My PALS had bulbar onset, symptoms started 5 years ago. He said he felt like he sounded drunk when he spoke . As the year progressed others agreed. In the spring we started going to a voice clinic for botox injections into his vocal chords. There was no resolve. We found ourselves at Mayo clinic by late summer and their summation was, “ potentially ALS”, we returned to Mayo 6 months later and the diagnoses was confirmed, and we weren’t surprised.
Quarterly visits began at our state’s ALS clinic, he retired from his work, and I discovered the ALS forum. I was in denial, all of this horror wasn’t possibly going to happen to my 260lb PALS?!!? He began using a Trilogy at night time only and was sustaining well. His voice continued to decline and his grip was weakening but overall he sustained. We traveled and he went on trips with our boys, all young adults, and his family and his friends. The last time he spoke my name properly was 2015, the last time he spoke at all escapes my memory. Thankfully, he was very fluent with a text/speech app, and if I heard the automated voice today I am sure I would think it was him.
By the fall of 2017 he had lost 70 pounds and was really struggling to eat or drink much of anything. We opted for a g-tube and the procedure was successful although from that day forward he would wear his trilogy 24/7, the anesthesia really took something from him… or maybe, in the way ALS creeps along, it was the day that was going to happen anyway. He leveled for the better part of 2018, but his decline in all areas was becoming more evident.
The last time he left the house was in November of 2018 and we started hospice. He had wanted a vent, but with his decline coming swifter he changed his mine. He didn’t’ think he would become so dependent on others for his basic needs so quickly. Selfishly, I was thankful he changed his mind about the vent. I was at the end of my rope and a kind of exhausted that was worse than raising babies. In December he fell two or three times and was non ambulatory except for to and from bed and bathroom, all with assistance. All along we didn’t want him to go to the hospital, I vowed to keep him home. We had private care coming in to the house any time I was working and he was rarely left alone.
In late January he was doing as well as we could expect and then he swiped on his phone app, “call Hospice I am having trouble breathing”, he had pneumonia. Our children and family and friends sat vigil with him for 4 days, and he passed. As you all have commented—Wow, that really happened?- I was 23 when we got married, now I am 55. I know you get it, I know you understand. Peace to all of yours and thanks for helping me make it to next . Katie
