HUDSONVILLE, Mich. — Two and a half years ago Lisa and Mike Tubergen were on a beach vacation when a doctor friend noticed a "foot drop" in Lisa's walk.
Six months of testing later, Lisa was diagnosed with ALS at 58 years old.
ALS is amyotrophic lateral sclerosis. It's a neurodegenerative disease that affects the nerve cells in a person's brain and spinal cord. There is no cure.
"I said, 'What do we do now?'" Mike said he asked Lisa's doctor. "His response was, 'If you have a bucket list, start working on it.'"
They planned a cruise with family, visited a child in Colorado and spent plenty of time with loved ones. Mike said those were the last trips because Lisa's ALS was "pretty well advanced."
"ALS can stand for 'always losing something,' and that’s what we’ve kind of experienced," said Mike. "You get to one point where, 'Ok we can live with this,' and something else happens."
Mike said one of the toughest changes was Lisa losing the ability to talk. She uses a Tobii communication device, which tracks her eyesight.
"When I was diagnosed, I had to decide how I wanted to live," said Lisa via the communication device. "I could choose to be bitter or I could choose to live with joy. I chose joy."
One thing that has helped the Tubergens is the Susan Mast ALS Foundation.
The Susan Mast ALS Foundation provides support groups, respite care, equipment use, meals and more.
"It’s been invaluable to us," said Mike.
According to the ALS Association, every 90 minutes a person in America is diagnosed with ALS. Also every 90 minutes, someone dies from the disease.
"My dad had ALS and to see the impact that Susan Mast had on my family, there's nothing like it," said Colleen Kondratek, development and event manager for Susan Mast ALS Foundation. "When you're living with ALS and you have a disease that there's no cure for right now, to make an impact on the family and to help the families just live a little bit easier, is huge."
Kondratek said they help 135 families in West Michigan living with ALS.
Mike and Lisa said Lisa's diagnosis has changed their outlook on life.
"What this disease has done is all those things you say, 'Someday we will,'" said Mike. "We haven’t got a lot of 'somedays,' so it’s put an urgency. If there’s anything you want to say, you got to say it."
Mike said the family support has been incredible. Lisa's sisters and friends put together a schedule to care for Lisa during the day.
There have been family visits, including a special trip from Los Angeles for Lisa to meet her first great-nephew.
"She didn't think she was going to meet him," said Mike.
Lisa called meeting the baby "unbelievable."
To help choose Joy, Mike made numerous accessibility changes to their home, which they built together after they got married, and said they were not able emotionally to leave. He added lifts and even built a custom elevator for Lisa's chair.
They often go out to eat together, take boat rides and generally "live as much life as we can."
"We try to keep it all together when there’s activity and people around," said Mike. "But when people go home and it’s just us, that’s usually when we do a lot of crying."
The Susan Mast ALS Foundation has its Pedals event on Sunday. There is still time to register or volunteer. It is a day-long bike, run, walk or roll event.
"We are helping 135 families right now in West Michigan," said Kondratek, "On average, it costs $2,000 a year for a family, for us to take care of one family."