to share my life with people and

a daily basis, will open up doors and possibil-

abroad, but I know when our men and

that’s a truly amazing thing…they learn

ities you won’t have if you shut yourself off.”

women come back to Canada, need to get

from me and I learn from them.”

Whether you choose to live your life by

help, need to get ways to move their lives

In spite of his impressive achieve-

the motto that half of life is showing up or

forward – having done that myself with

ments, Hehr remains completely down

80 per cent of success is showing up really

a spinal cord injury, having that perspec-

to earth about the effort it requires to

makes no difference. It’s simple, but it isn’t

tive, allows me to look at our programs,

stay in the game. He doesn’t gloss over

easy. You can’t expect it to happen overnight.

and look at whether they’re serving our

the fact that it takes him one hour and

Sounding a lot like a wise parent, Hehr says,

population.”

fifteen minutes to get up every morning,

“You keep doing it and, my goodness, you

One important lesson Hehr has

and another hour and fifteen to go to

wake up 25 years later and it’s fine. You’re

learned from his ten year tenure in poli-

bed every night. “That’s just how it is,”

comfortable in your own skin…that is where

tics, is that even though you can’t predict

he says. “Sometimes when you’re early

you want to get.”

the future, there is still value in ‘showing

on in your disability you think this is the

up.’ “Half of life is showing up,” he says.

worst thing in the world. I tell you what,

“After you show up, you can get better at

things get better…you’ll find a way to

the other half…You show up, you work

make it happen, just like I have.”

hard, you meet some people, you let the chips fall where they may…”.

Looking back, Hehr is able to reflect on whether or not he really would have

The simple act of showing up has

been as happy had he continued on the path

allowed Hehr to form relationships that

he was taking prior to his injury. “If I had a

have shaped his life into what it is to-

choice of playing it out being able-bodied or

day. Speaking directly to those who are

disabled, well, the choice is pretty clear, it

newly injured, he says “There’s going to

would probably be able bodied. But I can

be a real temptation for you to want to

tell you this: I am 100% happy!”

Spring/Summer 2016 Issue

SCI Alberta would like to thank the Honourable Kent Hehr for taking time from his busy schedule to meet with us. His full interview is captured on video Heather Lissel is a freelance writer in Sherwood Park, Alberta. She can be reached at hlissel@telus.net.

Video and interview by Russ Bray, Spinal Cord Injury Alberta.

27

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28

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Contact Jim Martin, P. O. Box 6, Daysland, Alberta 780-374-3886Spinal Columns

New Wings: Flying Across the Ocean

by Kuen Tang

motivation

While waiting to hear if I was a successful candidate for

the show, I worked hard to relearn Chinese. I tried to figure out exactly how I could make one wish have maximum impact.

Then the phone rang and I was off to China! What an experience! I was returning to my first home after 16 years of absence.

My experience in Hangzhou was amazing. All sidewalks were perfectly accessible to wheelchairs and especially for persons with visual impairment. The sidewalks were flat, compared to the slanted-to-the-road design we have here in Canada; all curb cuts were flush to the road, making it easy to wheel up and down. Ninety-nine percent of the buildings however had steps.

During my eleven day stay, I didn’t see one other person with a disability. This just helped to reaffirm my desire to try and

I

was born in the beautiful city of QingDao, China, a tomboy bring more awareness to issues faced by people with disabilities full of energy and a thirst for life. Like many, I immigrated living in China. to Canada at a young age, and started a new life in Edmon-

I guess my sincerity and optimism had a very positive ef-

ton, Alberta. I felt lucky to be able to call two beautiful cities fect on the show because my wish was granted. I would like to my home and envisioned an adventurous future where I could create a dialogue between Canada and China so that we share spread my wings.

knowledge - about rehabilitation, research, medical informa-

At the age of 23 however, while driving home to Edmon- tion, legislation, etc. I would like to share articles I’ve written; ton on the Coquihalla Highway, my car went over a cliff, rolled have videos and pictures translated into Chinese and uploaded down the side of the mountain and I was thrown 40 meters! I to Chinese websites. I’m hoping this will achieve at least three awoke in the hospital a week later, only to be told I was quadri- outcomes: people with disabilities will be inspired to believe in plegic. Feeling like an angel that lost her wings, I fell fast from themselves; our non-disabled counterparts will see what people the sky; I crashed into a deep darkness, until one day, the love with disabilities are capable of and provide better opportuniof my family and friends pulled me into the light. From that mo- ties for meaningful participation in life; and, give the Chinese ment on, I could see my future full of potential again. I worked government and the various communities within the country, hard and became the first quadriplegic to earn a B.Ed degree guidelines and support to help create a more inclusive future with elementary specialization. As I wheeled across the stage for all. to receive my degree, I felt an itch in my back and that's when

I felt my wings gaining more feathers for my flight. At the

I realized my “wings” had started to grow back. Since then, I same time as my wish to help others was granted, I also granthave been able to achieve a lot of personal success thanks to ed a small wish for myself. To celebrate Rick Hansen's "Man in our many advocates who, over the years, have helped to build Motion" tour, I will retrace my hero’s journey of wheeling on the a more accessible, inclusive environment in this great country Great Wall of China in 2016. The reason is simple: to achieve called Canada.

