In the beginning…

November of 2022 – December 2023

Hello and welcome to my first ever blog post. My name is Greg “Coach” Neal and I’ve been diagnosed with ALS, Lou Gehrig’s disease. Writing a blog, about me or ALS, is nothing I ever had any desire to do. It’s being created because over the last year I’ve come to realize there are a lot of people out there who have ALS, are caring for someone with ALS, or are related to someone with ALS, and they are drowning with the stress of the disease and being offered no hope. The goal of this blog is to bring a little joy, occasional smile, and a glimmer of hope into your lives.

Getting to my diagnosis was no easy or short journey. In November of 2022, I began noticing an occasional loss of strength in my left hand. I would wake up and sometimes not even be able to pick up my cell phone. This prompted the usual Googling and an appointment with my primary doctor. As anticipated, during the visit he asked me about my symptoms and what I thought could be the cause. My original thought was some form of spinal trauma from all the years of football and abusing my body. As a joke, I said I hoped it wasn’t ALS. He smiled and said he saw absolutely no signs of that and referred me to my first neurologist.

At my first neurologist visit, they did all sorts of physical tests that resulted in no answers. Thus began the MRI parade. My first MRI was of my neck. A follow-up visit with this doctor gave no explanation for my symptoms and I was referred to a more senior neurologist.

That visit began as the first with lots of questions and physical test….and more MRIs. This time I was scheduled for a neck and brain MRI as the doctor thought I may have had a minor stroke. The second visit here revealed no more answers, no signs of stroke or brain trauma, and an order for yet another MRI of my thoracic spine. On the third trip to this doctor, I was referred to a neurosurgeon. So off I went.

At this point, after all the doctor visits, things begin to blur together. During this appointment, the doctor reviewed all of my previous MRIs and told me he believed he saw trauma in my neck that was probably caused by all my years of hitting people with my head in football (that’s the way we were taught to do it in the 70’s). He recommended a surgery that would put two plates in my neck to relieve the pressure on the nerves going to my left arm. This operation is called an “ACDF” procedure (anterior cervical discectomy and fusion) and it’s not fun and has a long recovery. (I don’t recommend Googling this surgery as I did before I went in.) I agreed and scheduled the surgery for May of 2023.

At this time, I was a teaching assistant at one of our local middle schools. I had and still do have a very close relationship with my students, and this was going to be my last year. The surgery and subsequent recovery brought my third retirement to an abrupt end. (For most of my career I owned bars and restaurants in Chicago but that’s a story for future blogs.)

I was told that the surgery was a success by one of the surgical team members who was quite excited about what she’d found and repaired. I headed into recovery optimistic. Weeks of OT and PT followed but there was no improvement in my hand strength. Follow-up appointments with the surgeon left me frustrated and I was eventually referred to another neurologist.

We’re now a year into this adventure, November of 2023, and nothing has changed except the large scar on my neck. My wife Amy and I set out to meet with the next neurologist and I must admit that I’m very impressed with how attentive and thorough she was. After many questions and the usual physical tests, she stripped me down and spent a considerable amount of time just observing my entire body. (I was hoping she was going to say what great shape I was in for 62.) When she was done was the first time we had heard the word fasciculations. That word was soon followed by the statement, “I think you have a motor neuron disease, the most common of which is ALS.”

I can take a pretty good punch but seeing the look on Amy’s face just about floored me. It’s a look I’ll never forget and one I hope never to see again. Then and there, this stopped being about me and started becoming about her and us. A litany of tests was scheduled and an immediate referral to the ALS clinic was given. As we left the hospital, I’ll never forget the walk to the truck. It was a clear, cool day with wispy clouds pasted on a beautiful blue sky. The air was so much more refreshing than when we’d walked in. The clouds whiter, the sky bluer. A calmness had settled in me but the pain I could see filling Amy… I knew this would rock our worlds. I became determined to show her that we weren’t going to let worrying about tomorrow ruin what we have today.

Enough about me for today. Each time I post I’ll share music, videos, prayers…. that have moved me in some way, usually with a laugh or insightful thought. After they’ve been posted you’ll be able to find them on the website as well. To end this episode here is the video of Jimmy Valvano at the 1993 ESPY’s and a song by Rhett Walker that will hopefully make you smile.

Please feel free to reach out to me with your thoughts, questions, and prayer requests.

Take care and God bless.

Coach