what it feels like: 'i'm happy to stand up and shout' about als
7 minute read
dave dodds, left, has discussed his als diagnosis with his wife tracey, right, but has yet to have an in-depth conversation about it with his kids.
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when dave dodds woke up feeling pain and weakness in his arms and shoulders one day last fall, he assumed it was the result of a weekend marathon session screen-printing 1,000 shirts at his brantford, on., apparel printing shop, fat dave’s. but he had also been struggling to put his jeep’s roof on and off over the summer, which was unusual. “i just wrote it off to getting old,” says the 49-year-old.
when the pain persisted and the weakness worsened, he saw his family doctor, who diagnosed a possible torn rotator cuff. after a few months of physiotherapy showed no improvement, his physiotherapist ran some reflex tests. “he thought it was neurological, and sent a report back to my gp. from there, everything went into overdrive,” says dodds of the wave of appointments that quickly followed.
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.
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als society of canada (als canada)
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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 says he began his education by searching for information online, which returned some pretty bleak results. “until you find out the right words to search for, you punch in als on google and you get to a very dark place in a hurry,” he says, emphasizing the importance of referencing reliable sources.
dodds has discussed his illness with his wife but has yet to have an in-depth conversation about it with his kids. “my son and i have [talked a bit more] because we work together, and i think he knows more than he’s letting on. my kids are mentally strong, and the way we’ve been open in discussing everything has been good for them. instead of hiding away in a corner, we talk about stuff.”
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getting treatment for als
since his diagnosis a year ago, dodds has had only a few appointments with an als specialist, so he hasn’t spent too much time navigating the health system. but he recognizes that als clinics are stretched for their resources, which oftentimes leaves people like him, in the early stages of the disease, lower on the priority list.
“somebody who’s still quite able doesn’t need the same attention as somebody who has developed one of the more rapid moving strains,” he says. “so they end up taking more of the resources. i don’t begrudge that to anybody, other than the people who make the decisions about how much resource goes into the clinic. it’s the one thing about the system that frustrates me, you don’t have the same access.”
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.”
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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.
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.
“it’s good for not just me to make those [support group] connections but for tracey as well, so she has somebody to speak to who gets what’s going on. depending on how this goes, she may have to be [my caregiver],” he says. “our life is going to drastically change when i can’t drive anymore. tracey is concerned about what that’s going to do to my head but i’ll figure out a way to get through it.”
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dodds is fully aware he’s in a different place than a lot of people who get not just an als diagnosis but any terminal diagnosis. “i’ve been very lucky. we have an awesome community. i’ve said to people, ‘i hope you never have to know how good it feels when the world shows up at your back.’ and that’s what we’ve had.
“one of the reasons i’m so open about it is that a lot of people don’t have the same community or don’t react with the same mental fortitude. so if i can be that loud mouth, i’m happy to stand up and shout about it. it is good for me to talk about it but at the same time i think it’s just as important to do what i can to raise awareness for those people who don’t have the luck to be in the same place i’m in.”
robin roberts is a vancouver-based writer.
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