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  1. Barbie

    What should I be expecting to happen now?

    jules don't waste time with guilt. Sounds like you have been doing everything great up to now... there is a point where no matter what you do, bipap doesn't help enough. as far as laying back, He is doing what he thinks feels best to him. how about you suggest he use the bipap when he is...
  2. Barbie

    Ice Cream

    my husband loved Dove Chocolates (dark only) and chocolate ice cream. he ate both daily until the day he died. I was happy to provide it -- biggest draw back for Cals is joining in on the fun! we gain when they
  3. Barbie

    New CALS

    you are a Cals, and it will be hard as you can see from all the posts you have read. but you will have true and real support here--everyone will love and accept you immediately because we are all warriors together facing the ALS monster!! reach out, ask questions, try not to worry to much...
  4. Barbie

    Two months yesterday

    Dear Amy, honey you are going thru so much right now--please be kind to yourself and give yourself a break. What you lived thru is much more than most will face. the flashbacks of him sick and dying are hard to erase, and part of the PTSD that you(and all cals) suffer. first off, 2 months...
  5. Barbie

    Weight Question

    He is in charge and you cant make him eat--and eating probably is very difficult for him. my husband refused a peg and wasted away as well. I think it is horribly difficult for the family to deal with. What you can do is try to pump up the calorie intake in everyway possible. be sure that you...
  6. Barbie

    Terrified I won't see my son grow up

    Pierre, yes, you could have ALS but you could also have many other illnesses. don't waste your time playing doctor by diagnosing yourself on the internet--nothing good will ever come of it and you will only feel more and more anxious. make you appointments and go back to living until you get an...
  7. Barbie

    Oh the Memories

    All the firsts were so hard--I am so glad to be past them. so now I am starting year 3...that is depressing just to say. I am going to make it...of that I have no doubt. overall and in general I am happy and even grateful for the life I have had including getting to care for Lonny. I...
  8. Barbie

    Oh the Memories

    gosh, I see the screen names here and so many memories come flooding back! you guys are my special friends and hold a dear place in my heart. if I was a praying person, you would all be in my prayers every night. Tillie I agree I would bet almost all Cals have PTSD. I surely think I do...
  9. Barbie

    Oh the Memories

    whenever I feel sad, I come here to this place with all of you. it is like my safe spot--I know how all of you feel and you know how I feel...some of you know me, and so many new people here have no idea who I am. but I know you love me and understand me just coz... This is my sad month...I...
  10. Barbie

    Knowing that I missed it and living with it

    I was not there when my Lonny died either...I was mad, and so disappointed in life for taking that away from me. I had envisioned myself holding his hand and comforting him and letting him know it was ok to leave. I knew time was short for him, but circumstances arose and I had to leave the...