A slow motion journey toward death is an interesting situation. Once the diagnosis was made— respiratory onset ALS— we started looking for ways to prolong life.
Easier said than done.
The first step was an alert VA pulmonologist who knew the problem and had an immediate solution. A non-invasive mechanical ventilator (NIV). Respiratory onset ALS is rare and varies dramatically from more typical ALS where limb muscles or speech and swallowing ability are affected.
Breathing and back muscles are affected first. The NIV does the breathing for me.
A few months later, as health continued to decline, an innovative physical therapist started me on an exercise regimen that concentrated not on affected muscles but the strongest muscles— legs and arms.
That enabled me to maintain mobility and strength. That improved oxygenation and helped the body dispose of carbon dioxide more efficiently.
Those tricks added many months to a life that was expected to end before 2021.
Dietary changes helped to keep weight from dropping and combined with the exercise routine, actually added weight.
Motor neurons kept dying, though, and that meant more difficulty with mobility, speech, swallowing, and even a favorite— typing.
Other tricks included a long list of objectives that ranged from making it to 2021, to Black Friday (Friday the 13th; yes, we celebrate), to April Fool’s Day, to another anniversary.
The last trick on the table is an old standby.
We have a recliner bed so I can use it for sleep, for physical therapy sessions, and, yes, typing. Unfortunately, I’m running out of tricks and the strength needed to reach another goal.