"I’m fighting for the cure. I’m fighting to stay alive for when that cure happens," Steve Dezember tells PEOPLE

By Michelle Boudin
August 01, 2017 12:01 PM

It didn’t take long for Hope Dezember to fall for her now-husband, Steve.

“He charmed my socks off on our first date. He had candles lit, he had Frank Sinatra playing and he cooked crab legs,” she tells PEOPLE.

But there was something else about that night that stood out as the couple from Johns Creek, Georgia, got to know each other. Steve Dezember’s hands trembled and she watched him struggle to open a bottle.

“He’d been to the doctor seven times at that point, but he didn’t know what was going on,” Hope recalls.

In August 2011, four months after their first date, doctors figured out what was wrong. The former engineering recruiter, then 28, was diagnosed with ALS, commonly known as Lou Gehrig’s disease, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

Steve and Hope Dezember

Two days later, the couple went for a walk and Steve proposed. He had already bought a ring but told Hope he understood if she wasn’t up for the road ahead.

“He said, ‘You don’t have to stay with me, you heard what the doctor said.’ I said, ‘I’m not going anywhere,’ ” Hope recalls.

Courtesy of Raymond Adams

Two months later, in October 2011, the couple was married. Steve wanted to make sure he could walk down the aisle.

“It’s pretty wild, it’s an interesting thing when you get married and you don’t know how long you’re going to get with your husband,” Hope says.

By January of the next year, Steve was falling a lot and by 2013, doctors had to insert a tube to help him breathe. Hope hasn’t heard her husband’s voice since then. At one point, he was down to just 67 pounds and Hope had to watch as he came close to death — twice.

“When I look at him, he’s still just as handsome. He’s still cute. He doesn’t shave his beard anymore. He’s hairy, and I like that,” she says, laughing.

The couple’s love story is so powerful, they worked with a documentary crew to create a film that followed them for two years after Steve’s diagnosis. It debuted in 2014 and is currently available on iTunes and Amazon.

“I am really grateful to have that,” says Hope. “Back then I didn’t realize the value, how much I would watch the videos. I’ve known him longer now sick and without a voice, it’s a bit if a head game.”

Hope, 32, left her job as a mental health therapist to care for Steve, now 34, full time. This past year has been a tough one – until last month, Steve only got out of bed to go to the hospital.

The medical team has said there isn’t much more they can do for him, but Hope is a voracious researcher, constantly looking for ways to help her husband.

“The doctors make it sound very bleak, but we don’t buy into that,” she says. “We still believe there is plenty of hope.”

Steve spoke with PEOPLE using a computer, saying: “It’s not easy to know you’re on the path of being not able to move. It’s really a lot to deal with but I feel rather optimistic for having the prognosis I have. My days are spent watching the squirrels and when I have energy I watch TV and work the stock market. Hope is an angel, I am so thankful she has stuck it out with me every single day.”

Courtesy of Steve and Hope Dezember

This past week, Steve was finally well enough to get back in his wheelchair and return to doing something else he loves – painting. He picks the paint colors and then instructs people to move his chair in certain ways to come up with the designs.

“It inspires me and I know a lot of other people get inspired too. I’m so proud of him,” Hope says.

They expect him to have more paintings for sale in August. Find out more about his work and their story on their website, hopeforsteve.com.

“I’m fighting for the cure. I’m fighting to stay alive for when that cure happens,” Steve says.

Adds Hope, “The truth is we feel the weight of the heavy stuff, we don’t deny that it’s hard and it’s sad. We mourn when he loses some of his function, but we also find what’s left and we’re thankful for that. At the end of the day he’s still here and we still get to spend our days together.”