June 28, 2021
A stroke impacts not only the person who experienced the stroke, but also those around them. That’s why – for the remainder of Stroke Awareness Month – we will be using this space to share the stories of stroke survivors and those who care for them.
Please take a look through the profiles below to learn about how stroke changes lives, how people are making a difference and what
March of Dimes Canada’s After Stroke program does to help survivors and their families move forward after a stroke.
Profiles will be added regularly until the end of June. Check back often to find new stories!
Meet Christy Nich – stroke survivor
“I want to help develop a Canada-wide system of supports for persons with stroke,” says Christy Nich.
Christy had a stroke in 2012. She remembers everything, but as if she was in a dream.
“I woke up in the morning and couldn’t talk or move my entire right side,” she recalls. When her husband saw she was struggling, he called the paramedics and Christy was taken to Calgary’s Foothills Medical Centre.
Christy had no known risk factors for stroke. She was young − only 48 years old and healthy, other than a recent bout with pneumonia. Her stroke occurred because of a tear in the lining of her carotid artery, one of the main blood vessels carrying blood to her brain.
After three weeks in hospital to stabilize her condition followed by inpatient rehabilitation, Christy was discharged and returned home. She reached out to a local stroke recovery group but found it difficult to relate to other group members as she was much younger. Six months later she joined the Young Stroke Survivors of Calgary and began pursuing advocacy work through Heart & Stroke, with a focus on women and young stroke survivors.
In 2020, March of Dimes Canada reached out to Christy to join a working group of other stroke survivors, caregivers, MODC team members and staff from University Health Network’s Open Lab.
The group is providing feedback in the development of a national survey focused on understanding the experience of Canadians affected by stroke. March of Dimes Canada is inviting persons with lived experience to codesign, collaborate and inform projects like this one to build a better tomorrow for everyone impacted by stroke.
“I was honoured to be approached to be a part of this important work,” says Christy. “It means so much to me to be able to help other stroke survivors get the supports they need to improve their lives as they adapt to their new normal.”
Meet Hass Mawji – stroke survivor
“When you’re online you meet people from across Canada,” says stroke survivor Hass Mawji. “I’ve met so many people and learned so much.”
With the COVID-19 pandemic, Hass has been doing a lot of learning online these days. Strangely enough, it was during a video call in 2015 that he first knew something was wrong. The person he was taking to noticed he was “speaking a bit funny.” Hass looked at himself on screen and saw that his face was drooping on one side.
He hung up the phone, stood up and immediately fell back down. He realized that he needed to act fast. He slid down the wall and crawled towards the door. Hass grabbed for the door handle once, then twice, and finally opened it. He shouted out and his family called an ambulance.
Hass was diagnosed with a hemorrhagic stroke that affected the entire right side of his body. He was in hospital for six weeks followed by outpatient therapy for three months, and several years of practicing specific skills like walking.
The year after his stroke, Hass began volunteering in the stroke ward at MacKenzie Health in York Region, Ontario. He would visit patients, share his story and encourage them. He also joined March of Dimes Canada’s After Stroke program as a peer support volunteer with a monthly After Stroke support group.
Hass loves to connect with others – so when the pandemic hit, his friends joked, “What are you going to do now?” “Don’t worry,” Hass said. “I will find a way.”
And he did. He has found many opportunities to build connections and give and receive stroke support online.
He regularly joins the After Stroke conversation and virtual Aphasia Peer Connect groups over Zoom − tunes into a learning webinar on a topic that interests him – or works on improving his computer skills through virtual classes, something he has been interested in doing since his stroke.
Hass continues to seek out new learning opportunities online and ways to connect with other people. The experience has been so positive that he hopes “virtual programs are here to stay, even when we can meet in person again.”
Meet
Frank Giammarino – volunteer
If there is something Frank likes more than his morning espresso, it is helping people. As a retiree he has plenty of time for himself and others, and his typical week is always busy.
Frank starts each day with prayers, meditation and exercise. Occasionally, he tends to his stamp and coin collection. And three times a week, he volunteers with stroke survivors.
“I want to help them cope with the disability. I had a stroke in 2005, and when I left the hospital, I didn’t receive information on the kind of support available to help me during recovery,” said Frank. “I want them to know it’s going to get better, and it’s important to accept their disability and move forward.”
At the time of his stroke, Frank didn’t know about March of Dimes Canada. Later in his recovery, a friend told him about the Next Steps Walking Program and he joined. Then six years ago, he became a March of Dimes Canada volunteer with the organization’s After Stroke program. Since then, he has provided emotional support through hospital visits with people who have recently had a stroke.
During an average week, Frank would talk to 10 patients, but the pandemic has changed the way he volunteers. Now he is provided with the name of a stroke survivor, and over a span of three months, they chat every two weeks over the phone.
When Frank first talks to a stroke survivor, he shares his story. He wants them to know he understands what they are going through, and to realize there is hope. He tells them it is a process that takes time and requires a lot of effort, while at the same time reassuring them that things will get better.
Knowing he has made someone happy and seeing their improvement is perhaps the best part of his role. “Recently, I talked to a stroke survivor and after our conversation, he sent me a text that said, ‘You don’t know how happy I am every time I talk to you.’ That is the reward of being a volunteer.”
Meet Anita Lam – caregiver
In December of 2014, Anita Lam's husband, Thomas, fell three times. That's when she took him to a neurologist. Imaging revealed that he'd probably had several transient ischemic attacks, or TIAs, which are small strokes.
After that, Anita became Thomas' full-time caregiver. "I have to be there all the time," she says. "Even when he goes to the bathroom. It's a lot of pressure." Fortunately, they found the Strathcona Stroke Recovery Group (run by After Stroke British Columbia, an affiliate of March of Dimes Canada).
