WJHL.com – Local family lives with ALS, local professor researches new tech

ELIZABETHTON, TN (WJHL) -
As East Side Elementary’s Principal Dr. Josh Wandell rolls down the same hallway he walked down last year, he makes his way to a celebration down the hall. Wednesday Wandell turned 36.

Though the Wandells have tried to go about life normally this past year, it’s been a year unlike any other after Wandell was diagnosed with ALS last summer.

“There’s no hope medically.” Dr. Wandell’s wife Tabitha Wandell said. “Josh is a fighter and the doctor said, you will not beat this.”

The disease has no cure.

“The doctor two to five years is the average, but some people live ten and I just kept thinking, ten years is a long time, how can we savor these ten years?” Mrs. Wandell said.

Throughout the course of the disease Mrs. Wandell will see her husband become more and more paralyzed.

“It’s moved more in to his hands, and his speech is a lot more slurred he’s not able to button his clothes, I have to assist him getting dressed in the morning. He’s still able to do most of it.” Mrs. Wandell said. “I’ll probably have to learn how to tie a tie soon.”

For most people with ALS there comes a point where they completely lose the ability to move.

“If you were able to communicate I think it would take some of the fear away,” Mrs. Wandell said.

One ETSU researcher has dedicated his career to making communication in the later stages of ALS a possibility. In recent years it’s become a reality with a machine that uses brain waves to spell words on a computer.

“The person spelling will just focus on the screen no muscles, and focus on a particular like letter for example like the o, every time the o flashes his brain says ah ha that’s the o, that’s what I want to select,” Dr. Eric Sellers, Associate Professor of Cognitive Neuroscience at ETSU said. “The brainwaves act as virtual fingers to press the keys.”

It’s a way to spell out words by just thinking them.

The technology Sellers has developed has gotten faster in the last couple of years, and according to Sellers, now is as fast as some devices that require muscle control.

“We provided a man with the system, he used it for three years to continue working in his professional life.”

Sellers said that man was able to email, write manuscripts, even turn on and off the lights just by his brain waves.

He said they’re always looking for new people to work with.

The Wandells said they’d be willing to try.

“We’re open to any way that could help us communicate as the disease progresses because you always want to be able to communicate,” Mrs. Wandell said.

It could be a way for Dr. Wandell to communicate with his wife and their three kids.

Mrs. Wandell said with very little medical options, one way her family is getting through this is choosing faith over fear.

“we’re just choosing to have faith and not fear because god commands us not to fear. And in this situation fear could really overtake our lives because we don’t know what’s going to happen from day to day, we don’t about our finances, we don’t know if he’ll be able to walk next summer, we don’t know if he’ll see our kids graduate, and we just have to put our faith in god that he will take care of us no matter what the circumstances.’

Throughout the past few weeks the “ice bucket challenge” to raise money and awareness has gained popularity across social media. It’s where people pour ice buckets on themselves then challenge others to do the same.

As of Wednesday, the ALS Association has raised 31.5 million dollars in the past three weeks.

Now that the ALS foundation has raised millions more than they normally do through the ice bucket challenge Dr. Sellers said he’s going to start working on a grant application from the ALS Foundation.

Mrs. Wandell said while the challenge is raising money, it’s also raising awareness, something she said is also much needed.

“A lot of times we’ll go places and someone will say ‘what’s wrong with you?’ and Josh will say well I have ALS. And people will say ‘well I hope you feel better soon. And I know they mean well by it but a lot of people do not know what ALS is and how it affects families,” Mrs. Wandell said.

If you want to raise money for Dr. Wandell you can sign up,show up, or just donate to the Race for Wandell on Saturday, September 20th at East Side Elementary School. http://www.teamwandell.com

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