June 01, 2021
Lou Gehrig, the iconic New York Yankee who battled amyotrophic lateral sclerosis (ALS), once said, “I may have had a tough break, but I have an awful lot to live for.”
ALS, which is sometimes referred to as Lou Gehrig's disease, affects the body by attacking motor neurons of the brain and spinal cord. Destruction of these nerve cells leads to symptoms related to muscle control loss, like the inability to walk, speak, eat and breathe.
For those of us not battling ALS, it can be easy to take good health and the ability to go through everyday life without assistance for granted. But close your eyes and think of the emotional, physical, mental, and financial challenges you and your loved ones would endure if your health were to take a permanent turn for the worse. What would life be like if you suddenly couldn’t partake in daily activities like grocery shopping, tossing a ball with your child or even watching TV?
More than 5,000 people in the United States are diagnosed with ALS each year and as many as 30,000 Americans may have the disease at any given time.
The Cox team recently worked with one California family, the Trotts, who are dealing with the challenges of ALS. Before introducing you to their story and Cox’s involvement, consider this…
Listening, Learning and Taking Action
According to I AM ALS, more than 60% of Americans did not know that ALS is fatal and more than 95% of Americans could not name a group, foundation or association that is involved in finding a cure for ALS.
Both May and June offer dedicated opportunities to pause, learn and reflect about the ALS community. May marks ALS Awareness Month – dedicated to increase awareness of ALS and of the severe physical, emotional, and financial burdens it creates for people living with the disease and their families.
This year on June 2, Major League Baseball is kicking off the first official annual Lou Gehrig Day to celebrate the life and impact of the Hall of Fame first baseman and raise awareness for ALS.
While both milestones shine a much-needed light on the challenges people diagnosed with ALS face and the fight to find a cure, this is a daily battle for those afflicted. Fortunately, great strides are being made to improve accessibility and quality of life.
Technology Creating Accessibility
Today’s advanced technological innovations are helping to improve the way people with ALS live and communicate. These devices include:
- Speed-generating equipment that electronically synthesize speech;
- Writing tablets that enable people to put down words, even though they have lost the ability to physically write;
- Brain computer interface systems that allow users to control a computer or other electronic devices with their brainwaves;
- Text-to-speech software that empowers folks to control an on-screen keyboard and mouse without using their hands;
- Eye-gaze control systems that use eye movement to select letters and words to synthesize speech, power their wheelchairs or TVs.
Just recently, Cox developed a solution called the Accessible Web Remote for Contour, which enables customers with ALS and other disabilities to control their TVs with their eyes. The free web-based remote control is navigable using various assistive technologies owned by customers, including eye gaze hardware and software, switch controls, and sip-and-puff systems, which the user controls by gently blowing into a tube.
Hugs and Hope
As Americans reunite, some of the 10 million immunocompromised can’t. Tom Trott is one of those individuals. Four years ago, Tom was diagnosed with ALS and can only communicate with his eyes. He hasn’t been able to receive visitors in over a year due to COVID-19.
But Tom is facing the pandemic with the same attitude he faced his ALS diagnosis. He is focused on what he can do instead of what he can’t do. This perspective is a major source of inspiration for his nephew Drew Trott.
Growing up, Drew was repeatedly told that he resembled his uncle Tom. They shared a sense of humor, career choices and a love for the West Coast – both having left family in the east to plant roots in California.
Drew worries that every moment with his uncle could be the last – especially since it’s been more than a year since they hugged because of the COVID-19 pandemic.
Cox and interactive fashion brand, CuteCircuit, have teamed up to launch the Hug Shirt™, an innovation that allows loved ones to embrace virtually over long distances. The wearable connects Bluetooth to a mobile phone’s Hug Shirt app to record and deliver a hug.
To help connect people together, Cox Communications has gifted the Hug Shirt to three deserving families, including the Trotts. Through the Hug Shirt’s technology, Tom and Drew can safely give long-overdue hugs.
Cox is committed to making connection possible for customers with disabilities like ALS and creating solutions to improve their quality of life. For the past three years, Cox has partnered with organizations including Team Gleason to design and develop more accessible and inclusive products. Team Gleason is an advocacy organization that has provided $10 million-plus in adventure, technology, equipment and care services for those with ALS. The organization was founded by Steve Gleason, a former New Orleans Saints football player who was diagnosed with ALS in 2011.
Lending a Hand
There are thousands upon thousands of Americans with disabilities that prohibit them from doing simple things like walking, eating or using their TV remote without assistance. Quite simply, Cox cares because accessibility matters.
We want to help people by improving accessibility in our area of expertise, which is why we have invested in organizations devoted to ALS, people living with ALS and by providing solutions to those afflicted with ALS and other degenerative diseases and conditions. Learn more about Cox’s expanding catalog of disability friendly technology here.
If you are interested in getting involved and supporting the ALS community, visit https://www.als.org/get-involved for local opportunities to make an impact.