Today, June 21, the world observes the Global Day of recognition of ALS/MND.
In honour of that, I thought I would help raise awareness by sharing some facts with you that some of my friends and family have been surprised by.
Every year the International Alliance of ALS/MND Associations celebrates 21 June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe.
ALS/MND is a global problem. It does not discriminate on the basis of race, ethnicity, socioeconomic status or region. There are people living with ALS/MND all over the world. For every person diagnosed, the impact of the disease will be forever felt by their loved ones.
Alliance members across the world use the hashtag #ALSMNDWithoutBorders on 21 June to raise awareness and funds on Global Day.
Why 21 June?
June 21 is a solstice – a turning point – and each year the ALS/MND community undertake a range of activities to express their hope that this day will be another turning point in the search for cause, treatment and cure of ALS/MND.
Join the fight… Spread the word
Global Day is an event that knows no boundaries, so everybody can be involved. Any event (big or small), any activity, any act, can be a part of raising awareness of ALS/MND.
Ways to spread the word:
Use the hashtag #ALSMNDWithoutBorders to share information and education about ALS/MND on social media!
'My dad’s been my biggest hero my whole life'
The first time we met Carol Skinner in 2015, she was so relentlessly positive, so often smiling in the face of approaching death, the pair of us (writer, photographer) left the apartment holding back tears.
(Strange. Was she not the ailing one?) Three years later, she’s very much alive — surprise, surprise — and still fighting the good fight against ALS.
“I was living as though I was dying,” she said of the early months with the terminal illness. “I got my affairs in order. I gave away things like my high school yearbook and my wedding dress.”
Then got back to living. Last weekend, for instance, she returned to the annual ALS walk, where her teams have raised more than $26,000 during the past four years. Fortunately, Skinner has strong family support, as exemplified by her father, Peter, who has become “an assistant advocate.”
She says she’s not surprised. “My dad’s been my biggest hero my whole life. He’s always, always told me I could do anything, my whole life.”
The only daughter in a middle-class Montreal household, Carol remembers her father being absent for big parts of her childhood as he travelled the world as a pulp-and-paper executive.
“He always tested me on geography. He gave me my love of travel and other cultures. He would bring me dolls from all these foreign countries.”
Her father instilled a work ethic in the children, she said, which served her well in her career as an art therapist.
She knows how difficult the illness has been on her parents, who had moved to Ottawa, partly to help her with errands and ongoing care and support, not to mention multiple holidays.
“Dad is very sensitive guy on the inside. He comes across as a fun-loving, kind of sarcastic guy, but he’s a softie on the inside and I know it’s breaking his heart.”
ALS is a neuromuscular disease that attacks, in layman’s terms, the body’s central wiring system. Over time, the brain and its main muscles no longer communicate properly, making limbs hard to control. Eventually, speech, breathing and swallowing are affected.
Skinner can now only walk short distances with a walker, and otherwise relies on a wheelchair. She can’t load the dishwasher or lift her arms very high. She now has daily nursing care. But her breathing and swallowing are normal and her spirits, many days, are good.
So, she’s planning a trip to Tuscany later in the year, ALS be damned. Life goes on.
“You have to be grateful for what you have instead of regret what you don’t have, because then you’ll never be happy.”
To contact Kelly Egan, please call 613-726-5896 or email email@example.com
Egan: As ALS steals his daughter, a father helplessly watches on
ALS kills 80 per cent of sufferers within two to five years, a terrifying statistic for Carol Skinner, on the eve of her fifth anniversary.
Today she uses a walker inside her small apartment — a wheelchair everywhere else — and doesn’t drive or work anymore, or even cut her own food, or wash her own hair. On a good day, she can write her name. On a bad day, there are things she can hardly speak of: “I’m scared to death.”
Peter Sharman would trade places with her in a heartbeat. It is what a father would do for his child.
Since Carol’s diagnosis in September 2013, Sharman, with his engineering brain, has been making notes about what it’s like to be the parent of a child with a terminal illness. The short version runs to 19 pages, parts of which make for a heart-breaking read.
“I remain frustrated that it wasn’t me that was diagnosed,” he writes. “I’d give a lot to take this away from Carol and so often feel regret that it should have been me, because I’ve lived a relatively long, busy and fulfilling life already.”
We’re on the 21st floor of a west-end highrise, the windows giving way to a breathtaking view of the Ottawa River. It is beautiful outside, tidy and luxurious inside, where he stands relaxed in shorts and sock feet, a few sleeps before another Father’s Day.
Of course he would trade for his daughter’s suffering. It is what a parent does. To protect is to love.
We seldom focus on the parents’ agony in the face of terminal illness, a father’s helplessness. Dr. David Taylor, vice-president of research at ALS Canada, has seen it up close.
