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A Caregiver's Perspective on ALS: Team Gleason's Blair Casey

Blair Casey

PHOTO OF BLAIR CASEY COURTESY TEAM GLEASON

As Executive Director of Team Gleason, Blair Casey travels the world to share the organization’s goals of driving technological innovation 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

A caregiver's perspective on ALSBut the New Orleans Saints football 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 accountant, 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 knowledge 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 importance 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 families 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 VOCSN — ventilator, oxygen, cough assist, suction, nebulizer. They made a five-in-one.

“As someone who remembers being in an airport and carrying all these things, on top of making sure we weren’t breaking or leaving anything behind… it’s a lot of responsibility. And because this equipment is integral to the person with the disease’s life and ability to live independently, they can’t be overlooked. It needs to be easier. For everybody.”

In addition to fully including people with disabilities in product development, Casey said caregivers also need to participate. “If you’re going through the product design process, it shouldn’t be a group of people that are making something to make something,” he said. “It should include those that it’s intended to serve, both the person with the disease and the caretaker. Because they’re equally as important to understand the environmental barriers or the real needs of all parties involved.

“That environment includes family and children. It includes your surroundings. Maybe your bedroom is in this part of the house and there’s stairs inside. There’s an array of environmental factors.”

Casey said Team Gleason learned that the hard way. “If you’re developing a product without the person that it’s intended to help in the family, without the caretaker involved, it’s not going to help anyone. It’s not.

“We started Team Gleason in 2011, and in the first two years, I remember working with families and sending out communication devices. We weren’t doing it properly. It took us a very short amount of time to recognize that we have to understand from a clinical perspective, from a patient perspective, a caretaker perspective, a support and environmental perspective. All these things have to be taken into consideration upfront, in the design, into the evaluation and ultimately into the support in the home. If it’s not done that way, it’s going to harm the community more than it’s going to help.”

Team Gleason’s technology training now includes families and caregivers. “The way you educate a family about equipment is different from a clinician,” Casey said. “Team Gleason does a fantastic job of understanding the needs of the community, because we’re getting over 430 requests a month. And our team is working hand in hand with people with the disease and their family, caretakers, clinicians. All of this allows us to better help improve and provide the best while we improve the future.

“ALS takes a village. Our team is that village, as it relates to what we provide and what we advance.”

This article originally appeared in the May/Jun 2022 issue of Mobility Management.

About the Author

Laurie Watanabe is the editor of Mobility Management. She can be reached at lwatanabe@1105media.com.

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