Survivors Speak:Anna Bauer-Ross .......................1Home Accessibility foran ABI Survivor ..........................3 Walk and Roll - 2014 ..................4Living with a DisabilityConference ................................4Winter Safety ............................5Aphasia Camp 2013- A Success! ................................... 6Using Life Insurance To Multiply Your Legacy Gift ............................ 7Caregivers Corner ......................... 8

IN THIS ISSUE...

Conductive Education Newsletter • Fall 2009

The PhoenixFall/Winter 2013

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“You never know what can happen to completely change your life,” says Anna Bauer-Ross. She was a fit, vibrant 36-year-old mother of two enjoying a vacation in the Bahamas when she was struck by a massive brain stem stroke.

Airlifted to St. Mike’s Hospital in Toronto, Anna spent over three months in hospital and rehabilitation. She had to regain her ability to walk, write and see. She still has severe left-side neuropathy as a result of her stroke, and her vocal chords never fully healed. Now five years post-stroke, Anna lives a full active life, parenting her teenage girls, attending school with the eventual goal of becoming a social services worker, and volunteering with March of Dimes Canada’s Peers Fostering Hope program.

Survivors Speak:Anna Bauer-Ross

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Anna Bauer-Ross

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The Fall/Winter Phoenix edition will be printed for distribution at conferences and information sessions, but will not be mailed. It will be available online and can be emailed as well.

Limited copies can be sent to groups for distribution.

Please email gwoticky@marchofdimes.ca to be added to the email distribution list.

The Phoenix

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Helping you Survive and Thrive after a Stroke

Survivors Speak ... continued from page 1

Support from fellow survivors is so beneficial in helping to regain independence and confidence. Peer support provides emotional and practical support in a safe environment. Survivors can share their knowledge and experiences, hopes and concerns – without judgment. The healthcare system wants to integrate people back into the community. The Peers Fostering Hope program was born to facilitate this.

Peers Fostering Hope sends trained volunteers, stroke survivors themselves, to hospitals to speak to people who have recently had a stroke. They lend an ear, hold a hand, and most importantly, offer HOPE. Because of the Peers Fostering Hope program, survivors are more equipped to deal with the transition back to their homes, communities and loved ones.

Anna volunteers at Toronto Western Hospital in the acute care ward. She sees patients who may be only two to three days post-stroke. It is the most intense time for stroke survivors and their caregivers. Anna is there to let the people she visits know they are not alone, and to answer the myriad of questions from both patients and family members. Although she typically doesn’t see a patient more than once, being able to provide solace and comfort in the immediacy of a stroke makes her work especially rewarding.

“I would have given anything to have somebody come and talk to me, to share feelings and experiences after my stroke, to have given me a sense of relief,” says Anna. “I like engaging with both survivors and their family members or primary caregivers, and let them know I’ve been where they are, and I’ve come out the other side,” she says.

She counsels survivors on the importance of medication maintenance, staying active and engaged in the community, and remaining motivated in recovery.

“I always say that recovery never ends. I find there are things I can do now, that I couldn’t do six months ago, there are changes every day. Stroke recovery is a journey, and it may have bumps and challenges along the way, but there are always improvements.

Knowing that I am helping people at a time when they most need help, it feels good for me as well. I am grateful to March of Dimes for the opportunity to make this difference for fellow survivors,” she continues.

***

Peers Fostering Hope supported by the Dr. Ed and Bobby Yielding Fund for Stroke Recovery was born due to a large bequest left by Dr. Ed and Bobby Yielding. The gift of $220,000 will help continue the program for the next seven years. Bobby was a stroke survivor, and the family’s very generous gift will help other survivors to thrive in their recovery. March of Dimes gratefully acknowledges their generosity.

Dr. Ed and Bobby Yielding

The effects of a stroke are not the same for everyone. Cognitive impacts, balance or coordination challenges, mobility, ambulation, weakness, tiredness, paralysis, pain, numbness and problems with bladder or bowel control can all change the way a person functions in the home. Medical intervention and rehabilitation are essential components in order for a stroke survivor to reach their goals and function safely in their home and in the community.

An Occupational Therapist along with a Home Modification Specialist can help to determine the most suitable and cost-effective solutions to address any safety issues that may exist and provide solutions for barrier-free living.

