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  • Hi Amanda - thank you for your request. Not sure how long ago it was sent, it has been some time since I have been on. I hope all is well with you.
    Hello Amanda, I just wanted to drop a line to let you know that I am thinking about you. Your mother is blessed to have a daughter who loves her so much. This is such a hard disease to watch happen to someone you love, it is hard to lose the ones we love. I know this from experience, and I am not much enjoying watching my husband deteriorate. Late at night is always so hard, and lonely. Please take care and know that you have friends here.
    Paulette
    Hello my dear
    my name is lussy i was browsing today, so i came across your profile on it seams like some thing touched me, i started having some feelings in me which i have never experience in my life before, that is why i write to you, i will also like to know you the more, and i want you to send an email to my email address so i can give you my picture for you to know whom i am.Here is my email address ([email protected])I believe we can move from here! Remember the distance or color does not matter but love matters a lot in life) Am waiting for your immediate response i love you with faith and trust. Miss lussy. you can send me your email also pls
    Hi Amanda,
    How are you doing? Are you still going on your trip to Hawaii? If you do have a great time and post some pics when you get back. Kim
    "A friend knows the song in my heart and sings it to me when my memory fails. "

    Happy Valentine"s Day
    Hi Amanda,
    I am sorry you are feeling so over whelmed. This is all part of the process, and it is normal to feel the way you do. Sounds like a vacation is just what you all need. I hope you enjoy it, you deserve it. Please if you ever need to talk we are here for you. Hugs and love coming your way!!
    Hi Amanda,
    Thinking of you. My dad is getting weaker in the arms but otherwise I believe he is doing decent for now. He just had a pulmonary function test and the results were good. He had went down to Marion to the VA clinic there. Our town has a clinic but it is small. I am currently living at dad's due to some major marital issues. I have been under tremendous stress with it and on top of it worrying about my dad. That is neat that you are going to Hawaii with your mom. It will be a relaxing experience for you both and a nice breather from things. Hope your mom gets into a clinical trial. There are alot of new promising one's just coming out. Take care, Kim
    Hi everyone. I haven't been on here in a while, partially because I just don't want to think about things sometimes and partially because I just don't have anything positive to contribute. And I feel like I should with all the positivity I've received.

    I guess my mom and I are doing well. Had a visit from the ALS Assoc last week and we are trying to get into a clinical trial at SLU (St. Louis University). We applied for Medicare and SSD. You know... starting to get things "in order."

    It is such a heavy weight to carry around and I tell myself I'm not supposed to worry but that's easier said than done.

    On a brighter, we are taking a trip to Hawaii Feb 27. We are both thrilled, neither of us have been there, and it will be a nice escape.

    Thank you, everyone, for your support and prayers and thoughts. I will say this, I have been overwhelmed by the amount of support I have received from friends and family. I certainly do not feel alone.
    How are you doing? I was thinking about you and your mom. I hope you are doing okay. I wish you peace.
    I read that some people with Bulbar onset have their voice recorded and banked. Not sure where you do it at. But, thought you might be interested with your mom. Also. I heard that there is a application you can get if you have a IPAD called speak-it I believe that some use to help them communicate. One or my friends on here husband uses it. If you are interested you could message her on here. Her name is panguinjen on here and I'm sure she'd love to answer any questions. Do you have any brothers/sisters or other family to help with your mother? Take care, Kim
    I am so sorry. I am sure it is alot to process. Don't dispair, there are alot of options and help out there. Anytime you need a ear, let me be there for you. I wish you peace.
    Hi Amanda,
    I hope you had a good Christmas. How are things going? Did your mom have her dr apt. yet? Just wondering if everything went okay. Take care. I was thinking about you.
    Hi Amanda,
    How are things going? I have been busy trying to get organized for Christmas. My dad is coming over on Christmas Eve. He is a neat freak so I better get busy. Lol My twins are 15 and they have their first ever high school exams this week. They are pretty nervous. I will be glad when Friday is here and they are off this week. At least I think I want them home. lol The boys were pretty hyper last night playing swords with wrapping paper rolls. Take care and Merry Christmas. Kim
    I saw where you are from Central Illinois like I am. I am a switchboard operator at our local hospital. Our switchboard is located in the same room as our ER registration. I'm 46 and am married with three children. Our twins (boy/girl) are 15 and then our youngest son is 9. My dad who is 78 was just diagnosed with ALS in May. The people on this forum have really helped me in dealing with alot of anxiety I have over my dad's illness. At least they understand my fears and concerns. Sometimes, they even make me laugh when I need it most. Take care, Kim
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