This is my experience and how my body feels with ALS, and I state it this way because it can feel different for other people and from what I’ve been told by the experts, every person experiences this disease a little bit differently.
The most significant physiological change I’ve noticed over the past year is increased weakness in major muscle groups. So when I say weakness I mean the inability to move certain muscles on command. As an example, in my left hand I cannot make a full fist where my fingers touch the palm of my hand because the muscles are too weak to pull my fingers all the way in. This weakness gets more pronounced over time but very gradually. At the beginning of 2024 I had much more strength and mobility in my core muscles meaning my stomach, back and sense of balance. The feeling of weakness and the effects of different muscle groups for me has crept from my extremities toward the core of my body and once reaching the core it seems to progress down from my shoulders and up from my waist meeting in my chest. The weakness affects everything that you do with individual muscle sets and each muscle group can be stronger or weaker than its neighbor. For example my shoulders have been experiencing more and more weakness whereas my biceps and triceps of my upper arm are not losing strength at the same rate.
Muscle twitching is a constant and very noticeable feature of ALS. If you have ever played sports you would recognize these muscle twitches that are involuntary and usually mean that you are just fatigued in that specific muscle. In my case however, I get muscle twitches all over my body several times per minute. Usually the muscle twitches are in small sets of one to five twitches in a single muscle followed by twitches in a completely different muscle group anywhere else on my body. In some cases though I have muscle twitches that last for multiple hours or even days where the muscle is just pulsing every few seconds. This twitching is the muscle’s method of sending a signal to the brain via the nervous system to say ”hey brain there is something not right with the communication down here send better messages”. The muscle continues to send these pulses and signals to the brain until the brain no longer responds and that’s when the motor neurons have officially died. At this point the muscle starts to decay or atrophy shrinking the muscle mass because it can’t get a signal from the brain to function correctly anymore. An exercise that I have been doing over the past few months is to mentally note each muscle spasm as it happens and count the number of twitches in a 15 minute. At the beginning of the year I was twitching about 25 times in a 15 minute period and now I am at about 100 muscle twitches in a 15 minute period.
As ALS progresses it starts to affect the core functions of the body including breathing. In the past 12 months I have lost about 20% of my pre diagnosed lung capacity. As muscles in my chest are more and more affected my ability to take a deep breath or exhale forcefully will continue to decrease. Right now that feels like you are breathing in a low oxygen environment where you’re having to suck in air more forcefully and push it out more forcefully making your body feel even more tired than usual. Simple tasks like going up a flight of stairs or walking more than a few yards is becoming a challenge, both because of muscle weakening and loss of lung capacity.
So as of December 2024 this is my ALS experience. Currently I am still able to stand and walk a few steps although my balance is not reliable. I am still able to do most things with my right hand and some limited things that do not require strength with my left. My mobility is significantly reduced and I use some form of wheeled mechanical device to move around the house and especially outside of the home. In January of 2025 I will be fitted for and receive an electric wheelchair so that I can start to get used to that form of moving around.
Every three to six months I’ll update my condition and how I’m feeling.