and defeat "impossible". To show that through hard work and

Not everyone with a disability is as fortunate as us. While belief in possibilities, we can persevere over seemingly impossiwatching a Chinese TV program I saw the reality of how so many ble terrain. As we work hard to build an even better community Chinese people with disabilities live. There was a teen full of life here in Canada, let’s also not forget people with disabilities who and potential for great success yet, hindered by lack of knowl- may still be struggling. We can all do something to help one edge and society's empathy, could not “grow wings” and was another. Thanks to Rick Hansen’s achievement 27 years ago totally dependent on his family. My mom turned to me and said, which inspired me to grow stronger wings, I’m grateful to have “You can help.” I have received so much from my community started and inspired others to find their own wings. Now that and I felt it was time to give back. With encouragement from just leaves one question. Are you ready to fly with me? my parents, I applied to the Chinese reality TV show "Dream of

Kuen Tang’s "Dream of China" episode can be found

China". Contestants vie to have one wish fulfilled. My wish is to help people with disabilities in China.

Spring/Summer 2016 Issue

29

feature

Forging a New Path

by Spencer Knight

I

magine for a moment that you’re in the driver’s seat of

cident. I know that it happened in 1979 in Billings, Montana,

your car. Your foot collapses on the gas pedal and the

and I know that he was only 21, and when I first heard those

landscape blurs and swarms behind you before falling

details, the earlier scene drifted into my head.

out of view. Maybe there’s wind curling its fingers through

As an abled-bodied person, I find it difficult to cope

your hair, maybe it’s the blast of air conditioning. Your skin

with the possible scenario that something like that could

thrums to the beat of your favourite driving music and the

happen to me, and I’m sure that’s a universal feeling among

rush of blood drums around your bones. You’re not worried

most able-bodied people. That being said, when I sit in the

about getting to work on time or paying off that looming elec-

Edmonton office of Spinal Cord Injury Alberta and see ev-

tric bill. All that matters is the drumming tread of your tires

erybody else wheeling busily by, I’m comforted by the sight

over asphalt and the freedom to take your car in any direction

that spinal cord injury (SCI), although “life-altering,” is not

imaginable. Your favourite part of the song is coming up. The

“life-ending.”

build grows, the volume flares up, and as you’re about to belt

Tom Russell describes it like two separate paths of life

the string of lyrics you’d never forget, everything wanes. The

leading into each other, “I had to look at it as the old Tom

melody crunches up against itself, drowned out by the ca-

Russell died in that ditch in 1979, and the new Tom Russell

cophony of scraping metal and screeching rubber. The rush of

had to find a way to adapt.”

air that was once so refreshing turns into a wall of glass that

His parents advocated to their Blood Tribe Chief and

slams into your body before shattering to pieces—the wave of

Council for Tom to get a house so that he could start recover-

a trillion microscopic razors mars your skin. The landscape

ing his independence, and his sisters and friends would come

stops falling behind you and tips over and over and over until

to stay with him.

it swarms around you. Then black.

I think the struggle for recapturing one’s independence

When you wake up, you’re greeted by the (apparently)

is something of an uphill battle for anyone, and I imagine it’s

calming taupe of a hospital room. Your brain shakes around

even harder with SCI. However, the proper support system

your head for a moment, trying to wipe the glare from your

can help chip away some of the boulders lining the way. For

surroundings. A doctor splits out of the haze; he is the only

Tom, that system was mainly family and support from the

thing maintaining any sort of focus as the room billows

Blood Tribe community who helped him through the lows.

around him.

Tom’s lowest point was when the weight of his circum-

The doctor rests his cold, smooth hand on your shoulder,

stances became too heavy and he broke down and cried. He

and you know that something is very wrong. You can’t quite

considered it somewhat of a release, as if all that anger and

decide what it might be, but something feels out of place.

depression that had sunk into his skin was finally streaming

“You were in a bad car accident,” he says, his face solemn as

out. “It takes too much energy to carry around all that neg-

his tone, “You broke your neck. You’re never going to walk

ativity inside yourself; it takes too much out of you,” Tom

again.” A chill should run up from your feet to your knees to

said. So he let go of all the fears and doubts, and he learned

your hips, but you can’t feel anything—and that shakes every

the power of positivity and its necessity for healing. He went

other part of you. But, in a seeming act of disbelief, and defi-

back to school, graduated from Lethbridge Community Col-

ance, you respond: “No, I’m going to walk again.”

lege, and started working for the Kainai Newspaper until it

I don’t know the precise details of Tom Russell’s car ac-

30

closed in 1991. He learned to play guitar, and from there he

Spinal Columns

feature

learned to write songs and poetry. He discovered his passion for writing and creating; he moved on to larger works like short stories and newspaper articles and eventually had some of his work published in several anthologies. Tom also graduated from the University of Lethbridge (B.A. English/NAS) and credits his return to school and his pursuit of a career in news and communications to the basic motivation and desire he felt for independence. Currently, Tom works for the Blood Tribe’s communications department as a writer and helps produce the Blood Tribe’s newsmagazine TSINIKSSINI. He is also married and is blessed with four daughters and five grandchildren.

