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  • Hi christy,
    Hope things are holding for you. I read your post and could be cellulitis.
    you should call the hospice nurses or your family doc to ask about it.
    I am so sorry that Dave is having all of these complications. remember
    to elevate all his extremities on pillows, this will help the swelling some.
    wish I had more ideas for you. take care and I will cont pray
    for us all.
    Hey ..no problem.. I too feel like they really should know more about ALS if they are going to care for our loved ones. I know though in my career
    that I only saw two pt with this diease and it wasnt until scottie
    got DX that I saw those. Everything about it stinks. I felt the same way
    when I sent him to hospice for respite care.
    It is hard to tell when the end will come. It is always an up and down path.
    I hope that scottie hangs in thru the holidays I just dont know if
    I could handle that. I hope you nite goes well.
    take of yourself and I will cont to pray for us all.
    Hi Christy,
    I am so sorry to hear that Dave is still having a rough time. I hope
    you are taking care of yourself too. I too hate this diease so much.
    I will say a prayer for you both. Nice that your sister could stay with
    you. I know how you feel. It is getting harder for me to watch scottie change everyday. I am amazed at your strentgh. Try not
    to blame yourself, there are no explanations for why things happen
    and to who. Just know that you will be blessed for the wonderful
    person you are. We too are struggling with the whys and how to
    deal with day to day. Scottie is having more issues with eating and
    incr in breathing difficulty. I just wish there was something to make
    him find some peace. well, take care.
    Hi Christy,
    Read your post, sorry you twko are still having a rough time. The UTI could be the problem for Dave especially if he isn't taking in enough fluids. Elavating his arm, legs will help with the swelling. I hope he is
    comfortable with incr meds.
    It has been suckie here too. I put scottie in hospice for respite stay
    and I have had to be there everyday. They dont know how to take care of him. First day they about killed him laid him flat without his bipap, he turned blue ect. Oh my gosh. It really is difficult to be a
    nurse and watch people who have no clue about taking of ALS pt.
    He should be coming home tomm. I did get some solid sleep for a
    few days. I so hate this diease and what it dokes to everyone.
    My son is having a very hard time with it. He is 16 and cant seem
    to grasp the why things happen. I am so frustrated with the system.
    Well just wanted to say hi. Hope things are looking up. I will keep
    you in prayers.
    Hey christy,
    I just wanted to ck in on you two. I know you were having a rough few weeks. I hope things are better since you are at home. I am sorry to hear that your husband has gotten worse. Things are changing here too. Scottie is having swallowing issues and incr in SOB. He is in denial still about it all. I did get hospice involved.
    Still meaner that a snake, but guess that keeps him going.
    I will say a prayer for you both. Take care.
    sheryl wife of scottie dx 06
    Hi Christy,

    Just wanted to take a moment to say hello and to say if you ever need someone to talk to, give me a yell. I read your post, and I am going thru those things right now with Bri.

    Just wanted to let you know I am here.
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