Can we talk? Well, no, actually, we can’t talk… because I can’t really talk. Oh, I can make sounds, but those sounds seldom form themselves into recognizable words. Only my husband and son have the patience to try to understand me, and they’re pretty darn good at it! My nurses try to guess, but it’s very hit or miss. That was not always the case. In earlier years, before the ALS attacked the muscles around my mouth and tongue, I used to have whole conversations with my nurses.
Some people who are on the ventilator can’t talk because they choose to have their cuff up all the time. The cuff is a balloon-like thing embedded around the base of the trach that, when inflated, seals off the passage around the trach and prevents the air being pushed in by the ventilator from escaping back out the trach stoma (opening in neck). I only have my cuff up for the 10 or so hours I’m in bed. If I didn’t do that, almost all of the air would escape out my stoma. When my husband gets me up in my wheelchair, he deflates my cuff and I can make sound again. You can only make sound when air passes over your vocal chords. The way you make sound when you breathe with a ventilator is completely different from how regular speaking folk make sound. Normally, people inhale a breath and slowly let it out as they speak, but people on ventilators can only speak during the second or so when the air is going into their lungs on each breath, which may be five seconds apart.
I got my first communication device in 1996. I could still communicate with people, but I had a very smart doctor who knew I needed to learn how to use my communication device before I desperately needed it. There are a lot of devices on the market. They range from the simplest expressions of “I need” or “I want” whatever on a very basic display to something like what the brilliant physicist, Stephen Hawking, uses. A speech therapist can ascertain your needs and show you the different options.
My first communication device was a Liberator from the Prentke Romich Company. Man oh man, I loved my Liberator! I believe it was sixteen keys wide and eight keys deep. It operated on a beautiful, icon-driven language called Minspeak. I used it for many years and would have used it longer if the company had been able to service it anymore. In those early days, when I could still move my neck, I was very fast, because I made direct hits on the keys with an infrared headpointer. Once I became less mobile, I moved on to a sensor taped to my forehead and a quarter-row-key scan of the keys. I would move my forehead to make a hit. It was funny at times, because some people thought the sensor was reading my mind! When the Liberator became an antique, I moved on to the ECO. The beauty of staying with the same company is that, once you learn the language, you can operate any one of their devices. Now, I’m sad to say, even my ECO is getting older!
You can’t overstate the importance of being able to communicate. It’s the essence of being human to interact with other humans. It’s tied directly into our will to live. When I began using a communication device, our son was only around one and a half and I was quickly losing the ability to clearly read “Goodnight, Moon” to him. There were so many things I wanted to say to him and I didn’t know how long I would be a part of his life. So I began writing a diary for Daniel on my Liberator.
You can program your own entries on the Liberator and the ECO, whether it be a word, a series of words or a piece of writing, but it does have a limit. As soon as I hit that limit, I would print out that portion of the diary. Once I was interfacing with a computer, beginning in 1999, I could store the parts of the diary on the computer. The Liberator had a little cash register receipt roll of paper in it that it printed on. Unfortunately, once I printed it out, I would erase the entry. Now the only record I have of those early entries is a box of those little rolls of paper and, because the ink has faded so much, they appear to be blank! I have not given up. I’m going to take them over to the photographic/art place that does my prints and see if they can do something to raise an image and photograph it. Wish us luck!
No, you can’t overstate the importance of communication to express your thoughts, your hopes, your fears and just your basic needs and wishes. So, my ALS brothers and sisters, I would highly recommend that you invest in a communication device in a timely manner, that is, before you completely lose the ability to communicate. And, please, please, please, take the time to learn how to use it, not just for yourself but for those around you. Communication devices are too expensive to let them gather dust on the shelf! I’m so thankful we live in a time when technology allows us to continue reaching out to others.
So, can we talk? You bet, with my communication device!
Nashville artist and writer, Erin Brady Worsham, was diagnosed with ALS in 1994. Through the wonder of technology, she continues to work today as an artist and a writer.