ANTIGONISH, N.S. — Kevin Landry can’t speak, but that doesn’t mean he no longer has a voice.
A signature thumbs-up – often coupled with a smile – lets people know that he continues to persevere, even though his body, more and more each day, is being attacked by amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease.
“Time, unfortunately, is not a friend when it comes to this disease,” his wife Tammy said.
Because of that, the couple has adopted a “one day at a time” philosophy.
Days are now ripe with challenges, as the motor neuron disease that has already taken away his voice, steadily erodes his muscles and, with that, his mobility.
Kevin recently had to start using a walker, after a cane no longer provided adequate stability.
The disease, which has no timeline when it comes to its progression, will eventually take away his ability to eat and swallow.
The ability to breathe, another casualty, has already been affected.
“Everything is still working, except the body,” Tammy said in describing how ALS is so ruthless.
She added “it has advanced more rapidly than we expected.”
‘You have ALS’
Just a year ago, Kevin retired after a more than 46-year career with the provincial transportation department, spending most of his time behind the wheel as a snowplow operator.
Not long after he marked that milestone – and celebrated his 65th birthday – they received his diagnosis.
“You have ALS,” Tammy said, her voice cracking, as she repeated the words delivered that day by a specialist in neurological disorders.
They knew something was the matter when the physician and his intern sat down and pulled their chairs closer to the couple before delivering the news.
“We knew there was something up for a year or so,” Tammy said, noting family, friends and finally co-workers started to notice Kevin’s voice was increasingly muffled, making him difficult to understand.
Although they were expecting answers that day, those three words still floored them.
“We were pretty positive,” Tammy remembered as they headed to the appointment.
That optimism waned the longer she spent in the waiting room, while Kevin underwent testing. A process that usually takes 15 to 20 minutes to complete had stretched to more than one hour.
“I just knew,” she said, as her voice trailed off.
By last Easter, as the disease started to take its toll more and more, Tammy decided she needed to be at home, so she took leave from her job as a highly-regarded music teacher with the Strait Regional Centre for Education (SRCE), an employer that she described as “amazing.”
“It has become about balancing dignity and pride with safety and well-being,” Tammy said, when it comes to making decisions about Kevin’s care.
They realize that, more than likely, the recent switch from a cane to a walker will be followed by the move to using a wheelchair.
“It was so hard on him,” Tammy said of the decision to stop driving, particularly for someone who spent the bulk of their career behind the wheel.
Not to mention that loss of a sense of freedom.
Nevertheless, Kevin gave a thumbs-down, when asked if he was angry about everything that has happened to him.
But that doesn’t mean there haven’t been "why me" moments for the couple, with Tammy recalling one emotional day, especially for Kevin, which was the first time the VON came to their house to provide assistance.
“It was a realization for us, I think, that we couldn’t do it on our own,” she said.
Tammy added that wasn’t easy for “proud people” who have always been independent.
Describing herself, with a laugh, as “liking to be in control,” she admitted it hasn’t been easy.
“But, we know we need help and we are so grateful to be getting it,” Tammy added.
‘Lucky’ people
Describing life with ALS as their “new journey,” she said they couldn’t do it without the tremendous support they have received.
“We have been lucky,” she added.
Of course, topping the list is their family. Married 12 years ago – the second walk down the aisle for both – the couple shares five children and two grandchildren.
“We wouldn’t be able to do it without them,” Tammy said in their Arbor Drive living room, one dotted with a collection of family photos.
There is also their “wide circle” of friends, who have been with them every step of the way.
“We have received so, so much support – it has been amazing,” Tammy said.
And, although they have experienced the “ups and downs” of the province’s system, she described the healthcare they have received as “tremendous”, starting with Dr. Michele Murphy, Kevin’s family doctor, and continuing with so many others throughout the process.
There has been the support of the Antigonish Palliative Care team at St. Martha’s, VON and the Antigonish and Area Homemakers – often on a daily basis.
Tammy also praised the ALS Society of New Brunswick and Nova Scotia.
“If you need something, they will make sure that you have it,” she said.
When they recently contacted the organization for a transport chair on a Wednesday, she noted it arrived at their door by Friday morning.
“They are an amazing group of people who do so much with so little,” Tammy said, adding they “enjoy helping people.”
Without the free options that the society offers, she noted, “we wouldn’t have these capabilities.”
As a thank-you, they take every opportunity possible to offer support for the organization and its work, including participating in the Light The Way – Giving Tuesday campaign on Dec. 3 by decorating in purple.
“We will be putting them up,” Tammy said of the Christmas lights that also deliver an awareness message.
When people ask what they can do, Tammy said her first suggestion is “to visit and spend time,” which can be challenging, considering Kevin is non-verbal.
While they are doing just that, so many are doing so much more, including launching fundraising initiatives.
“It has been incredible,” Tammy said.
To-do list
Lifelong friends – such as Mike MacIsaac and Joe MacDonnell – have been there every step of the way, including on a memorable trip last month.
They travelled to Montreal late last month to watch Kevin’s beloved Montreal Canadiens at Bell Centre.