It is a good idea for a stroke survivor to have a trial visit at home before they are discharged from the hospital. If changes and corrections to modifications are required, they can be made before returning home permanently. Home safety and accessibility should be an active component of a discharge plan.

Not all modifications have to be extensive and expensive. For example, a simple, but properly-built ramp or grab bar can provide significant independence. Also, before spending a lot of money on modifications, remember function can continue to return and what someone requires in rehab may not be what they need a year or two post-injury. The basics, like ramps, usually top the list of immediate needs after discharge from rehab.

Although not always apparent, the bathroom can be the most dangerous place for people with physical disabilities. Without the proper layout and non-slip materials on floors and walls, slips and falls can cause further injury. Your typical bathroom modification usually consists of converting a conventional bathtub to a walk-in or roll-in shower.

The following is a list of items for a standard bathroom modification:

• Remove bathtub and convert to roll-in shower• Sloped shower base to allow proper drainage• Install 2”x2” non-slip tiles to the bathroom and shower floor• Install 6”x8” matte tiles to shower walls• Update all faucets to posi-temp single lever faucet• Install hand-held shower wand• Install comfort height toilet• Install a ground-fault interrupter (GFI) electrical outlet• Install watertight light in shower area• Install ceiling exhaust fan• Widen entry door to a minimum of 34”• Install wall-mount sink/roll-under sink• Insulate exposed piping• Install water-resistant gypsum board• Seal all tiled areas• Install towel bar, toilet holder and tilting mirror• Install chrome shower bar with vinyl curtain• Install three to four chrome grab bars.

Many safety issues come into play when having to use the toilet. Consider installing a grab bar or a handrail. A grab bar is usually installed along the side of a toilet and also across the back wall of the toilet.

In the event that a wheelchair is required, consider installing a wall-mounted sink or a “roll-under” sink. Wall-mounted bathroom sinks are not only space saving but ideal for people with restricted movement. A “roll-under” sink usually has a bigger counter but works in the same way as the wall-mount. All exposed pipes should always be covered or insulated to prevent leg burns.

No two individuals will be exactly the same post-stroke, and as such, recommended modifications will vary by person and living environment.

Home Accessibility for an ABI Survivor

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The Phoenix Newsletter • Fall/Winter 2013

Provided by John Groe of Accessible Daily Living, www.accessibledailyliving.com

We have created an online community for advocates, donors, family, friends, fundraisers, recipients of support, staff and volunteers called myMOD.ca

myMOD.ca allows you to participate on your own schedule and exposes all our supporters to the great things March of Dimes does.

You are a key member of our community and without you we could not make a difference enhancing the independence and community participation of people with physical disabilities.

Join us at myMOD.ca and share the experience of making a difference.

Walk ‘N’ Roll 2014Our 2014 Walk ‘N’ Roll events are just around the corner! We have lots of new and exciting developments this year and we would love to have you join us and become a part of this ever increasing, fabulous event that just wouldn’t be possible without you!

Here is a recap of last year’s successes to get you in the mood!

Total amount raised by the peer support groups: $34,037.25

Our largest fundraising group for the second year running was our Stroke Recovery Burlington Chapter! They raised $8,002!

Walk ‘N’ Roll 2013 was small but mighty. We had media at almost every location. SNAP, Cogeco TV and many local celebrities and politicians came out to show their support. We had sponsorship once again from Scarborough City Cab.

New in 2013, we had Shoppers Home Health come out and run local wheelchair clinics at three locations. They also donated a raffle prize at each location. Thank you to Shoppers Home Health for attending our Calgary, Newmarket and North Bay Walk ‘N’ Rolls!

We had 16 groups that came out to make our Walk ‘N’ Roll events in 2013 a great success. Please contact Gemma Woticky at gwoticky@marchofdimes.ca to start planning for Walk ‘N’ Roll 2014.

Living with a Disability ConferencesThe Living with a Disability Conference has been offered as part of Peer Support Services, a program of March of Dimes Canada, since 2009. We have organized approximately 25 different conferences, in conjunction with several partners, at various locations across Canada to connect consumers and health professionals with services in their community.

