Device gives male with ALS ability to write novel, furnish music

June 17, 2016 - als

For many, a “Ice Bucket Challenge” in summer 2014 was their initial confront with amyotrophic parallel sclerosis (ALS) or Lou Gehrig’s disease. But while a videos have left from amicable media timelines, a illness continues to sack patients of their ability to correlate with a world.

ALS is an constantly deadly illness in that a haughtiness cells that control transformation gradually degenerate, heading to stoppage and genocide from respiratory failure. It is diagnosed in about 5,000 Americans any year. Up to 10 percent of ALS cases are an hereditary form of a disease. In many cases, though, ALS occurs for no famous reason.

However, interjection to record like Tobii Dynavox I-15 and the new PCEye Mini, patients are no longer faced with examination life pass them by. Released in 2013, a Tobii Dynavox I-15 is designed for patients with serious communication needs and typically entirely lonesome by Medicaid or Medicare. It’s embedded with eye tracking record and can also be activated by touch.

“It’s unequivocally sparkling for a lot of reasons given a pattern and support is pulling people toward critical an eccentric life, with people being means to strech their full potential,” Tara Rudnicki, boss of Tobii Dynavox, North America, told

The device is given with module called “Wake on Gaze,” that enables patients to spin it on from bed by looking during it, expelling a need for a caregiver to finish a charge for them. It can also be used in an puncture situation, as it’s given with alarm buttons, a orator and automatic with puncture write numbers. 

“It’s flattering insubordinate for people to promulgate in bed yet any division with anybody else,” Rudnicki said. “It improves independency and autonomy; they don’t have to ask somebody for things we take for postulated so many any day.”

The Tobii Dynavox I-15 also gives patients a event to attend in bland tasks, as is a box with Kip Jackson, who recently astounded his mother Robin by grouping groceries on Amazon. Jackson, 44, used a device to tell that one of a things he misses many given being diagnosed with ALS in Jul 2012 is being means to take caring of Robin. 

“Being means to do groceries – even yet it’s something small – it’s something that means a universe to me given he suspicion of me and helped me out,” Robin told

Jackson has also used a device to accomplish extraordinary feats, like producing song and essay a novel. Using a Tobii Dynavox I-15, Jackson told that as a self-proclaimed “geek/electronics hoarder,” he has always been meddlesome in producing music. He found a module online called “FL Studio” that is formed on practical synthesizers and drum machines.

“With a few twists and turns of knobs, we found we could make strange and singular sounds. Then we started creation melodies and recording them,” Jackson said.

Jackson also keeps a blog where he’s minute a happenings of his arriving novel, a thriller patrician “Watching You” that will be expelled Jul 31. He also uses a blog as an opening to uncover others what it’s like to live with ALS.

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

“ALS has taken divided my ability to pierce and breathe yet it can't – we exclude to let it – hold my soul,” he added.

Robin pronounced a post is loyal to her husband’s nature. With a assistance of a Tobii Dynavox I-15 a couple, who met in 2007, has been means to keep many of their daily routine, and suffer a date night any weekend. Every other weekend they typically revisit a Barnes and Nobles bookstore– Jackson’s favorite— with a family member who helps lift his equipment. In a store a Tobii Dynavox I-15, that is also propitious with a camera so a caregiver can see what a studious is looking at, plays another critical purpose in their experience.

“It’s good given Tobii has a ability to pronounce on it, yet also Tobii has a camera on it so we can see what he’s looking at,” Robin said, adding that if a a sold book she knows to squeeze it for him. 

More on this…

Robin has been means to keep her pursuit as a amicable workman while Jackson uses his time during a day to work on his book and music. A caregiver stays with him while Robin is during work, yet a device, that Jackson has called his “everything,” meets many of his needs.

Robin pronounced a Tobii Dynavox I-15 has helped them keep a hint of their attribute alive. Despite a diagnosis, Jackson has used a Tobii Dynavox I-15 demonstrate himself creatively. He still jokes with friends and argues with Robin like any other integrate does and it’s enabled him to live his life a approach he wants to, that is something that many trust disappears with an ALS diagnosis.

“Even yet it’s a depot disease, we can live with it and have a prolific life,” Jackson said.



More als ...

  • Research making ALS less of a mysteryResearch making ALS less of a mystery Ed Tessaro, 68, just joined the ALS Ice Bucket Challenge, the social media fundraising phenomenon that has brought in over $100 million in donations to fight ALS, or Lou […]
  • A cold truth behind the ALS Ice Bucket ChallengeA cold truth behind the ALS Ice Bucket Challenge Flora is a 38 year-old vibrant woman diagnosed with ALS this past year, and denied funds from this summer's viral Ice Bucket Challenge that raised awareness for ALSGeorge Guerin | Fitness […]
  • What’s Ailing You: ALS challengeWhat’s Ailing You: ALS challenge This week's "What's Ailing You" looks the popular ALS Ice Bucket Challenge and what it has done to help fight the disease.The challenge took the Internet by storm last summer. Many […]

› tags: als /