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  • I am new to this site. I am looking for support with the loss of my husband who passed away in December from ALS. He was my heart and soul. Having trouble moving on and accepting he is really gone.
    SO sad...thinking of all who will miss you dearly. Thanks for your encouraging words ~something so small can mean so much Bless your soul :)
    Rob seems to be in the final stages and hotsppice wants to keep him a kinda sleep coma, yesterday was out of his head speaking strande names and such, agitatied, it all started with constapation just couldnt have a bowel movement. At a place were i am not sure what to do, i know that to induce this sleep coma he would never wake up to be himself on one hand on the other i know he hasnt had a decent smile 4 months, and is truely suffering. was supposed to give the meds every 4 hours but waiting to c how the morning unfolds he is still asleep. prayers for him please.
    Linda, I know you were ready because we spoke about it many times.I will meet up with you and we will ride our horses together as we planned.I miss you, but know you are now at peace in a better place.BestLoveAlways

    If any of the family(blood or forum) would like to come by and read her last VM to me on the 23rd, I am deleting all others so hers will be first, in her memory, for a couple of days.I want everyone to know how happy she was that day, just six days ago.Just click on my name and you may read it.
    I AM INTERESTED ABOUT THE SHARP pains in the head as I have been having them, too - on the left hand side. SO maybe we can be assured it is something to do with ALS.
    getting headaches, too, but I think that is cos of bad breathing.
    arms so weak - that is really frightening, isnt it!
    Ah, well; at least I have laods of help now. Wnother helpx helper arrived yesterday and again - lovely.
    I never get in any other seats than my whchairs or bed. I know you do not want t wheelchair but I priomise you it is good.
    Linda, it really is like a bad dream, isnt it! HArd to accept it could pssibly be really true that this can be happning to us.
    BUt thru it we have found each other and many other wonderful people and discovered lots of love.
    LIke that I am sending to you, sweet one;
    A strange misspelling, you have to agree:)
    My friends name is Kte Coleridge so maybe that was reaching to you thru the ether????
    Anyway,used the bipap in the night but it is so HOT TO HAVE THAT DAMED MASK STUCK ON;
    AHve to have something to moan about.
    I got up in the night - so thirsty and needed a pee and could not go lmying down, but could NOT get back ibnto bed. Lay for about an hour hal fin bed half in the wheelchair. THink I dozed a bit then refound the strenght to drag the rest of me on to the edge of the bed. It is getting soooooooooo hard. Well, that is the story we have been given to fulfil/
    Loads of love my dear Linda
    Linda, 15 days and not a peep.What is that drink you speak of Vita something?Is that for the peg?
    Thinking of you, how's the bipap?Better? I am hanging upside down every night to increase blood flow to my brain.I don't think it's doing one darned thing.The stretch decompresses my back and feels good,though.Check in if you have a minute.I'm assuming your mouth is much better by now!Love,
    Charlotte
    "getting coleridge"? Is that an expression? Please explain to a Brit....
    So hot my head is always sticky and sweating and I long to shave off my hair.
    Connie and Neville, helpx carers, are coming back today as there was a problem at their next situation. So that is good as S has buggered off again after saying he would look after me when they were gone so I have been alone the last couple of days. Still, I cope.
    Will re-use the bipap I promise. We must go along hand in hand:) all love
    how lucky you are to have your girls with you. So glad you are getting back into gear. My bipap technician is coming to the four monthly check up tomorrow. Maybe I SHOIULD use it....
    LOve you dear LInda
    just computer problems, my darling Linda. I offerred my computer some Lambrusco and it did not go down at all well. The computer is dead and had to send it somewhere for a post mortem to remove the data on the hard drive. I have my little netbook still but I had it linked up to something else that kept going wrong. THink I am sorted now. Hope you are keeping that chin up. Mine quivers all the time and it is SO embarrassing.
    Isnt it amazing how one keeps going long after one thinks one is finished. I mean that I thought I could no longer transfer maybe MONTHS ago and yet I still manage it.
    Can you still move your legs in bed?
    Tell me really how you are, if you are keeping the black clouds at a respectable distance....*Loads of love, my Linda
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