When John W. Garrard started losing his balance while he was in high school, his family knew something was amiss.
As a child, he was diagnosed with autism, but that didn’t account for additional issues that arose when he was in high school, his mother Sam Garrard said. The family found out he has amyotrophic lateral sclerosis, a progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord, when he was an adult.
“He was diagnosed in December 2010,” she said. “We knew something was wrong but we didn’t know what.”
Diagnosing ALS is a process of eliminating other possibilities, so the answer doesn’t come after a blood test or two.
“In high school he was pretty outgoing and had lots of friends,” his brother Grant Garrard said. “He loved movies and could tell you about who was in them. He still loves movies quite a bit.”
The brothers used to enjoy playing outside together, building playhouses and the like. John Garrard loved singing along to music and going to dances.
“With ALS, he’s got a lot more problems,” Grant Garrard said.
Balance issues were only the beginning.
“Meanwhile he’s gotten progressively worse,” Grant Garrard said. “He got a walker, then he was falling on the walker. Then he went to a wheelchair to an electric wheelchair. He has trouble speaking now.”
Now 34, Garrard lives in a disability support home in McPherson.
He first moved to a disability support home, because of his autism, in 2000 after he graduated high school. He moved to the McPherson support home in 2006.
“We always told John he would get a job and apartment when he graduated from high school,” Sam Garrard said. “We raised him to want to be as independent as possible. We had it all set up ahead with the service provider. He was excited to get his own place with staff support.”
The family wasn’t happy with the first service provider John Garrard had, so they later moved him to the McPherson supported living home.
His mother and father visit him every weekend.
“His brothers live far away but they visit him when they are home,” his mother said.
Now that he’s lost most of his ability to speak, communicating with him isn’t so easy.
“We visit with him but there are not too many ways to communicate anymore,” his mother said. “Hugs. Smiles. We show him pictures of his brothers and family. He likes that.”
After Garrard was diagnosed, his family learned as much as they could about ALS and joined the ALS Walk to help raise money for research.
“We’ve gotten to know other families who are going through this, although there are no others with children going through this,” Sam Garrard said.
“Once ALS starts, it almost always progresses, eventually taking away the ability to walk, dress, write, speak, swallow, and breathe, and shortening the life span. How fast and in what order this occurs is very different from person to person,” the ALS association website reads.
While three years is the average survival time, some will live more than 20 years after diagnosis.
“Since John was diagnosed with juvenile ALS, we really had no idea how long this disease would last,” Sam Garrard said. “His balance was bad in high school, so we know his ALS probably started when he was around 15 years old. We’re happy we have had these years and that he’s gotten to be as independent as possible for as long as possible.”
The Garrard family will honor John by participating in an ALS walk Sept. 17 in Wichita.
Donations can be made through the ALS Association website. To credit which team, type “John’s Team” in the donor box. Checks made to ALS Association can be sent to Sandra Wall Garrard.