Many people have participated in or heard of the ALS Ice Bucket Challenge. It is the single biggest thing to happen to ALS awareness since Lou Gehrig’s speech 75 years ago. Last week, I participated. Other than the fact that I was naked at the time, it was pretty routine. The crucial difference was that I had to have someone pour the ice water for me because I cannot move at all. I have ALS.
Before I was diagnosed with ALS, I played in the National Football League for eight years for the New Orleans Saints. In 2006, I blocked a punt, a play that became a symbol of how New Orleans, devastated by Hurricane Katrina, had no plans of fading away quietly and disappearing. Today I can no longer move or speak, and I need assistance to eat and breathe.
When a person is diagnosed with ALS, or amyotrophic lateral sclerosis, he is expected to fade away quietly and die. This is not okay. The average life expectancy is two to five years after diagnosis. Along with thousands of others, I am determined to not fade away quietly. By communicating with other patients, it became clear to me that with a sense of purpose, the right support and the right technology, it is possible to live a meaningful life despite ALS.
Currently, I use a machine that helps me breathe, and I have a feeding tube for nutrition. I communicate by typing with my eyes onto a small computer tablet attached to my wheelchair. Medicare calls this a speech-generating device, or SGD. The words that I type can then be selected to be spoken or sent in an e-mail, text or chat. I am able to use the same SGD to pay bills, set a budget, call/text/e-mail for help, play a video for my son, write this article and much more. This technology is life-sustaining, and it allows me to be independent and productive. In a sense, this tablet is a cure for me.
Despite having ALS, I feel fortunate because I am not reliant on Medicare for my SGD, which typically costs about $14,000 and includes eye-gaze technology that allows me to type by moving my eyes. But thousands of others with ALS and other neuromuscular disorders including spinal cord injury do rely on Medicare for their SGDs. Recently, however, Medicare has reconsidered rules in a way that could mean that SGDs like mine — ones that do more than provide direct speaking communication — may not be covered. This would be devastating to ALS patients. It means they would no longer be able to communicate by e-mail with their doctor, schedule clinic visits, contact emergency personnel or perform any other activity where communication goes beyond earshot of the patient.
The review may also end up denying the same eye-tracking technology that allows me to type with my eyes. Most SGDs have an eye-tracking device attached. Once calibrated, this allows me to control my tablet, thus enabling much of what I can do. Without this eye-tracking device, both the tablet and I are useless.
My organization, Team Gleason, is hoping to prevent such changes; thousands of patients and families — along with members of Congress — have joined us in a letter-writing campaign.
My first symptoms from ALS were muscle twitching — called fasciculation — in my chest and back, along with muscle weakness in my right hand. Strangely, several doctors told me it was nothing to worry about.
There is no test for ALS. Doctors essentially ran a battery of tests for other illnesses. After several months of testing, I was finally diagnosed in January 2011. Seventy-five years after Lou Gehrig claimed he was “the luckiest man on the face of the earth,” there isn’t one effective treatment for ALS.
Upon diagnosis, most people’s initial reaction is denial. I was no different. Fortunately, I spoke with a few ALS patients who I saw were continuing to live purposefully and productively. They strongly recommended that I stay proactive in anticipating loss of my physical ability. I had to train myself that despite acknowledging my growing inabilities, I was not giving in to the disease. In fact, quite the opposite was true.
One year after my diagnosis, I was using a wheelchair. One year after losing my ability to walk, I lost my ability to speak. Heeding the advice to stay proactive, I had spent the previous summer recording my voice. After recording nearly 5,000 sentences, I was able to use technology to “bank” my voice. As a result, when I use my eyes to type my thoughts to my wife, my son or anyone, the voice they hear is mine. I believe that what ALS takes away, technology can give back. Some day in the not-distant future, everyone will control computers with their eyes or their thoughts. When that day comes, remember that you heard it here first.
The Ice Bucket Challenge sweeping the country has been a phenomenal and moving expression of support for people with ALS. Thank you to everyone who has participated and donated. Simply put, any move by Medicare to make it more difficult to live with ALS would be a tragedy.
I have always believed that every tragedy provides an equal opportunity. We can allow people who choose to live with ALS and other physically debilitating disease to continue to be productive and to access the only “cure” available at this time — normal, basic technology that everyone, even toddlers use.
Gleason played with the New Orleans Saints until retiring in 2008. In 2011, he created Team Gleason with family and friends to support people with ALS and to increase awareness of the disease.