Who better to tell the story of the Aphasia Institute than the people who walk through our doors everyday? They arrive with some nervousness and hesitation, but leave feeling more confident and excited about being an active participant in their communities again and the world around them.
The Stroke Collaborative, held in Toronto in October 2011, was attended by over 600 Ontario health care providers. Jack and Sybil Geller, who both passed away in early 2015, were invited to give the consumer keynote, a first for the Aphasia community. The Gellers were very vocal and passionate supporters of the Aphasia Institute, and ambassadors for aphasia awareness.
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Most of us take for granted being able to read a bedtime story to our children. But for Scott, who acquired aphasia after a stroke in 2008, he lives with the challenge of trying to communicate and parent his boys.
Jane & Scott, with their boys
The Ardiel family piles into their big bed for a favourite nightly ritual. Jane reads a storybook aloud to her boys and husband while running her index finger along the page under the words so six-year old Ben can follow along. Sometimes Ben reads a page. Aiden, at four-years old is too young to read so he snuggles in to enjoy the tale. For dad Scott, although reading a sentence aloud is a struggle, he participates as fully as he can in this bonding family routine.
Most of us take for granted being able to read a bedtime story to our children. But for Scott, who acquired aphasia after a stroke in 2008, he lives with the challenge of trying to communicate and parent his boys. “[Aphasia] , that’s been a struggle from the beginning. [I] can’t tell [the boys how to do things], but I have to show them,” says Scott.
Even though Scott knows what he wants to say, he has difficulty expressing it. Sometimes he finds it hard to understand what others are saying and reading can be difficult. Scott and Jane found the Aphasia Institute to be a “nugget of hope” once Scott was released from rehab after his stroke. They found comfort in an environment that understood the impact aphasia had on the whole family.
Jane joined the Family Support and Education Group and found a community that empathized with her experience.
Today Scott is a member of the Toastmaster Aphasia Gavel Club and an active volunteer at the Toronto Rehabilitation Institute. Jane has made it her mission to educate every medical professional they have encountered along this journey about aphasia.
“Much of my own healing through this experience has come from the opportunity to help others. There’s a saying – we achieve happiness when we seek the happiness and wellbeing of others,” says Jane.
In 2006, Dr. Donald Meeks was awarded one of the country’s highest distinctions – the Order of Canada – for his outstanding contribution to the Addiction field in Canada. No one could have predicted that just two short years after this high point, Don would experience two strokes that would forever change his life.
Don and Sherril Order of Canada
Dr. Donald Meeks dedicated his life to helping people with addictions, building a distinguished reputation as a Professor at the University of Toronto and the Associate Director of the Clinical Institute at the Centre for Mental Health and Addiction (CAMH). His work took him around the world as a special consultant to the United Nations and the World Health Organization.
In 2006, he was awarded one of the country’s highest distinctions – the Order of Canada – for his outstanding contribution to the Addiction field in Canada. No one could have predicted that just two short years after this high point, Don would experience two strokes that would forever change his life.
After the second stroke, Don was left with lingering weakness on his right side, permanent damage to his memory, and aphasia.
For an academic man who had built his career on his ability to read, write and express himself verbally, aphasia was an unexpected blow. “I suffered the most from a lack of self confidence in pubic situations – I feared that I would be inarticulate or lose my train of thought,” says Don. “Being referred to the Aphasia Institute was a ‘stroke of luck’!”
Don and his wife Sherril entered the Aphaisa Institute’s Introductory Program with great hope…and the program delivered. Don’s confidence began to build and Sherril connected with fellow caregivers and built a network of support for herself. Together, they learned about aphasia and some of the supportive communication techniques.
Don quickly graduated to the Aphasia Institute’s Toastmasters Club, where he continues today. Sherril remains connected to the Family group. Both are looking ahead with optimism although they appreciate that the journey has been very different for each of them.
