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A journey with ALS: Serge's story

Serge Vaillancourt coughs, the sudden attack making his blue eyes water. His wife settles a steaming mug of green tea in his hands and he takes a slow sip. He tries to talk, but can’t seem to get the words out so he swallows. His throat works. He takes another sip to soothe his muscles and tries again.

“It’s been a bad morning,” he says, his speech slurred and slow. “The worst is, it’s happening more and more.”

The 66-year-old was diagnosed two years ago with Amyotrophic lateral sclerosis, or ALS, an incurable disease that destroys the motor neurons that send electric impulses between the muscles and brain.

He knows he faces a challenging journey, full of ‘mini deaths’ of things he’ll never be able to experience again – the freedom of roaring down the road on his motorcycle, dressing himself in the morning and eating a home-cooked meal. But Serge is determined to find the silver lining.

Sure, he can’t clench his fist any longer, but he can still feel the warmth of his wife’s hands, he says. The muscles in his throat are weakening, making it hard for him to talk, but he can still sing a few lines of a serenade. He now has a feeding tube attached to his stomach, but at least it means he could be alive for his daughter’s wedding.

“Even with ALS you can find something to be happy about,” he said. “I’m glad for the life I have and the support that I do. I’m not going to go negative.”

Breaking the news

Serge calls her his angel. She calls him her prince charming.

They met more than two decades ago in Campbell River by chance, in the kind of meeting that could have only been fate, says his wife Nicky, her eyes sparkling behind frothy, blonde bangs.

She was going through a divorce and wanted nothing to do with men, and he was driving with his son and just happened to spot a friend in his rear-view mirror. He pulled over in a cloud of dirt and dust, nearly hitting Nicky as she crossed the street. When he spotted her, he forgot all about his friend. She was a “good-looking little honey and I was a single guy,” he said, chuckling.

The couple married 23 years ago this spring. Now, as they sit together in their living room, Serge says the disease is out of his hands. All he can do is cope the best he can and thank his lucky stars he has his wife. Having her gives him reason to live.

“I’m always like … can’t keep my mind off of you,” he sings, pausing to give her a lopsided smile. “Can’t take my eyes off of you. And then, can’t keep my hands off of you.”

It was because he wanted to protect his wife that he didn’t tell her about the diagnosis right away, he says. They had gone through a lot together.

Fifteen years ago, he was diagnosed with hepatitis C and cirrhosis of the liver. In 2003, the disease caused a varices bleed, a condition that saw the blood vessels in his throat expand until they burst. His doctor warned if it ever happened, not to exert any energy, lest he bleed to death. So he lay still on the floor as his wife called 911. It saved his life.

Two years after the bleed, the cirrhosis reached Stage 4 and he needed a liver transplant. The former equipment operator was skeletal thin at 125 pounds and spent a lot of time sleeping. His family wasn’t sure how long he’d live without the transplant. But on Dec. 29, 2005, after making a wish to a mall Santa for a new liver, he got his organ. It was a story of survival that led him to become a community advocate for the B.C. Transplant Society, sharing his experience and urging people to become organ donors.

His life would take yet another turn in January 2012.

Serge noticed a change in his muscle tone and made it a New Year’s resolution to get back in shape. It wasn’t long after he started lifting weights that his muscles began to ripple beneath his skin. His wife looked it up on the Internet and saw a link between ALS and persistent muscle twitches, but she pushed the idea aside thinking it was just over-exertion. Serge went searching for answers.

By March his doctor referred him to a neurologist on the Lower Mainland.  She tested his nerve impulses, and noted his muscle loss. By the second visit, she looked at him and told him she was sorry – it appeared he had ALS.

The neurologist referred him to the G.F. Strong Rehabilitation Centre in Vancouver for a full MRI to see if he could have anything else. There is no test for ALS. It’s a diagnosis of elimination.

The results came back negative.

“I didn’t really question it. I just accepted it. I just dealt with it,” Serge said. “It wasn’t something that I knew exactly you know, what it was going to entail, but I did know that it’s supposed to be devastating. That there is no way out.”

His wife had a right to know, but there was nothing she could do for him at that point, he said. Her mother was in the hospital battling cancer and it was getting close to Christmas.

“There was always one more thing I didn’t want to ruin for her,” he said.

But Serge also knew he couldn’t protect her forever. She was no fool, he said.

Nicky knew he was going to Vancouver to get tests, but he never said anything about a diagnosis. It was when she spotted him coming off the roof, out of breath after hanging up a string of Christmas lights, that she knew something was wrong. It wasn’t like him.

“I was looking at him and just had this gut instinct something wasn’t right and I asked him, are you keeping something from me? I said, please don’t spare me. Tell me if there’s something going on,” she said. “And I kind of spoke for him and I said, it’s not ALS, right? Because that was the worst-case scenario in my mind. I just threw it out there and he didn’t say anything, just started to tear up and cry.

“Honestly, I just howled because I was so devastated ... I thought this was a nightmare. I can’t accept it,” she said.

