Faces of ALS: “Everyone deserves a voice…”

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Tuesday, April 16 was World Voice Day, a day to talk about the importance of healthy and effective communication. It’s estimated that approximately 75% of all people diagnosed with ALS will need some form of communication assistance. Communication devices are essential tools in empowering people living with ALS and providing them with better lives.  That’s why we’re proud to partner with Steve Wells and his company, Asyst Communications, to offer these services to our community.

In the early 1980s, Steve Wells was working for Allstate as a programmer when a close friend was diagnosed with ALS. “His biggest fear was losing his ability to communicate. I searched for a solution to help him but couldn’t find anything. So, I designed one.”

Using an Apple II computer, Steve rigged an eyebrow switch his friend could use to control the computer, developing one of the first technological devices people living with ALS could use to help them continue communicating after the disease had taken their voice.

Now, Steve owns Asyst Communications, a company dedicated to helping people living with ALS communicate. As a partner with the Les Turner ALS Foundation, Steve has worked with people living with ALS for over 25 years, not only giving them a voice through communication devices but training them on how to use the device.

For us, this is personal. And Steve joins us in our mantra of providing individualized care to people living with ALS.

“When a support services coordinator or clinician at the Les Turner ALS Center at Northwestern Medicine identifies a person living with ALS who could benefit from a communication device, we often go visit them and try to understand their unique situations, what their current abilities are and where they need help. Every situation is different. Once I have a good understanding of that situation, I offer some solutions. And, hopefully, we get them set up with a solid option that ensures their voice will continue to be heard loud and clear regardless of what ALS throws their way.”

Steve sees that first visit as the start of a relationship. As the disease progresses, the needs of a person living with ALS changes, and Steve and his team are there every step of the way to help.

“When a person living with ALS loses their speech, or can no longer use a particular piece, the Foundation works with us to go back into the home and help with new adjustments to keep their voice strong.”

For many people living with ALS, the idea of losing your voice is what’s most scary and can leave a person feeling most helpless, isolated and frustrated.

“Imagine being mentally sharp as a tack, but unable to move and having no way to communicate. You can’t write. You can’t use your phone. No texting, no email, no internet, no speech, nothing. Now imagine we show up and teach you how to use a device that gives you all of that back again.  Wouldn’t that change your life?”

“Everyone deserves a voice. And with today’s technology, there is no excuse for a person with ALS to not have a voice.”

“Asyst is a tiny player on a team full of quiet, unassuming rock stars. They do what they do tirelessly because they are all passionate about trying to help people living with ALS to live better lives. I work with the Les Turner ALS Foundation because I see the work they do, and the lives they change. We are privileged to play a small role.”

If you would like to give someone else the gift of a voice, please consider donating used communication devices to the Foundation by contacting 847 679 3311.

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