As I walked through the doors leading out of the auditorium, Jerry grabbed my arm and pulled me closer. It had just been announced to our church congregation that I had been diagnosed with ALS. Jerry whispered in his low gravelly voice, “You will learn to adjust, to adapt and to cope.”
Jerry had been injured several years previously in an ATV accident that left him with very little use of one arm, short-term memory problems and the loss of 80 percent of his lung function. But still he continued to work, and at what we perceived to be a tireless pace.
Jerry was absolutely correct. Those three words would come to define my life with Lou Gehrig’s disease. As the disease progressed, I adjusted and adapted my life and activities to cope with the restrictions that my new body gave me. I say my “new body” because I found that my body gave me things to confront on an almost daily basis. Twitches, spasms, cramps and a pervasive weakness began to be the order of the day. Each and every day.
Staying on the job
|A simple pencil and eraser helped Edwards keep typing and stay on the job longer.
My employer, a regional bank serving Oklahoma, Arkansas and Missouri, graciously gave me a week off following my return from the MDA/ALS center at Methodist Hospital in Houston, where I received my diagnosis. Although I was one of almost 4,500 bank associates, I was the first with ALS. The bank wanted me to determine whether I would take disability leave or try to work through the restrictions of the disease. I decided to work as long as I was able to fulfill my job as a regional branch president.
That decision brought about the first adaptations. We first addressed the issue of driving. That was solved by my wife, Linda, becoming my chauffeur. That necessitated some pretty substantial planning because I had branches in three different towns that required my presence. Linda would drive me there and take something she could do while waiting.
Our IT Department found a voice-recognition software called Dragon NaturallySpeaking by Nuance to adjust for my lack of ability to type. After hours of training the software, I found myself able to use the computer almost hands-free. A one-handed computer keyboard came too late for me to use it properly with my rapidly failing right hand. However, a large pencil with an add-on eraser was a low-tech solution to the problem.
For eight months, this system seemed to work. My associates did everything they could to make things easier, but the progress of my antagonist began to make it impossible for me to fulfill my job in the way that I wanted to fulfill it. I’ll always appreciate my employers for allowing me to leave on my terms.
Staying ahead of ALS
Following the recommendations of the MDA/ALS centers in Houston and Oklahoma City, Linda and I began to adapt our home for my new life. Our sons and their families came to the house one weekend, and we began to modify our home. Doors came off of bathrooms and room entrances to allow for wheelchair access. Plans were made to adjust the master bath shower and master bedroom. Furniture was moved to provide more room around the bed. Space was cleared to provide for the new things in my life, the durable medical equipment.
My wife’s dad was an inventor/tinkerer, a trait he passed on to his younger daughter. Linda began to use her natural instinct to create gadgets that would help me. The first and most famous was the device that we named the Arm Thing [see “Where There’s a Will, There’s a Way,” March 2007]. This ingenious little device allows me to use my arms to feed myself and operate the telephone and my laptop computer. It eventually started our second career with the advent of our business, MTE Devices, which markets the device.
But Linda didn’t stop there. As my neck began to weaken, she worked with the available neck braces to make one that is a little more comfortable to wear. A 2-foot length of water supply tubing became a straw that made up for my inability to raise a cup to my mouth. This is a great assist when traveling or drinking while watching television.
I continue to be able to use Dragon NaturallySpeaking in my home office, but my youngest son and his family bought me an array microphone [no headset required] from Acoustic Magic. This allows me to speak to my computer completely hands-free, which is great when you don’t have any hands. The only drawback comes from sounds originating from other people. Sometimes my documents have some extraneous words, but I can cope with that.
As this disease progresses, we find the adjustments and adaptations have become a little more critical. Weakness in my legs has brought about the need for a Hoyer lift. Issues with swallowing and choking have required the insertion of a feeding tube in my stomach. A respirator now sits noisily pumping air on my bed table at night.
What’s the next adjustment? What will the next adaptation encompass? Stanley Appel, director of the MDA/ALS center in Houston, would probably tell me that God only knows.
And of course, he’s right. God is the only one that knows. That next adaptation or adjustment to my life, to our lives, will show itself, and as with all the others, we will cope.