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  • Monday April 16th my husband passed away after a long 3 and 1/2 year battle with this awful disease. He is now in a much better place and will not have to suffer any more. I miss him more than anything in this entire world and feel like I have just lost a huge piece of my life and my little boy is being so sweet and loving and everytime he looks at a picture of his daddy he say I miss my daddy it just breaks my heart.
    Hi Kelly - I am sorry that things are so difficult right now. I am glad that you have family and friends who are supporting you. We are in the same boat, unfortunately. Hospice has been a godsend and we continue to feel the love of our family surrounding us. Time is precious and in short supply it seems.
    Thinking of you and your family and praying for peace for all.
    Love and light
    I wish there was some way i could help, I'm sorry things are not going well for your husband. Your recent post really hit a nerve with me, my wife will be reaching her 1st year since diagnosis soon, and we also have small children. (7 years and 17 months). Patty still has alot of mobility, but needs "help" with most activities. I also appreciate your sleep issues, but as for right now, I basically cause my own issues by stressing about all the things we need to stress about.
    I'm not sure why I wrote to you, I know I can't help, or make you feel better, I guess I just wanted you to know your not alone in the young couple/young children dept. Good luck. Message if you need to vent outside of the public forum.

    Kelly, I don't have any magic words. All I have is sadness that I wish I could take all this away from you and your family. You have been and always will be in my prayers and thoughts.
    Hi Kelly, I am so sorry your husband is not doing well now. It is a scary journey for sure. How long has your husband been sick? mine was diagnosed 1/2007. We have 4 kids but they are all teens and young adults now. my youngest was only 10 when dad got sick. very hard. I can only imagine how tough it would be to have a 3 yr old. I have been active on the forum for about a year...it is kind of like therapy for me. I have learned so much from all the people here and I try to share what I know as well. I hope you stay active I think it will help you. there are a lot of really good posts about the very end that you could look through for guidance. Try posting a new thread with your message here--I think you will get alot of responses and help. Hang in there!!!
    To post on the forum, go to this link:


    Under the blue bar that goes across the page, there is a blue/grey short bar on the left of the page. Click on that and you can create a new thread.

    You will not be able to receive private messages until you post more on the forum. Not sure how many times, maybe 14 or 15. I suggest starting a new thread and then responding to posts on the thread. Not too quickly though, as that sends up a red flag sometimes.

    I am sorry you are dealing with this at all, but to have such a young child is heartbreaking. My son dealt with this from the time he was six. He is about to turn twelve.

    Give your family a BIG hug from me. Message me anytime.
    Part 2 of last message
    I had to write this in two parts because I knew I would write too many letters and I am not good at this forum thing, not knowing how to contact people etc. So my husband has to be on his bipap machine almost 99 percent of the time only takes it off to eat, then rightback on so total time with mcahine off I would have to guess might be 3 minutes. Family and Friends come from out of town on a regular basis which I don't mind having hte company often I am alone with my 3 year old downstairs and my husband upstairs with a caregiver. The energy of a 3 year old is amazing but overwhelming. If any one can give me any kind of guiance to ge through the last phase of this terrible disease it would really help me out. What does he need? What can I give him? How can I make him feel better? Not be afraid and let him know we will be o.k. Thanks
    Hello to all I have not been on this forum since August. Life is keeping me very busy. We are now at the end of our journey. I call the end 3 months or less. It's so hard to tell but I am judging this by my husabnds bipap and his settings he is at 24/7 and the bipap machine only goes up to 25. As his CO2 builds up he gets very sleepy and when we turn up the machine it blows off the CO2 and he bounces back again, well now that we only have one number left I am really waiting until he needs it he seems to be doing as good as he can but he is very weak now. This is his first week of not getting up to the shower but having bed baths.
    Kelly just wanted to say hi, sorry it takes me awhile to get around. My husband has als too so I know what you are going through. Here if you need someone to talk to.:)
    Hi Kelly, I emailed you on the site you had given on one of your posts. I probably should have let you known I got it from this forum. Sorry :( Hope all is well with you and your husband. You are in my prayers.
    Hey, Kelly. I'm sorry your husband and your family must deal with this disease. My husband was diagnosed when he was 47 and our son had just turned 6. Glad you have hospice, not glad you need it. Hope you will post more on the forum, if you have a chance. Nice to get to know you!
    hi kelly, good to hear from you. my progression is very fast and i was told i will not make past this year. i will start hospice this month. i am barely able to feed myself and can hardly walk anymore. i am choosing not to use peg tube for food when the time comes. i can barely talk and use a bipap 8 hrs a night. all my liquids have to be thickend.

    i am sorry to hear about charles progression. i will pray for all of you. blessings
    Hi Kelly - I am so sorry to meet under these circumstances. I just peeked at your page and it appears your hubby is hanging in there. My husband is 44 and our kids are 10 and 6. I think because they are older, they have taken on a role of protecting Dad and looking out for him. I think in the long run, this is going to help the kids get through this process.

    My husbands legs are getting weaker everyday. His arms are starting to show visible changes as well. He can still eat and drink, although we are starting to see changes there too. It scares the heck out of me.

    If you ever need to chat, don't hesitate to track me down. I don't know how to send you my email address without the world seeing it, but I will see if I can figure that out. I am glad that you tracked me down. I look forward to getting to know you and chatting more.
    Love and light
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