Forging the path for the “new” Tom Russell wasn’t easy, but Tom’s support from his family and his tribe helped him through the adversity. “If you put your mind to it, anything is possible,” he said, and with that belief and strong sense of

“It takes too much energy to carry around all that negativity inside yourself; it takes too much out of you.”

self, the possibility to adjust, adapt and thrive is always within reach.

Spring/Summer 2016 Issue

31

feature

Flat T

On Your Back by Spencer Knight

here is something to be said

dence, all while lying next to a hospital

about landing on the flat of

window facing the very job site where

your back. You could be staring

his injury occurred. At the time, John

into the grey of a February sky—looking

thought his injury would also lose him

up and up and up—and what you could

his business, “I’m laying flat on my

sense is something beautiful, some-

back. How am I supposed to run a roof

thing of possibility. But from the flat of

and frame company?” he said.

your back, having fallen a few storeys,

It’s a thought-provoking question,

that feeling of skyward beauty could

but it’s not entirely uncommon among

seem more hopeless. Like the only pos-

persons with disabilities—loss, ques-

sibility is a cold blanket of snowfall.

tioning, and self-doubt seem to be side

John Johnston of Calgary, Alberta

effects of spinal cord injury (SCI). How

is the owner of J-Cubed Custom Inc., a

am I going to get around on my own?

commercial and residential frame and

How am I going to keep my dignity?

roofing company, now in its 11th year.

How am I going to find some semblance

In February 2008, he found himself flat

of normality? For these questions, there

on his back, having fallen from a ladder

are no quick and easy answers, but each

while roofing a turret of a condomini-

one provides an opportunity for explo-

um. He was rushed to Foothills Medical

ration.

Centre, and within the next few hours,

John’s injury challenged his plans

he was fused from his T11 to L2 verte-

for his future, “I was so involved in my

brae.

tools. It was in me. I wanted to be on

During three and a half months in

site—I wanted to build.” It seemed that

recovery, John experienced loss. Loss

his love for building might have to be

of mobility, loss of 50 lbs., loss of confi-

set aside due to his injury. That’s a sad realization, but setting certain things aside that you love to do is something that many persons with disabilities have to do.

John said that it took him two to three years to get through his grief and deal with his changed circumstances, but at the end there was still hope. John was able to return to his work, but in a different form. “I see myself now as I wanted to be 15 years down the road.

Off my tools, in an office position, running it from a business perspective,” he said.

Although John might not be physically building roofs anymore, he is still

32

Spinal Columns

feature

building: his business. But that too has

self-motivate starts. It requires a certain shift in perspective and attitude. “You’re

its challenges. Even though John isn’t

taken out at the knees. You’re down, but you gotta get back up. And it’s gonna take

able to inspect all of the work his guys

time,” John said, and he’s absolutely correct. It is perfectly natural to be down after

do on the sites, it has become a matter

you’ve been injured—it would be strange to be happy about it. But there comes a

of trust between him and his employ-

point where being down and staying down becomes counter-productive. So what

ees. He has to believe that the work his

do you do? You find support, whether it comes from family, friends, associations

crew does is up to his standards even

like CADS or SCI Alberta, or a combination of all of the above. Then you find some-

though he isn’t usually able to set his

thing you love and run with it. You don’t necessarily need to give up the things you

eyes on the product as it’s being com-

care about - you just need to find a different way of doing them.

pleted. One of the hardest things for John to deal with is not being out on the

John says it takes a long time to get your mental and physical strength back, “but slowly and surely you climb back up those rungs.”

site and doing what he loves. However, with his business currently operating in its tenth year, it would seem that the aspect of quality is still thriving, and hopefully that offers some peace of mind for John.

But how did he get there? How did he find possibility from the flat of his back? Motivation, dedication, and support were all key elements. John had to find a focus to keep him going. He said that holding onto his kids and his business kept him going through the toughest times and trying new things helped him with the confidence to tackle new challenges. He often skis down Nakiska with his two older daughters, Eve and Abbie, with the help of the Canadian Association for Disabled Skiing (CADS), and being able to tackle a mountain can help make molehills out of everything else. John and his wife Tara, have a new addition to the family with 6 month old Maiya and for several years now, John and his family have been skiing all over western Canada. “You have to focus on something you truly love and go with it.

You’re gonna start feeling better about yourself. You’ve got to try new things.”

That’s likely where the ability to

“”

I’m laying flat on my back. How am I supposed to run a roof and frame company?

Champions Career Centre

403-265-5374 info@championscareercentre.org

EmployAbilities

780-423-4106 employ@abilities.ab.ca

On Site Placement 780-488-8122

Canadian Association for Disabled Skiing 780-427-8104 info@cadsalberta.ca

Spring/Summer 2016 Issue

33

feature

Think Positive Pregnancy is Possible after Spinal Cord Injury

by Heather Lissel

A

fter a spinal cord injury (SCI),

Fertility and conception is one area

the next steps to take. If you are un-

many women and men will

where men are impacted more than

able to ejaculate on your own, they will

wonder if they can have a sat-

women. First, there is the matter of me-

use either a vibrator (one that is many

isfying sex life and possibly have chil-

chanics. Depending on the level of inju-

times stronger than the kind you’ll find

dren of their own. The answer to both

ry, some men will experience weaker, or

in your local drug store), or a procedure

is “yes.” Before leaving rehabilitation,

no, erections. They may not be able to

called electro ejaculation. The clinic can

most people will have had the “sex talk”

ejaculate. Less than 10% of men with a

also perform a testicular biopsy to find

with someone on their rehab team. Be-

complete SCI ejaculate normally. If they

healthy sperm, if that is required.

