ALS has devastating effect on families

Published in The Chronicle Herald June 7, 2018, written by Eric Wynne

Erin Hines, 24, loves Rainbow Haven Beach and she’s going to visit as many times as she’s able to. In January she was diagnosed with amyotrophic lateral sclerosis (ALS) or Lou Gehrig Disease. 

June is ALS Awareness Month. It’s a disease with no cure which destroys the body, paralyzing it as the brain loses the ability to communicate with muscles. Here are the stories of two young people with ALS: their journey, their fight, their loss.

At 24, Erin Hines had a plan for her life. Just last winter she was a college student looking forward to graduation, getting a job and going out with her boyfriend.

Three little letters changed all that: ALS, amyotrophic lateral sclerosis.

“I noticed back in August of last year that I was getting kind of weak but it was nothing specific and it was really isolated to my left arm and I remember thinking wow, I really need to work out more.”

Hines, who grew up and still lives in Dartmouth, noticed her hand was getting worse very quickly. Her pointer finger curled and she couldn’t straighten it.

“I thought, well that’s really not normal. That’s when I started going to the doctor and I started ruling things out like some kind of deficiency or carpal tunnel or arthritis,” she said.

Then it started in the other hand.

The doctors’ appointments started in October and by December Hines knew it was something serious. She was referred to a neurologist and took a number of tests including an MRI and lumbar puncture. The doctors were stumped at first, given her youth. Most people diagnosed with ALS are in middle age or late adulthood.

“I went home (from school) for Christmas and then on Jan. 16 is when I got the diagnosis.”

This is when Hines breaks down, tears streaming down her face, for the first time in the interview.

“At that point I knew it was something really serious because of how quickly everything moved, and I could tell by the doctors’ reactions to all the tests that something was really not right,” said Hines, who was taking a medical office administration course at NSCC at the time. “It’s funny because we were learning about neurological conditions in school right before break so I knew it was something really bad but it’s still obviously a shock, you can never expect that.”

There’s no cure for ALS; it’s a death sentence. Most have two to five years after the diagnosis, but there are exceptions to the rule, like Stephen Hawking who lived for more than 50 years with the disease.

But the ALS diagnosis wasn’t the shock, Hines said. It was how much her life changed in a year.

“Now it’s like I can’t work or do anything,” said Hines, who needs help getting dressed and doing her hair. “It’s pretty crazy how different life is now.”

Her hands are very weak. She struggles to hold a pen when only months ago she was scribbling notes for hours in her classes.

“I’ve had to learn to be OK asking for help because I just can’t do those things on my own. My legs are getting weaker, but at this point I can still walk.”

Painful muscle cramps happen all over her body at any time.

But what’s she’s scared of most is how much worse it’s going to get.

“It’s pretty hopeless. Lots of other diseases you have a hope of getting better but that’s the thing with this one: It just gets worse and worse.”

She takes CBD capsules (marijuana oil without the psychoactive ingredient). Hines said it makes a big difference. Massage also helps, and so does working with an occupational therapist for devices and braces to help.

Dealing with the psychological impact is a whole other thing.

Telling her family and friends was really rough. Hines, who has a twin sister living in Calgary, decided to tell everyone at the same time with a heartbreaking post on Facebook.

“It’s really hard to watch your family, and that’s one of the hardest parts: letting everybody know and try to deal with everybody else’s emotions along with your own. You try to stay positive for them but it’s really hard,” she said.

“Most days I really do think I’m doing really well with it, just taking one day at a time and try to focus on the things I still can do, and I have a really good support system.”

Hines said she’s moving forward, not thinking too much about the future and finding humour where she can.

“Sometimes things are funny, like you have to see the humour in it. Sometimes my hands twitch like crazy and instead of being really upset about it, just try to laugh at it instead. In some situations we try to stay light about it because, if you focus on everything that happens during the day that you have no control over, you would just be in a really dark place the whole time.”

There’s nothing funny about ALS, she clarified, but laughing at something that makes her want to cry takes the power away from the disease. Laughter feels better than crying, she said.

For now, she’s trying to focus on the day, the

moment, her family, and what she has now.

Through her tears: “Just doing what I can now, while I can.”

Eva, 3, and Liam Duff, 6, don’t take much notice that they have to play their dad’s cards for him because he can’t hold them in his hands.

It doesn’t faze these two balls of energy that their 31-year-old dad is in a wheelchair and can’t chase them around anymore.

“My daughter is too young to know what’s going on and my son knows there’s something wrong with me but he doesn’t fully understand. I think it’s the hardest on my wife. She has a lot to deal with but the military is very supportive and give us a lot of assistance,” said William Duff.

“The hardest thing is with the kids. I can’t do things with them I should be able to with them.”

In 2015 Duff noticed something wasn’t right: His biceps were twitching, then his hands started cramping. A year later he started seeing doctors who suspected ALS but were puzzled because he was so young.

The engineer for the navy who served on HMCS Summerside knew he had ALS but got an official diagnosis in June 2017.

His condition worsened and he had to leave his job last spring.

“I can’t move my arms anymore, my hands are basically useless. I can’t walk.”

As June is ALS Awareness Month, Duff said he wants people to know there is no direct government funding for ALS research. The ALS Society of Canada says $20 million was raised through the Ice Bucket Challenge, which was matched by Brain Canada with support from Health Canada. But this year funding will go back down to traditional levels of $1.5 million to $2 million per year.

“It’s really concerning that the government doesn’t really care,” Duff said.

When Prime Minister Justin Trudeau was here in January for a town hall, Duff asked him about being able to try experimental drugs and was disappointed by the answer from Trudeau, who said politicians are not involved in the drug approval process.

“There are prescription drugs in Canada that have shown . . . to slow down and even stop ALS in animals . . . but I can’t get that drug to try it,” said Duff, who wants to fight for his life.

About five months ago, his neurologist said he has about a year and a half, but Duff doesn’t focus on that.

“I’m of sound mind, I know what I’m doing to myself, but there’s no other options and the government won’t afford me the right to try drugs that are prescription drugs in Canada.”