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Carol Skinner was diagnosed with ALS on Sept. 19, 2013, a day she’ll never forget.
I first met her in June 2015, when she had leg braces, caught up with her a year later when she used a walker, and saw her again Wednesday, when she explained the use of three different wheelchairs, lamented an inability to hold a plate or drive a car, revealed she can’t bend over to pick anything up.
So does amyotrophic lateral sclerosis steadily shrink your world. And she is one of the lucky ones.
“The hardest part is that you witness it,” she said of the effects of the terminal neuromuscular disease, which progressively weakens the use of major limbs.
“It’s like your last time driving. Your last time sitting on the couch. One of the hardest was not being able to pick up my cats, holding my friend’s baby.”
After diagnosis, she was told she might have two or three years to live, maybe five. Now she’s in year four and, all things considered, doing rather well, just as she’s seen friends and acquaintances die, and witnessed the demise of MP Mauril Belanger, who had less than a year between diagnosis and death.
Amazingly, her optimism is not impaired. “That’s why I kind of feel like I’ve been given a gift,” she said, sitting in a special chair in the ninth-floor apartment she shares with husband Travis and two cats. The gift is time.
The first year after diagnosis, says Skinner, 45, a former art therapist, there was shock. In year two, came the advocacy work. “It has given me that purpose, that meaning.”
Funny, says, Skinner, but it feels like more progress has been made with ALS in the last couple of years than in the previous 70, when baseball great Lou Gherig lent his name to the illness in 1941. For example:
Dr. Jodi Warman Chardon is a neurologist at The Ottawa Hospital and one of the centre’s leaders. “We’re going to be offering international, world-class trials in Ottawa,” she said Thursday, the kind not available anywhere in Canada.
“We’re going to be taking biopsies off patients. We’re going to be linking with the basic scientists to help find the cures of tomorrow.”
She said ALS has been so difficult to treat because it appears to be a “demonstration” of multiple different diseases. Genetic ALS, for instance, has some 30 sub-types and that only represents about 10 per cent of all ALS cases.
This may be an explanation as to why the disease kills some people so quickly yet allows others to live for 10 or more years.
Skinner, meanwhile, is the Lead Walker at the annual ALS walk on Saturday, a five-kilometre loop from the Canadian War Museum. She hopes to raise $3,000 on her own, adding to the $17,000 her teams have raised since 2014. (Donations can be made online at walkforals.ca).
She said living with a terminal disease has made her appreciate the moment, travel more, more deeply understand the sacrifices family are willing to make for her. (Her parents moved from Montreal to Ottawa this spring.)
“I have to think about the day-by-day. I can’t think about what’s coming. That’s just too much.”
She has had many dark days and doesn’t fight the tears. At low points, she says, she and Travis try to “change the scene” by having a glass of wine and putting on ’80s music. “That usually does it.”
The tough part, she says, is the visible slipping away, the knowledge of what’s coming.
“You can see yourself losing pieces, your abilities bit by bit and that’s just devastating. But I’m trying to make the most of it.”
To contact Kelly Egan, please call 613-726-5896 or email kegan@postmedia.com.
Twitter.com/kellyegancolumn
查看原文...
I first met her in June 2015, when she had leg braces, caught up with her a year later when she used a walker, and saw her again Wednesday, when she explained the use of three different wheelchairs, lamented an inability to hold a plate or drive a car, revealed she can’t bend over to pick anything up.
So does amyotrophic lateral sclerosis steadily shrink your world. And she is one of the lucky ones.
“The hardest part is that you witness it,” she said of the effects of the terminal neuromuscular disease, which progressively weakens the use of major limbs.
“It’s like your last time driving. Your last time sitting on the couch. One of the hardest was not being able to pick up my cats, holding my friend’s baby.”
After diagnosis, she was told she might have two or three years to live, maybe five. Now she’s in year four and, all things considered, doing rather well, just as she’s seen friends and acquaintances die, and witnessed the demise of MP Mauril Belanger, who had less than a year between diagnosis and death.
Amazingly, her optimism is not impaired. “That’s why I kind of feel like I’ve been given a gift,” she said, sitting in a special chair in the ninth-floor apartment she shares with husband Travis and two cats. The gift is time.
The first year after diagnosis, says Skinner, 45, a former art therapist, there was shock. In year two, came the advocacy work. “It has given me that purpose, that meaning.”
Funny, says, Skinner, but it feels like more progress has been made with ALS in the last couple of years than in the previous 70, when baseball great Lou Gherig lent his name to the illness in 1941. For example:
- In January 2016, the federal government extended the Compassionate Care Benefit, extending from six to 26 weeks the period during which caregivers can apply for benefits up to $13,624 to care for loved ones with ALS.
- In October 2016, the first meeting of the ALS caucus on Parliament Hill was held. A group of MPs and senators is now focusing its attention on how to improve care, research and funding into the incurable disease.
- In February, Skinner and senior ALS officials met with Health Minister Jane Philpott to advocate for ongoing research funding.
- In the U.S., the FDA has approved the use of edaravone (or Radicava), a drug that has shown promise with a small sample of ALS patients.
- Later in 2017, The Ottawa Hospital will open the Neuromuscular Clinical Research Centre at the Civic campus. It will have a major focus on ALS.
Dr. Jodi Warman Chardon is a neurologist at The Ottawa Hospital and one of the centre’s leaders. “We’re going to be offering international, world-class trials in Ottawa,” she said Thursday, the kind not available anywhere in Canada.
“We’re going to be taking biopsies off patients. We’re going to be linking with the basic scientists to help find the cures of tomorrow.”
She said ALS has been so difficult to treat because it appears to be a “demonstration” of multiple different diseases. Genetic ALS, for instance, has some 30 sub-types and that only represents about 10 per cent of all ALS cases.
This may be an explanation as to why the disease kills some people so quickly yet allows others to live for 10 or more years.
Skinner, meanwhile, is the Lead Walker at the annual ALS walk on Saturday, a five-kilometre loop from the Canadian War Museum. She hopes to raise $3,000 on her own, adding to the $17,000 her teams have raised since 2014. (Donations can be made online at walkforals.ca).
She said living with a terminal disease has made her appreciate the moment, travel more, more deeply understand the sacrifices family are willing to make for her. (Her parents moved from Montreal to Ottawa this spring.)
“I have to think about the day-by-day. I can’t think about what’s coming. That’s just too much.”
She has had many dark days and doesn’t fight the tears. At low points, she says, she and Travis try to “change the scene” by having a glass of wine and putting on ’80s music. “That usually does it.”
The tough part, she says, is the visible slipping away, the knowledge of what’s coming.
“You can see yourself losing pieces, your abilities bit by bit and that’s just devastating. But I’m trying to make the most of it.”
To contact Kelly Egan, please call 613-726-5896 or email kegan@postmedia.com.
Twitter.com/kellyegancolumn
查看原文...
