Sands of time, a chronicle of courage

The average person survives just three to five years with Amyotrophic Lateral Sclerosis (ALS)

Mike and Nadine share his experiences with ALS in a blog.

Nadine Sands stares lovingly at her husband Mike. She smiles sweetly as he struggles with his words. His hands twitch and shake. His voice is slurred and slow.

She smiles, but her eyes betray her concern.

She knows the man she loves will leave her soon, and there is nothing she can do about it.

The average person survives just three to five years with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, once they have been diagnosed.

There is no cure, and no treatment has yet been developed that can effectively lengthen a sufferer’s lifespan. Once the clock starts ticking down, it can’t be stopped.

For Mike Sands, the clock started ticking this past March.

It was devastating,” says Nadine. “You expect to grow old with someone … and suddenly that’s all taken away.”

Mike’s symptoms first began show up last summer. A twitching hand. Muscle spasms in his arm. Some weakness, but nothing major.

“I thought it was from weight-lifting,” Mike says.

At 50 years old, it was easy enough to chalk it up to aging.

But the symptoms continued, and worsened.

Nadine began to notice Mike’s shoulders drooping, and he started having difficulty swallowing his food.

“Keep your food in your mouth, you animal,” she’d say, chiding him as he used to do to their three children when they would eat with their mouths open when they were young.

Mike was working full-time as a nurse at Riverview Hospital in Port Coquitlam, and researched his symptoms. The possibilities were not good.

“I was hoping for Lyme disease or MS,” he says. “Anything but ALS.”

After visiting four doctors for four opinions, however, the consensus was that what ailed him was what he feared most.

It was a death sentence, and in an instant, the future he and Nadine had planned together, disappeared.

The pair eloped when Nadine was still in her teens. They lived an idyllic life in their Maple Ridge home, raising three children together: Erin, 22, Nathan, 21, and Madison, 17.

When all the kids are grown and out of the house, they would finally have time for just the two of them, together.

Nadine will miss every part of him, even the little things, the things that used to annoy her. Like how he would leave his towel on the bed after he took a shower.

“That towel’s not going to be there one day,” she says.

For now, Nadine wants the world to know his story.

Two months ago, she began chronicling Mike’s fight with ALS on a blog she started called ALS With Courage. On it she documents the highs and many lows the family has endured as the disease takes its toll on Mike.

It has been swift. Six months ago, Mike could run a six-minute mile. Today, he struggles to stay upright on his bicycle. His face has taken a beating from the repeated falls, but it’s not stopping him from trying.

“It’s funny how your fear of things disappears when someone tells you that you haven’t got long to live,” he writes on the blog. “My fear of flying is no longer a problem. Who needs sunscreen anymore? I’m the official taste tester for food that doesn’t smell or look right, as e-coli is a fear of the past.”

He’s not afraid of dying, says Nadine.

“Some people might feel like life is over, but Mike’s not like that,” she says. He doesn’t see his illness and its inevitable conclusion as an excuse to feel sorry for himself.

“I’m a little surprised that I’m not sadder than I am,” Mike says. “But it could have been a lot worse.”

He’s been able to see his children grow into adults. He got to work in a profession that brought him satisfaction. He’s travelled on charity missions to Africa and ran for Maple Ridge council twice.

Perhaps most importantly, he found the love of his life in Nadine.

“A lot of people who have ALS don’t get that.”

In some respects, he considers himself lucky.

“We’re all here for a time, and most of us don’t know when that time is up,” Mike says. “We go through life thinking, ‘I wonder when I’m going to die?’ That’s a benefit I have in one respect. I know how much time I have left, so I know exactly what I have to do before that.”

And what he has to do is make what time he has left, count, by spending as much of it with the family he loves.

“You start to look at your time together as very precious, and you don’t take anything for granted,” he says.

Mike cites his faith in God as helping him accept his fate.

“When you have faith that there’s something after death, life isn’t as precious,” he says. “That’s why it doesn’t scare me.”

Nadine posts just about every other day to the blog. She shares her thoughts and her fears, as does Mike and their children.

Initially, the blog was a way to communicate with Mike’s family in Ontario, giving them a glimpse what he’s going through.

“I just got the feeling one day that I was supposed to be writing all of this down,” says Nadine.

“It felt like something I had to do.”

Through the blog, through her words, Nadine creates permanence, a record of their time together and of their love for one another.

“We are dreaming that we will show up and the doctor will inform us that he has made a terrible mistake and says, ‘Sorry for the inconvenience, Mr. Sands, but we have made a mistake and you don’t have ALS after all. You are free to go now,” Nadine wrote in one post.

Another: “Mike and I haven’t been on a date for a while and I can’t remember the last candle lit dinner, but today I stretched out his hamstrings and he said it really helped … he was able to put his socks on. Now that’s wedded bliss!”

The blog is a record she hopes to share with the family Mike will likely never see, namely their grandchildren.

“We’ll have that, our children will have that, our grandchildren will have that,” she says.

The blog has received thousands of hits, from all over the world.

“If we can inspire people and make them laugh, maybe that will give them some encouragement,” says Nadine.

Like when the doctor recommended that Mike stop working and go on long-term disability, he said he could use some time off.

When his right hand continued to weaken, he said, “It’s a good thing I’m left-handed.”

When he was unable to run anymore, he was glad he could go for walks.

When he gave up the walks, he was thankful he could still ride his bike.

When he fell off his bike and landed on his face (again) and broke his nose, he said that the accident taught him to be more careful and perhaps it would prevent a worse accident down the road.

Their journey so far has been far from sad, Nadine says.

“People come up to us, and it’s all doom and gloom,” she added. “But it’s not doom and gloom. Mike is such a positive person.”

On Tuesday she wrote: “Today Mike said to me that there was a positive side to taking so many pills … he gets the recommended eight glasses of water a day … ”

They have their down moments, Nadine says, but you have to rally and keep moving on.

That is what Erin is doing.

“Since my dad was diagnosed with ALS, I have had to do a lot of trusting. I have had to trust the doctors who are taking care of him, the scientists who are looking for treatments and cures, and I have to trust that God will give him strength and courage to make it through the challenges he faces every day.”

That is their challenge.

• Click here to read ALS with Courage.

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