The journey back from brain attack

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Good rehabilitation services needed for all stroke victims, family says

By Joe Sornberger

John Anderson’s life as the driving force behind a high-tech startup firm ended when the lights went up at a Sunday matinee in an Ottawa movie theatre more than six years ago. “I clapped, then I tried to get up and walk and I couldn’t. I collapsed. My mind went numb. The right side of my body didn’t work.”

John’s life as a stroke survivor – coming back from brain attack so severe a neurologist compared it to a shotgun firing in his head Ñ began shortly after he “went to sleep for two days” and awoke to find he could not walk, talk, read or write. He remembers his aphasia well: “I picked up a book, Zen and the Art of Motorcycle Maintenance. A beautiful book. And it wasn’t in English to me.”

Turning 53 this spring, John walks without a cane, rides a bike and swims. He reads (“mostly mathematics, astronomy and biography”) and has taken refresher university courses in calculus. He does the cooking and cleaning and repairs the family’s bicycles. He studies the sky with a high-powered telescope that pokes out of his family’s dining room window. He drives. It is all part of the process of “getting back your life.”

“OK, so you’re not going to be the vice-president of engineering at a high-tech company, but you are the father of two children.”

John’s journey from his collapse in the movie theatre to his current “pretty good lifestyle” has been marked with setbacks and frustrations, inspiration and good luck – along with lots of hard work by him and his family. It has turned his wife Sharon, a dental hygienist, into a walking resource on post-stroke life (her Web site is www.strokesurvivor.ca) who is fighting for better rehabilitation services.

It was Sharon who insisted that John – who did not get the clot-busting t-PA when he arrived in hospital – begin physiotherapy immediately after he was sent home, even though she had been told it would not make much difference given the massive nature of his stroke. The family would have to pay for it themselves.

“I was told to look for a nursing home for John,” Sharon says. She felt differently. “I knew what the issue was. “You want to get good rehab going as soon as possible.”

Frank Nieboer, a board member for the Canadian Stroke Network, sees a greater need for co-ordinated effort that starts with a team approach from the speech, physio and occupational therapists and continues with the follow-through care from hospital to home.

Out of hospital two weeks before Christmas, John began private physiotherapy he has continued over the past six-and-a-half years – even during his four-month stay at a rehabilitation hospital. He would have physio when he came home on the weekends.

The family has spent more than $10,000 a year on therapy, something they have been able to manage because John is on long-term-disability from Nortel, who owned a 51% share in the startup John was heading at the time of his stroke. Nortel pays for half the physio.

“Should it be that way, that we have this service? If you are on Canada Pension and getting $900 a month, you wouldn’t be in this position. It shouldn’t be the haves and the have-nots when it comes to rehab,” says Sharon.

She works with a coalition that includes Neuro Home Rehab Service, the Aphasia Centre of Ottawa, the Ottawa Stroke Association, and stroke caregivers. “We want stroke services to be coordinated from hospital to rehab and to include community stroke services. Similar community-based efforts are in place across Canada.

“There are very few long-term studies in stroke. They know the brain grows, that things move and adapt. The brain grows new brain cells, functions lost are moved to other areas of the brain, and people learn to compensate if given the proper, enriched environment.

“Shorter rehab stays focus on compensation of function. For example, you are able to walk with a cane, not very fast and not up stairs … but more rehab would bring restoration of function, a more regular walk without a cane.”

Frank Nieboer, a board member for the Canadian Stroke Network, sees a greater need for co-ordinated effort that starts with a team approach from the speech, physio and occupational therapists and continues with the follow-through care from hospital to home. “Rehab doesn’t stop at the in-patient setting … Rehab is a life-long process,” he says. Mr. Nieboer, whose wife Louise had a stroke in 1977, wants to see more research “into what works in rehabilitation and why it works. What are the effective therapies?”

The Nieboers are founders of the Stroke Recovery Association of Alberta (www.strokerecoveryalberta.com ), which provides support to stroke recoverers and their families.

John was 46 when stroke hit. He was living a high-stress life of overwork and commuting to and from California while indulging a love for hamburgers and french fries – even though he knew he had high cholesterol. But he is less interested in “the tragedy” and more inclined to see how “fully functional” he can get.

“My body is partly damaged. But I want to push my right side so I can do whatever I can do. All of these things you have to deal with to become the person you are, with getting your life back.”

Ottawa writer Joe Sornberger is former national coordinator of the National Post.