pALS Dave Dodds: happy to stand up and shout about ALS

Dave Dodds knew little about ALS before he was diagnosed. “A few years ago we all dumped a bucket of ice on our heads for it.”

Only about 3,000 Canadians are afflicted by ALS, but it is terminal — roughly 80 per cent will die within two to five years of diagnosis, although some live decades longer. The exact cause is unknown, there is no cure, and treatments are few. Current drugs approved by Health Canada, and available for reimbursement under most provincial government health plans, include Rilutek (riluzole), which can increase survival by six to 19 months, as well as Radicava (edaravone) and Albrioza, both of which have been shown to slow the disease’s progression in some people in the early stages.

The most common form of the disease is called sporadic ALS, which affects anyone regardless of age, gender or ethnicity, although it is most common in those between 40 and 60. An inherited type, called familial ALS, is rare, making up about five to 10 per cent of cases. Even rarer is a form called brachial amyotrophic diplegia , which Dodds’ neurologist believes he could have (he’s awaiting results of further testing), causing atrophy in the upper extremities.

Coming to terms with ALS diagnosis

“Either I’m lucky or I’m oblivious and it still hasn’t hit me yet,” says Dodds of his diagnosis. “I’m still in fine spirits, which is good for me and my wife, Tracey, and kids, Will and Morgan. Morgan’s 22 and Will’s just about 19. For them, me being good with it mentally also helps them quite a lot. If I was down and dour, I think our house would be a different place.”

Dodds says he knew little about the disease before he was diagnosed. “A few years ago we all dumped a bucket of ice on our heads for it,” he says, referring to the Ice Bucket Challenge of 2014 , which raised awareness and $17 million in Canada. “I knew it was a terrible disease that was terminal. Now every day is a learning experience. It’s like having two full-time jobs now, where I’ve got the shop and I’ve got this disease that slows me down and I have to try to learn about at the same time.

He has been given prescriptions for a few medications, but he has yet to fill them. He’s in the process of applying to Ontario’s Trillium Drug Program, which helps cover high prescription costs.

“But I’m still on the fence as to whether I’m going to take drugs,” says Dodds, although he admits he may decide to take riluzole soon as his arms continue to weaken. “As part of different ALS forums and groups, I’m getting different information about side effects — people become really lethargic, feel terrible, et cetera. There’s a clock ticking for me. It’s great if a drug extends my life by six months, but if I’m going to feel terrible for those six months, what’s the point of taking the drug? I’ve accepted and am at peace with the fact I’m going to die. Everybody’s going to die, I just don’t see a good reason to extend my life by any period of time if it’s a poor quality of life to extend. I don’t mean that to sound harsh, but to me it’s just pragmatic. I’m loud and boisterous and out doing things, so to live when I’m not living as me doesn’t really make a lot of sense.”

Adjusting to life with ALS

Dodds says he’s much more conscious about his health now that he’s living with ALS. His business is called Fat Dave because he’s, well, a bit hefty. But he doesn’t plan to lose any weight, primarily because he says his doctor advised against it. “If I understand it correctly, this disease is calorie-hungry. So if I take away the excess fat it will start to affect muscle more quickly. [But] I think I need to eat a healthy higher-fat diet.”

Living with a rare form of the disease that is progressing more slowly than the more common type, Dodds is seeing only minor deterioration in his deltoids so far. While he’s still healthy and able, he wants to share his story to help others, which he does by speaking to media and via his own YouTube channel , which keeps followers up to date on his journey.

https://www.healthing.ca/diseases-and-conditions/amyotrophic-lateral-sclerosis/what-it-feels-like-im-happy-to-stand-up-and-shout-about-als