June 02, 2020
June is a special month. Apart from including the first days of summer and the longest days of the year, June has been named
Stroke Awareness Month,
Aphasia Awareness Month and
Brain Injury Awareness Month. What do all three have in common? It’s all about the brain!
Over the month, we will be profiling the people we serve, focusing on people recovering from stroke and those who are living with aphasia and brain injury.
Please take a look at the profiles to learn about how stroke, aphasia and brain injury change the lives of people, as well as what March of Dimes Canada does to provide support and how we’ve adjusted to make sure all people with disabilities have access to care and connection during these difficult times.
Paul Munro
Paul’s stroke happened in December of 2013. He left work early, not feeling well, and later that day his son found him on the bathroom floor.
“I was paralyzed on my right side. I couldn’t talk,” Paul says via email.
He spent the next few weeks in an intensive care unit. Doctors described his stroke as ‘catastrophic,’ and told his wife, Sherri, that his only option – if he lived – would be long-term care.
“I was on a feeding tube, and wasn’t aware of anything going on,” Paul continues. “I couldn’t speak read or write. But my wife saw a light in my eyes that told her not to give up on me.”
Paul wasn’t considered a good candidate for rehabilitation, but one of the hospital’s rehab workers disagreed. She lobbied to give him a chance, and it paid off.
“I’m very grateful,” Paul says. “The communication centre in my brain was damaged, but I regained use of a muscle in my leg that allowed me to walk again. I’m so thankful for that.”
“I was in denial for a few months after Paul’s stroke,” says his wife Sherri. “I was sure one day I’d visit him in the hospital and he’d be his regular self.”
Unfortunately, that didn’t happen. Reality hit when Paul was discharged.
“It was just him and me,” she says. “It was a frightening experience, not just the physical challenges, but also dealing with the emotions.”
Adjusting to the new normal was difficult, and so was communication in the beginning. “He couldn’t speak, read, or write, in the and his gestures were all very similar,” Sherri adds. “It was frustrating for both of us.”
Paul and Sherri were lucky enough to have a strong network of family and friends to support them. And Paul’s outlook has helped.
“He makes it easy for me. He sets goals and works at achieving them. If there’s a way he can do it himself, he will.” That can require patience, Sherri admits, since it would be easier for her to do it for him. ‘But I remind myself that this is about his journey, too.’
Today, Paul is living life to the fullest. He walks miles every day and he has taught himself to paint with his left hand. “I keep busy, but it looks different than it used to,” he adds. Paul regularly attends a weekly March of Dimes Canada aphasia group and After Stroke Peterborough. He goes to Aphasia Camp by himself, and Wellness Retreats with Sherri. And they both volunteer with our Peers Fostering Hope program.
“Before COVID-19, we’d go into the hospital and visit stroke survivors. Paul shows them there’s life after stroke, and I give them insight from a caregiver's perspective,” says Sherri.
There are challenges, of course. Paul can’t speak at all, and his reading and writing – while improving - are limited.
“But life is still good,” he says. “It’s just different now.”
“And I always get the last word in,” Sherri jokes.
Sahar Omarzadah
Sahar was in the last semester of a Political Science degree at York University when she started feeling unwell.
“I’m not sure what happened that day,” says Sahar. “I just know what I’ve been told.”
She was exhausted, studying hard for exams, when she started acting strangely after coming back from the gym.
“A water bottle someone had given to me as a gift was stolen while I was at the gym. . I went home very upset. I was having a really hard time accepting that someone had stolen my precious water bottle. I couldn't sleep and I had a terrible headache. Finally, at 5 a.m. I got up and expressed concern to my parents that something was seriously wrong and I needed to go to the hospital.” Her parents took her to the hospital, where she ended up spending several days.
“They couldn’t figure out what was wrong,” she says. “Medication didn’t work. All the tests came back clean.” When doctors couldn’t find a medical explanation, they decided that Sahar was dealing with a mental illness and put her on a 72-hour psychiatric hold. She stopped eating and drinking, developed a high fever, started seizing and passed out.
Not realizing that Sahar’s brain was swollen, doctors shocked her back to consciousness. Her brain swelled further. She was put into an induced coma to stop the seizures, but her condition continued to deteriorate. Eventually, Sahar was diagnosed anti-NMDA receptor encephalitis – a growth on one of her ovaries was causing anti-bodies to attack her brain.
Sahar was in the coma for eight months while her doctors waited for the swelling in her brain to subside. When she was brought out of it, she had to re-learn everything. “I couldn’t talk, eat, brush my hair, shower. I was like a baby again.”
As her rehabilitation progressed, she reached out to York Simcoe Brain Injury Services, a partnership between March of Dimes Canada and Mackenzie Health, for support. She was paired with a rehabilitation worker to help her navigate her new reality and, at first, they focused on things like exercising and workouts, or setting a schedule.
