I am living with ALS and my wife is my caregiver. I was formally diagnosed January 23rd, 2023 when I was 68 years old. As with most people, it took at least a year and a half before I was diagnosed with ALS. During that time, I noticed a problem with my right arm and spent over a year having doctors guess what might be wrong. I underwent a neck surgery based on an incomplete EMG thinking that I had been cured. It was only from a knowledgeable physical therapist that I was alerted to a much more serious problem that needed comprehensive professional attention. Luckily my primary physician was able to connect me with one of his friends who was a well informed neurologist familiar with neurodegenerative diseases. He did a thorough 3-hour EMG during which he found that muscles throughout my body were fasciculating as well as tracing problems with my nervous system. He told me he believed I had ALS and recommended that I go to Stanford Research Hospital for a second opinion where another very knowledgeable neurologist concurred the ALS diagnosis.
I have been quite fortunate as it seems I have a slow progression. Medicare (along with an AARP supplemental) have taken care of all my expenses concerning necessary equipment (wheelchair, non-invasive ventilation, cough assist devices, etc). My wife and I had to self navigate/advocate until I joined the iamals.org family. They have continued educating and helping us as we learn to live with this devastating disease. As all the PALS I’ve had the pleasure of meeting, we agree that only the most beautiful and intelligent people seem to get ALS!