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Thread: My wife has been diagnosed with MND-ALS + FTD

  1. #521
    Forum Member Dave K's Avatar
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    Afternoon joycie...

    Definately worth considering when I can no longer manage, thank you.

    Well, so much for my day off as I have not stopped, at least I managed to get a lot done today with julie being at her day centre.

    Julie suprised me to be honest as it only took 4 nights before she settled. Dementia normally like a week or two so I can count my blessings really. But I have been here for Julie every step of the way, reasuring her constantly.

    So, I have just under 2 hours 'Dave time' before I have to go and pick Julie up, so TV until then for me.

    Dave X

  2. #522
    Forum Member Dave K's Avatar
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    Julie is back from day care looking a lot happier as the trip home in our car took 8 minutes, not 1 hour 15 minutes on the minibus.

    P_20160113_160934.jpg

    Dave X

  3. #523
    Forum Member Dave K's Avatar
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    Thinking of tomorrow... Tomorrow I paint the kitchen and bathroom in, funnely enough, Magnolia Kitchen & Bathroom paint. hahaha

    Once this has been done then that's it... Mind you I have said this everyday for the past 3 days.

    Big day tomorrow as 'Virgin' is calling to fit our 100 Mbps Broadband (10:00 - 14:00) then Julie's dietician is visiting (14:30) and I am hoping that Julie's weight has stabilised, if so then it will be the first week in months, so fingers crossed. Then when all this has been completed we need to drive to the chemist to pick up Julies monthly prescriptions (120 Ensure Compact suppliment drinks, 6 tubs of Thick & Easy thickeners & a box of Statins.

    Julie is more happier here in this home than she was in the last one even though she was adamant that she did not want to move, Julie has not mentioned the old house at all since being here. OK, it is not a bed of roses as Julies dementia was not left behindd but Julie seems less confused than before.

    That's my update for all who are reading. I hope it is just not me... Hahahaha

    Dave x

  4. #524
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    Thanks for the update Dave, glad it's going well.

  5. #525
    Forum Member Dave K's Avatar
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    Evening John, thanks for your message, yes it is going well, nearly finished now. Julie has gone to bed with a hot water bottle, she loves her winter comforts and I don't mind accomodating any or all requests.

    It would also be nice to know who is following / reading our journey. Just a simple 'I'm reading' will do as I do realise that many folk are reading my messages, or the same few are constantly viewing, bumping up the thread views, but I doubt that.

    I know I can, at times, repeat myself, but my life is litterally an online life, there are very few folk that I know that have stayed with us on our path.

    So, a simple message means so much to me, it keeps me going.

    Dave X

  6. #526
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    I am reading, Dave! Joycie X

  7. #527
    Forum Member Dave K's Avatar
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    Quote Originally Posted by willsandco View Post
    I am reading, Dave! Joycie X
    Thanks Joycie X

  8. #528
    Forum Member Dave K's Avatar
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    Quote Originally Posted by Dvd View Post
    Dave K .. Glad the move is going well and the paint is ready to be applied to the walls of kitchen and bathroom .. Am following your journey and glad you and Julie are now getting settled in your new home .. Dvd
    Thanks Dvd X

  9. #529
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    Hi Dave, well I pop in here frequently (to the forum) and have read your 'blog' (as I think it could be called!) with interest and sympathy. I lost my husband (also Dave) last year to the horrible disease MND. What I wanted to ask - you say you picked up Julie's prescriptions and you mentioned one of them was statins. Does Julie have, or did she have high cholesterol? I ask because my Dave's problems all began after he started taking statins and when I mentioned it to the neurologist he said there was no connection. However I have discovered there have been studies done on this, mainly in the states because there was a perceived possible link. Interestingly the neurologist told Dave to[/B] stop taking the statins immediately and the MND Association itself recommends talking to a doctor about taking this medication when someone has MND. See this advice, http://www.mndassociation.org/wp-con...0-%20Jul13.pdf which although dismisses the taking of satins causing MND, there may be some doubt about the effect on the progression.

    Might be worth talking to somebody/ All the best to you and Julie, Trish

  10. #530
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    List of those who have replied this year (17) and for every one identified there are probably 10 readers in the shadowsphere so 17 plus 170 probably you have a circulation of about 180 persons, not bad, not the Daily Mail but not bad.

    Grannie Annie,
    Dude,
    Jan,
    WendyWooG,
    John14
    Katrina36,
    John,
    Terry,
    DvD,
    willsandco,
    Dippy,
    ccinjersey,
    Candle,
    Barry52,
    Susan,
    SueB,
    JanQ,

    PS and Dabchick

    PPS agreed on Statins not good with MND can cause muscle stiffness
    Last edited by John14; 13th January 2016 at 18:46. Reason: addendum & statins

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