cause there is still a significant amount

can, the sperm count is usually low and

Once your swimmers have been

of adjusting that needs to take place,

sperm are less motile (slower). Studies

counted and have completed their time

most people will not be ready to have an

have shown that in the semen of men

trial, you are ready to go on to the next

in-depth discussion about having chil-

with SCI, about 20% of sperm are mo-

stage of conception – fertilization. While

dren. It’s normal to take several months

tile compared with 70% in other men.

some people may experience success by

or even years before feeling confident

Sperm are also referred to as “fragile”

having the sperm placed into their part-

enough with your basic life activities to

meaning that they may start out strong

ner’s uterus, Dr. Calvin Greene (now

address family planning.

but rapidly lose their ability to swim. It

retired from the RFP clinic) says that in

When the time comes, both the

is common for semen to have normal

most cases couples will require IVF (in

Glenrose Rehabilitation Hospital in

numbers but abnormal motility. You

vitro fertilization), where the sperm is

Edmonton, and the Spinal Cord In-

may come across the term “retrograde

inserted directly into the egg. This re-

jury Rehabilitation Unit at the Foot-

ejaculation” which occurs when semen

quires a significant investment of time

hills Medical Centre in Calgary, have

is released into the bladder instead of

and money, with women being required

specialists who can sit down with you

exiting through the penis.

to undergo all the usual steps involved

to discuss fertility and dispel any mis-

If you are already able to achieve

in the IVF process. Many couples who

conceptions you may have about your

an erection (with or without medication

lack adequate insurance coverage have

ability to conceive. In females, SCI has

or devices) and you have had vaginal in-

benefited from the Generations of Hope

very little impact on fertility. There may

tercourse without pregnancy occurring,

Fertility Assistance Fund (see below).

be issues around reduced sensation and

it may be time to see a professional for a

The decision to go through IVF is

lubrication, and a woman may cease

semen analysis. For males who are un-

not a simple one, so you will want to

menstruating for a while following inju-

able to have intercourse through pene-

have a discussion, or several discus-

ry, but overall, females are just as fertile

tration, establishing how fertile they are

sions, with a fertility doctor as well as

after injury as they were before. For this

is a necessary first step to conception. In

a psychologist and, if possible, a nurse

reason, it is important for women to use

Alberta, sperm retrieval has only been

specializing in SCI. Patients of the RFP

contraception if they are sexually active

performed in Calgary, at the Regional

clinic have access to a psychologist who

and do not want to become pregnant.

Fertility Program (RFP). A physician

specializes in working with couples who

Non-estrogen based contraception is

referral is required. At the RFP clinic,

are experiencing stress related to fertil-

recommended to avoid the risk of blood

physicians will assess the quality and

ity. Women with SCI would be wise to

clots.

quantity of your sperm to determine

consult an occupational therapist and a

34

Spinal Columns

feature gynecologist who specializes in SCI to discuss the risks and challenges associated with pregnancy. Your contact at the rehabilitation facility where you were treated will be able to connect you with the appropriate resources. Mary Ellen Plumite at the Glenrose Rehabilitation Hospital and Raj Parmar at the Spinal Cord Injury Rehabilitation Unit at the Foothills Medical Centre are both excellent resources, having a wealth of knowledge on the various aspects of male and female fertility after SCI. They will also be able to guide you in the direction of other resources to help in your decision-making.

While it’s important to be informed, it is equally important to surround yourself with people who are positive and supportive of your endeavour. While the thought of having a child after SCI may be overwhelming to you now, that may change as you grow more comfortable with the changes SCI has brought to your life. If you feel you’d like to talk to someone with SCI who has been through the fertility process, SCI Alberta can connect you with women and men who would be glad to share their stories. Having the support of friends, family members, professionals and peers with SCI will help you to stay positive while waiting for that magical, life-changing positive on the pregnancy strip.

The Generations of Hope Fertility Assistance Fund was conceived in 2005 as an initiative of the Regional Fertility Program, Calgary. The pri-

high direct and indirect costs of assisted reproductive technology is not funded by public health care and most private health insurance.

mary objective of the Fund is to help patients of the Regional fertility pro-

While the Regional Fertility Program provides as much assistance to

gram in Calgary who wish to conceive a child, but who are facing fertility

financially challenged patients as possible, the need for further assistance

challenges in the pursuit of their dream, and who also face serious financial

continues to grow. The goal of the Fund is help as many people as possible

challenges that make the hope offered by assisted reproductive technology

to obtain access to assisted reproductive technology, to help put the hope

through the Regional Fertility Program - particularly In Vitro Fertilization

of having a child within reach for as many we can.

(IVF) - an unaffordable option for them.

The Fund is 100% supported by corporate and individual donations.