Looking back, there’s an irony to having spent decades helping others only to find themselves, as Don refers to it, ‘on the other side of the gurney’.
Both know that the Aphasia Institute will be a key part of their lives for some time to come. “This is a best practice demonstration of everything I taught for years,” says Don. “The community at AI is astounding – we feel so welcomed and very much a part of this wonderful, wonderful community.
Aurora was a family physician with a busy practice when she suffered a massive stroke in 2006. “This place (Aphasia Institute) has given us hope and a support system”.
Aurora and Buddy
Aurora was a family physician with a busy practice when she suffered a massive stroke in 2006. Hoping that the Aphasia Institute might be able to help his wife, her husband Buddy brought an unresponsive Aurora to the Institute’s Introductory Program. Aurora sat slumped in her wheelchair, barely looking at her communication partner throughout the first session but over the course of the program, glimmers of hope began to emerge. Volunteers and staff were able to engage Aurora and prompt her to look up when in conversation – she even started initiating chats .
Through supportive Institute programs, Aurora and Buddy worked together to develop new skills and today Aurora continues to thrive, communicating her thoughts and asserting her desires and wants at home. Although their lives have been forever changed, “this place (Aphasia Institute) has given us hope and a support system,” says Buddy.
Sam was an athletic 18-year old living in Kenya when he sustained a serious brain injury during a sporting accident.
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Sam and his mother
Sam was an athletic 18-year old living in Kenya when he sustained a serious brain injury during a sporting accident. The injury resulted in aphasia and with little support in Kenya, Sam’s mother was desperate for help. She was frustrated that people saw her son as “stupid” and was deeply concerned as her son became increasingly depressed and hopeless about his future.
She contacted the Aphasia Institute and because of our international training program, we were able to connect Sam and his mother with a Speech-Language Pathologist in South Africa who had been trained in our methods. Sam is now beginning to see hope on the horizon.
RONNIE BRANIGAN
Volunteer, Introductory Program
When Ronnie Brannigan retired in 1993, she knew immediately that she wanted to become a part of the Aphasia Institute. “I wanted to give my time to something meaningful and I knew that I could make a difference at the Aphasia Institute.
Ronnie’s certainty came from her brief interaction with the Aphasia Institute more than 30 years ago when her husband had a stroke in his 40’s. It was then that Ronnie first learned about the Aphasia Institute.
Today, Ronnie is one of the longest-serving members of the volunteer team. She volunteers two days every week, working with the Introductory Program and in our Conversation Program. She says her greatest joy is being able to witness the change that happens through the Introductory Program. “At first, people are shy and withdrawn but by the third or fourth week, you see the group coming together to support each other, and you see confidence building in each member as they learn new skills.”
Providing support to spouses is particularly fulfilling for her. “Often this is the first time that they have the opportunity to meet others in the same situation. They can say whatever they want without fear of judgment and they can hear from others who have had similar experiences. Having lived it first-hand, I can appreciate what they go through.”
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ANNA TAYLOR
Volunteer, Introductory Program and Community Aphasia Program
Anna Taylor saw a sign that caught her eye at the grocery store one day: Aphasia Centre. When she got home, she looked up the word “aphasia” in the dictionary never having heard of it before. Two days later, the universe seemed to speak to her again when she came across a recruitment ad in the paper for volunteers at the Aphasia Centre. That was 17 years ago, and Anna is one of Aphasia Institute’s longest serving volunteers.
“I get enormous pleasure from the work I do. I think there are very few things more rewarding than seeing somebody who really has not had what I call a proper conversation,” says Anna.
In the Introductory Program, she primarily works with clients who have very little verbal output, and who arrive apprehensive. “They might be thinking – ‘do they know I can’t speak’ , ‘do they understand how difficult this is for me?’, “ says Anna. “However all of that changes after just a few weeks as confidence grows and members begin to open up and express their opinion, share their joys and their sorrows in a new community that offers hope for the future.”