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Thread: Positive strategies & inspiration needed

  1. #1
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    Positive strategies & inspiration needed

    As some of you know I was diagnosed in August last year (2019), aged 50, and since then my progression has been pretty rapid. I can barely walk a just few steps with a zimmer, am rapidly losing strength in arms, and can no longer speak or eat at all. I need help with all transfers and trips to the loo and will soon be using hoists. My weakness is now such that slight deteriorations have a big impact as itís one step closer to total disability. And the loss of what very little remaining independence I have.

    I would say I coped pretty well with everything until recently and the reality of what my future holds is really kicking in and suddenly Iím feeling so depressed, desperate even. I had a charmed life, being very happily married and a good life style. My wife is being amazing but is also struggling, naturally. I always said as long as I was alive and had a decent quality of life I was ok. But Iím not. Suddenly Iím stressing about getting to the toilet (even with carers coming in 4 times a day) and terrified of what lies ahead and am wondering if thereís any point. Iím sure itís not at all helped my being house-bound while we await our WAV. Iíve been outside twice in the last 2 months.

    How do you stay positive and keep going? One or 2 of you have kindly offered advice to me previously, in private messages, for which Iím so grateful, and I was doing ok for a while but can honestly say Iíve never felt so low and so utterly hopeless and need some inspiration.

    How do you manage? How do you stay positive? Do you know of any good blogs etc which have helped you and might help me? Iíve always been able to cope and stay positive on my own but Iím failing miserable. So sorry to sound so needy.

  2. #2
    Forum Member Terry's Avatar
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    Hi Sarah,

    No great words of wisdom I'm afraid.

    We have been through our worst three months ever and are finding it hard to cope with things.

    It's a shame you have not been able to get out more and hope that you make the most of the coming nice weather.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
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    Thanks Terry

    I’m sorry you’re struggling too. We’ve just had hoists installed but my wife can’t manage them on her own. I have carers coming in but they obviously can’t be here every time I need to move/go to the loo, so that’s adding to my stress.

    I’m hoping to get out later this week, and that that will give me a better perspective.

    Sending much love and strength at this difficult time.

    Sarah mo

  4. #4
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    Hi Sarah,
    I know what you mean, I can hardly walk now, my husband wheels me about in my wheelchair. Everyday seems to get more difficult. My speech has gone now and eating is very poor. Like you my mood is low. What can we do ?
    I hope you can get out this week. It helps to see something different and take your mind of things.
    Sorry Terry is having a difficult time too, thinking of you both.
    Love Sheila x

  5. #5
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    Hi Sheila

    I’m so sorry things are getting worse for you too - it’s scary isn’t it when you can feel things slipping away - yet again. I’m struggling to adjust, physically and emotionally, and also mourning things I can no longer do, such as spend time at our much-loved caravan in West Wales. It breaks my heart.

    I have to find a way of dealing with this tho or I’ll go mad. And they say a positive mind set helps physically too don’t they. Here’s hoping someone has some inspiration.

    As sorry as I am that you - & Terry - are struggling too, it helps to know I’m not in it alone. Sending you much love and fortitude too.

    Sarah xx

  6. #6
    Forum Member Terry's Avatar
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    Hi Sheila & Sarah;

    I really shouldn't moan, I can eat and get out every other day. I mainly feel for our other halves.

    I don't tend to look forward much, my wife plans out a week in-front but I never know until I am up if I can do anything much that day. Just try and live one day at a time and you have to let many things go.

    Love Terry

  7. #7
    Forum Member Broostine93's Avatar
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    Something that might help with your loo worry (for #1) is something I've heard of other people using who have MND. I'm not sure of the exact name, but it's something like a she-wee. It means you can relieve yourself without needing to be helped to the loo. I do believe that you can get these prescribed by your doctor or even on Amazon, if I'm not mistaken- definitely worth looking into!

    As for general low mood, it's hard to completely eradicate that low feeling, but I have a few suggestions that I can list below (especially for those days when you're too tired/worn out to leave the house):

    - stand up comedies/old sitcoms/anything funny to watch on tv
    - funny videos on youtube (I personally watch these every night to help me get to sleep with a clear mind)
    - going through old photo albums with your wife (it'll remind you that this is such a short period of your life, when you've done so much more beforehand )
    - if you can use your hands to write, play games like noughts and crosses or hangman (they're oldies, but goodies)
    - read (actual books or e-books). It's a world where you can escape to for a few hours and forget about life's problems
    - listen to podcasts (there's so many to choose from- you're bound to find at least one you'll get invested in)
    - listen to your favourite music or meditative music

    I hope these give you a few ideas to try to cheer yourself up, if only for a short part of the day
    "This, too, shall pass"

  8. #8
    Forum Member Ellie's Avatar
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    Hi Sarah,

    I am glad you reached out, it's hard.

    IDK if this blog would be of any help to you? https://alsandwellness.blogspot.com/...bel/About%20Me

    I watch some comedy most days to have a laugh - if you have Netflix and have not seen Grace & Frankie, it's well worth watching and episodes are only 30mins long.

    May I ask what type of hoist and sling you have? Most can be used successfully with one pair of hands, albeit with a degree of inventiveness.

    Hoping you get out very soon - cabin fever certainly contributes to feeling low

    Oh, just a thought - do you take vitamin D3? Apart from being recommended by our Health Services, it helps with mood too.

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

  9. #9
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    Hi Sarah ,

    I am so sorry you are feeling low but its is totally understandable. Please dont apologise for it ever because it's almost impossible to be positive when MND is relentless. You have had such alot to come to terms with in a very short space of time.

    I find once I am down it's really hard to pull myself up. I find friends or family help because I put on a brave face that stays with me.

    I dont know if this would help you but going to the loo was a stress for me because I need help so I was not drinking enough water, which is not good. Initially I thought it was gross ( yes I am a wimp ) but I use a ladies urinal bottle thingy in the day and I can manage independently . Although I have no or very little leg strength my arms can manage this.

    I hope you get your WAV soon because going out, even for a drive is uplifting. I also find zoning out with loud music helps.

    Lots of love and hugs to you and your wife,
    Love Debbie x

    Ps going to try Grace and Frankie tonight, Ellie .

  10. #10
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    Oh Sarah, I am sorry to hear about your caravan. I know you were really looking forward to going there next month. You are getting a wav soon! So you and your wife can get out more. Maybe something husband and I should think about.
    Thanks everyone for your advice and help.
    Love Sheila x

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