OHIO — Like most of us, Chris Howell starts his day by brushing his teeth. But unlike many adults, he can’t do it alone.
That’s because he lives with amyotrophic lateral sclerosis, most commonly known as ALS.
Doctors diagnosed him with the progressive neurodegenerative disease in March 2019.
The inability to use his hands and arms fully is his most recent loss of function.
“Six months ago, you know, I could do this unassisted,” He said. “Three months ago, I started having problems. And for the last three months, I’ve had people helping me do this.”
Relying on others like his wife, Donna, isn’t easy.
“The perception of time changes,” Chris said. “When you look back and you say, you know, I’ve been living with this for three years now. Gosh, that three years seems like a lifetime because there’s so many things that have changed.”
One of the things that’s changed is how their home is set up.
“Every single thing in (his) room has a job,” Donna said.
Everything is now accessible. He sleeps in a hospital style bed.
“It is a specialized mattress that produces air and circulates it because with no use of his legs, his legs naturally frog,” Donna said.
There is the lift system in his bedroom that helps Chris get where he needs to go. It lifts him in and out of bed and into the shower chair.
“We keep him sitting on this mesh sling all day, and he sleeps on top of it because it makes our lifting job easier,” Donna said.
The Howells are always thinking one step ahead and anticipating future needs.
“It’s constantly changing,” she said. “Like in just a few weeks this (lift) system will be gone and a new one will be in that will take him from this bed straight into the bathroom.”
ALS has turned Chris’ family’s life upside down. The disease causes motor neurons to degenerate over time and eventually die. Many people affected lose their ability to move, speak, eat and breathe.
Currently, there is no cure, and the mean survival rate is two to five years.
But some live 10 years or longer, and hope is alive.
“We like to think that Chris is a very slow progresser, and we still have the faith that a miracle can happen,” Donna said. “It’s just got to come down and touch him. And when that happens, maybe someday, he’ll walk again and he’ll just, he’ll be OK. But for now, this is our life. This is what we deal with, and we make the best of it.”
Chris is a veteran. He served in the U.S. Navy during the first Gulf War, and while the cause of ALS is unknown, military veterans are more likely to be diagnosed.
The U.S. Department of Veterans Affairs recognizes ALS as a service-connected disease. That means the VA offers financial and medical support to veterans like Chris.
“We have a great team that we work with at the Cleveland VA,” Chris said.
At 53-years-old, the father and grandfather enjoys spending time with his loved ones and being outside.
Slowly losing his independence takes a toll. ALS places a massive financial, mental and emotional strain on families like the Howells.
Their son Josh came home from college to be there for his dad.
“Dad is my best friend, and all my friends know that they don’t hold any weight to him,” Josh said. “When I would come home from college every couple months, I’d see the drastic changes and I would know that it just be harder and harder to leave. So, it got to the point where I couldn’t be away. So, I came home.”
That’s why Chris said it’s important to make every moment count and not wait to do the things you’ve always wanted to do.
Despite the unkown, he believes in the power of a positive outlook.
“We take it one day at a time and we focus on the present,” Chris said.
“I couldn’t have picked a better husband,” Donna said. “I couldn’t have picked a better father. He’s given us a wonderful life, and now we’re trying to give him the best life we can give him when he needs it most.”
One the biggest and latest developments in the ALS community is the Act for ALS. It was signed into law by President Joe Biden in December to establish grant programs for neurodegenerative diseases.
Spectrum News spoke with the Director of Care Services of the Northern Ohio Chapter for the ALS Association Lisa Bruening to find out what this means for patients
“Thirty thousand petitions and emails and phone calls had occurred between ALS advocates and their members of Congress,” Bruening said. “We now have new hope and new discoveries and hopefully access to medications for people who have not had access to medications before. And since the Ice Bucket challenge in 2014, over 80 new medications and therapies have been in the pipeline so hopefully the Act of for ALS will give more exposure and hope.”
Act for ALS also expands access to individuals who were not eligible for clinical trials previously. Chris was part of a clinical trial in Chicago and said it’s an experience he would recommend to anyone who can participate because it could get us one step closer to finding a cure.
