Mind over Muscle
I knew that the time would come!
Although Motor Neuron Disease started in my left thigh in 2014 and slowly progressed to both my lower limbs by 2017, I knew as early as 2016 before my official diagnosis, that there was some upper body involvement in terms of tremor and fasciculations. Fast forward to Oct. 2019 and I can now say with some certainty that my hands and arms are becoming compromised.
This development hit me pretty hard since I had hoped, perhaps somewhat irrationally, that my upper limbs would be spared. My legs are all but useless. I cannot walk without support on both sides and even then, only for a few steps. Otherwise, until recently, I thought that my upper body was spared. Then, a few weeks ago now, I noticed my digits twitching when I asked them to perform fine motor controlled movements like pressing buttons on remotes. I also realised that when performing repetitive motions like peeling vegetables, my arms were starting to feel tired and heavy. That was the bad news.
The good news is that I still enjoy 95% function in my upper body. My wife still hands me jars to open that she cannot and, so far, I have succeeded in retaining my machismo! 😉 Again, today, a young healthy man of 22 years of age who is staying with us, was prevented from leaving the house because, try as he might, he could not rotate the front door handle.
“It is obviously jammed!” he opined.
I was tempted to believe him but after hobbling to the door with my walker, I turned the knob and opened the door without issue. It was a little stiff but definitely NOT stuck. This was the same young man, a Mexican exchange student, who I have been helping to perfect his English while he stays with us. He was very happy last night when I returned his latest work product virtually without correction.
All of the above is to show 2 things:
- For MOST pALS, disease progression does not stop! That is why almost all Motor Neuron Diseases are considered fatal. Progressive Muscular Atrophy (PMA), with which I am diagnosed, is no exception. It WILL eventually kill me.
- Muscles do not make the man! Mind over muscle, for me, does not mean that I can mentally force an atrophied muscle to magically spring back to life. Rather, it means that as long as I have my mental faculties, I can still live a useful and fulfilling life.
Rather than bemoan the abilities that I have lost, I am grateful for all the many and varied things that I did while I was still able. In addition, I mentally list all of those things that I can still do. I accept that I will gradually lose many more physical abilities but as long as my mind is sound, willing and able, I will soldier on….