From Uncertainty to Goodbye-The Reality of ALS
In Spanish reads “Miguel, first day of work & last day of work” with the dates shown
My dad was fired by his job the day before I graduated from community college in May of 2023 due to being slower than the others at the time. My dad was considered by others one of the most hardworking guys at his job. He was devastated to be let go as he truly saw this job as a job that he will most likely retire from. We were told by his former workplace that he may have had a stroke but it was never reported to us until my dad said something about it. To see him being let go from his due to weakness, this is when we began questioning if something was wrong.
In Spanish reads “Dear Miguel Soto, Your new appointment is with”
After waiting almost exactly six months after being let go, he was finally seen by a primary care doctor. He expressed his concerns and even asked her why is he weak when he shouldn’t be weak. Her main concern was possibly his age. My dad had just turned 51 a few days ago. So we began the long restless journey of countless referrals, doctors, therapies and tests.
Out of every doctor that we have visited Dr. Levin was the worst. Not only was he consistently late to his appointments (the worst was being three hours late), but refused to listen to my dad’s concerns. In October of 2025, He referred us to UCSF. I do not know if this was because he was annoyed of us or he truly wanted to help but we still went.
After being seen by two different neuromedicine doctors at UCSF in November of 2025, we finally got an answer. One of the answers that no one ever wants to hear that a loved one has. He was officially diagnosed with ALS. It was never a stroke. Thus, we began a new journey.
ALS is a progressive disease in which a person’s brain loses connection with the muscles, slowly taking away their ability to walk, talk, eat and eventually breathe. With this new journey, we began a new chapter in life. The most difficult of it all was seeing him getting weaker and weaker. On March 20th, 2026, my dad lost his battle with ALS.
April 1st was supposed to be an appointment that would help him have the nutrients that he needs in order to have more time in life. This was the closest available date at the time due to their policy of ALS patients only to be scheduled either the first or third wednesday of the month. To think that we were so close to the date but so far.
I encourage everyone to read and research about ALS because it is not talked about that much in today’s time.
This image was taken in January of 2026. Two months after the diagnosis and two months before his passing.
The same couch as in the previous photo but with a phone and a pillow in the middle waiting for its owner to come back to use it but not knowing that they are gone.
