When Garrett and Jennifer Smith got the news of his Lou Gehrig’s Disease, they got angry. Then he went fishing and lived life.
Two years later, confined to a wheelchair and almost totally paralyzed from the neck down, Garrett is still living on his terms. The Navy Veteran is the first person in Wisconsin to receive the Independence Drive that allows him to steer and move his power wheelchair with a gaze of his eye.
“It just got FDA-cleared and we got it for him,” said Katie Schultz, a physical therapist from the Milwaukee VA Spinal Cord Injury Center.
Her job includes caring for Veterans like Smith, who have Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s. The disease affects nerve cells in the brain and spinal cord. It progresses, paralyzes and eventually leads to death.
The Independence Drive, created by Evergreen Circuits, is basically a green box that attaches to the back of a wheelchair and connects to a Surface Pro computer. Although Smith is quickly losing use of hand muscles, he can also use this to surf the internet and talk with friends and family through Skype, Facebook and other social media platforms.
Smith and his wife have three children: Everett, 10; Gracelyn, 8; and Caleb, 6. He was still in the Navy Reserve and just frocked to petty officer first class when he was diagnosed in June 2017 with Bulbar ALS, an aggressive form of the disease that causes rapid paralysis.
“There was anger. There was a lot of anger when we found out,” Jennifer said. “But that’s not right to stay angry. It was a time to love and be with family for all the time we had left. He went fishing and played cards. He played with the kids.”
The two joined support groups and encouraged one another, but it can be difficult. They’ve lost eight members in the last year, but their spouses still remain part of the group.
“We’re all a family. We’re all in this and we support each other. We know how it’s going to end. It’s a club nobody wants to be in, and nobody wants to leave,” Jennifer said.
By June 2018, Garrett needed a wheelchair, but was able to walk at times.
“There were a lot of falls and trips to the emergency room,” Jennifer said.
By October, he was in the chair full time. Garrett knew he wanted the Independence Drive and burned up phone lines and e-mail to get it.
“He was a procurement specialist in the Navy. He knows how to get things done,” Jennifer laughed.
VA wanted it, too, but first it had to be cleared by the Food and Drug Administration.
“We were able to get a demo at first,” Schultz said. “We aren’t going to get a piece of equipment like this for our Veterans without ensuring it’s safe to use.”
The equipment costs $12,000 and Schultz believes VA will soon be able to get them for other eligible Veterans.
So what all can Garrett do with it?
“Oh man, what can I not do?” he says.
Although his speech is hard to understand from ALS, Jennifer helps interpret for others. She’s good at it.
“That’s because 15 years together,” she said.
He controls turns and movements of the chair by fixing his gaze for a half second on the computer screen’s arrows.
“He almost ran me over yesterday!” Caleb giggled as Garrett took his chair for a spin around the Spinal Cord Injury Center.
When he isn’t using it to steer and drive his chair, he uses the same technology to shop on Amazon. He can adjust the thermostat and lights in his house from another screen. He only has to gaze at letters of the alphabet to type on the screen and can even use that to talk out loud.
“The freedom,” Garrett says, is what the machine gives him.
He stares for a moment at the screen, his eyes rapidly moving from one letter to the next. Then a robotic voice says: “Hello. Nice to meet you.”
“If this had come out a little sooner,” Jennifer says, “He could have recorded his own voice profile for the words.”
Like other ALS families, Garett and Jennifer don’t know how much longer they have but are determined to continue living – and enjoying – the life they have.
“I’m still here,” he says. “You never give up.”
“The worst part of the day for an ALS patient is going to sleep,” Jennifer says, “because you don’t know what you may lose when you wake up in the morning. It isn’t fair, but you can still lead a full life. You can wake up and experience something beautiful.”