Carole Gariepy of Phillipston: Florida man with ALS has so much to teach us
It was an inspiration to meet Eduardo Trotman. I met him on FaceTime, an amazing computer app that allows people to see and talk to each other from distant locations.
Ed lives in West Palm Beach, Florida. My sister, who lives in Florida, arranged for me to meet him so I could write about a machine that changed his life. It's a machine he wanted to tell people about while he was still able to do it.
He has ALS, amyotrophic lateral sclerosis, better known as Lou Gehrig's disease, named after the immortal baseball player who was diagnosed with it when he was 36 and died two years later. It's a disease with no known cause and no cure. The disease affects the nerve cells that make the muscles work. As the nerve cells gradually die, the person loses muscle strength until there is no strength left in the body.
Ed worked in a warehouse, a job that required good muscular strength. He had been working there five years in 2019 when he started to have balance problems. Then, in 2020, bigger problems developed. His balance issues worsened, he felt weak, had several bad falls, and was dropping things, even the food on his fork dropped off. He had to stop working.
On top of realizing that awful changes were happening in his body, the timing was bad for getting medical attention. It was a very stressful time in history with COVID, a challenging time for doctors to meet the overwhelming needs of so many. His primary care doctor ordered tests, but results couldn't find anything. Ed's problems grew but were unanswered. He was discouraged, he felt so alone.
In 2021, he developed painful muscle spasms in his neck and shoulders. He couldn't sit still. His doctor prescribed physical therapy and the therapist wisely demanded that he have an EMG (electromyography) test. It's a test to assess the health of muscles and the nerve cells that control them. Finally, an answer – Ed had ALS. He was referred to an ALS clinic and to an ALS support agency.
From then on, his treatment was very supportive, but his condition was too advanced to be able to benefit from medicines that can slow down the progress of the disease.
Therapists came to his house – a physical therapist, occupational therapist and speech therapist. Each one came two times a week. Along with the therapy they provided, they educated him about the disease. It's important for a person to understand his condition and how best to deal with it.
Machine that changed Ed's life
In 2022, Team Gleason, a support foundation, provided him with a Tobii Dynavox, a machine that changed and enriched his life. It's a computer program that is beyond amazing. Ed had lost his ability to talk, walk, and use his hands. The only muscles that worked well were the muscles in his eyes, and with his eye muscles he could use that computer to talk, text, telephone, control the TV, take pictures, do research and play games. He looks at the screen and the machine responds to whatever his eyes focus on. He's become quite an expert. He quickly looks at a letter, it lights up, and after he spells out a word or sentence, he pushes the "speak" key and the computer talks with a clear voice. And, that's how I interviewed Ed.
He was upbeat, he smiled. He also showed how he added some useful sentences to the program so he doesn't have to spell them out, but can just look at the sentence and then focus on the speak key to say them. Some are: "I need some more water. I'm ready to go to lay down. I'm hungry." His girlfriend Renee said, "His most important sentence is one he tells me every day – 'I love you.'"
I asked him if there's any message he'd like me to include in the article. His eyes quickly went to work. "Well, I just want people to help others as much as they can."
It was tiring for him to use his eyes so much during our visit, but he ended by saying, "I enjoyed it."
Ed is still living at home. Renee cares for him with support from hospice and a hoyer lift to help move him from place to place. A caregiver is another word for angel.
It was a moving experience for me, emotional to see his disability but inspiring to visit a person with a broken body but a perfect mind who, despite the pain that couldn't be stopped by the strongest of medications, desired to help other people by passing on information about the machine that allows him to talk with his eyes.
Being able to communicate is so important. I wish we'd known about that machine when our sister-in-law had Parkinson's Disease.
Carole Gariepy is a Phillipston resident and author of “Dragging Gerry around the World” and “Why Go There?”
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This article originally appeared on The Bulletin: Carole Gariepy of Phillipston: West Palm Beach, Florida, man has ALS
