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Thread: My journey so far with MND

  1. #1
    Craftlady
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    Thumbs down My journey so far with MND

    Not been on the forum for a while as I'm finding my life with this disease well to be blunt a nightmare..... My mobility is very poor try to keep it so I can do shuffles to manoeuvre myself in the toilet but it has reached the point of not being able to do this. I can't use disabled toilets as I can't raise myself up from the low sits use to high toilet frames indoors and side arms don't help me. Can't get my bowels to work even with medication get severe stomach cramps but losted the muscles needed to complete......I can not say that I have a day without something that causes me to cry.

  2. #2
    Kernowcluck
    Guest
    Dear Craftlad y , there is nothing good about this horrible condition. Even with the best will in the world it destroys you mentally and physically and the only consolation I can offer you is that you are not alone . I'm so sorry things have progressed faster with you but I am in also in the same boat so I totally empathise with your feelings especially the daily tears which I also shed. I cannot walk any more but can stand in a stand aid but I cannot move my legs all my arms anymore or feed myself. Thankfully I can still talk and swallow but being locked in a useless body is devastating. I find the indignities of receiving personal care almost unbearable sometimes but have to remind myself that there is just no option. Have you tried prune juice or proper orange juice for your tummy problems?

    Please stay on the forum if you can as we all tend to worry about eachother if we don't hear for a while. I wish I could give you a big hug but I'm sending you one anyway. Lots of love KC XX

  3. #3
    Forum Member Ellie's Avatar
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    Hi Crafty,

    Sorry to hear you're in a bad place atm. Yes it's difficult, very difficult, to feel your own body failing; no two ways about it . Now it's time to make your life physically easier on yourself by getting assistance to use the bathroom etc. No, it's not something I nor anyone else here aspired to and the first few times I closed my eyes tightly and pretended it wasn't happening!

    You sound like you'd be able to transfer from a chair to the loo using a transfer turntable or an ETAC Turner with assistance. Your OT will be able to guide you but they often are too cautious in their assessments - you know what your capabilities are. And having a bidet toilet is great; I think the MNDA have given grants to people for these.

    Re the bowels; they can take over your life, believe me I know! You're on the wrong meds if what you're taking is not working. It takes a mixture of daily softeners and pushers to manage chronic constipation (and that's what you likely have if you aren't "finishing") if you're not comfortable talking about it here, talk to your Nurse or GP. Usual meds inc Docusate Sodium, Senna, Macrogol.

    I know you take antidepressants; has your GP reviewed these lately?

    Big hug to you,
    Ellie x
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    WendyWooG
    Guest
    Ah so sorry you are struggling Craftlady, I can sympathise so much
    I had been managing to shuffle into to the loo too, but stayed away from home this weekend as it was my daughters wedding. i had a bit of an accident where I fell off the loo and crashed into the door of the shower of the bathroom where I was staying. Very undignified and I have more and more bits of me aching as the day goes on. I think a call to the .o.t may be in order
    I too have found even so called disabled toilets too low, and had been carrying my loo seat riser around with us in a carrier bag to help lol. Unfortunately we tried to use it in a bathroom not set up for disabled, I thought I could manage with the riser seat and my walking frame. I was sooooo wrong, without the grab rails I was helpless to save myself I won't be doing that again.
    There are lots of different softeners etc keep trying different ones to see what works.
    Big hugs to you xx

  5. #5
    mags55
    Guest
    Craft lady
    I too was so constipated, I was sitting on the loo for over and hour. Was so painful, it gave piles, I was dreaded each time I needed to go.
    I tried senecot, but that's a pusher, I needed a softer. The hospice suggested a powder called. Twice a day. Well, it works wonders.
    Give it a try. You may need pushers too. I know,it's alwful not being able to go, so uncomfortable.

    Wendy Woo
    So sorry about your fall, must have a shock.
    Apart from the fall, was the wedding lovely?

    Big hugs
    Mags xx

  6. #6
    mags55
    Guest
    Sorry the powder is called molaxole.
    X

  7. #7
    WendyWooG
    Guest
    Thank you Mags the wedding was in a vineyard by the sea and was absolutely lovely.

    Craftlady
    I use movicol twice a day when needed and lots of fresh orange juice, but do tend to get tummy cramps, sometimes if I misjudge things. It's a tricky balancing act.

    Wendy xx

  8. #8
    Forum Member Ellie's Avatar
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    Oh Wendy, how awful for you - hope you're not too sore! Carrying the seat riser around with you is hilarious

    Wedding venue sounds idyllic, must have been an emotional day for you.

    Love Ellie x.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #9
    Forum Member Ellie's Avatar
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    Hi again Crafty,

    I just want to stress that you're not alone; you can see from above that, fortunately or unfortunately, there are others who've been through the same sorry issues. We know exactly how you feel and will help you as much as we can.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #10
    Craftlady
    Guest
    Hi thank you all ...yes OT and Physio came round following my SOS and waiting for the equipment so until they arrive in limbo ...have the meds to help with constipation not yet found the right combo....and yes have to spend a considerable amount of time in the toilet ...never has the things you take for granted become the centre of such trauma. Yes the indignities are awful and you have to close your mind to it. I feel ashamed for my rant as some of you have had to deal with your own difficulties and have very generously offered me your support and advice. Hopefully once the transfers have been sorted and I don't have to use the disabled loos I will then be on the pathway for the next round whatever that will be... I have been supported well by the team I can't complain but even they can't wave a magic wand... I just don't know if I'm strong enough to deal with what this disease has In store for me I hate trying to fight a invisible foe who is beating me hands down...and none of us have done anything to deserve this and where did it come from?.... I just want to go with some dignity

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