Even though I regularly read this website I have never contributed anything until now. I'm not sure why...maybe it was denial, maybe fear. Well, now, here it goes....
My father was diagnosed with ALS in January of this year (although we think he has had it much longer then that). Since that our family has been through an unbearable amount of suffering and distress. My Dad is the heart of my family and this disease has robbed us of so much. Dad, unlike many others, still has full use of his arms and legs (even though he has gotten much weaker) but is struggling to breath. The doctors tell us that the muscle around his lungs is the most significantly affected. He recently was hospitalized to fit for a bipap. So now he is home and uses the bipap regularly while sleeping and other times during the day when he feels he needs it. His doctor asked me last week to discuss other options with Dad that may help him once the bipap becomes less effective. I tried to have the talk with Dad the other night but it was so hard on him and he broke down and started to cry. He keeps saying "I don't want to suffer". But as I can see, he is already suffering.
I don't really have any questions or comments to help anyone else. I guess I just wanted to tell a part of my story. Each day I think that things can't get any harder, and then I wake up the next day.....
My father was diagnosed with ALS in January of this year (although we think he has had it much longer then that). Since that our family has been through an unbearable amount of suffering and distress. My Dad is the heart of my family and this disease has robbed us of so much. Dad, unlike many others, still has full use of his arms and legs (even though he has gotten much weaker) but is struggling to breath. The doctors tell us that the muscle around his lungs is the most significantly affected. He recently was hospitalized to fit for a bipap. So now he is home and uses the bipap regularly while sleeping and other times during the day when he feels he needs it. His doctor asked me last week to discuss other options with Dad that may help him once the bipap becomes less effective. I tried to have the talk with Dad the other night but it was so hard on him and he broke down and started to cry. He keeps saying "I don't want to suffer". But as I can see, he is already suffering.
I don't really have any questions or comments to help anyone else. I guess I just wanted to tell a part of my story. Each day I think that things can't get any harder, and then I wake up the next day.....