F*CK FLAD!
What is FLAD and what do we have against it?
FLAD stands for "Fucking Life Altering Disease."
In July 2021, when B self-diagnosed that he had a neurological issue, quite possibly ALS, we named it PLAD - “Potentially Life Altering Disease.” After our 14-hour fun-fest in the ER, we moved on to LAD - it wasn’t just potential any more. Soon after that, we upgraded to FLAD - “Fucking …”. Sometimes, for emphasis, it’s Fucking FLAD.
We came up with the shorthand FLAD for a reason: this shit is hard! (And when B could still talk, he could say “FLAD” more easily than “motor-neuron disease” or “PLS”.)
We now know that the specific FLAD that B has is a motor neuron disease called ALS, for Amyotrophic Lateral Sclerosis, also known as "Lou Gehrig's disease."
Motor Neuron Diseases and ALS
Motor neuron diseases (MNDs) are a group of rare neurodegenerative disorders that selectively affect motor neurons, the cells that control voluntary muscles of the body. ALS is perhaps the most well-known of the motor neuron diseases. Most of these diseases worsen over time; while some, such as ALS, shorten one's life expectancy, others do not. Currently, there are no approved treatments for the majority of motor neuron disorders, and care is mostly symptomatic.
Initial onset of ALS varies widely. It often first manifests with symptoms in the extremities (difficulty walking, or loss of dexterity). In B's case, it started with “bulbar onset”, named after the bulbar region of the brain, which controls the muscles in the face and neck and processes like swallowing and speech. In most cases, it progresses to other regions of the body, eventually leading to near-total paralysis, and eventually death. The statistics for how fast that happens are not pretty.
In the future we'll have more information here about B's situation in particular and ALS in general. For now, the ALS Association has a lot more information on their website, als.org.