PatientsLikeMe ™

I have larned that life isn't fair and it never will be. It is what you make of it. ALS is terrible. There are not words to describe how terrible it is. I am not the person I use to be, that is for sure. I use to be a very happy person without a care in the world. My life was forever changed on February 14, 2005. (Valentine's Day) My Daddy was diagnosed with ALS. I knew what ALS was, but it was just a distant memory for me. My Dad's Uncle had been one of it's victims, but I was too young to really understand it. It was always a fear of ours for so long, and after hearing so many doctors tell us that it wasn't ALS we were convinced it wasn't. Well, it was. My father's ALS was bulbar onset, he was already having speech problems, swollowing problems and many other problems before he was diagnosed. His progression seemed like it wasn't bad at first. Things soon spiraled out of control. He was on Hospice less than a year after diagnosis. He was unable to communicate except for hand signals using his right hand. His left arm was completly atrophied. He had NO muscles in it. His back was hollow on that side and his bones just protruded everywhere. We had to communicate for him. He was unable to use the communication machine that we acquired because he had to type the things he wanted to say and he couldn't type. My Daddy was up walking around (as well as he could) the day before he was put in the hospital the last time. He was suffering with severe pain and Hospice was trying to get it under control using morphine. The morphine was making him itch and we had only given it to him via his peg tube 2 times and both times he had the same reaction. We called our hospice nurse and she came out and told us that it was a normal reaction, and she had us double his dose. That was all it took! He had a SEVERE reaction to it. He just moaned and itched (unable to scratch) for an hour or two. We were told to give him ABHR to try and counter act the reaction.  He was allergic to the ABHR too, we found out the hard way again. He went in to a dystonic state and he had to be hospitalized. He developed pneumonia after aspirating some mucus (couldn't clear his airways because of the reaction, cause his jaws to lock). He never woke up again. He died 6 days after he was hospitalized.  It was really hard for us at the hospital because the doctors just weren't familiar with ALS. No one could give us answers or help us. The things that my Daddy went through were just UNREAL. I have a hard time understand why things like this happen, but I guess we all do. It is really hard for everyone involved! I love and I miss my Daddy more ever. I want to help other caregivers and patients, because i have been through this too, and I understand. I may have not had the disease, but I suffered  with my Dad. I felt his pain, just in a different way.
My dad is now in a better place! He can eat and talk and move his arms! HE IS MY ANGEL!! He is my INSPIRATION.