Device gives man with ALS ability to write novel, produce music

For many, the “Ice Bucket Challenge” in summer 2014 was their first encounter with amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease. But while the videos have disappeared from social media timelines, the disease continues to rob patients of their ability to interact with the world.

ALS is an invariably fatal disease in which the nerve cells that control movement progressively degenerate, leading to paralysis and death from respiratory failure. It is diagnosed in about 5,000 Americans each year. Up to 10 percent of ALS cases are an inherited form of the disease. In most cases, though, ALS occurs for no known reason.

However, thanks to technology like Tobii Dynavox I-15 and the new PCEye Mini, patients are no longer faced with watching life pass them by. Released in 2013, the Tobii Dynavox I-15 is designed for patients with severe communication needs and typically fully covered by Medicaid or Medicare. It’s embedded with eye tracking technology and can also be activated by touch.

“It’s really exciting for a lot of reasons because the design and support is pushing people toward living an independent life, with people being able to reach their full potential,” Tara Rudnicki, president of Tobii Dynavox, North America, told FoxNews.com.

The device is outfitted with software called “Wake on Gaze,” which enables patients to turn it on from bed by looking at it, eliminating the need for a caregiver to complete the task for them. It can also be used in an emergency situation, as it’s outfitted with alarm buttons, a speaker and programmed with emergency telephone numbers.

“It’s pretty revolutionary for people to communicate in bed without any interference with anybody else,” Rudnicki said. “It improves independency and autonomy; they don’t have to ask somebody for things we take for granted so much every day.”

The Tobii Dynavox I-15 also gives patients the opportunity to participate in everyday tasks, as is the case with Kip Jackson, who recently surprised his wife Robin by ordering groceries on Amazon. Jackson, 44, used the device to tell FoxNews.com that one of the things he misses most since being diagnosed with ALS in July 2012 is being able to take care of Robin.

“Being able to do groceries – even though it’s something little – it’s something that means the world to me because he thought of me and helped me out,” Robin told FoxNews.com.

Jackson has also used the device to accomplish amazing feats, like producing music and writing a novel. Using the Tobii Dynavox I-15, Jackson told FoxNews.com that as a self-proclaimed “geek/electronics hoarder,” he has always been interested in producing music. He found a program online called “FL Studio” that is based on virtual synthesizers and drum machines.

“With a few twists and turns of knobs, I found I could make original and unique sounds. Then I started making melodies and recording them,” Jackson said.

Jackson also keeps a blog where he’s detailed the happenings of his upcoming novel, a thriller titled “Watching You” that will be released July 31. He also uses the blog as an outlet to show others what it’s like to live with ALS.

“Today, I’m a quadriplegic, fed through a feeding tube, ventilator dependent and trached. I can’t talk, swallow or smell (this has turned out to be a blessing in disguise.) Despite this, I am the happiest that I have ever been in my life,” Jackson wrote in his blog.

“ALS has taken away my ability to move and breathe but it cannot – I refuse to let it – touch my soul,” he added.

Robin said the post is true to her husband’s nature. With the help of the Tobii Dynavox I-15 the couple, who met in 2007, has been able to keep much of their daily routine, and enjoy a date night each weekend. Every other weekend they typically visit a Barnes and Nobles bookstore– Jackson’s favorite— with a family member who helps carry his equipment. In the store the Tobii Dynavox I-15, which is also fitted with a camera so a caregiver can see what the patient is looking at, plays another vital role in their experience.

“It’s great because Tobii has the ability to speak on it, but also Tobii has the camera on it so I can see what he’s looking at,” Robin said, adding that if its a particular book she knows to grab it for him.

Robin has been able to keep her job as a social worker while Jackson uses his time during the day to work on his book and music. A caregiver stays with him while Robin is at work, but the device, which Jackson has called his “everything,” meets most of his needs.

Robin said the Tobii Dynavox I-15 has helped them keep the spark of their relationship alive. Despite the diagnosis, Jackson has used the Tobii Dynavox I-15 express himself creatively. He still jokes with friends and argues with Robin like any other couple does and it’s enabled him to live his life the way he wants to, which is something that most believe disappears with an ALS diagnosis.

“Even though it’s a terminal disease, you can live with it and have a productive life,” Jackson said.