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  • Hi Neil,

    I haven't been on the forum in quite some time but decided to get on it today and came across your post and profile and see you live in my neck of the woods. I'm right here in Austin. My husband, Rick, had ALS. I was his caregiver for the last 4+ yrs. I'm so sorry for what you and your family are having to endure during this journey. However, I'm confident of all the blessings you and your family must be experiencing. If you're willing I look forward to meeting you and your family. I will send you my contact information. God bless.
    Hi Neil,
    Just stopping by to say Hi! My family and I had a really nice visit with my dad over Columbus day weekend. It was too short but wonderful. Dad actually got to see all of his six grandkids in the same place as well as my brother, sister, and I. Dad doesn't have any use of his legs, arms, or hands anymore. But, he is hanging in there and tries to be as cheerful as possible with this monster. I just wanted to know that I think of you often and you are in my prayers. Hugs, Kim
    Hi Neil,
    Happy 4th of July to you. I'm at work now on the switchboard at our hospital until midnite. I went to see my dad a few weeks ago in Dallas. It was a very nice visit. He has pretty much loss all use of his arms and legs now. But, he is still able to breath, speak, and talk pretty well now. He does have to be fed now because he can use his hands good enough anymore. But, he is just glad he is still able to eat on his own yet. He has a really good attitude and always says that someone else has it way worse them him. I'm glad that they were able to give you a shot that at least helped you a little. Hugs, Kim
    Hello Neil. I just read in one of your posts that you were having a rough day today. I am sorry that's the case. This stuff really sucks. I so appreciate that you keep coming here whether you're having a good day or bad--you give us a real picture and perspective and it helps me with my own PALS. I wish so much there was something I could do to make things easier for you. I know some days are better than others, so please know I'm thinking of you and wishing you better days.
    Kind regards,
    Cindy
    Hi Neil,

    Some of your posts comments I just can’t get out my head. I have worn out my welcome here and hope that what forum members are telling me is correct especially about my big toe. Anyways, I just can’t get out my head you had mentioned something along the lines of wishing you would have spent more time living in the present. It’s been around 3 months and I have been consumed 24/7 with this disease and I’m losing my family and mental health. I read your story and it is so unfair how fast this disease is. I really want this to be my last here. Any advice? Thanks for your time.
    Neil,
    I know it is extremely hard for you right now to believe it. But, God isn't abandoning you. Trust in him. He will give you the strength through this journey. Read the poem Footprints sometime. It applies to you. Talk to God and tell him how scared, angry, and discouraged you are. He will listen. He will answer all your prayers. Sometimes, its just hard to see how he is. We think he abandoned us. But, he hasn't. Ask him to send clearer signs to you that he is with you. Hugs, Kim
    Hi Neil,
    Please keep the faith and keep praying to God. My mom felt the same way you do at times when she battled cancer. But, she kept of praying anyway. Sometimes, even argueing with God as she did at times. But, he was there with her at the right time. She prayed for a peaceful passing and she definitely got it. She was surrounded by all her loved one's and due to morphine she didn't suffer. God, is with you no matter what. Trust me please on this. I felt his presence when my mom was terminal. It's hard to explain but you will eventually understand. Love and hugs, Kim
    We are all here for you Neil and your wife. Take it one day at a time and know that we care. My dad seems to be having faster progression now in his limbs. But, he is 80. This disease is awful. I am praying for you. Please trust God to be there for you even on the worst days. Cry out to him. I guarantee you he will not abandon you. My mother had terminal cancer and I prayed for her pain to go away and for her to pass away peacefully when the time came. She did. God could perform a miracle for you both yet. Either way he is going to be there to give you strength. You have a right to lash out at God and be mad. But, he can take it and will never leave you. Please hold on to that. I was very angry and frightened when mom was sick. But, at the end I felt God's presence. Hard to explain. But, trust me on this. Hugs, Kim
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