Hello, I am a brand new member, this is my first post. I am taking care of my high school sweetheart. He was diagnosed 3/08 & was basically sent home to die. I moved out 9/08, he was on a cane then w/slurred speech. He progressed quickly. He was in a power w/c by 1/09, Now he's completely paralyzed, relies solely on a blue tooth device to speak to me.He has been told, due to his decreased lung capacity test, that he has less than 6 month to live for a year and 1/2 now. He has an 8 yr old son that is being kept from him, so we have legal battle to deal with also,I think that's what keeps him going. He is peg tube fed, he has had the black feet for a long time, but we do excercises on him.He chokes and spits up all the time,constantly have to suction,but he refuses to use bipap. He has a very positive attitude though. We have had fun times & sad times.But I'm always looking when I walk in the room to see if he's still breathing. He's still very alert, he stays in his w/c, he hasnt slept in the bed in a yr & 1/2.He emails his friends all the time, he works on ancestry.com & a digital picture album for his son. With all this said, I'm always wondering if today is the day.