They sat down in the front yard and held each other and cried. Nicky asked him if he knew 100 per cent he had the disease. He backed away from the issue, saying he wasn’t sure and she clung to that hope, fooling herself everything was OK, she said.

Two months later, during a trip to the ALS Society of B.C. clinic, the couple had it confirmed. He had ALS.

The glass coffin disease

ALS, also known as Lou Gehrig’s disease after the famous American baseball player, affects 400 people in B.C. today. Thirty live in central Vancouver Island.

It’s a rare neurodegenerative disease, but when it comes to cruel illnesses, it’s considered one of the heavyweights.

ALS can affect anyone. In 90 per cent of the cases, the person has no family history of the disease. It attacks the motor neurons that transmit electrical impulses from the brain to the voluntary muscles in the body and as they die, those neurons are gone forever. It means that one day a person might be able to grip a coffee cup and the next, they’ll never be able to hold one again, according to Wendy Toyer, executive director of the ALS Society of B.C.

Eventually, as the muscles are paralyzed people lose the ability to swallow, speak and walk. The only things they have left are their senses. Toyer likens it to living in a glass coffin, where they can see, hear and smell, but not move. Toyer tried lying still for 20 minutes to get a sense of what people with ALS experience every day. It’s excruciating not to move, she says.

“You can’t itch your nose. You can’t move your hand to scratch it and you can’t speak to have someone scratch it for you.”

Because no two people experience the disease the same way, the hardest thing seems to be not knowing how quickly it will affect each person, Toyer said. Statistics show people live an average three to five years, but no one can say for sure.

Despite the challenges, those who work for the ALS society say after the shock of the diagnosis has worn off, patients with ALS do everything they can to live a full life and give back to others.

“You’d think people would be angry and bitter and withdraw but I see the exact opposite. Look at Serge,” Toyer said. “I mean he has ALS and he is going to pass away and yet he has completely dedicated himself to helping others with the disease. It’s extraordinary.”

It’s all how you react

It’s surgery day. Serge’s three children are lined up against one side of the ambulatory care unit at Nanaimo Regional General Hospital, blue masks covering their faces. He sits across from them, dressed in a grey sweater that tells passersby he’s in the fight to win against ALS.

But being there is another sign the disease is progressing. He must get a feeding tube in his stomach – a decision he grappled with. At some point he won’t be able to swallow and if he doesn’t get the tube installed before his breathing capacity is below 50 per cent, the surgery will be too dangerous. He could starve without it.

More than a month ago, he thought the idea sounded unnatural. He wasn’t sure he’d be able to sleep on his side if a tube was in the way. But he also knew it could prolong his life, perhaps long enough to see his son and daughter get married, and he is willing to go through whatever lengths to hang in there, he said.

Matthew Knee, his son from a previous relationship, came down from Campbell River, joining Serge and Nicky’s children, Myles and Ashley, at the hospital. Serge sat across from them in the waiting room, holding Nicky’s hand.

When the nurse strode into the hallway, it was more than 30 minutes past the appointment. “I’m looking for Serge,” she said, eyes already zeroed in on her patient.

“Oh,” Serge said, his eyes widening as he pointed down the hall. “He just left.”

“Cheeky,” she said, as she ushered him toward the prep room. His family crowded around him. His daughter hugged him first. “Love you, Dad,” she said, kissing his cheek. Myles took his turn, then Matthew and his wife. “Get it while you can,” Serge said, with a big grin. “A tube could be in the way soon.”

In the span of a few months, Serge has seen a lot of changes. He has gone from driving his truck to travelling by scooter; eating solid foods to getting liquid supplements through a feeding tube. His speech is slurred. He and Nicky recently visited a speech therapist, who gave them an alphabet chart he can eventually point to when he can no longer speak. When he can no longer lift a finger, he can look at the letters to spell words.

His wrists are also starting to hurt, making it hard to type. He spends time on the computer, sending out e-mails to raise money for this June’s Mid-Island Walk for ALS and pressing government for changes that would see property transfer taxes eliminated for those forced to move because of their disabilities.

The changes are frustrating and a challenge, Serge says. He knows what’s coming. Occasionally he talks about the importance of choosing when to die. He remembers one man at an ALS conference in a wheelchair and hooked up to a breathing machine. Once in awhile someone would help clean the phlegm out of his throat. His family shouldn’t have to see him like that. The last thing he wants is to wake up and see his wife in tears because he’s a vegetable she has to care for, he says.

But he is also not afraid of the journey ahead. He still hopes for a cure and plans to raise money for the ALS Society of B.C. so others with the disease have access to counselling and loan equipment programs.

He likes to say it’s not what you get that matters, but how you react.

“I am in my second year. Some people die within the first year. I am still here and I am not letting it keep me from doing what I can to help others,” he said.

This is the first story in a four-part series on ALS, which included Care for ALS patients often falls to spouse; The search for a cure; and Vaillancourt earns award for work for ALS awareness.

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