Hi everyone. I've never posted on a forum before. It's really difficult for me to open up and be honest about all the struggles and how I'm feeling. It's especially hard because of the guilt I have for feeling this way. My dad was diagnosed (bulbar ALS) October 2011 (less than 3 years ago) and he is the most optimistic, strongest person I'll ever know. It took about a year to lose both his ability to speak and walk. Today he lives in a LTAC hospital on a trach/vent and we communicate with only eye blinks and an alphabet board.
I'm not sure what I'm seeking here. I don't even have words to express the pain I feel inside every day. I think back to the hard times only a year ago where at least I could help him into his chair, onto the toilet, outside on occasion, and even patiently wait for him to spell out sentences without much assistance. Who knew id miss those days...
I just wish I knew why. What a horrible horrible disease. No one should have to go through this. I'm humbled by the stories I read here and my heart is with everyone affected by this disease. I hope one day God, The Universe... Something... Will help me understand why.
I'm not sure what I'm seeking here. I don't even have words to express the pain I feel inside every day. I think back to the hard times only a year ago where at least I could help him into his chair, onto the toilet, outside on occasion, and even patiently wait for him to spell out sentences without much assistance. Who knew id miss those days...
I just wish I knew why. What a horrible horrible disease. No one should have to go through this. I'm humbled by the stories I read here and my heart is with everyone affected by this disease. I hope one day God, The Universe... Something... Will help me understand why.