als is devastating, but early diagnosis and caring support help
despite the challenges of living with als, the cels family is positive, upbeat and emphasize the importance of seizing the day.
dec 17 2021
5 minute read
if mike cels' experience with als has taught him and his family anything, it’s the importance of embracing support from others. supplied
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this story was created by content works, postmedia’s commercial content division, on behalf of a client.
since being diagnosed with amyotrophic lateral sclerosis (als) in 2017, for mike cels, age 58 – husband, father of two, son and friend – life has changed drastically, but his clever sense of humour continues to shine through in every interaction that he has. if his experience has taught him and his family anything, it’s the importance of embracing support from others and taking advantage of every day together.
also known as lou gehrig’s disease, als is a rare and progressive neurological disease that attacks the nerve cells – or motor neurons – that are responsible for controlling voluntary muscle movement. as voluntary muscles produce movements such as chewing, walking, and talking, als leads to progressive weakness and reduces everyday physical abilities.
“i’ve heard the disease described in many ways, from it being like living in a glass coffin to being in a coma but fully aware of everything around you. the best single word i can think of to describe what als feels like to me would be ‘frustrating,’” says mike, whose als has progressed to the point where he can no longer speak, and who now communicates using eye gaze technology, a device that allows mike to control a computer by looking at words or commands on the screen which transcribes what he wants to say. “i find that what i feel more than anything on a daily basis is frustration at not being able to do even the most basic tasks.”
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als advances from muscle weakness or stiffness in the early stages, to patients losing their strength and the ability to speak, eat, move, and eventually breathe. slowly, the fatal condition impedes individuals’ ability to live an independent life.
there’s currently no treatment available that is capable of reversing damage to motor neurons or curing als, but there are options that can help to slow the progression of symptoms and better sustain the quality of life for those living with the disease. as such, early diagnosis is key to ensuring that people living with als, and their families, have as much time as possible, and increases the likelihood of qualifying for reimbursement criteria for approved therapies.
for many, the journey to diagnosis can be long and uncertain. for mike, it started with muscle twitching and weakness, which he specifically became aware of in september 2016 while running what would be his last 10-km race. after a lot of convincing, mike went to see his doctor, who ordered an electromyography (emg) test in march 2017, but the test itself only happened in early august 2017. from there, it led to more tests. “there isn’t a definitive diagnostic test for als,” says mike. “they just rule out everything else. for me, this led to lots of blood work, another emg, and mris. i was officially diagnosed in late october 2017.”
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carmen cels, mike’s wife of 25 years and caregiver, has been by his side every step of the way. the cels feel fortunate that mike’s doctor took his symptoms seriously and sent him for the appropriate tests, resulting in a diagnosis that took only a matter of months. “a lot of people go much longer before getting a diagnosis,” says carmen. “it’s so important to get that early diagnosis so you can look at how to treat or manage the als early, and so you can plan for what’s likely to come.”
“maintaining his independence has been one of mike’s biggest challenges,” says carmen. with early diagnosis and treatment, people living with als can slow the disease’s progression which allows them to maintain their independence for longer – and that’s worth fighting for.
mike agrees, noting that learning to accept help from others has been one of his biggest challenges. in a world that often prizes independence and self-sufficiency, it can be difficult to face the reality of the disease and the need to lean on others for support.
a supportive team of caregivers is vital for those living with als. it often starts close to home. “the resources and support we’ve leaned on over the years started with family for me,” says mike. “carmen first and foremost has been with me and supported me for every step on this journey. and our two adult children, cynthia and jonathan are also integral to my care and emotional wellbeing.”
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“it has been a definite change to become mike’s caregiver, but i don’t think there’s anyone else who’s better equipped to help meet his specific needs and to understand him,” says carmen.
mike says having carmen as his caregiver is fantastic, but knows she can’t do it on her own. mike also has an amazing team that supports him, from extended family and friends to personal support workers, physiotherapists, occupational therapists, patient support groups, neurologists, nutritionists, speech language pathologists, respirologists, and an adaptive technology team. among the extended care team, carmen is the driver that keeps the bus rolling along smoothly.
“there’s more than just the physical caregiving,” carmen says. “it’s planning and organizing and coordinating to keep everything running smoothly – appointments, supplies, and just having all that we need. i’m always kind of on duty.”
despite the challenges of living with als, the cels are positive and upbeat. they smile and joke around while sharing their story, and emphasize the importance of seizing the day and embracing life. thanks to mike’s early diagnosis and treatment, he and carmen have been able to travel extensively to see and experience the world, while they can.
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“we were fortunate enough to get to over 30 countries before the pandemic stopped it all,” says mike. “we made a good dent in the bucket list, and there’s still so much to see and do.”
als is a disease that offers no simple answers, and every experience can be different – one person survives years, and another can be gone in months. it’s a relentless journey, but with prompt diagnosis and treatment, people living with als can enjoy more independence and quality time doing the things they love most.
for more information and resources, visit alspathways.ca .
this story was created by content works , healthing.ca’s commercial content division, on behalf of a canadian research-based pharmaceutical company.
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