"Thomas was very mobile before. Now he tires easily and gets frequent headaches. He shuffles when he walks, and has trouble supporting his upper body, which makes him unsteady. He occasionally chokes on food and liquid, his movement is limited, and he needs a wheelchair when we go out. He tries to walk at home, which is good, but there’s always the risk he’ll fall.”
That’s Anita’s greatest fear and biggest challenge. It means she can’t ever leave Thomas alone. She squeezes chores and errands into the 45 minutes he spends napping each day, or when personal support workers come to wash him and do his exercises. The only other time she gets to herself is after Thomas goes to bed at around 11 p.m. By then, she’s exhausted.
That’s why the Strathcona Stroke Recovery Group has been so crucial.
“We felt welcomed from our first meeting,” Anita recalls. “Most of the members are from Hong Kong, too, and they speak Cantonese so it was easy to connect.”
Anita describes everyone at the meetings – survivors, caregivers, volunteers, and coordinators – as caring and concerned. She and Thomas both get a lot out of attending.
“He’s happier because he doesn’t feel alone anymore,” she says. “And I have other caregivers and people to talk to. I get to release some of my anxiety.”
The group is also a practical resource. A nutritionist and a doctor of traditional Chinese medicine were recent guest speakers, and Thomas is more willing to do his exercises there than he is at home, which gives Anita some comfort.
Anita counts herself lucky to have the stroke recovery group and personal support workers’ help. But she still struggles.
Anita encourages other caregivers not to give up, to seek help, and to remember they aren’t alone. There are supports available.
“Being a caregiver is hard, particularly when it’s someone with mobility issues,” she says. “Health officials need to hear that and provide more help.
Meet Angie – stroke survivor
Angie Montagnese is in a good place now. “I’ve always been a go-getter and strong person,” says Angie. “I’ve made a bad experience into a great experience. I love my life and couldn’t ask for anything more.”
Five years ago when she was 43, Angie had a warning stroke. She was dizzy, lost her vision and passed out. When she came to, she was able to call out to her son and he dialed 911.
When she got to the hospital, her vision came back, she was treated for vertigo and sent home. But Angie knew something was still wrong.
Two weeks later she had a stroke.
This time, her arm fell to her side numb and she had neck pain. She called 911. Angie told the paramedics and doctors she thought she was having a stroke. When she was seen by doctors, they thought that it must be something else because she was a woman, and so young. They treated her for a herniated disc and sent her home.
Angie pushed for an MRI. Four weeks later, the MRI confirmed that she had in fact had two strokes.
No one can say why Angie had her strokes. Research shows that someone can have a stroke at any age. Of more than 62,000 strokes that occur in Canada each year, over 30,200 of these happen to women.1
As part of her treatment, Angie attended neurological rehabilitation. It was there that her occupational therapist told her about March of Dimes Canada’s After Stroke program and Peel Stroke Support Group.
After attending, Angie started posting flyers, planning events – anything she could do to support the group’s chairperson. Two years ago, she took on the role of chair herself.
The group means everything to her.
“That is what has helped me get to where I am today,” said Angie. “Being involved doesn’t just benefit others but me, too. The group has become like my family. We listen to each other’s stories and learn from each other’s experiences.”
One of the turning points in her own journey was accepting that she wouldn’t be the same as before the stroke. It took two years for her to accept it.
“When I finally accepted it, it was a game changer for me,” says Angie. “I felt it was a struggle and then I felt that I had finally accepted it and wanted to tell the world.”
Angie continues to experience day-to-day challenges, both memory-related and physical, like continued numbness in her left arm. But she finds ways to manage, like using notes to help her remember things. Today, she is a passionate advocate for others, always willing to share her story and spread stroke awareness.
“Never give up, try your best,” Angie tells other stroke survivors. “You survived a stroke, that’s huge – we should all be proud to be survivors. You need to try every day to get better. Be positive, don’t stop, because life hasn’t stopped. There is life after stroke.”
Meet Pino – husband and caregiver
Pino is Angie’s husband and part-time caregiver. “As a caregiver, you never know what to expect and not to expect,” said Pino. “She is independent. You have to know when to break the line and when not to. We work together as a team.”
Pino’s work takes up a lot of hours during the day – but he is home in the evening, when he can help Angie as well as catch up on chores.
“We are lucky that she doesn’t have much physical impairment. She can dress herself, cook, clean and feed herself. It makes our job a lot easier.”
Among their biggest challenges were household finances, when they realized that Angie couldn’t return to her job. “We had to budget differently, live within our means and make decisions as a family.”
Pino is proud of Angie’s role as chair of the Peel Stroke Support Group and her work as an advocate. He credits her volunteer role in the stroke support group as helping them both.
“Angie’s volunteer role with the After Stroke program has kept us motivated. People share stories, best practices and we interact with others who are having the same experiences. You can relate to those people.”
He feels for others dealing with what comes after a stroke, but says not to lose hope.
“It is a life-altering experience, more for some than others,” said Pino. There are organizations out there that can help. March of Dimes Canada is one of them. The most important thing is to be persistent and don’t give up.”
March of Dimes Canada’s After Stroke program is a personalized recovery program that helps survivors and their families move forward after a stroke. The program is flexible and able to adapt to meet the changing needs and goals of stroke survivors of any age and stage of recovery. Find support for you or someone you care about: Call our After Stroke Warmline at 1-888-540-6666. (Open Monday to Friday from 9 a.m. to 4:30 p.m. daily). Or email us at
afterstroke@marchofdimes.ca
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