ALS is a slowly debilitating disease which wastes away muscles and nerves. For some, it’s all over in a couple of years. For others, ALS lingers for a decade. My version is respiratory onset so I don’t expect to live long but muscle and nerve degradation has begun to show up elsewhere; beyond breathing muscles.
That brings me to the 10-percent group; those with an ALS diagnosis that actually is a disease that merely mimics ALS. Many of the mimics are debilitating and deadly, too, but hope is what it is.
Unfortunately, in the world where we live today, life is not eternal.
The hope that the 10-percent rule might have benefit put us on a brief journey to the UCSF ALS group for a diagnosis follow-up. University of California, San Francisco. My consult there included a detailed examination of medical records, a lengthy consult, but a similar verdict.
We also had a lengthy consult with the VA in California which ended in a similar diagnosis.
The VA’s ALS clinic in California went into action to ensure proper assistance. While I had a BiPAP machine (think CPAP machine to help with obstructive sleep apnea, but smarter), breathing had become increasingly difficult; night and day.
The VA provided a special ventilator which ALS patients love. I know why.
The BiPAP machine helped with sleep, but the ventilator took over and adjusted to my breathing capabilities in a different way. It took a few days to get settings to an appropriate level, but sleep now is better than sleep with or without the BiPAP machine.
Thank you, VA.