GILBERT, AZ — November is National Caregiver Month, and while some choose caregiving as a profession, others have taken the role out of necessity.
“We have been living with ALS for eight years, he has a very slow-developing form of ALS," Maya Carter said as she cooked breakfast for her husband Maceo.
On Nov. 8, 2016, the Carter family's life changed forever.
"I had never heard of it, it was completely out of nowhere for me," Maya said.
They were living in North Carolina, but following Maceo's diagnosis, they had moved their entire family to Arizona to get care from the Mayo Clinic.
ALS is also known as Lou Gehrig’s Disease. It slowly destroys a person's nerve cells in the brain which control muscle movement.
“I can’t raise my arms, I can’t ball my fists," Maceo said. "I can't just stand up and give [Maya] a hug, we can't just walk and hold hands."
Maceo says slowly losing his independence has been difficult — and unexpected.
“It’s easy to sit and say, 'I can’t type anymore, do this anymore, do that anymore,' and just sit and wallow,” Maceo said.
Instead of feeling down, Maya and Maceo focus on what's still possible, pushing the boundaries of what the preconceived notions of living with ALS are.
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Despite being diagnosed eight years ago, Maceo still works a full-time job.
He works in customer service, doing his job with help from a computer program called 'Dragon' which hears voice commands to help Maceo click and type.
Outside of work, he has been horseback riding and water-tubing. He has also traveled to Washington D.C. to advocate to the FAA to penalize airlines who damage motorized wheelchairs essential for people like him with ALS.
He says none of this could be possible without support from his caregiver.
“She is one hell of a caregiver, one hell of a person,” Maceo said. "In the last six years, I have learned more about her than in the previous 14 years."
Maya is one of over 40 million Americans providing unpaid care to an adult.
“I don’t look at it as something I’m obliged to do, or look at caregiving as a job. I look at it as I’m just taking care of my husband," Maya said.
Maya and Maceo are registered with ALS Arizona.
"We've had an amazing ALS experience in Arizona, which I don't believe is possible anywhere else and that's because of the ALS Arizona chapter," Maya said. "They promote living with the disease, and taking care of the family as well."
If someone you know has ALS in Arizona and is in need of resources, click here.
