Published: 01/16/2018 03:51 PM
We thank caregiver Jeela Tamrakar for writing this two-part piece to honor Anthony, her patient who has ALS and uses Tobii Dynavox devices for access and communication. Jeela hopes that those who read Anthony's story will consider the good quality of life they, their loved ones and friends can enjoy through technology. (To read Part 1, click here!)
By Jeela Tamrakar
Tony was diagnosed with ALS at a time when he had set out for big achievements, but nothing pulled him back. With a loving family, a great team of business associates and a team of nurses he affectionately calls “Tony’s Angels,” the disease didn’t stand a chance of coming between him and success.
As with his work, Tobii Dynavox technology is a very big part of Tony's personal life. He can continue to raise his children like before, offering guidance and providing financial support.
The technology is vital to his daily care. “I effectively communicate my needs to my caregivers and summon help at any time. It makes me feel safe in any environment,” Tony says.
Outgoing and fun-loving, Tony blends eye-tracking into his favorite activities. A huge Star Wars fan, he turns on his computer to watch movies. He also controls his TV with the PCEye devices. Tony likes having a way to communicate at a Texas Rangers baseball game, casino or movie theater as well as the practicality of the technology for doctor appointments and ALS support group meetings. He even prints out the shipping label when an item he lists on eBay is sold. The only thing left for us to do is pack it up and bring it to the post office. Tony can monitor his bank accounts, make purchases online and watch videos on his home security cameras.
“I effectively communicate my needs to my caregivers and summon help at any time. It makes me feel safe in any environment.”
Tony, Tobii Dynavox technology user
Lindsey has worked with Tony for almost two years. Without the technology, I don’t think she would know him as well as she does. “Tony is a very smart and driven man,” she said. “He doesn’t let the disease hold him back from his goals. I admire his passion to be his best.”
Since 2013, I have been working with ALS patients and technology has evolved tremendously. I have witnessed the lives of people with and without it. Trust me, the difference in the quality of life and care is vast. Though I wish I had known more about this technology sooner, I hope this story encourages other patients to use it and caregivers to encourage patients to use it.
Tony embraces the technology gracefully and with pride. I asked what he would say to inspire others to be open to it. “It would allow you to live a life where you can make a contribution,” he said. “It would give you a voice so you can participate. It would give you independence. And you could live to enjoy life. I do.”
"Tony’s active use of the technology allows me to be a better caregiver."
Jeela, Tony's caregiver