“It’s the pain,” he says, “and it’s a different, unimaginable pain. You see in their faces. They’re watching their child go through this and having to consider the notion of the child dying before they do.”
With a trace of an English accent, Sharman is retelling the story of how he and his wife, Louise, were told about Carol’s diagnosis. They were on a cruise on the Black Sea, just outside Istanbul, when a phone message arrived from Travis, Carol’s husband.
There was shock, of course, and tears, the kind a stiff drink doesn’t take away. What, even, was ALS?
They abandoned the second half of the cruise and flew home immediately, despite the couple’s urging to finish the trip.
“I tell you how you compare it: Somebody just died. There’s no difference. Because to me, she had died, in that instant.”
Life was about to change, in ways he never imagined. Partway through Carol’s illness, her brother, Don, died suddenly on the Caribbean island of Saint Martin. Peter and Louise had now lost their oldest child at age 52.
Newly into retirement, his back, meanwhile, gave him loads of trouble, resulting in surgery. He had to give up golf, which he played four times a week, and a beloved sports car, which he couldn’t bend into. Her world was shrinking — “It really tore me apart understanding that she’d never walk again” — and so was his.
They sold the family home in Montreal and moved to an apartment in Ottawa, in large part to support Carol and Travis. Every day, she is on his mind. How could he help but not continually intrude?
“My personality went from type A to type L (for “lost”) — and I don’t feel I’m me anymore. I know others see that and understand a little bit,” he wrote. “But pity is the last thing we need.”
He is a charmer, with these playful eyebrows. Born in England, he survived the Blitz in London during the Second World War and arrived in Canada as a teenager, landing in tiny Ocean Falls, B.C., a beautiful but isolated mill town of maybe 2,000 souls.
“I lost my accent in three weeks.” School wasn’t for him — “I’m the only guy from England who failed English” — but he had a salesman’s touch and a driving ambition. He was soon working in the mill, learning all aspects of the pulp and paper trade.
“I failed Grade 11 but I owned an engineering company. How do you do that?”
In 1961, he was off to Vancouver, where he met and married Louise. Three children followed, then a move to Montreal to start an office for a pulp and paper giant. It would become home. Carol was born seven years after the boys, the best mistake, as they say, the couple ever made.
“She’s still so cheeky,” he says. “Still the same. ALS, no ALS, she’s the same as she was at three years old.”
Her teenage years — when she babysat for Montreal Expos great Gary Carter — were a mystery to him.
“Between the ages of 13 and 19, my daughter left the human race. She’d have all these friends over from school, university, at the pool. I never understood a word they said.”
Travel was the family’s lifeblood. He estimates he’s visited 135 countries and once travelled 150,000 kilometres a year, away from home for weeks at a time. To this day, trips — cruises in particular — are a way they best bond with Carol, with wonderful backdrops such as Costa Rica, the Baltics or corners of Asia.
Since her diagnosis, he’s dived into the ALS community. There is no effective treatment for the illness, made famous by baseball great Lou Gehrig. And he’s quite shocked by the lack of government support for research.
Look at the millions spent on heart and stroke, or cancer, or diabetes, he says.
ALS, he says, gets zero direct dollars.
ALSO: Ottawa opens ALS centre amid ‘massive’ advance in basic research
There are some 3,500 Canadians living with ALS every year, a number he thinks is too small to spur big pharma to explore new medications.
“Is 3,500 lives a year not worth it? Not worth anything? When you can spend $605 million on the security of Charlevoix?” he asks of this month’s G7 meeting in Quebec.
Sharman accompanied his daughter to a recent meeting of the ALS caucus on Parliament Hill, a group of MPs formed in the wake of the death of Ottawa-Vanier MP Mauril Belanger of ALS. He brought the room to a standstill, his daughter says.
“I consider myself an assistant advocate to Carol.”
His mission now, and it is a big one, is to help create enough awareness of ALS that momentum builds for broader public understanding and more urgent scientific research.
“I guess that would be the best Father’s Day gift. Have a drug for her and let me go.”
Ottawa opens ALS centre amid 'massive' advance in basic research
The treatment of Amyotrophic Lateral Sclerosis has not advanced much since baseball great Lou Gehrig died of the disease in 1941, a story that transcended the Yankees and sport in general.
But hope is building, with more progress in the past 10 years than in the previous 60. Ottawa is onboard, with the opening in May of a neuromuscular research centre, based at the Civic campus at The Ottawa Hospital, where muscular dystrophy and ALS will get special attention.
Experts say the exact cause of ALS has been difficult to pinpoint while treatments have been elusive because of the complexity in how the brain interacts with motor neurons to make muscles work on command.