“Then my goals started to change,” Sahar remembers. “I worked on my hand-writing, and she helped me apply to York for my degree.” It took a lot of back and forth, and support from her worker, but Sahar was granted her Political Science degree just last year. She’s the first person in her family to graduate from university.
“I wanted my parents to have that,” she says. “It was a nice experience for all of us.”
Since then, Sahar has begun a Public Relations program at Seneca, which she’ll finish in August, and she has her driver’s license back, which gives her freedom of mobility.
“When I tell my story, people are really shocked. They have no idea,” says Sahar. “And that’s the thing we need to realize – we have no idea what someone’s been through. Give the benefit of the doubt.”
Ken Vandeligt
In 2004, Ken Vandeligt was an active 24-year-old man – a heavy equipment operator who loved to fish, hunt, and work on cars; engaged to be married; planning to buy his first house.
“It was a totally independent life,” he says, “I loved it.”
Then he survived an ATV accident that resulted in a brain injury. Ken was comatose for several weeks with injuries that were described as catastrophic, and a poor prognosis.
“He doesn’t remember the accident,” his mother Joe-Ann says. “Or the 11 months of living in long-term care afterwards. That’s probably for the best.”
Ken was using a feeding tube and required 24- hour care. “The workers were great,” says Joe-Ann, “but he just made no progress. So we started looking for a home, and we found MODC.”
Ken moved into an MODC-supported apartment in Sudbury, ON, and made excellent progress. “He went from a feeding tube to eating whatever he wants,” Joe-Ann remembers. “They worked on his swallowing, his speech, his physio. Everything.”
From there, Ken moved into
Wade Hampton House, a supportive housing location run by March of Dimes Canada’s Non-Profit Housing Corporation. Ken has his own room at Wade Hampton, and 11 other brain injury survivors to socialize with. He can go outside for some fresh air, in the nice weather, and he’s at the local Y for pool therapy twice a week.
COVID-19 has changed that, of course. Ken can’t get out like he usually does, and he’s finding that difficult.
“He likes meeting new people,” says Joe-Ann. “He can’t do that right now. There are no outings. He usually comes home every other weekend, and he can’t do that either. We can’t even take him to our camp. He misses all that.”
Ken was planning to celebrate his 40th birthday with an MODC-organized Alaskan cruise. That’s also been put on hold.
“Just postponed,” his mom assures him. “We’ll rebook when it’s safe to go.”
Meanwhile, Ken is keeping himself busy playing games on his iPad and watching the Discovery channel. But being cooped up is getting to everybody.
“Moods are different, now,” Ken explains. “When one person’s having a bad day, it affects us all.”
“It’s harder to communicate now,” Joe-Ann adds. “It’s hard on both of us.”
But Ken and Joe-Ann are both glad they found Wade Hampton House. “He has some quality of life, now. I don’t have to worry about him”
Pat Bell
Pat describes his stroke experience in stark terms. After the first one, in 1996, he was told he’d never work again. But he did. After the second, he says: “Everything was gone. I was paralyzed, and I had no speech.” He spent 11 days in a coma, and another four in hospital, before being released. A day later, he fell into another coma, which led to further hospitalization. From there, he went to outpatient rehabilitation. Pat had just turned 52.
He’s come a long way since then. Thanks to family, friends, and his own determination, Pat has regained his speech and walks independently.
“It was hard, but I’m pretty stubborn,” he chuckles. “There was too much no, you you can’t do that from the doctors and the physiotherapists. I didn’t say anything, but I thought watch me.”
Pat is also driving again, which he loves to do. “I’ve loved cars since I was four years old,” he says. “There's something about the rumble of an engine.”
It took him a year to get his licence back, but he did it. Five years later, he completely restored his ‘83 Malibu wagon.
“There was a lot of thinking how did I do that before, and my right hand didn’t work like it used to. But I kept going.
The Stroke Recovery Association of British Columbia (SRABC) - affiliated with March of Dimes Canada – has been an important part of Pat’s journey. He usually spends Tuesdays with the aphasia conversation group and Wednesdays with the stroke recovery group, both of which he helps to organize.
“They’re great,” he says. “I like everyone who attends, and it gives me a purpose.”
Since COVID-19, of course, that’s changed. It’s no longer possible to hold our aphasia and stroke recovery group sessions in person – they've been modified to be online so Pat, and others, can continue to benefit from their skills development and the connection with others we all need right now. Pat is attending our online groups, and he still enjoys the cognitive activities, exercise and conversation, but it’s not the same.
“Online is very, very good but I miss reaching people in person. I can’t wait for this thing to be over. It’s kind of like the stroke all over again,” he adds. “One day things are normal, the next they aren’t.”
Pat’s also a big supporter of the annual Walk’n’Roll fundraiser, which raises money for March of Dimes Canada’s stroke and aphasia programs. This year’s Walk’n’Roll - which just kicked off June 1 - is online this year.
For Pat, Stroke Recovery Awareness Month is a chance to celebrate the resilience of stroke survivors. “I helped myself,” he says. “It took a long time, but eventually I got there.”
