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Local Brantford man shares his experience with ALS

Community ProfileLocal Brantford man shares his experience with ALS

When 48-year-old Dave Dodds, the Owner of Fat Dave’s in Brantford, finished screen-printing 1000 shirts in one weekend with his team in September 2022, he began noticing weakness and pain within his shoulders.

A screening with his general practitioner led his doctor to believe that it was Dodds rotator cuff that was causing him issues and sent him to a physiotherapist.

“I ended up going to physio for it and the young lady said three weeks in a row that it was weird that I could move my arm, had a full range of motion and had no pain,” he said. “She pointed out that it didn’t seem to be my rotator cuff based on that and that’s when she brought in another senior physiotherapist. He prodded and did a bunch of different things as well and they told me that they thought it was neurological and I was sent back to my doctor.”

Within five days, Dodds’ doctor had him in for an MRI and the two discussed that it could be a bigger issue and he was sent to a specialist at McMaster.

By mid-March 2023, Dodds was officially diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, a diagnosis he eventually saw coming.

“There’s no test that says, ‘hey, you’ve got ALS,’ so there’s a number of tests to knock other things off and when you’ve knocked everything else off its like ‘okay, this is what we’re left with,’” said Dodds. “I had kind of figured out what the testing was leading to, especially when one of my last tests was the CT scan and my doctor called me to say the CT scan showed I didn’t have Cancer either.”

Dave Dodds, his family and his team members get their photo taken during the Walk to End ALS in Hamilton on Saturday, June 10, 2023. Photo courtesy Dave Dodds.

The news has been life changing for himself and his family, but Dodds is thankful that it’s currently only affecting his shoulders. His doctors think he may have a regional variant that could isolate the disease in the area for years.

“It’s been obviously completely life altering but I’m lucky that it’s just holding right now in my shoulders,” he said. “There’s a rare version of ALS called brachial amyotrophic diplegia and if it’s going to be that – this is how it shows up – they’re going to wait a while before they can tell whether it’s this, but there’s a chance that that’s what mine is. It could sit on my shoulders and do nothing else for a decade or it could even change its mind tomorrow and come to my heart. Right now it’s not doing that, so it’s good. I figure I have two options, I could sit in the corner and cry, or I can live life and right now I’m going for option B.”

Dodds knows how much the news of his disease can affect his loved ones and tries to keep spirits high for himself and others as they all navigate this new reality. He notes that it’s easy to fall down the rabbit hole of the internet and encourages others around him to avoid it.

“Tracey, the kids and I, we really try to laugh as much as possible because we know the end result of this disease. All of our friends and the community have been unbelievably awesome and all of that helps to keep me in a good mental place,” he said. “When you get a terminal diagnosis like that, there’s a gap between the diagnosis and getting to speak to people and with the way the internet is now, you can end up in a very dark place in a hurry if you go looking for something. If you Google ALS and you see that everybody’s gone within five years, you can end up in a bad place in a hurry and for the people who don’t have a strong community behind them, it can be devastating.”

A few days after his diagnosis, Dodds began posting weekly videos on YouTube to give health updates to loved ones and friends, something he hopes to continue to do monthly now that things have physically slowed down.

Dodds said the videos are a way to keep an accurate record of his disease progressing physically while also giving him a chance to speak about it for himself and keep his mind straight.

“Not everyone with ALS or other terminal illnesses ends up in this mental place so if I can talk about it, raise awareness and help educate people about it, then hopefully the sooner we get the cure through research and funding,” he said. “Until then, if the videos can help somebody else that’s dealing with some sort of diagnosis then it’s all the better. They give doctors a look at how things progressed and it also gives me an outlet to talk about it and keep my head straight. Another thing that I think is great about the videos is that because we do have such a large group of friends and community, if people know what’s going on with me through those videos, then Tracey and the kids get to have normal conversations. That way not everybody comes up and is like ‘hey, how’s Dave?’ or ‘how’s your old man?’ they can run into people and just talk about the Jays or the weather, or whatever normal conversation they want instead of the only thing they ever speak about.”

More than 200,000 people around the world are living with ALS with an estimated 3,000 of those people coming from Canada. ALS Canada notes that four out of five people diagnosed with ALS will die within five years.

While the health system provides some coverage for ALS, the disease can cost families between $150,000 to $250,000 out-of-pocket.

“It can cost between 150 to 250 grand, and that’s through all sorts of things from loss of work to treatments to having to put ramps on your house or buying cars that you can put a wheelchair in, as well as other costs too,” said Dodds.

The shop owner recently started a fundraiser selling shirts through Fat Dave to help raise money for him and his family as they work to manage his care currently and in the coming years.

“One of the very difficult things for me, has been doing something for me,” said Dodds. “The food bank has been my thing and it’s always been ‘hey if something or some organization is in need, then let’s do something for it.’ Now that it’s me in need, that’s probably been the most difficult because the disease doesn’t quite bug me – its saying ‘hey we need help’ or ‘I need help’ – that’s been the most difficult part for me.”

Dodds team poses for a photo around his orange jeep after the Walk to End ALS in Hamilton on Saturday, June 10, 2023. Photo courtesy Dave Dodds.

Dodds also recently helped fundraise and walked alongside a team of over 90 people in ALS Canada’s largest fundraiser, the Walk to End ALS in Hamilton on June 10, 2023.

His team raised just shy of $9000 that will go towards ALS Canada, as well as close to another $2000 raised from his friend’s son via a Twitch streaming fundraiser.

Forty per cent of the proceeds going to ALS Canada will go towards funding ongoing research and programs, while 60 per cent of the money goes to supporting people with the disease for medical beds, lifts and more.

Dodds says that while research and patient support money is necessary and important, seeing close to 100 people showing up in his purple shirts to support others living with ALS, was fantastic to see.

“The fundraising is excellent but for a lot of people that took part of the walk, they are often impacted by the disease in different ways,” said Dodds. “One of the things I always push for is to have people come out and show them that the world has their back and are giving their support. The financial aspect is wonderful and if you can donate and you want to – awesome. But I think it’s so important to have the people come out for awareness, and for all those people that may not have the same community as I do, we should show them we are behind them.”

Dodds encourages people to help where they can both within the community and out, and even recommended helping Monigram Coffee Roasters in Cambridge during their fundraising efforts for ALS.

“He (Graham Braun) is fighting ALS and they have a fundraiser that they’re doing for the month,” said Dodds. “Not only is it for a good cause, but they have great small-batch coffee too so if anyone heads out that way, be sure to stop by and support them.”

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