Going Bulbar

Some time ago I described ALS progression as a series of small changes that were almost unnoticable until they gained enough collective impact to be visible. Then things appear to stablize, even though they aren't really stable, until the small changes once again aggregate into something you can feel or see.

This is what happened with my legs. I have lower limb onset ALS, one of the slower moving types of ALS. Because of that the loss of my legs took a long time, almost two full years. It started with stumbling and clumsiness. Then one day it got bad enough that I needed  a cane to walk. From walking to needing a walker came next, rapidly followed by the need for a wheelchair full-time. All of this progressed slowly, inexorably, and completely. There was no stable period, no remission, just periods when the changes were minute enough so as not to be seen until there was something visible.

Of late, perhaps over the last couple of months, I have noticed that I have been having trouble with word formation, particularly with complex words requiring the full use of my tongue. The best example of this is the word "ability". I have been having increasing trouble with enunciation of this and similar words. In addition I have noticed the increasing need to clear my throat along with a sense of weakness in my soft palate. All of these things have been minor and could easily be attributed to other things, such as a persistent, low grade infection or virus.

Today things became a bit clearer. This morning, when I awoke, I found that I could no longer form a circle with my tongue inside my mouth, something I have always been able to do up until now. In addition the left side of my tongue feels heavy, out of sync with the right side. It feels fat.

After a while, when I had gotten out of bed and gotten mobile, I noticed that I seemed to have better control of the muscles in my tongue. I can make a tongue tube now. The feeling of heaviness, of clumsiness, is still there. It would appear that focus and energy will still help to some degree.

This is how it was with my legs. It started with intermittent issues, a feeling of clumsiness, a feeling of unexplained weakness. Then it got progressively worse. So I suspect this is how it will work with my tongue and throat too. These are the symptoms of Bulbar ALS. Almost all ALS patients get this. I am not unique nor is this particularly surprising. If I don't have it now, I will eventually.

I am going to the ALS clinic on Wednesday. I suspect they will confirm something I am fairly sure I already know. Bulbar ALS has a faster progression however it is more erratic and in some cases it can slow and even stop. It affects everyone differently even though it ultimately finishes what it starts. There is no way to predict the speed or order of symptoms, just the eventual outcome. I will lose my ability to speak, eat, swallow and breathe. The timing and order are uncertain but the events will occur.