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  • denise
    replied
    I had to read the previous posts to figure out why susie had a toilet emoji.

    Think everything is embarrassing no matter what we've been through. Having babies having stitches things still get to us. Just the way we're made. Xxx

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  • Susie
    replied
    Ellie Ah, that makes me feel better, 🚽 is a doddle then 😁xx

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  • Ellie
    replied
    I'm glad it worked out well Sue and Mark wasn't mopping up puddles as soon as he walked in the door πŸ˜‰

    Originally posted by Susie View Post
    Turns out, they're all professionals and have seen and done it all before
    And how! You're so right Sue - I remember when my community nurse helped me to the loo and I was so embarrassed for her and kept apologising for what I was putting her through, and she said she would rather do that anyday rather than shaving corns off a man's unwashed foot πŸ₯΄ She said she her next call was to do an enema and a catheter change, so I let her off lightly really 😊 xx


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  • Susie
    replied
    Thanks all. Mark and the car got home safely. Wish I could still get into it πŸ˜•. Thursday went really well. A friend came round at lunchtime and made lunch, then we had a good old catch up during the afternoon which was great.
    I had so many calls on Wednesday and then Thursday morning from all my care providers. It turns out there's a MDT meeting (the first) about me tomorrow morning and I think they all wanted to be up to speed before attending. On Thursday morning the district nurse, who I've spoken to once on the phone previously, asked if she could come out to meet me before lunch. Perfect! Like everyone else involved in my care, she's lovely, stayed for a couple of hours and took me to the loo just before my friend arrived. Turns out, they're all professionals and have seen and done it all before πŸ˜‚, so letting her get me into the sling and onto the loo although a first for me, wasn't the end of the world. You can't afford to let your PMA and sense of humour stray too far when you have MND can you!
    Anyway, back on track, out and about this weekend while we still have the loan of a car (until Thursday) that we can get me into, so making the most of it and the glorious weather.
    Powered wheelchair arriving tomorrow, then just need to sort out the WAV. Hope I don't have to wait too long🀞. Life is looking up 😊.

    Hope you've all had a good weekend, sending Sunday evening hugs and thanks again xx

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  • Deb
    replied
    Hope today went well Susie and that you've got your car and Mark is back.

    Its really scary to be left alone when we rely on others. Its also frustrating when we first can't manage independently.

    Love and hugs to you πŸ€— 😘x

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  • Ellie
    replied
    Originally posted by Susie View Post
    I think having no one else here with MND, no hospice or respite and most of my care team are learning about MND with me. I'm their experience.
    Sue, that's not always a bad thing. I've found the 'non-experts' can think outside of the box, rather than having preconceived and fixed opinions. xx

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  • LindaB
    replied
    Susie is there anyone on the island who you could pay as part of a contingency plan...to be a carer in emergencies?
    When we assess carers we always agree a contingency plan....so maybe something to consider with your MND team for the future.
    Hope today goes well but also would be a good idea to have someone you can call on or even someone just to be with you for those hours?
    Take care πŸ™

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  • matthew55
    replied
    Don't despair. I find lows are followed by highs and as we are left with our brains, think outside the box and adapt. I have found my practically useless right hand is better at moving the dial on my pump than my left. Stay Strong and Stay Sane. πŸ’ͺ😘😁❀️xx

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  • Susie
    replied
    You're quite right, but we seem to always be 'running' to catch up. Wet room happened just in time although I couldn't get a shower for 3 weeks before it was done. The small extension to the downstairs won't start until after the New Year break so we've got the bed crammed into the lounge making it difficult with the stand assist and sling.
    Last week I could transfer from the wheelchair to the raise tilt chair and the toilet. This week I often get stuck and Mark needs to lift me by the handling belt.
    Tomorrow he has to go to fetch the car and will be away from 10.15 to 4.45. Very scary as he needs to help me with most things. Hope I can keep my legs crossed πŸ˜‚. Carers are not in place yet.
    A month ago I was so much more independent.
    I think having no one else here with MND, no hospice or respite and most of my care team are learning about MND with me. I'm their experience. I do have a specialist MND nurse coordinator and MND consultant neurologist on the mainland but they seem such a long way away.
    I'm not complaining, I get so much support from my OT and she's great, but do worry that we're going to get caught out and not cope . Perhaps they have plans, I hope so 😁
    Good night hugs to all πŸ€—πŸ€—πŸ€—

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  • matthew55
    replied
    It is what it is and what will be will be. One day at a time. βŒšπŸ€—πŸ˜πŸ˜˜xx

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  • Mary C
    replied
    Susie
    We can’t know what lies ahead as the pattern is unpredictable and different for us all.Of course we know if it’s bulbar onset how MND might affect speech etc.
    Sometimes I read peoples experiences on this forum and can’t help thinking that I hope I don’t get certain symptoms.
    I find I prefer to take it as it comes now within reason.Having always been fairly organised I am glad I planned things like sorting a lift, wet room ahead of actually needed them.
    I don’t read any more about MND only when I feel it’s helpful to me or others.I went through a phase of going on you tube and looking at end of life stories .

    For me as symptoms crop up I turn to palliative care team for advise or on this forum as nearly always somebody has had similar issues and will say what helped them.
    I also find my faith helps.That said I have had periods when my mind wanders to what I will need to go through on this journey.

    I totally understand when you say Susie you alternate between burying head in the sand and wanting to learn more about MND .

    Hope you have a good day
    Best wishes
    Mary


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  • LindaB
    replied
    Susie the character in the film is really still 'well' however decides to end her life before she deteriorates further. It's how various family members come to terms with her decision. A good movie IMO however the subject matter could be upsetting for some.

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  • Susie
    replied
    Not sure I could watch. I'm half way between wanting to know more of what lies in my future and half burying my head in the sand. Want to know, but daren't look.

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  • LindaB
    replied
    I liked it however it's a difficult watch in many ways.

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  • denise
    replied
    That's it Linda. I didn't like it. I'm not sure why xx

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