I have. It’s one of the minor things that those with ALS consider. I ponder this muscle because I feel it getting more difficult to keep my eyes closed at night. You would not believe the crazy adventures this disease advocates. In this blog, I’m going to do my best to take you on a tour of ALS, and the lesser known effects of the worst-thing-I-can-imagine-to-happen-to-a-formerly-healthy-individual.(One word!)
In the beginning of May, Martin Richardson organized a screening of the movie Augie. The movie depicts the journey of Augie Nieto, the creator of Life Fitness and a man struggling with ALS. For those of you who attended, you were introduced to the obvious issues those who have this disease encounter daily. (For those who didn’t attend, I know where you all live.)
All kidding aside, the movie touches on some of the brutal truths of ALS. It’s difficult to touch on everything affected, but I will attempt to illustrate some of the major dramas that occur more than a few times.
The movie touched on a few things I’m very afraid of, such as the possible need for me to get a tracheostomy, and the process involved with major surgery. However, a critical axiom that emerged was ALS isn’t a personal diagnosis. My life is easy compared to my parents’ lives. Often the ones most affected by als are the families, and those closest to the diagnosed. On the flip side, it’s far too much for some, and you rarely/never hear from them, no matter how long you’ve been affiliated.
My ALS starts with the journey the disease has taken throughout my body. The first thing I noticed was how difficult it’d become to button up my shirts every morning. Then, my hands would curl up into a tight fist when I slept. The weakness traveled my arms, and into my tongue. I sounded drunk at all times. And for someone who liked to talk as much as I did, it made people question who I was as a human.
From my mouth it spread to the rest of my muscles slowly but surely. I noticed this mainly at the gym. It seemed like overnight I wasn’t able to lift as much as before, and on the treadmill, I felt I had something in my throat that made breathing a chore. Keep in mind that this happened gradually, and as obvious as it is now, it was equally difficult to connect the dots.
All of the strength I’ve had my whole life drained from my body…
The last phase of physical effects happened in Atlanta. As soon as I moved down there, I was running and almost fell on my face. I had never lost my balance on ice much less solid ground. Then it became harder to walk down the hill at the school I was attending. Then I developed a permanent limp. Then all of the strength I have had my whole life drained from my body.
Let me preface this next section by saying I know exactly when I started to have ALS. Sounds silly right? I was at a party, had a few beverages, some fighting broke out. It wasn’t real fighting, but someone jumped on my back and held my arms so when I fell, I drove my head into solid floor. Hard. By far the worst concussion I’ve had, and that’s quite the accomplishment. From then on, I never felt the same.
The thing the movie didn’t announce, and most observers (and scientists) don’t comprehend is the effect this disease has on the brain. My personality changed completely. This was partly because I was terrified of what was happening to me, partly because of what I would characterize as a change in brain chemistry.
One time when I was extremely upset, I lost the ability to walk for the first time…
I was unable to control my emotions. I would laugh uncontrollably when I was mad or uncomfortable. I would cry at times when that wasn’t normal. I remember being completely worried about one of my midterm tests, and worked myself up so much that I was absolutely pouring sweat out of every pore on my body. I would flip out on loved ones, go completely mute occasionally, I couldn’t sleep, and one time when I was extremely upset, I lost the ability to walk for the first time.
I have learned to control many of the mental issues I was having (read my last blog if you haven’t already.) This has mitigated, but not halted the decline of my physical symptoms. For the first time I was able to actually feel a group of muscles sputter, and stop working.
The muscles that allow for my foot and toes to flex towards my shin have stopped working. I’m unable to do that action any longer. This makes walking and everything associated with me going places on my feet difficult, but not impossible. Like I have done since the onset, I find a way to get where I want.
Another thing I’d like to highlight is the difficulty in keeping with the changes that my body is constantly going through. I have been confined to an area the size of a locker room shower for a year now. For those who played with me, the shower was where I did some of my best work. (For those who didn’t have that pleasure, take that however you wish.)
My confinement is half because it takes FOREVER to get anything that goes through the government done, half because I am super good at living in this space. Superb even. Everything takes me an immense amount of concentration. Hence, I live in a narrow, well-defined comfort zone. I have water to my left so I can lean over, in a specific way, and drink. I have a nice groove carved in my rocking chair. Although the muscles in my neck pull it to the left, I use the rocking action to position my head to the right so I can chew and swallow.
In my bed I know exactly where the pillow needs to be, as well as how to position my head on the pillow so I can breathe comfortably. I know the correct procedures for turning from side to side on my own (I am the WORST person to share a bed with.) I have figured out where the water needs to be, and I have my weed pen right there if sleep eludes me. I have a system for everything in my space, and in the razor thin margin in which I live, that’s crucial.
Occasionally, I experience a phase where I cannot stop my legs from spasming and straightening. I used to be able to control it, but because of my declining strength, it’s much more difficult. Everything I do brings this feeling to the forefront, and I can’t explain it for the life of me except to note that it often happens when I try new meds. The only cure is to get to bed by whatever means, and try to get my legs comfortable enough to end the spasms. If that fails, sedation. Now is one of those times. Thusly, this blog has taken longer than anticipated.
This is a small slice of my life, and my ALS. I appreciate the time you’ve taken to read this. I have done precisely zero of this to gain sympathy. People often consider it to be rude to ask about the affliction of another, while secretly desiring details. I think the more open I am, the better the help I can get, and maybe someone will be able to think of something I never have! However there is one thing I cannot stress enough: If you know someone with ALS, DO NOT feel sorry for them. They are more often than not, the strongest person you know. What you can do is give their caretakers a hug! Alright, alright, I can talk about this forever, if you have questions, hit up the comments.
Until next time!!!