Dr. Ari Breiner is one of seven “clinician investigators” at the centre, which operates out of 5,000 square feet of space that should, in theory, have contact with all 150 or so ALS patient in the area.
“I think it’s very exciting. Ottawa has always had a strength in basic science research in neuromuscular diseases,” he said this week. Indeed, he points to an overall network of about 200 who are working in clinics or labs (university or hospitals) on neuromuscular diseases.
Egan: As ALS steals his daughter, a father helplessly watches on
Though just off the ground, he’s predicting the first clinical trials in Ottawa will begin later in 2018 — probably in collaboration with another centre, probably testing a new drug. (Partnerships are important here because the local patient pool is relatively small and many would not qualify for trials.)
So, why is ALS so tough to crack?
Dr. Breiner says scientists have a decent understanding of the “downstream” effects of ALS, such as a protein buildup on the motor nerves. But the “initiating event,” he says, the original “insult,” is the big question.
“Understanding the biology of the disease is the big thing,” though genetics and environmental factors are thought to be part of the puzzle.
Dr. David Taylor, vice-president of research at ALS Canada, says there have been massive advances in understanding the disease at the molecular level in the past 10 years.
“I am of the belief that we are on our way towards treatments,” hopefully within the next 10 to 20 years, he said this week, predicting there will be multiple therapies to at least slow down the disease.
An immediate roadblock? Funding. He agreed with Peter Sharman’s contention that there is little sustained, direct funding for ALS research from the federal government.
“It’s hard to have a roadmap when you’re working on fumes,” he said. “It’s hard to have a roadmap when you don’t have enough money to build the road.”
It only makes sense that cancer research, for instance, would get more funding, because one in three people have a cancer episode during their lifetime. “It is a case of the rich get richer, in a way, because diseases like cancer have such a large grassroots footprint.”
The ALS Ice Bucket Challenge was enormously successful in 2014, but the funds only went so far, given research is an ongoing, multimillion-dollar endeavour.
The difficulty with solving the ALS puzzle, he explained, is understanding the workings of the entire central nervous system, from the brain to the tips of the toes.
“The heart is a pump,” he said by way of example, “the brain is still being understood.”
The Ottawa centre is an important part of the solution, he said. Not only will it provide care from many disciplines (physio, speech therapy, social workers) but it should remove the need to travel to Montreal or Toronto for trials.
ALS Canada funds between $1.5 million and $2 million annually in research, Dr. Taylor said, putting the total of all agencies across the country at roughly $4 million. Even a yearly commitment of $5 million from the federal government, for four or five years, would make a massive difference, he concluded.
“I mean, that’s a rounding error for them.”
ALSO: ‘My dad’s been my biggest hero my whole life’
Congratulations to the Living Loving Laughing Walkers and our supporters for raising $6705 at the 2018 Walk for ALS! Since 2014 our walk team has raised well over $27,000 for the ALS Society of Canada! Woo Hoo! If you include Robin's Curling for Carol, Dad's Amazing Evening, the Ryder's Christmas campaigns, and Heather's Hudson Valley Walk to Defeat ALS, as a team we have raised over $45,000 for ALS research and care (and that is not even including the Ice Bucket challenge donations). WE ARE MAKING A DIFFERENCE! I can't even tell you how you have lifted my spirits and provided me with hope with your generosity.
It was a beautiful day as you can see and I am so grateful to my team for travelling from Calgary (Keith!), Toronto, all over Quebec, and of course Ottawa!
It was such a pleasure to meet many people living with ALS whom I have connected to via social media and those who have searched out my blog. I had no idea how many people actually read this! It was so touching to meet you all in person and now that I know you look to this blog for help, I will be more diligent in my writing.
Special thanks to Veronique at Social for hosting our beautiful and touching lunch. Congratulations to your amazing mom Lise, who though just diagnosed a few months ago, has already advocated on behalf of ALS by participating in a CTV News interview as well as an Ottawa Citizen interview, well done!
Also, special thanks to the Brookstreet Hotel for donating a night's stay for the silent auction.
Our ALS community is a group of loving and fierce warriors! Impossible to name you all but know you are always in my heart.
June is ALS Awareness Month in Canada and it hit me like a brick. I have been sick in bed with a cold for a week now. As most of my energy is spent dealing with ALS, when you have a cold, you have nothing left to fight with. I am doing my best to rest and recover because 1 week from today is the Annual Walk for ALS at the Ottawa War Museum. As much as I want to roll over and give up (I feel like there is no fight left in me sometimes), your messages of support and sponsorship of the walk help to lift me up and keep fighting.
Moments to Live For...
Even with a cold it is hard to feel sorry for myself when I can still appreciate moments like these...
Carol Jean Skinner (née Sharman)