In memory of Perry Beabout
a U.S. military veteran living with ALS,
someone we've lost to ALS
Since my diagnosis, we’ve tried to make the most of our time and we have taken advantage of living under the same roof.
This is Perry’s story told in his own words while he was living with ALS.
When I was 22 years old, I joined the Air Force. This changed my life in many ways. I’d grown up going to church with my family. I’d learned about GOD and the Bible, but it didn’t affect my life. That changed when I found Christian radio. As I listened, I began to understand more about GOD and the Bible. At one point while listening, I felt convicted to pray, repent, and accept Jesus as my Lord and Savior. (You might be asking what that has to do with ALS. I will get to that soon enough.)
I’ve been blessed with relatively good health for most of my life. But in the summer of 2019 — around my fifty-sixth birthday — my left foot started giving me trouble. My wife and I have always enjoyed walking and hiking. We took frequent walks around a lake near our home. But that summer, I noticed my left foot feeling heavier and heavier as we walked. At first, I didn’t think much of it. But it continued getting worse. After a few months, I made an appointment to get my doctor’s opinion. He examined me and had me do some exercises that caused me to have cramps. He told me to make an appointment with a neurologist. I didn’t like that idea, so I decided to see a chiropractor instead. That ended up being a waste of time and money — it didn’t help. So I went ahead and scheduled an appointment with the neurologist. Initially, he diagnosed me with something called “drop foot.” But he also scheduled an EMG nerve conduction test (just to be sure, he said).
At the nerve conduction test, I could tell things didn’t look normal. I asked the medical staff overseeing the test if he’d seen anything like my results before. He acknowledged that yes, he had, but that I’d need to discuss this with my neurologist when they read the report at my next appointment. On January 10, 2020 — nearly six months after my birthday — my wife and I returned to the neurologist’s office. We were anxious to find out what the test had revealed. The doctor read us the test result, and I asked — once again — “Have you seen this before?” If so, I wanted to know what it meant. That was the first time we heard ALS mentioned. He said, “It is worrisome for ALS.” Honestly, my wife and I were shocked. I was also reminded that our lives are in GOD’s hands and that nothing comes into our lives by mistake. I know I wasn’t being punished. GOD doesn’t work that way. That day, I thought of a good friend and his wife, who had died from ALS. I remembered how she thanked GOD every day — for something, anything. She thanked him every day until the day she died from ALS. So as we took in the news, I prayed to GOD that he would help me to do the same.
I know I can do that with GOD’s help. As we talked to the neurologist, he explained that ALS is tricky to diagnose. He said it could take up to a year. The next step was getting MRI images from my head down to my tailbone. Here’s the thing: I don’t like small spaces, so the MRIs took a lot longer than they should have. I remember the first MRI appointment. When I walked into the room, the technician explained what the doctor had ordered. They wanted three MRIs of my spine. “How long will I be stuck in that tube?” I asked. “About two hours and 30 minutes,” he said. I told him there was only one way that I could do it: they’d need to give me something that would make me relax. But the technician said that wasn’t an option without pre-approval. So I left and made an appointment for a different time (with medication to relax me). In addition to needing several MRIs, I had blood tests and a spinal tap in January and February.
I had many appointments, but there was often a week or two of waiting between them. The ALS Diagnosis During that time, our second daughter, a nurse, encouraged us to push for answers sooner. She said a place like Mayo Clinic could diagnose in just one week. When my wife called the Mayo Clinics around the country, she started realizing that most of them book six months out. Finally, she got a different answer at Mayo Clinic in Phoenix, Arizona. They could get me in as soon as March 6, 2020.
The following days would be full of another nerve test, a breathing test, and an MRI of my head. The follow-up would be on March 10. At our follow-up on March 10, the neurologist confirmed that I had ALS. She took time to talk to us about what to expect in the future and who to connect with back home in North Carolina. We flew back to our home in NC. The Mayo Clinic neurologist told us we were fortunate to live near an ALS specialist at Duke University. But when we called, they told us his first available appointment was in October. Fortunately, I was also contacted by a good friend who works with veterans. He walked us through the paperwork for the VA. I never realized how those four and a half years in the Air Force in my twenties would come back to help me in the future.
To be honest, I’d heard many complaints about the VA over the years. Our experience has been nothing but good since being accepted into the VA system. It’s nothing short of a blessing. As we got set up with the VA medical system, we found out about a VA ALS clinic in Indianapolis. I got their contact information and was very encouraged by their response. I had an appointment the following week. I was told they always leave room in their schedule for new people. Again, this was a great encouragement and a big blessing.
When I count my blessings, I begin with the wonderful wife GOD blessed me with 35 years ago. She is wonderful, always looking for ways to help. Along with that blessing are our three children and the ways they have stepped up in different ways to help. Lest I forget, I’m also thankful for their significant others. At the time of this writing, our oldest, Leandra, is scheduled to get married to Cameron in April. Our second child, Kelsey, is married. She and her husband Tyler have given us two grandchildren, Theodore and Henry. Two special little boys. Last and certainly not least: our son Ethan and his girlfriend, Claire. They have been together for two and a half years. I feel I am a very blessed man. Since my diagnosis, we’ve tried to make the most of our time and we have taken advantage of living under the same roof. The family spent a week together in North Carolina in March, just as the pandemic reached the U.S. Three, I was able to sit down with Leandra and make a video recording while she interviewed me about my life. This is something they’ll give my grandchildren after I graduate to heaven.
In August, we spent a week in a vacation house in Florida. In addition to that, one of my Christmas gifts this year was a StoryWorth subscription. It’s a great idea and a chance for my oldest daughter and me to spend some more time together. She is a very gifted writer. I’m very grateful for my family. They are a tremendous blessing to me. Life now… I know the road ahead isn’t easy. When I was first diagnosed, I walked with a cane. Shortly after being accepted with the VA, they ordered a foot brace for my left foot. That allowed me to leave the cane for a while. Then things got worse. I picked up the cane again, got a brace for my second foot, then “graduated” to a walker. These days I can only do short distances around the apartment with the walker. Anything more than that wears me out. It’s difficult to walk, even with the walker to help. The VA has provided me with a wheelchair, and I’m using it more and more. I try to remain positive. I remember the things I’m still able to do and enjoy, and I give thanks. In the end, I think this is better for me than spending time and energy focusing on what I can no longer do.