The Fund has a secondary objective of seeking to raise awareness of the widespread occurrence of infertility in Canada, affecting an estimated

For more information or to make a donation,

1 in 6 couples who try to get pregnant; and to increase awareness that the

For more information on sex and fertility after SCI: Diane Rowles, Nurse Practitioner with the Spinal Cord Injury Rehabilitation Program, Rehabilitation Institute of Chicago has a number of videos on YouTube in which she discusses sexuality and fertility. The playlist is available Sexuality, Fertility, and SCI – an online article that addresses fertility in both males and females. Published by Spinal Cord Injuries Australia and available “Male Fertility Following Spinal Cord Injury: A Guide for Patients” published by the Miami Project and available provides tons of information from conception to relationships to kids and parenting

Personal Injury Group 780.429.1751 Miller Thomson LLP

millerthomson.com

Added experience. Added clarity. Added value. vancouver

calgary

edmonton

saskatoon

regina

london

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markham

montréal

research

Stemming the Hype A new University of Alberta study reveals just how unrealistic the media’s coverage of stem cell therapies can be.

M

be blamed for creating the unrealistic expectations when it comes to stem cell therapies.

“The pressure to hype is everywhere,”

ost of us already suspect that of the U of A’s Health Law and Science Pol-

he says. “I’ve called it a hype pipeline. For

the media can be over enthu- icy Group, and author of two books that de-

example, our findings showed that many

siastic in its coverage of all bunk celebrity culture: Is Gwyneth Paltrow

scientists have often provided, either by im-

things stem cells, creating false hopes and Wrong about Everything and The Cure for

plication or direct quotes athoritative state-

expectations in the process. But a recently Everything! Untangling the Twisted Mes-

ments regarding unrealistic timelines for

completed study by University of Alberta sages about Health, Fitness and Happiness.

stem cell therapies. There is career pressure,

law researchers quantifies just how unreal-

“Pop-culture representations have an

institutional pressure, commercialization

istic media coverage of stem cell therapies impact on how the public perceives the read-

pressure, patient pressure, public pressure

really is. The study, co-authored by Timothy iness of stem cell research,” says Caulfield,

and, of course, media spin. Also, I think the

Caulfield and Kalina Kamenova, examined “and that in turn feeds into stem cell tour-

pressure from government to commercialize

307 reports of stem cell research that were ism, marketing of unproven therapies and

research is part of the problem. Everything

published in major daily newspapers in even the public’s trust in research.”

must now be portrayed as if it will be in the

Canada, the USA and the UK between 2010

clinic tomorrow. It’s a complex problem that

He adds that one of the most alarm-

and 2013. The duo found that the majority ing aspects of the research was the media’s

involves many actors working in concert.”

of these news stories lacked balance—they response or lack of it when a prominent

That, says Caulfield, makes it a tough

tended to be highly optimistic about the biotech company discontinued its SCI-spe-

problem to fix. “Everyone - researchers, in-

therapies they were describing and the time- cific stem cell trial in 2011. Geron Inc. made

stitutions, and the media - have to dial back

lines involved in bringing them to the main- headlines when it became the first company

the rhetoric. I don’t think we need to hype

stream for public use, while overlooking the to secure FDA approval for its clinical trial

science to make it interesting and exciting.

challenges and hurdles that need to be over- of an embryonic stem cell derived therapy

I believe the public understands that it will

come in order to do so.

for SCI, and was considered a leader in em-

take time. Creating false expectations isn’t

Specifically, the study concluded that bryonic stem cell therapies. The company’s

going to help. In the short term, some ap-

69 percent of all news stories analyzed pre- decision to halt its work on stem cells was

pear to benefit from the hype - for example,

dicted that the therapies described would considered a significant setback for the field.

more newspapers may get sold, and re-

be available within five to ten years or even

“We were surprised that the exagger-

searchers might secure funding. But in the

sooner. While stem cell therapies hold ated claims of rapid translation (from basic

long term, it hurts everyone, including the

considerable promise for many conditions research to clinical use) did not dissipate

science. I also think it hurts public trust in

including SCI, these timelines are clearly more after the Geron trial was abandoned,”

science.” Caulfield’s study was published in

unrealistic—the vast majority of stem cell says Caulfield. “It’s amazing how consis-

the March 11, 2015 issue of the journal Sci-

therapies being tested are at the beginning tently overly optimistic the predictions re-

ence Translational Medicine.

(evaluated for safety as opposed to effective- mained.” ness) of a long and difficult approval pro-

He adds that another alarming

Reprint from Summer 2015 issue of the Spin.

cess. The authors note that the average time result of the study is that ethical conto get any new drug from the lab to market cerns about the use of human embryonis 12 years and the majority of new drugs are ic stem cells seem to have disappeared nowhere near as complex as the process of from the forefront of news coverage, transplanting any kind of stem cell.

while the clinical translation of stem

The result is that this rosy perception cell therapies and new discoveries, of stem cell therapies rubs off on an easily such as hockey legend Gordie Howe’s influenced and sometimes vulnerable pub- recent treatment, grab the headlines lic, says Caulfield, who is a professor, law- instead. But Caulfield is quick to point yer, health policy expert, research director out that it’s not just the media that can

36

Spinal Columns

research

Instant

Diagnosis

A new diagnostic device developed by ICORD researcher Dr. Babak Shadgan provides immediate confirmation of urinary tract infections.

W

e may not have warp drives or transporters yet, but Dr. “Bones” McCoy’s medical tricorder from the universe of Star Trek is slowly but surely moving

from the realm of fiction to the real world and that’s good news for people with SCI. One of the most impressive and promising portable and non-invasive diagnostic devices we’ve seen has recently been developed right here in BC a wireless, credit card sized optical device that can sense the presence of lower urinary tract infections (UTIs).