The conference itself provides a platform to showcase community services. It not only emphasizes the services that are readily available, it also highlights the potential gaps in programming.

This enables the committee organizations to identify these concerns and potentially develop solutions to address gaps in community care. Follow-up conferences have been offered in several locations.

This has been a successful initiative for the past six years and is continuing to grow exponentially. Currently March of Dimes Canada is organizing conferences in the following locations: Halifax, Nova Scotia, Prince Edward Island, Newfoundland, Kingston, Windsor and Sarnia in Ontario, Calgary, Alberta, and Vancouver B.C.

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Helping you Survive and Thrive after a Stroke

The Phoenix Newsletter • Fall/Winter 2013

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Cold weather can be especially problematic for people with health conditions that affect mobility and balance. In addition to the external hazards created by icy conditions, exposure to cold can increase the risk of accident and injury by aggravating symptoms.

Nerve pain - Cold can affect how the body reacts to temperature changes for people with nerve pain and neuralgia. Cover your face and any exposed skin to help alleviate pain.

Muscle spasms - Cold can increase spasticity and stiffness in people with Multiple Sclerosis or muscle control disorders.

Numbness - Some people lack sensation and are unable to distinguish hot from cold. Avoid exposure to cold and keep a safe distance from radiators and heaters.

Blood pressure - people with blood pressure and vascular problems are vulnerable to cold and should avoid extended exposure.

Immunity - viruses spread more during winter months and people with neurological conditions such as Parkinson’s and Multiple Sclerosis have a higher susceptibility to illness and risk of complications from being sick.

Dizziness and off-balance - Slippery surfaces are especially dangerous for people with balance or weakness problems who lack the necessary reflexes and strength to traverse safely.

Fortunately the dangers of winter are manageable and don’t have to interrupt your life. To stave off the above-mentioned risk factors for accident and injury this winter, keep warm and take the following basic precautions:

• Wear appropriate footwear - Choose sturdy winter boots and shoes with soles made from slip-resistant rubber that provide traction on ice and snow.

• Salt pathways - Public pathways will be salted for traction but you will need to salt or sand your own walkway, driveway, stairs and all paths you might take to reach the treated pavement.

• Wear walking aids - Make a nominal investment in some winter safety gear to make it easier and safer to walk on icy surfaces. Wear rubber grips with steel cleats that slip over your shoes and improve traction, like Hugo Snow Grabbers or Snow Paws. Cane users can add a cane tip designed for use on ice and snow, such as the Hugo Ice-O-Grip. Walking with trekking poles, also called nordic poles, can help motivate you to take walks and keep you safer on slippery surfaces.

Winter Safety

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• Adopt the correct posture and gait for walking on icy ground. If you have to walk on ice or slippery surfaces, use a safe technique. Keep your centre of gravity as low to the ground as possible. Tighten your core and engage your pelvic floor by contracting your pelvic floor muscles, an important element of core stability. Widen your stance. Take small steps instead of big strides, similar to shuffling your feet.

Exercise preventively - Exercise can help avoid accidents by training the body to react to shifts in balance. Bosu balls and yoga put your body in positions where balance will be required to train your core. Exercise programs that improve stability, balance, strength and reaction time have been shown to prevent falls in older people.1

As far as seasons go, winter is a wonderful time to be active outdoors as long as you take corrective measures to safeguard your well-being. Adapt your environment by treating the areas you traverse with salt for traction, and adapt yourself to your environment by dressing appropriately and using the correct gait, posture and walking gear to prevent accidental falls.

1 Balance, reaction time, and muscle strength in exercising and non-exercising older women: a pilot study. Lord SR, Caplan GA, Ward JA.

By Amanda Frank, Hugo Mobilitywww.hugoanywhere.ca

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From September 20-22, 2013, Aphasia Camp 2013 took place at Jackson’s Point on Lake Simcoe at the Salvation Army Conference Centre, hosted by March of Dimes Canada Stroke Recovery Canada® program and the York Durham Aphasia Centre.

Aphasia is a communication disorder that can result from stroke or brain injury. Aphasia can affect a person’s ability to speak, read, write or understand the speech of others. Campers with aphasia may also have a physical disability as a result of their stroke.