“We started to put together a to-do list of sorts; things that we want to do before Kevin’s health prevents it,” Tammy explained.
The NHL hockey excursion topped the list for the former Antigonish Bulldogs’ trainer of more than 30 years.
Nevertheless, with his breathing and mobility worsening, along with the challenges making such a trip would pose, Tammy admitted she was “rather hesitant,” despite the couple’s focus on living each day to the fullest.
The idea moved to the back burner, so to speak, until one morning at the end of September.
Tammy remembered Kevin passing her a section of the Chronicle Herald, while pointing at the NHL schedule that the newspaper annually publishes.
No words were required to deliver his message.
Considering the mindset that everything they do must happen “sooner rather than later,” she started the planning process.
Just more than three weeks later, the couple landed in ‘la belle province,’ along with MacIsaac and MacDonnell, who were there to help Kevin get around but, more importantly, share the incredible hockey experience with their friend.
Although Montreal lost, it was a winning evening that included a moment on the well-known kiss camera found in arenas across North America.
“We won’t forget that,” Tammy said, as they both laughed.
With some help from Suzanne Davidson-Keay, their friend and Tammy’s teaching colleague, the unforgettable experience started long before puck drop at Bell Centre.
She contacted Antigonish native Al MacIsaac – the Chicago Blackhawks’ senior vice president of hockey operations – who helped set up a visit to the Canadiens’ team facility in Brossard, where they watched practice from ice level.
“We were so close that you could hear the slap of the puck,” Tammy said, as they both smiled.
She added, “It was all so cool.”
The future
In keeping with their "one day at a time" mantra, the couple doesn’t look too far into the future.
Time is precious; they enjoy every moment together and with friends and family.
Although it remains under siege, Kevin wants to draw every ounce out of his failing body, including using his walker as long as possible.
There is a pad that works like an etch-a-sketch, of sorts, allowing him to write notes. That, along with his thumbs-up, is preferred over relying on a phone application that can give him a "voice".
“He is stubborn; he won’t give up,” Tammy said.
When asked if he was scared, considering the prognosis for people with ALS, including an expected lifespan that averages two to five years after receiving a diagnosis, Kevin gave another emphatic thumbs down.
“We know what’s coming,” Tammy said.
What is ALS?
As described on the ALS Canada website – als.ca – ALS is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow and, eventually, breathe.
ALS is not contagious. There is no cure for ALS and few treatment options for the majority of people living with the disease. Approximately 80 per cent of people with ALS die within two to five years of being diagnosed.
Symptoms
Symptoms are what you experience or feel, whereas signs are what can be seen or measured. Symptoms and signs of ALS, and the order, in which they occur, vary from one person to another. In the early stages, they may seem trivial or be dismissed as normal signs of aging.
Potential early signs
– Tripping
– Dropping things
– Slurred or ‘thick’ speech
– Difficulty swallowing
– Weight loss
– Decreased muscle tone
– Shortness of breath
– Increased or decreased reflexes
– Uncontrollable periods of laughing or crying
Potential early symptoms
– Feeling weak
– Fatigue
– Muscle cramping or twitching
– Muscle stiffness or rigidity
Over time, the muscle weakening will continue to spread throughout the body, eventually causing difficulties with breathing, chewing, swallowing and speaking.
The sense of sight, touch, hearing, taste and smell are usually not affected, and for many people, muscles of the eyes and bladder remain functional until very late in the disease.
RESOURCES
CHRISTMAS WINE SURVIVOR
Suzanne Davidson-Keay has launched a holiday event aimed at not only helping Kevin and Tammy Landry with the costs associated with his ALS diagnosis and treatment, but also raising awareness about the disease.
Proceeds from Christmas Wine Survivor will be divided between the couple and the contest prize pool, which will be paid out in NSLC gift cards.
The $25 entry fee is due by Friday, Dec. 10, with the prize draws to get underway the next day (Dec. 11).
Entries will determine the number of prizes awarded. For example, based on
200 participants, approximately 20 names will be drawn daily over 10 days.
Daily draws will continue, until winners are chosen, while no buy backs are permitted.
The first name drawn, on Dec. 11, will be considered the ‘biggest loser,’ receiving five percent of the prize pool.
The final draw date is set for Dec. 20. If your name is drawn on any of the days prior to that date (with exception of the ‘biggest loser’), you are out of the running.
The 15 names drawn on the last draw date will be considered winners of the prize pool.
This is a reverse-draw – meaning the last name drawn is the ‘wine survivor.’
Here is the prize breakdown, based on 200 participants:
– Wine survivor – 25 per cent ($625)
– 2nd last survivor – 20 per cent ($500)
– 3rd last survivor – 15 per cent ($375)
– 4th last survivor – 10 per cent ($250)
– 5th last survivor – five percent ($125)
– 6th to 15th last survivors – two percent ($50)
– ‘Biggest loser’ (first name drawn) – five per cent ($125)
– Entry E-transfers can be made to [email protected].
Include your name in the message.
Winners will be contacted after each draw and, on Dec. 20, an update will be provided to all participants.