UTIs are one of the most persistent, damaging and even deadly secondary health complications of SCI. Left untreated, they can lead to kidney damage, sepsis, renal failure, autonomic dysreflexia and a host of other complications. Up to this point, the standard method of diagnosis has involved collecting urine and testing it for the presence of bacteria - an impractical, costly and time-consuming procedure that can take up to 72 hours for definitive results. Needless to say, a UTI can spiral out of control if left untreated for three full days. Meanwhile, precautionary treatment with antibiotics given to patients while they wait for

acute UTIs,” says Dr. Babak Shadgan, a physician and ICORD researcher who developed the new diagnostic device. “This can save time, reduce the financial burden on patients and healthcare systems, prevent unnecessary referrals to clinics and hospitals, make treatment easier, and promote quality of life for people affected by SCI.” Shadgan says he arrived at the idea for the device as he studied bladder function using NIRS (near infrared spectroscopy).

When he observed higher amounts of oxygen levels in the bladder tissue in some subjects, he was curious to know why.

“When I reviewed those cases, I realized that they were recently affected by a UTI,” he explains. “I conceptualized that UTI-induced inflammation of the bladder wall might result in an increase in bladder wall tissue oxygen saturation, which can then be detected by NIRS.” Near infrared light has been known about for more than one hundred years, and NIRS systems have been used in many medical applications for decades. But according to Shadgan, they’ve never been used for an application like this.

So how does it work?

their test results has its own pitfalls, as excessive use of antibiotics is gradually leading to more drug resistant strains of bacteria.

Another problem with UTIs for people with SCI is that they may not even be able to feel the hallmark sign of a UTI, which is painful urination.

“Early and rapid diagnosis of UTI, in particular in people with SCI and other neurogenic conditions such as MS that are associated with loss of normal bladder function, is critical for rapid treatment and prevention of other serious urinary and general complications that are secondary to untreated

Spring/Summer 2016 Issue

37

research

THE FUTURE OF DIAGNOSTICS: Dr. Shadgan’s device for diagnosing UTIs is about the size of a credit card, and promises to provide immediate confirmation of a bladder infection. The existing method of diagnosing UTIs is urinalysis to test for the presence of bacteria.

“NIRS is a non-invasive transcutaneous optical technique

disciplinary clinical research project, funded by Rick Hansen In-

that uses light in the near-infrared spectrum to monitor chang-

stitute, to look at the accuracy of our method in diagnosis of UTI

es in the tissue oxygenation and local perfusion level by math-

in people with SCI.” That study, being led by urologist Dr. Mark

ematical calculation of the amount of absorption and diffusion

Nigro, is taking place at the Brenda and David McLean Integrated

of the light photons emitted into the tissue of interest,” explains

Spine Clinic at the Blusson Spinal Cord Centre in Vancouver. The

Shadgan.

goal is to study 100 patients.

In simpler terms, it works like this: the light, which is com-

While Shadgan cautions that results won’t be known for

pletely harmless, is directed from outside the skin into an area

some time, he is optimistic. “From collected data so far, it looks

of interest on the body. A sensor records how much light returns

that we’re working on a promising method for early diagnosis of

to the device. When an infection is present, more oxygen (and

UTI,” he says. He envisions a reasonably priced device that will

more blood flow) is present, and this diffuses the light so that less

not only be available to medical specialists and family doctors,

returns to the sensor when compared to a scan of healthy tissue.

but also to anyone susceptible to UTIs who could use the device

In this adaptation of NIRS, the bladder is scanned, and so is a location on the patient’s thigh as a control site.

wherever and whenever they want for daily self- screening.

“That’s right, our ultimate goal is to design a handheld,

“When the measurement over the bladder is significantly

user-friendly and simple to-use device for screening and early

higher than the measurement on the control site, it may indicate

diagnosis of UTI at clinics and for daily monitoring of high-risk

the bladder is inflamed,” explains Shadgan.

individuals at home,” he says.

The device is about the size of a credit card and is entirely

Shadgan’s work was funded in part by the Rick Hansen

non-invasive. Using it, Shadgan and his colleagues were able to

Institute, the UBC Urology Foundation, and the Michael Smith

diagnose UTI in 12 pediatric patients. Those impressive results

Foundation for Health Research, and supported by ICORD.

were recently published in the Journal of Pediatric Urology.

“We have examined feasibility and proof of principle of this method,” says Shadgan. “We are now conducting a larger, multi-

38

Reprint from Summer 2015 issue of the Spin.