Sixty-four participants attended with 40 plus volunteers and staff onsite – the biggest camp yet!

The weather was temperamental but it did not dampen spirits! Participants enjoyed different recreational adapted activities including: fishing, chair yoga, art for communication, lawn games, a drum circle, nature walks, iPads for communication, traditional yoga, campfire sing-a-long (inside!), movement workshops, storytelling and a mocktail night along with the Canadian movie premier of the PBS documentary “After Words”.

This was the sixth Aphasia Camp hosted in Ontario and the first partnering March of Dimes Canada and the York Durham Aphasia Centre, along with the University of Toronto’s Speech and Language

Therapy Masters’ Program. It was sponsored by Harmonize for Speech and various local donors.

The weekend was founded by Stephen and Carol Goff, who attended a similar event in Wisconsin. The Goffs were, as always, instrumental in organizing this camp, providing their insight, expertise and general inspirational attitudes!

Organizers made every effort to make the camp communicatively and physically accessible to participants. A special thank you to all Aphasia Camp’s hardworking and dedicated volunteers and staff, as well as our many sponsors.

For more information about Aphasia Camp and upcoming camps, please contact Gemma Woticky at gwoticky@marchofdimes.ca.

Aphasia Camp 2013 - A Success!

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Group photo 2013Diane and Jenny after iPads for communications

workshop

Accessible golf in the rain Wayne Rutledge enjoys a moment with ourUniversity of Toronto, Speech and Language Therapy student

You can improve the quality of life for people with physical disabilities by supporting the vitally-needed work of March of Dimes.

One incredible way to leave a meaningful legacy of caring is to make March of Dimes Canada the owner or beneficiary of a life insurance policy. In addition to receiving generous tax credits for doing so, you can use the remarkable multiplying power of life insurance to make a gift that is bigger than you ever dreamed you could make.

You have many options. If you purchase a new policy exclusively for the purpose of making your donation, it’s best to choose one with a guaranteed rate of return that is paid off in a defined time period. You can also donate a paid-up policy that has outlived its original purpose.

Advantages of making gifts of life insurance:

1. Setting up your policy is free. No lawyers or accountants are required.

2. Immediate tax relief: By making March of Dimes Canada the owner and beneficiary of a new policy, all your premiums are considered donations and therefore tax deductible. Up to half of your premiums will be returned to you in tax credits. If you donate a paid or partially paid policy, you receive an immediate tax receipt for its cash surrender value.

3. Estate tax relief: By making March of Dimes Canada the beneficiary (not owner) of your policy, your estate will receive a tax receipt for the entire death benefit received. This tax credit may allow you to leave even more to your heirs!

4. Your gift of life insurance happens outside of your estate. It doesn’t go through probate and comes directly to March of Dimes Canada.

5. You don’t have to change your will. Gifts of insurance need not be mentioned in your will, but you should leave instructions with your executor to inform your insurance company of your passing, ensuring your donation is made in a timely manner.

If you would like more information about giving through life insurance, please call Daniella Sretenovic at 1-800-263-3463 ext. 7338, or emaildsretenovic@marchofdimes.ca.

Using Life Insurance To Multiply Your Legacy Gift

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Caregiver’s Corner “What lies behind us and what lies before us are tiny matters compared to what lies within us.”Ralph Waldo Emerson

“Caregiving often calls us to lean into love we didn’t know possible.” Tia Walker

“Many of us follow the commandment ‘Love One Another.’ When it relates to caregiving, we must love one another with boundaries. We must acknowledge that we are included in the ‘Love One Another.” Peggi Speers

“By loving you more, you love the person you are caring for more. ”Peggi Speers

“Affirmations are our mental vitamins, providing the supplementary positive thoughts we need to balance the barrage of negative events and thoughts we experience daily.”Tia Walker

“Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.”William James

“A wise man adapts himself to circumstances as water shapes itself to the vessel that contains it.”Chinese Proverb

“Opposition is a natural part of life. Just as we develop our physical muscles through overcoming opposition such as lifting weights we develop our character muscles by overcoming challenges and adversity.” Stephen R. Covey

“Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.” Melody Beattie

“The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.” Helen Keller

STROKERECOVERYCANADA®

a program of March of Dimes Canada