Category: ALS Stories

My name is Mehboob, and I’d like to share my story with you. And I want to say thank you.

In late 2020, life took an unexpected turn when I was diagnosed with ALS. Once the provider of medical care as a family physician in the community of Stoney Creek, Ontario, I found myself in need of care and support.

ALS, as many of you might know, is a relentless adversary. The speed with which it operates can be overwhelming. But the journey I embarked on has become one not of despair but of hope and inspiration.

I have learned to accept this journey that I am on. This disease is a rare one, and while I still can, I will do everything in my power to raise awareness about what it is like for families like mine and what we are going through. Like the needs we have. The costly aspects of this disease – so much care and equipment are required, which is not cheap. The emotional toll it takes on our partners – like my incredible wife Sophie, who I love with all my heart.

Some of you may remember the ALS Canada Walk to End ALS event earlier this year. I had the honour of leading our team, “Marching for Hope.” Together, we raised close to $15,000 for ALS research, and I pledged to match a part of those funds personally. But the Walk was not just about funds; it was a statement – a statement that despite the odds, we would stay strong, we would press forward, and most importantly, we would hope.

Today, nearly six months later, I reflect upon our journey together. Despite the hurdles – the wheelchair, the physical setbacks, the emotional challenges – there’s been an incredible force of good around Sophie and me. And this force is a daily reminder that there is so much we can still do. Your support, your words of encouragement, and your unwavering belief have been the wind beneath our wings. Thank you for supporting ALS Canada. Thank you for supporting me.

I’ve always believed in the power of community. In my years as a physician, and now, more than ever, as a part of the ALS community, I’ve witnessed what collective compassion and commitment can achieve. Every day, my heart is warmed to know I am not alone – you and the rest of the community are right here with me. Thank you.

It’s not just about fundraising but about creating awareness, providing support, and, most importantly, showing that we’re in this together. Every message, every phone call, every tiny gesture has had a profound impact on me. And it’s these collective efforts that hold the promise of a brighter future for everyone affected by ALS.

So, as we journey forward, remember this: your involvement, commitment, and heart have made a difference. You’ve given me, and countless others, strength and hope.

From the bottom of my heart, thank you.

Warmly,

Mehboob

Diagnosed with ALS in 2020

P.S. Our mission is an ongoing one. While we’ve achieved much, there’s still a road ahead. If my journey resonates with you, and you feel the urge to support further, please consider donating here. Your contribution, no matter how small, changes our world.

Mark Vivarais was almost in tears as he walked back to his wife, Sandra, from a washroom at an outdoor outlet mall in Florida. He’d been stuck in there for half an hour, struggling to pull himself up from the low toilet seat.

“That’s when it hit me,” Sandra recalled. “Oh my god, this is starting.”

Three months before that trip, Mark was diagnosed with ALS. The shock of the diagnosis had rippled through his family of three children and five grandchildren. They knew he didn’t have much time before travel would become too difficult, so they all booked another trip.

On that trip, the hazy realities of his future started coming into sharper focus. It was clear that what used to be simple and instinctive movements – sitting down, getting up, walking – would no longer be possible without help.

“We knew at that point that toilets were a problem,” Sandra said. “That’s when we had to start looking at what we needed.”

Mark’s first piece of equipment was a wheelchair borrowed from the hospital. But he and Sandra quickly realized that he’d need a lot more as his ALS progressed. They also realized that almost every piece of equipment came with a high price tag, and there was no way they could afford it all.

But they didn’t have to.

Sandra reached out to ALS Canada for information and support, and received a home visit from Lianne Johnston, a local Regional Manager. Lianne told Sandra and Mark about the ALS Canada Equipment Program, which loans basic and essential equipment to people and families living with ALS for as long as they need it. Sandra calls it “the cupboard”.

Mark’s occupational therapist assessed his needs to submit equipment requests, and soon after, deliveries were arriving at his door – at no cost: a raised toilet seat with handles, a bench seat for the shower, a wheelchair-backed toilet seat, four different cushions, an electric lift, a chair lift, a hospital bed and mattress, and four different types of wheelchairs.

Altogether, Mark has had access to borrowing $45,000 worth of equipment, thanks to the ALS Canada Equipment Program which is wholly funded by donors.

The equipment has made a world of difference not only to Mark, but to Sandra and his personal support workers too. Mark can maintain as much independence, comfort and dignity as his body allows, while his caregivers are safer and have a much easier time lifting, moving and helping him. Even Mark’s five-year-old grandson, Keaton, has learned how to work every machine in the house. Although Keaton is still too young to understand what’s happening to his grandfather, he knows how to carefully position Mark’s legs, hands and mouthpiece.

“All Mark’s grandkids keep his spirits going,” Sandra said.

Mark is one of many Ontarians living with ALS who need a wide range of equipment to cope with the daily challenges of decreasing mobility and communication ability. It starts with a walker or a wheelchair, and depending on the speed of someone’s disease progression, can snowball into many more items that can cost thousands of dollars.

Without the ALS Canada Equipment Program, families’ like Mark’s would either carry a heavy financial burden, or they’d have to go without the equipment they need. That means they wouldn’t be able to move around; to bathe or use a toilet safely; to get on and off a bed; or even to hold their heads up.

“ALS Canada always had the next thing we needed,” Sandra said, adding that the organization has been quick to respond to their requests. Although their experience has been extremely positive, they’re well aware that people have to wait longer periods of time to access equipment if what they need isn’t readily available, a reality of a donor-funded program.

With this understanding and gratitude for support received, Sandra has become a highly motivated fundraiser and advocate. Every year, she passionately raises money through the Walk to End ALS in her hometown of Cornwall. She’s delighted that 60% net proceeds raised goes directly toward community-based support services for people living with ALS in Ontario.

“In years and years to come, I will be one of the pushers to make sure that the equipment program carries on,” Sandra said. “Fundraising for the program is one way, but we also need all levels of our government to step up. I’m going to fight for those who need this.”