Spinal Columns

opinion

From My Perspective

by Larry Pempeit

parties do as well. Too bad they don’t

written many letters during my life and

tell anybody about it. Or do they think

I didn’t write to any politicians. Shame

it’s not really worth mentioning?

on me! It’s probably because I was just

When I have participated in com-

a little apprehensive and maybe not as

mittee meetings where agencies that

confident as I should be. Plus, it crossed

represent people with disabilities have

my mind…why should I be the only one

been in attendance, I have brought up

out there concerned enough to write.

the issue of lack of visibility about dis-

Negative thinking.

ability issues. I received an answer that

What I’m getting at, I guess, is that

There’s something that I’ve been

I thought was irresponsible. It was sug-

we have agencies that say that they’re

stewing about for the last six months so

gested that people with disabilities need

doing advocacy on our behalf (people

now I’m going to get it off my chest and

to bring the issues up and they should

with disabilities) but they have been, far

pass it on to you.

be writing letters to politicians as well

too often, silent on our issues. Where

In the past year we had two elec-

as the media. And what have agencies

are they? Is it that they are receiving

tions, one provincial and one feder-

been doing? It would seem to be noth-

funding from government so there is a

al. As we went through the provincial

ing! Maybe they have produced papers

“let’s not bite the hand that feeds you”

election I was disappointed that I didn’t

that they have sent to politicians. That’s

reasoning. Or is it that they believe that

hear much about disability. Most of the

great. But politicians probably get hun-

silent politicking will get results? Who

issues related to the economy, essential

dreds of papers written on various seg-

knows!

services, climate change and other im-

ments of our society. Do you think they

Maybe we should be more active at a

portant issues - but I didn’t hear any-

really pay attention to them or have

board level to ensure our issues are

thing related to issues that persons with

time to pay attention to them? I think

brought forward at the political level

disabilities must deal with on a daily

not.

as well as to the general public. Most

basis. It would seem there are no is-

And about people with disabilities

boards are looking for members willing

sues with: income levels, home care and

writing letters…are they expecting peo-

to put some time and energy into their

housing needs, high unemployment,

ple who have been disenfranchised for

organization.

accessibility and a host of other issues.

years to rise up and put pen to paper

I’ve probably shot myself in the

We must be living in a wonderful world

and write a letter? Give me a break. It

foot with this editorial and won’t be

here in Alberta.

takes skill to write a credible letter and

receiving any free coffees for a while!

Then we had the federal election.

many of us, able-bodied or not, don’t

Anyway, that’s how I see it.

Again, didn’t hear of any disability is-

have the confidence to do that. Hell, I’ve

sues. No! I should say there was some press related to persons with developmental disabilities. Not surprising, as

Join us on the greens this summer Supporting Spinal Cord Injury Alberta

this group and the agencies who work with them, have always been strong advocates.

When I asked my local MP, Linda Duncan, why disability issues didn’t seem to be on any of the political party’s platforms, she replied that the New Democratic Party does have policies that pertain to disability. I’m sure other

Spring/Summer 2016 Issue

August 12, 2016

Ron Hodgson Chevrolet Buick GMC Golf Classic

August 11, 2016

Marlin Styner Memorial Golf Classic

River Bend Golf and Country Club Red Deer

Contact doug.manderville@sci-ab.ca 403-341-5060

Glendale Golf and Country Club Edmonton

Contact angie.barron@sci-ab.ca 587-410-2521 or jacqueline.jewitt@sci-ab.ca 587-410-2566

#golf4sci

www.sci-ab.ca

39

regional news

What’s New In Alberta Provincial

Premier's Council Awards Each year, the Premier’s Advisory Council on the Status of Persons with Disabilities recognizes Albertans who have demonstrated outstanding achievement and leadership in making positive changes that create inclusive, barrier-free communities where persons with disabilities can fully participate. This year, the Gary McPherson Leadership Award was presented to Calgary SCI Alberta staff member Cal Schuler.

The Award of Excellence in Community was presented to long time SCI Alberta volunteer and current board member, Chris Schamber. Congratulations to both of these individuals for their outstanding work on behalf of persons with disabilities.

Cal Schuler

Community Access for Persons in Continuing Care This is a program administered by SCI Alberta in specific locations and funded by Alberta Human Services continues to provide much needed support to ensure individuals living in long term care (under the age of 65) are able to participate in their communities through activities such as classes, shopping, theatre, etc.

Staff Retreat Chris Schamber and Tara Chisholm

International Day of Persons with Disabilities

SCI Alberta came together for a one day provincial retreat in Red Deer to review and discuss plans for future development. Way to go team!

Various SCI Alberta offices throughout the province contributed to the success of the International Day of Persons with Disabilities held on December 3rd, 2015. The day was celebrated in various ways such as PechaKuchaAbility in Edmonton, a lovely evening of inspirational videos and speakers in Grande Prairie and an awards presentation, live dance and documentary sneak peak of the video “Unlimited” in Lethbridge.

Edmonton

The Edmonton Peer Program continued to be active in spite of lim-

ited human resources. With the help of volunteers, activities included a peer BBQ, a poker tournament, a Got Da Blues get together, a Peer Christmas party as well as other activities. The Edmonton office also participated in various activities, including the International Day of Persons with Disabilities on December 3rd. Various fundraising activities took place such as Slide the City and the Ron Hodgson Buick GMC Golf Classic, etc.

A huge thank you to our friends at the Edmonton North Primary Care Network for helping to clean up the storage area in our Edmonton office. On September 18, SCI Alberta staff was invited to ATCO's EPIC campaign BBQ launch, where we were announced as charity of choice for their 2015 EPIC Campaign, along with Ronald McDonald House.

