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Thread: Too fast!

  1. #1
    Forum Member Pinkelle's Avatar
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    Too fast!

    Had a melt down today! Unfortunately it was in front of my mum which I really didn't want... But it had to come out!
    Up until now my journey with mnd has been progressing pretty slowly. Then the last month or so its been one symptom after another.
    Final straw happened today when my mum tried helping me off the toilet using my sack truck. My husband has been helping me since the beginning of September and it's been fine. (even though I was uncomfortable with it, I knew I had to have help.) but for 3days a week now I'm on my own (as he's at work) with my mum calling in at 9.30 helping me get showered and dressed. But this week she's had to stay longer to help with toilet. Today though, it was too much of a struggle for both of us. Ended up having to get her partner to help me and I was mortified!
    That was upsetting but my physio came this afternoon to try a sit to stand hoist with a motorised strap which helps pull you up. But unfortunately it didn't help me. It really hurt my back. So she's going to try a different one. In the meantime she's going to get overhead hoist looked into ASAP as I know that's the next step. But I had come to realise in that moment I need proper carers in place as its not fair on my mum. Need time go get my head around this, but it's not easy. Any advice on hoists etc would be appreciated.
    My physio is lovely and she did say people find going into a hoist the toughest thing. She also added "oh Eleanor there are no words I can say" I said that I can, and gave her a few *#*~**!!!

  2. #2
    Forum Member Lynne K's Avatar
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    Oh Eleanor, I'm so sorry to hear about your horrid situation. It's not surprising that you had a melt down. I hope that everything to help gets sorted out quickly for you. Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #3
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    Hi Pinkelle
    I feel for you it is something I dread and yet I know it will come ! I am sure there will be someone on here to help you . It really does take some coming to terms with. At each stage I have had a little meltdown until I get used to it .


    It is strange that MND can go slowly and you think oh I'm doing alright and then suddenly it can speed up. I am sure someone with more experience will be able to help with words of wisdom.

    Take care
    Love Chris

  4. #4
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    Just so very sorry, Eleanor about your situation. Sometimes it is difficult to stay positive and you are totally entitled to a meltdown.

    It's also very emotive when our parents are involved in our care because we think we should be looking after them.

    No magic words but sending a virtual hug.
    Love Debbie x

  5. #5
    Forum Member Pinkelle's Avatar
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    Thanks everyone x

  6. #6
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    Sending a ((hug)) too Pink, and wishing you better days.


    CCxox
    .

  7. #7
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    So sorry you've had such a horrible day, hope you're physio can get something to help you.

    I can sympathise with you as every few days it seems there's something else i can't do on my own, about six weeks ago I couldn't get off the toilet, my husband tried pulling me about 4 times before he managed it, that hurt my shoulder. I bought a 2 inch toilet raiser 3 weeks after that the same thing I couldn't get off that one, had to get a 4 inch one.

    While waiting to get the garage converted to bedroom/wetroom we got a chairlift 1week after the installation i couldn't get myself of the top end now every time I use it i have to get pulled of it sometimes it takes 5 + pulls before I'm on my feet as my right arm is useless and the left one isn't far behind so can't help my husband. Xx

  8. #8
    Forum Member Boiler68's Avatar
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    Hello Pink..sorry to hear you've had a horrible time. My husband is struggling a bit at the moment too and we've spoken about a hoist. He really does not want to use one because it's so undignified but I told him that ultimately it will help him stay mobile (pretty sure I took that from Ellie's advice to somebody on here). I should have gone for hoist training this week but I had to cancel the appointment last minute because he was stuck on the toilet! The irony! He had a few choice words about it too! I'm sure that your hubby and especially your mum would walk over hot coals for you to help you so try not to worry too much about them right now. Hope you feel a bit better tomorrow and don't worry about the meltdowns..you're entitled. Take care xxxx

  9. #9
    Forum Member Boiler68's Avatar
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    Oh I forgot to say that there is an organisation (mentioned already in the Holidays thread) called chuc.org.uk that offer all kinds of advice about using a hoist and holiday accommodations that have them xx

  10. #10
    Forum Member Marigold's Avatar
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    Hi Pinkelle,
    I so 'get' where you are right now!
    My husband works out of the home several days a week. I have just got my rota of 'ladies' coming in to help sorted out. This took some getting used to but already it feels ok.
    However, the transfer board situation suddenly doesn't work at all and they definitely can't lift me. The OT measured up for ceiling hoist last week and I'm expecting it in the next week or so. The whole family are finding this a difficult milestone and I really don't know why. We have 'got used' to other pieces of kit without all this emotion.
    Its a very strange one.

    I guess I'm waiting for some 'hoist veterans' to tell me it's all going to be OK.
    I can't believe how fast my symptoms are moving. Was walking dogs for miles at Christmas, wheelchair by Easter and diagnosis in May.
    Arms and hands now weak too.

    My Mum is 94 and she is finding this whole thing extremely difficult too. She is 100% more mobile than me -literally but keeps forgetting what is 'wrong' with me. I have to explain it again to her every single time. As a family we have recently stopped bothering and just tell her I have 'bad legs'!!!!!

    I guess in the words of Winston Churchill, we keep "buggering on...!"
    Marigold

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