My Dad was diagnosed with ALS in July. Looking back, he had been saying to us for several months that it was hard to project his voice. I didn't really notice anything though, I suspect his voice gradually weakened over several months before. He complained that it was hard to raise his arms above his head when he was standing, but could when sitting. My red alert moment was when I saw him trying to lift my 6 year old nephew and couldn't. Followed by the awful day when, after riding horses since he was a toddler, he wasn't able to get himself up on his horse. My active, strong, horse riding, barn building, bale throwing dad. He had been losing weight and just not feeling good. Anyway, his primary dr didn't have a clue, but sent him to a rheumatologist, who suspected ALS and got him ASAP to neurology.
And life as we knew it changed.
His fatigue was immediate and overwhelming. His arms have gotten weaker, has to use one to try to help eat with the other arm. Legs are wasting and now having tons of fasciculations. He failed a sleep study and has started bipap. Needs help with most ADL's. Appetite has been poor, but he is trying. Over the last few days, his respiratory status seems to have worsened. He is feeling short of breath at rest, and is visibly winded. He is still able to talk, but voice is so weak. He has started to choke over the last few days. 40 lb weight loss since July.
It seems like Dad's ALS is aggressive. I am a nurse, as is my mom. But we don't have experience with ALS. His neurologist tells us that it is early, and that she is hopeful. I don't believe that. In 25 years of nursing, I remember only one ALS patient. And I remember thinking with him, what a devastating illness and that it seemed so unfair. I hate to ask my questions at his neurologist's when he is there. Questions like, What usually happens at the end? I assume respiratory failure. Is it awful? How comfortable can he be? If he refuses a PEG tube, then what? The thought of him starving horrifies me, yet they are his decisions to make. I will support his decisions. Thank you for listening and for any advice