Zachary Weeks and Bean Gill

40

Spinal Columns

regional news

Grande Prairie

Medicine Hat

bowling events each Tuesday of every

office space with our good friends at the

month along with an Open House held

Multiple Sclerosis Society. We are now

on July 10th. Our Grande Prairie office

located at 101 – 1201 Kingsway Avenue

was also recognized by the Grande Prai-

SE, Medicine Hat. Drop by and check it

rie and District Chamber of Commerce

out! In addition to many other activities,

for five years as a chamber member. We

we also hosted a Medicine Hat BBQ Meet

continue to be very involved on a com-

and Greet on September 23, 2015, a nu-

munity level, particularly with the Acces-

trition workshop on November 17, 2015

sibility Advisory Committee.

and a two day “Discovering the Power in

Grande Prairie continues to hold peer

Our Medicine Hat office is now sharing

Me” workshop in November. Adaptive Michelle was Bowling Champion of the

Curling partnered with Medicine Hat

Day with an awesome score of 135.

Adaptive Sport and Recreation to hold Adaptive Curling through November to February.

Lethbridge

A big thank you to everyone who came out to our BBQ Meet and Greet on July 11, 2015 at Henderson Lake. The International Day of Persons with Disabilities was a huge success in December where a number of local speakers talked about their experiences with their own disabilities. The day included a dance workshop and an art workshop; an evening gala and awards ceremony where two local individuals received Premier's Council awards for Community and Education. The first ever Lethbridge Inclusion Awards was a fantastic way to celebrate and recognize individuals/organizations/businesses that work toward an inclusive Lethbridge.

Red Deer

Fort McMurray

4807 - 50 Avenue (sharing space with the Multiple Sclerosis

Murray office participated in an Accessible Parking Awareness

Society), Red Deer, AB T4N 4A5. Contact information remains

Day on November 27th with information and support from the

the same at 403-341-5060 or reddeer@sci-ab.ca. Peer activi-

City By-Law Department. Plans are underway to film a winter

ties included a Red Deer Show ‘n Shine and Hot Dog BBQ on

safety video with funding provided through a Crime Prevention

July 11 as well as a Health and Wellness Peer Conference on

and Community Safety Grant.

The Red Deer office of SCI Alberta is now located at 105,

In partnership with the Multiple Sclerosis Society, Fort Mc-

September 4, 2015. In addition, a very successful golf tournament was held in August.

We are happy to announce that additional new housing has become available in Red Deer operated by Parkland CLASS and FCSS. Twhis is shared accommodations with other persons with disabilities and would be great for transitioning back into the community. All units have varying degrees of accessibility and rental costs and some may be staffed with caregivers.

For more information, contact doug.manderville@sci-ab.ca or 403-341-5060.

Spring/Summer 2016 Issue

41

regional news

Calgary

SCI Alberta was sad to say goodbye to long time Calgary staff member Dr. Clark

Sloan who passed away peacefully on September 3rd, 2015 after a courageous fight with cancer. Clark incurred a spinal cord injury while working as a teacher but went on to earn a PhD in Psychology. This provided a powerful yet rare skillset. This combination was integral in assisting our members on their path to recovery after their own SCI. Clark had a great love for his work at SCI Alberta that lasted over ten years.

Clark’s insight into life’s many challenges as well as his dry sense of humor have been deeply missed.

In spite of the loss of one of our key

The late Dr. Clark Sloan

staff members, the Calgary Peer Program remained busy over the past few months with peer restaurant lunch/dinner events as well as a “Living Your Best Life” peer conference on September 24, 2015 which had the highest attendance in recent years. Between our sponsors, Pipella Law and Motion Specialties, Brasson Nissan as well as collaboration with Alberta Health Services, our amazing volunteers and our all-star speakers, Dr. Ian Rigby and Rob Parsons, it was a day Best Life Peer Conference

that will not soon be forgotten. We hope those in attendance enjoyed the conference and found the information useful. We were pleased to finish 2015 with our annual Peer Christ-

mas Dinner on December 6 which included a three course turkey dinner, motivational speakers, silent auction, door prizes and much more.

Led by our very own Certified Nutritionist, Kasey Aiello, SCI Alberta launched our newest service in Calgary which focuses on nutrition. In addition to services such as one on one nutrition counselling, we will also be hosting monthly nutrition workshops at our Calgary office! For more information, contact Kasey at 403-228-7427 or kasey.aiello@sci-ab.ca. On June 20, we were pleased to host our annual Family Fun Day, led by Cal Schuler, which had over 1500 people take part in the various festivities throughout Rotary Challenger Park in Calgary!

Thank you to everyone who participated in the Calgary Marathon raising over $50,000 for SCI Alberta. Special recognition goes to Shamel Elsayed who, with the support of his colleagues at Cenovus Energy, raised over $36,000. We also want to recognize “Team – Friends of Eric” who raised over $13,000. To register for this year’s event coming up on May 29th or for more information on discounted entry fees, contact: marilyn.erho@sci-ab.ca or 403-228-7434. The countdown is on!

In Memoriams

42

Cuyler Greene Weslyn Mather Curtis Nadeau Brenda Moore Wayne Peebles Stewart Prairie Chicken Tony Reid Paul Rogers Dr. Clark Sloan Dale Taylor Lorna Wadsworth

Edmonton Edmonton Calgary Edmonton Grande Prairie Brocket Calgary Rimbey Calgary Calgary Beaverlodge

Spinal Columns

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