chrisroski
Active member
- Joined
- Apr 12, 2012
- Messages
- 93
- Reason
- PALS
- Diagnosis
- 01/2012
- Country
- US
- State
- Pa
- City
- Philadelphia
I was diagnosed in Jan. with PLS which I think is probably ALS, the reason I think that is because when I had the peg tube put in the diagnosis on the paper said Bulbar ALS. I can no longer talk, I do have an IPad which helps, but it takes so long to type things out, I just find it very frustrating. I can't eat at all now except for this formula. Everybody says be glad your alive, WHY? What the hell is there to look forward too, wheelchair, paraylsis, I don't want that. I am having a very hard time dealing with not being the person I use to be. Working everyday, running here and there, talking, eating, and that is all gone. I know I sound like a cry baby and I guess I am, but I can't help it. I do not know how people with this keep their spirits up, I truly don't, and to make matters worse, my husband and I have been separated for 14 yrs and I live with someone, who does nothing but listen to his talk shows on the radio, watch tv, smoke cigarettes, drink coffee and eat. He barely even knows I am here. The only time we go anywhere is when his check comes in a he wants to go the casino. Now I like to go too, but he always spends too much money and then there is no money left to do anything else. He won't walk a mall or a store, go just for a ride, anything. I don't know how much time I have & neither does he, he is 67 & has prostrate cancer, but is doing well with treatment, I'm 64 & they can't do anything for me. He wants me to take my 401k out (for gambling) and I wont' do it. I don't have all that much, I might need it. I think his mad goes it goes to my 2 girls & grandkids, well that's the way it is. When I worked I paid for everything, vacations of all kinds and when I moved in I re-did his whole house. I have my youngest daughter here, she had a drug problem and now lives with us, but I am considering moving out and living with my oldest daughter and 3 kids, but not sure I could take it all day. I can't afford my own place, so I am really stuck, but I am so bored, I want to do things b/4 I can't anymore. Sorry for all the negativity, but that is the way I feel.