what it feels like: 'i'm happy to stand up and shout' about als

by january of this year, he saw a neurologist, who scheduled an mri. he then met with a specialist at the neurological diagnosis centre at st. joseph’s healthcare in hamilton, who ran a series of blood tests, scans and an electromyography (emg) test to measure muscle response. in mid-march, he got the diagnosis: he had amyotrophic lateral sclerosis, or als, a motor neuron disease that, according to the als society of canada , causes progressive paralysis when the brain no longer tells the body’s muscles to move. as the muscles deteriorate, those living with als will lose the ability to walk, talk, eat, swallow and, eventually, breathe.

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

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.”

getting treatment for als

adjusting to life with als

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.

he is also active in a few support groups, including the als society of canada, and is eager to help raise awareness and funds. he participates in the society’s annual walk to end als each june, and even donated his shop’s time and resources to print free t-shirts for participants.

he’s also involved with the non-profit als action canada , which he says is similar to the als society but smaller and patient-led. members either have a caregiver or are a caregiver, and everyone shares news about the disease, new drugs, and how to navigate the system. the group also hosts experts who bring their insights and advice to the members. recently, a specialist from sunnybrook spoke about mechanical wheelchairs, how they work and how to qualify for one. another week welcomed a death doula who talked about mental health challenges and how to plan and prepare for end of life.