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home / 世界杯决赛2022

learning to accept a devastating diagnosis, and trying to cope with inadequate health-care supports

als, says anne-marie marcil, is an expensive disease, partly because a person’s needs change rapidly.

by elizabeth payne
published jun 05, 2022
last updated jun 06, 2022
read time 4 minute read
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read time 4 minute read
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als patient anne-marie marcil, 47, and part of her 100-strong team saturday. jean levac / postmedia
anne-marie marcil is learning to take life one day at a time. she has no other option. the single mother from orléans was diagnosed with als (amyotrophic lateral sclerosis) just over a year ago, in april 2021. just 46 years old at the time, with two young daughters, the diagnosis was world-shaking for marcil, her extended family and friends.
“it was a very hard pill to swallow, just devastating, honestly. my first thoughts were my children and it is still about them,” she said saturday.
“and then you have to accept it.”
marcil, who worked in the federal government planning ministerial events before becoming ill, says she has accepted that she has to take life day to day and stay positive “for me and my children.”
that positivity was reflected in a sea of faces saturday at als canada’s walk to end als at the canadian war museum, the first time the walk has been held in person since the pandemic struck.
more than 100 family and friends wore t-shirts saying “the a team — her fight. my fight” in support of marcil.
with the help of her daughters aged seven and nine, she cut the ribbon at the start of the walk. her group of friends and family alone was expected to raise $50,000, a significant part of an overall goal by als canada to raise $1.9 million in ontario during als awareness month in june. the walk to end als in ottawa was expected to raise $275,000.
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that money is badly needed by patients like marcil. sixty per cent of money raised by als canada goes toward helping support patients with equipment, technology and other needs. forty per cent goes toward research for potential treatments and cures.
als, says marcil, is an expensive disease, partly because a person’s needs change rapidly.
last summer, she bought an accessible van, then she moved and renovated a bungalow that was more accessible than her previous home. she has recently begun using a powered wheelchair to get around and, as of this week, she needs a lift to get in and out of her wheelchair.
“we have the means to do that,” she said of the van and the renovations, “but not everybody does.”
als canada supplied the wheelchair and lift.
but marcil said the support provided by the provincial government for patients like her is inadequate.
marcil can no longer use her legs, can no longer be on her own. she has a great deal of support from family and friends who come in to support her based on a scheduled rotation. meanwhile, her ex-husband is moving back in to be there for her.
“we have had the realization that i can’t be home alone.”
but marcil says she also needed more help from personal support workers and she was told she was at the maximum with 15 hours a week. that was far from enough and wouldn’t even allow her to go to the bathroom or get in and out of her wheelchair, she said, because it takes two to operate a lift.
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after working the phones, marcil said she was accepted to a separate program, which should give her 30 to 40 hours a week of psw care. without that, her only option would be to hire private caregivers at $35 an hour.
“imagine when you need 24-hour care? who could afford that?”
she said she managed to get more help because she was persistent — “the squeaky wheel gets the grease” — but worries about how others with the disease who don’t have a large circle of willing and able family and friends to help.
“there is lack of support from the health system.”
tammy moore, president and ceo of als canada, agreed that psw support is “grossly inadequate” for als patients.
she said that is not the only area in which ontario’s health system lets als patients down.
als canada is paying for hospital beds, wheelchairs and ceiling lifts “so people can stay in their homes.” that expensive equipment is funded by donors, such as those who participated in this weekend’s walk to end als.
“that is donor dollars that is going to fund very basic necessities for someone with an als diagnosis.”
she said the province of quebec offers “significantly more” equipment and support to als patients.
in ontario, about one person a day, on average, is diagnosed with als, a rate that has not changed significantly. the average patient survives between two and five years after diagnosis. new technologies have helped people stay in their homes longer, but they are expensive, said moore.
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twenty years ago there was just one treatment therapy for als, but that is beginning to change. in the past three years, another treatment therapy was available with two more going to health canada for review, said moore. the treatments generally act to slow progression of the disease.
moore said als canada is pushing health canada to speed up the approval process for als treatments and to provide quicker access to all patients.
marcil, meanwhile, said it has been a big challenge for her learning to accept help, but she knows that is necessary.
as one of her young daughters offered the advice “never give up!”, marcil said it has taken a mental shift to learn to live one day at a time.
“i am there now. i know what is coming but i don’t need to think about that right now.”
for more information on als contact als canada at als.ca
elizabeth payne
elizabeth payne

elizabeth payne is an award winning health journalist whose stories became must-reads during the covid-19 pandemic and beyond.

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