Another Clinic Day

I am tired this morning. Yesterday was ALS Clinic day and that wears me out. In addition yesterday was the first game of the Stanley Cup Playoff Series, a game between Boston and Chicago which went into triple overtime. First there was 60 minutes of regular time, then another 55 minutes of overtime before the Chicago Blackhawks finally brought the matter to a close. I suspect people are here more for Clinic day than the Boston/Chicago game results.

This clinic day was essentially the same as previous clinic days. There were visits from the neurology team, visits from the nutritionists and respirologist and physiotherapists and psychologist and lots of others. The whole session took from 12:30 PM until 5:00 PM, making for a very long afternoon. The end result was highly predicable.

Scores count, in hockey and ALS. The neurologist rated my ALS score at 34 while I had rated it at a 30. You might think this is good; it is neither good nor bad. When I was diagnosed the neurologist scored me at a 42 while I scored me at a 38. Both of us have registered an 8 point decline in my score over the last 7 months. We are hoping this slows down. Even with that hope we know for a fact that this disease will spread, and that spreading has begun.

We confirmed that ALS is moving into my Bulbar regions although it is very early days at this point. This means it is going after my tongue, throat and possibly my neck muscles. There are no early signs of activity in my neck muscles. The small loss of control on the left side of my tongue and the ongoing clearing of my throat are both indicators. I am also experiencing occasional pharyngeal muscle spasms, another Bulbar symptom. While the changes are sufficiently minute as to be unnoticed from the outside, except the for the throat clearing, these symptoms are nonetheless real and progressive.

We also confirmed that I am losing lung capacity and diaphragm strength. My lung capacity is down to 86%. Normal is considered anywhere between 120% and 80%, so I am in no real danger from lack of breathing strength. However considering I probably started at the 120% area, this is a substantial loss of volume. The inability to get sufficient air and the inability to expel moisture from my lungs is an indicator of how I will ultimately die from this disease. Pneumonia.

On the plus side my upper body continues to remain strong. My arms are stronger than most others so normal for others is somewhat less than my strength. We tested my hands, for example, and my grip strength beat the record for all other ALS patients and most of the clinic staff as well. So the clumsiness I am experiencing is more likely just the general exhaustion that goes with this disease.

The neurologist actually suggested that it was possible that my arms would never be affected. I might be able to type this blog right up until the day I get that final pneumonia.