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  • hi Sue, I'm on the forum less these days as well as it gets harder and harder for me to type. I've been using Dragon a lot more but it does come up with some funky spellings! are you still going to Mass General? I haven't been there since the Dex trial stopped and I don't think I'll qualify for the stem cell trial, but I'm keeping my hopes up for that. Love you girl! Helen
    Hi Sue, hope you are well... recently you posted some info on audiobooks but I can't find it... could you send me the link when you get a chance? Thanks!
    So sorry about your weeks in hospital. Is dex. Making you sick? I have been taken dex for 4 months now, so far no symptoms . Keep you in my prayers! Merry christmas!
    My Christmas wish for you and your family is to live in Peace Harmony Laughter and Love and know how Beautiful You shine so bright with your Love and Light! I just want you know how much you mean to me ... we have never met in person, but you are known to me and stay in my heart. I feel we have been friends forever ....
    Hi Sue, I noticed you recently posted that you've had 2 friends with Bulbar ALS pass away before losing their ability to ambulate. My Mom has Bulbar onset and still walks pretty well, but no longer has swallowing capabilities. Can I ask you what ultimately caused your friends' passing? I'm afraid of aspirating and/or pneumonia at this point. I'm hoping you are in good spirits! Thank you!
    Hi Sue,
    How are you doing? My dad is staying pretty much the same lately. He is still able to eat on his own even though it takes awhile. He gets around with a walker when he's home but uses a manual wheelchair when he goes out. His speech kind of comes and goes. One time it is perfectly clear and then the next garbled. His breathing has never been too bad but he does use a bi-pap at night and he sleeps 100% better with it. Dad does take ritulek but I'm not sure if it helps or not. Take care, Kim
    Hi Sue:
    Just checking in to see how you are doing? My brother is not doing well. His speech is almost gone and is losing the use of his arms. My heart breaks for him, and feel so helpless. I try to cheer him up day to day, but he has difficulty accepting the deterioration. I pray for each and every one of you.
    Hi Sue! Yes very hot and very dry. It weighs heavily on all of us. I feel bad for the displaced people and animals. We're fine though. Thanks for checking on me! How are you doing Sweets?
    Hi Sue, just saw you were looking at the same post as me, and thought I'd pop over and give you a hug! {{{HUGS}}}
    Hi Sue! Just read a post by you and I realized that I haven't seen you very much lately. How the heck are you? I'm good. It's hot here but I'm staying inside mostly. I hope you are doing well!
    Hi Sue,
    Hope you are having a good weekend. I am the mother of three children. Our twins (boy/girl) will be 15 in September and our youngest son is 8. I just recently joined this site since my father was recently diagnosed with ALS. I am extremely close to him and was devastated by the news. My mom died 15 years ago of colon cancer. My dad is going to a ALS specialist for the first time on June 12th. Hoping they put him in some clinical trial. Hugs to you. Kim
    hi sueG --- kiwisally called me snippy ! i made a mistake of where i listed my post and she apparently has an issue. i see a lot of people make the same mistake. i didn't mean to, now she is saying "it can't really be that hard can it". oh boy ! oh well, must be how they act in NZ. thanks again for your messsage. cyndi
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