For many, the Ice Bucket Challenge in summer 2014 was their first encounter with amyotrophic lateral sclerosis (ALS) or Lou Gehrigs 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. Its embedded with eye tracking technology and can also be activated by touch.
Its 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 its outfitted with alarm buttons, a speaker and programmed with emergency telephone numbers.
Its pretty revolutionary for people to communicate in bed without any interference with anybody else, Rudnicki said. It improves independency and autonomy; they dont 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 its something little its 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 hes 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 its like to live with ALS.
Today, Im a quadriplegic, fed through a feeding tube, ventilator dependent and trached. I cant 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 husbands 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 Jacksons 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.
Its great because Tobii has the ability to speak on it, but also Tobii has the camera on it so I can see what hes looking at, Robin said, adding that if its a particular book she knows to grab it for him.
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