Page 10 - Mobility Management, May/June 2022

ATP Series
ALS: Three Perspectives
A Caregiver’s Perspective: Team Gleason’s Blair Casey
Blair Casey
As Executive Director of Team Gleason, Blair Casey travels the world to share the organization’s goals of driving technological innova- tion to support people with ALS.
For Casey, the work is personal.
“I was familiar with ALS, because at
a young age I volunteered for the Muscular Dystrophy Association,” he said. “I had an idea of what the disease was, similar to muscular dystrophy or Friedreich’s ataxia. But I didn’t have an intimate relationship with ALS.”
Becoming a Caregiver
But the New Orleans Saints foot- ball team’s training camp was in Mississippi, where Casey went to college and played college football. While in school, he crossed paths
— again — with Michel Varisco, who had been his childhood babysitter, and learned she was dating Saints’ safety Steve Gleason.
“Every day, the guy would talk about life, love, culture, family, conversations you don’t have at the age of 21,” Casey said of Gleason, who later married Varisco. “Meeting somebody that I looked up to... this guy exceeded my expectations as a human.”
Casey worked for Gleason while
in graduate school, “helping with his finances. I went on to be an accoun- tant, but it was the relationship that
I had with [Varisco and Gleason]... they opened my eyes to how to approach life and people differently.”
When Gleason was diagnosed with ALS in 2011, Casey quit his job to become Gleason’s caregiver and the accountant for the new Team Gleason foundation. Casey’s experiences were included in the critically acclaimed 2016 documentary Gleason.
“I have first-hand knowledge,” Casey said, “a very intimate knowl- edge of the struggles, the pain, the reality, but at times, some of the beauties that come from such a very difficult disease.”
What People with
ALS Are Seeking
What do people with ALS and their families want when they approach Team Gleason? Are they looking for resources? Assistive technology? An emotional support system?
“I would say it’s all of the above,” Casey answered. “It depends on who it is, if it’s the person that has ALS or if it’s a caretaker, oftentimes a family member. I think they approach the conversation the same, yet differently.
“The person with the disease oftentimes is looking for resources
or has gone down the deep, dark Internet and is looking for clarity in direction. Ultimately, they’re looking for resources and access, but being a caretaker myself — when my journey began, I recognized the impor-
tance of ensuring you’re well rested, that you’re taking care of yourself. Because with ALS or in life, you go through hard times, and everybody needs to be well rested so that when things do get difficult, you’re mentally and emotionally prepared to fight when you have to. As opposed to being drained all the time.”
Casey said the organization “can get ahead of that by ensuring fami- lies know that there are resources, specifically with Team Gleason, its technology and equipment. We have tools that will be there with you
and for you along your journey. And if there are questions about other resources you’re looking for, don’t hesitate to ask. Because we work with other ALS organizations that may specialize in access to research, treatments, trials, care.”
Getting the best technology to people living with ALS is a crucial part of Team Gleason’s mission. “If you look back at people that live with ALS for a long time — Stephen Hawking lived with ALS for 52 years —
that was the first example of the benefit of assistive technology increasing quality of life,” Casey said. “What ALS takes away, technology and equipment give back. Without these assistive technologies, you wouldn’t be able to continue to do what you love, to be independent, to pursue purpose in life, as we all do.
“What’s the most high-priority aspect of it? I would say that what’s currently available is coded and funded so that there’s access to it and financial support for it. That there’s training. And there’s also the evaluation portion of it. Ensuring that clinicians are properly evaluating, whether it’s AAC [augmentative and alternative communications] or it’s feature matching to ensure that what somebody is getting is the right fit for them. Every component is equally important here, as well as looking beyond to what’s next.”
What Caregivers Know
Casey added that new technology needs to help everyone. “As a caretaker while traveling, I would bring a BiPAP, a ventilator, a cough assist, a suction. Oftentimes you don’t use any of those, but you need to have them. Imagine bringing those on top of all the [AAC] device mounting, wiring, wheelchair, wheelchair accessories, headrest components. Fortunately, a company called Ventec made a device called
10 MAY-JUNE2022|MOBILITYMANAGEMENT
MobilityMgmt.com
PHOTO OF BLAIR CASEY COURTESY TEAM GLEASON