Former NFL actor with ALS uses his eyes to form and record to speak

September 3, 2014 - als

Many people have participated in or listened of a ALS Ice Bucket Challenge. It is a singular biggest thing to occur to ALS recognition given Lou Gehrig’s debate 75 years ago. Last week, we participated. Other than a fact that we was exposed during a time, it was flattering routine. The essential disproportion was that we had to have someone flow a ice H2O for me since we can't pierce during all. we have ALS.

Before we was diagnosed with ALS, we played in a National Football League for 8 years for a New Orleans Saints. In 2006, we blocked a punt, a play that became a pitch of how New Orleans, ravaged by Hurricane Katrina, had no skeleton of vanishing divided sensitively and disappearing. Today we can no longer pierce or speak, and we need assistance to eat and breathe.

When a chairman is diagnosed with ALS, or amyotrophic parallel sclerosis, he is approaching to blur divided sensitively and die. This is not okay. The average life outlook is dual to 5 years after diagnosis. Along with thousands of others, we am dynamic to not blur divided quietly. By communicating with other patients, it became transparent to me that with a clarity of purpose, a right support and a right technology, it is probable to live a suggestive life notwithstanding ALS.

Currently, we use a appurtenance that helps me breathe, and we have a feeding tube for nutrition. we promulgate by typing with my eyes onto a tiny mechanism inscription trustworthy to my wheelchair. Medicare calls this a speech-generating device, or SGD. The difference that we form can afterwards be comparison to be oral or sent in an e-mail, content or chat. we am means to use a same SGD to compensate bills, set a budget, call/text/e-mail for help, play a video for my son, write this essay and many more. This record is life-sustaining, and it allows me to be eccentric and productive. In a sense, this inscription is a heal for me.

Despite carrying ALS, we feel advantageous since we am not reliant on Medicare for my SGD, that typically costs about $14,000 and includes eye-gaze record that allows me to form by relocating my eyes. But thousands of others with ALS and other neuromuscular disorders including spinal cord damage do rest on Medicare for their SGDs. Recently, however, Medicare has reconsidered manners in a approach that could meant that SGDs like cave — ones that do some-more than yield approach vocalization communication — might not be covered. This would be harmful to ALS patients. It means they would no longer be means to promulgate by e-mail with their doctor, report hospital visits, hit puncture crew or perform any other activity where communication goes over reach of a patient.

Gleason blocks a punt during a diversion with a Atlanta Falcons in 2006. The play became a pitch of how New Orleans showed resilience after a extinction of Hurricane Katrina. (Michael DeMocker/New Orleans Times Picayune)

The examination might also finish adult denying a same eye-tracking record that allows me to form with my eyes. Most SGDs have an eye-tracking device attached. Once calibrated, this allows me to control my tablet, so enabling many of what we can do. Without this eye-tracking device, both a inscription and we are useless.

My organization, Team Gleason, is expecting to forestall such changes; thousands of patients and families — along with members of Congress — have assimilated us in a letter-writing campaign.

My initial symptoms from ALS were flesh twitching — called fasciculation — in my chest and back, along with flesh debility in my right hand. Strangely, several doctors told me it was zero to worry about.

There is no exam for ALS. Doctors radically ran a battery of tests for other illnesses. After several months of testing, we was finally diagnosed in Jan 2011. Seventy-five years after Lou Gehrig claimed he was “the luckiest male on a face of a earth,” there isn’t one effective diagnosis for ALS.

Upon diagnosis, many people’s initial greeting is denial. we was no different. Fortunately, we spoke with a few ALS patients who we saw were stability to live purposefully and productively. They strongly endorsed that we stay active in expecting detriment of my earthy ability. we had to sight myself that notwithstanding acknowledging my flourishing inabilities, we was not giving in to a disease. In fact, utterly a conflicting was true.

One year after my diagnosis, we was regulating a wheelchair. One year after losing my ability to walk, we mislaid my ability to speak. Heeding a recommendation to stay proactive, we had spent a prior summer recording my voice. After recording scarcely 5,000 sentences, we was means to use record to “bank” my voice. As a result, when we use my eyes to form my thoughts to my wife, my son or anyone, a voice they hear is mine. we trust that what ALS takes away, record can give back. Some day in a not-distant future, everybody will control computers with their eyes or their thoughts. When that day comes, remember that we listened it here first.

The Ice Bucket Challenge unconditional a nation has been a unusual and relocating countenance of support for people with ALS. Thank we to everybody who has participated and donated. Simply put, any pierce by Medicare to make it some-more formidable to live with ALS would be a tragedy.

To take a ALS Ice Bucket Challenge, Steve Gleason pronounced he had someone flow a ice H2O over him “because we can't pierce during all.” (David Lee/Team Gleason)

I have always believed that each tragedy provides an equal opportunity. We can concede people who select to live with ALS and other physically debilitating illness to continue to be prolific and to entrance a usually “cure” accessible during this time — normal, simple record that everyone, even toddlers use.

Gleason played with a New Orleans Saints until timid in 2008. In 2011, he combined Team Gleason with family and friends to support people with ALS and to boost recognition of a disease.

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