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  • Hi Charlotte,
    I was pooped last night and am laying low today. Or sitting still to be more accurate. I'm glad that my voice isn't expected to do anything fast, and very glad the amplifier came up. Otherwise, the changes are nothing to be concerned with. I'll need more help getting things done (clipping up hair, and at some point washing face and brushing teeth). It's slow enough to take it in stride and make plans. You are a sweetheart to be asking for news. Love, Ann
    Just about to leave. The weather is horrible. Got held up as my parents popped by. Dont forget to look up Whangamata!!!Have a nice weekend. Cyber Angel
    Hi Charlotte, I'm not expecting anything dramatic at my clinic visit. I'm not a fast progressor. It's far more exciting to see the docs before a dx. I appreciate your thinking of me... and I hope you are doing better, if that isn't too crazy a wish. Love, Ann
    Thanks, Charlotte. I'm just waiting for the other shoe (foot?) to drop. I know that you saw my last update to my "A Hopeful Update" thread. Not so hopeful, and nothing much has changed since then (I haven't seen a doctor again, and won't until Dec 21). But, as my doctor and many here have suggested, I'm trying to focus on the (relatively) good news that my symptoms are progressing quite slowly.
    Doing OK, Charlotte...thanks for checking in on me/us! We do 15 minutes of stretching exercises first thing in the morning. I'll be on one side of the bed, my Dad on the other, and we work ourselves up from toes to shoulders. I do a neck massage in the afternoon and stretch out her toes/feet and knees also. She doesn't care for much more. Mom doesn't care for much medicine...just pills in general I would say...although she does take 4 different medications through the tube. We had a nurse coming in weekly, but Medicare has now deemed that unnecessary as Mom isn't progressing fast enough in their eyes. (Really?) It's a sore spot for me, but I won't get into it. We haven't contacted hospice either. So far we've held up alright. I know she would be against any medication she thought would alter her "mental state"...no matter how beneficial. We'll chock it up to being stubborn I suppose.

    Hope you're doing alright yourself, and that all's well in Texas!
    I did read the article before I answered you. LOL. But I also trust your judgement.
    You shouldn't have to pay to get this I just got it off the internet?
    Its called: Motor neurone disease: clinical features, diagnosis, diagnostic pitfalls and prognostic markers by Sathasivam S,
    Let me know if you cant do it. Its a really good article about El escorial scale and a slightly different scale.
    Hi Charlotte! I haven't been able to get on here much the last week or so. Work has been a real "peach" lately...that seems to be the case around any of the holidays. Hope you were able to enjoy the weekend! The weather cooperated down here and a few of the leaves are starting to change colors here in the mountains.

    Regarding Mom, she has been using her bipap a lot more the past week or so. She's been sleeping with it for several months now, but prefers not to go without it more than an hour or so during the day now also. That's came on pretty quickly...and has me a little on edge to be honest with you. Once her breathing became a little more difficult, she really hasn't wanted to get on the laptop or even go sit on the porch as much. I know she's frustrated and scared and it's hard not being able to do more for her.

    I hope this finds you in good spirits and doing well yourself!!
    You know about that new way they are treating the ankle bone on bone would probably work for knees,too.The chicken guts/cartilage is injected into the spaces between the bones.I heard it lasts months,then you redo it.Is he taking Celebrex?
    He just has extreme weakness in his legs, where they just give out. Both his knees are bone on bone, he would be a canidate for knee replacement surgery if he did not have ALS.
    No, that was the price I saw. My husband wears 2 of them now, has had many knee braces over the yrs, as he was a marathon runner and his knees have been messed up for 30 yrs, and these are great in his opinion. He would be in his wheelchair(or on the ground) all the time if he didn't have them. He is still able to walk with confidence of not falling with them.
    It was alys page! Just got home from work and I am exhausted, but I enjoyed it very much.
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