Neurologists use a rating scale to determine ALS disease progression.

The progression and severity of ALS is rated by doctors on the ALS Functional Rating Scale, which has been revised and is referred to as ALSFRS.

Since ALS was on my future radar for more than a year I walked through a number of rating scales to see how far my symptoms had progressed. One is a revised version of ALSFRS.

ALSFRS-R includes 12 questions that can have a score of 0 to 4. A score of 0 on a question would indicate no function while a score of 4 would indicate full function. This scale has been useful for doctors in diagnosing patients, measuring disease progression…

I did not find the scale useful until recently.

Why not?

The ALSFRS-R scale has some limitations though since it is not useful to compare scores of people who present with different onset. In ALS the main type of onset is bulbar, followed by limb-onset; which describes the region of motor neurons first affected. Individuals may also present with respiratory onset, but this occurs very rarely.

Respiratory onset.

Many other symptoms have begun to appear, however, breathing is the most prominent, obvious, and debilitating symptom.

Thanks to very weak core muscles, especially breathing and back, I cannot walk.

Yet, I can speak and type.

Go figure.