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Saturday, September 12, 2009

Commitment evident at Aphasia Camp

Posted By CAROL STEEDMAN

My June 12, 2004, and June 12, 2006, columns were about aphasia, a condition shared by about 40,000 Ontarians.

Aphasia is a language impairment that results from a blockage or bleed in the blood flow on the left side of the brain. More commonly known as a stroke or aneurysm, this damage is a brain attack, in the same way a person can suffer a heart attack. Depending on the location and extent of injury, the loss of language affects each person differently. The ability to talk, read, write and comprehend conversation can be impaired. This doesn't mean that the person's intellect is affected. The person can think and knows what he wants to communicate, but must find an alternate way to express his thoughts.

My husband, Steve Goff, had a stroke 15 years ago in March, at the age of 48. It changed his life immensely. He was unable to read, write, speak, or move his right arm and leg. The physical impairment cleared quickly, but he remained unable to speak many words. He had speech therapy in Kingston, where he was living at the time. Now he speaks a few words, but mainly uses writing and gestures to communicate.

I happen to be able to read in reverse, as a mirror image, so Steve writes words in the air, and I'm usually able to catch his meaning. I'm sure it amuses or captivates people who happen to see us in a discussion in a store or restaurant.

We found that we use whatever works to get a message across. He willingly uses mime, pointing and his sense of humour to convey his thoughts. In fact, I often need to remind myself that Steve is disabled. I prefer to think of him as differently-abled.

Over the years, Steve applied himself to use what worked, to persevere and seek a purpose. He dealt with depression while daily trying to regain reading skills. At a local coffee shop, Steve pored over the newspaper to pick out hockey or baseball scores, and finally accomplished being able to read and retain a sports article. He now reads and writes readily, and can once again do math, which was also lost, since math concepts are language-based.

Early in his years with aphasia he realized that communicating would require more than talking, and he set out to do it. That attitude has carried him far.

His daughter, Teresa Goff, did a piece for CBC radio in 1999, which proved to be a turning point for Steve. In her loss as an adult daughter, whose father has aphasia, she helped him discover his purpose.

With CBC's approval, we had 1,000 tapes of "Talking Through Aphasia" made, and, as I have joked, "Steve was now armed and dangerous!"

With a pen, notepad and paper, he approached various hospitals, Heart and Stroke offices, and anyone who would hear his plea for an aphasia conversation group to be started in Brantford.

Fortunately, he met Jan Roadhouse, a wonderful speech-language pathologist who had a similar desire to have a program for people after they were discharged from speech therapy.

Together, they initiated the aphasia programs that run twice a week at the Adult Recreation Therapy Centre on Henry Street in Brantford.

That was in 2001. When we moved to Waterford, a similar program was started here in 2004. It has expanded to this year include Susan Harper, a speech pathologist, who is centred at ARTC, and provides programs in Brantford, Simcoe, Paris and Caledonia for adults with aphasia.

Since 2002, Steve and I have been invited many places as keynote speakers, where he writes his ideas in words and phrases with a large marker on flipchart paper, while I explain as needed. Ironically, this man who had been a successful businessman and was studying to become a minister when he had his stroke, is now an advocate for aphasia.

After attending a weekend camp near Eau Claire, Wisconsin, in 2006 as keynote speakers, we returned to Canada, so impressed with the experience that we wanted to bring the concept here.

Mary Beth Clark and other speech-language pathologists we met in Wisconsin were very willing to help us plan a similar camp in Ontario.

A remarkable partnering occurred, involving many organizations and individuals, to develop Aphasia Camp 2008. Fundraising and numerous donations helped to defray the cost to campers. Last September the first Canadian aphasia camp took place at Tim Horton Onondaga Farm Camp, near St. George. For two days the people affected by aphasia could forget the condition, and with the help of volunteers and skilled professionals once again enjoy biking, fishing, golfing, crafts, campfires and stargazing. It was such a success that Aphasia Camp 2009 has registered over 100 people who will be in attendance next weekend.

At last year's camp, the energetic and cheerful camp planner, Laura Klaponski, kept things running smoothly as she functioned on very little sleep. In the wee hours of Saturday morning she slipped a schedule under the doors of the sleeping volunteers.

Near the bottom of it was a quote by Margaret Mead, which aptly sums up the work of countless speech-pathologists, volunteers and people involved in this aphasia camp: "Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has."

Our Town is an Expositor feature that presents news and views from communities in our area. Carol Steedman is a freelance writer who lives in Waterford.

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