Wednesday, 9 December 2015

Steady As She Goes

I'm exhausted. I could go to bed right now and sleep until tomorrow. And it's only 5:00 PM. I may be tired thanks to only sleeping 10 hours last night. More likely it's because I spent most of my day at the ALS clinic, getting measured, charted, weighed and test again. Four hours in the clinic is enough to exhaust anyone. Katherine says I am tired because I am "boring"; I think she means I am bored, but there is enough uncertainty within me to forestall the question.

An ALS clinic visit is much the same each time. I get my breathing tested; this time my lung volume capacity is down by 5% to 80%. This is the first major shift since diagnosis. My diaphragm performance is also down although it, along with my lung volume is still well in the normal range. Like everything else about me, I started strong so it takes a long time to get me to the weak range.

My upper body muscles, on the other hand, are showing definite signs of weakening. While still measured as a mild loss with a slow progression, the weakness is clearly there, especially in my shoulders and upper arms. The neurologist talks a good game but there is nothing which can hide the physical reality. Nonetheless, I'm still fairly strong, at least when compared to "normal". Even after becoming weaker, I am stronger than most.

The really odd part is where I am strong versus weak. ALS is going after my shoulders and upper arms first. For most, it attacks the fingers and hands first. There is a greater density of neurons there, so you would expect more failure there. On the other hand, pun intended, if you look at the shoulder muscles, there are fewer neurons to attack. In most patients, ALS goes for the big cluster first. In me, it's moving up, steadily, from my legs to my middle body to my shoulders. Eventually it will make its way to my hands, hopefully not in any great hurry.

That's one of the worst problems with ALS, it's individuality. It attacks each of us differently. The ALS experience is almost entirely subjective once you get past the major element, the loss of motor neurons. The where of it, the how of it, the why of it all change from person to person. That's why I've agreed to be part of a research study using cognitive testing and an MRI. They want to know how my ALS is working. They can compare that with others, and with me as I progress. It's won't provide a cure, but it will help with understanding. Then, perhaps one day...


  1. I admire your attitude about the research study Richard. At a time when you could be focused solely on yourself , you are not. Your blog has helped me better understand what my father is experiencing. Thank you again for your writing.

  2. Your blog is also helpful for me.. My boyfriend has PLS... So thank you... You posted your blog so late in the day, I actually got a little worried. Usually check in around 1130 every day.