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  • Lynne K
    replied
    Rosemary6NT I know. Luckily I can still just about get to my wheelchair using my walker and get to and use the loo mostly independently but I’m teaching Steve how to change my stoma bag. He did it last night but I changed it in the middle of the night as it wasn’t right. I gave him further tips a short while ago and he did it ok but hopefully won’t need my instruction shortly xx
    Last edited by Lynne K; 3 January 2022, 17:31.

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  • Rosemary6NT
    replied
    Originally posted by Lynne K View Post
    Thanks Graham and Rosemary. What’s the Molift Raiser Pro Rosemary? We’ve got a Return Platform but can’t use it on our thick carpets. It has a strap to pull the client up but Steve didn’t like it. He’s 71 so maybe that’s something to do with it. Too much for him.

    I’m waiting on contact from the Council OT about hoists but Christmas holidays have slowed things. Waited also for care assessment and adaptions xx
    That's a shame. I find that the positioning of the belt is crucial and also having the knees lower than the hips helps

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  • Lynne K
    replied
    matthew55 xx

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  • matthew55
    replied
    Last year I actually rejected care. Now I can't live without it. Slow burner of slow burners. 😉🤗😁😍xx

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  • Lynne K
    replied
    shelly21 thanks Shelly, my usually positive MND sister xx

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  • shelly21
    replied
    Lynne I'm the same. You're not alone. I seem to have took a dive since mid December. Legs getting very weak in my legs. I think we know whats ahead but with each new decline it frightens us. I have been positive but last few days I've struggled x

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  • Lynne K
    replied
    Heather R thanks, yes I am waiting for a carers assessment. Hopefully in the first few days of this new business year xx

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  • Heather R
    replied
    Lynne K is it also a sign that we need to accept carers? I think you are waiting for this? When I was feeling everything was too much, the hospice consultant helped me clarify what was to do with needing and accepting more help. Sending love Xx

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  • Lynne K
    replied
    I just googled the Molift Raiser Pro and it looks identical to the Return Platform so couldn’t be used on our thick carpets xx

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  • Lynne K
    replied
    Thanks Graham and Rosemary. What’s the Molift Raiser Pro Rosemary? We’ve got a Return Platform but can’t use it on our thick carpets. It has a strap to pull the client up but Steve didn’t like it. He’s 71 so maybe that’s something to do with it. Too much for him.

    I’m waiting on contact from the Council OT about hoists but Christmas holidays have slowed things. Waited also for care assessment and adaptions xx

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  • Rosemary6NT
    replied
    Originally posted by Lynne K View Post
    Another day feeling scared stiff but still just about to get to my wheelchair using my walker and go to the loo independently but I’m seriously dreading when can’t do these. I’ve always been a positive person but there’s cracks appearing 😟 xx
    I can empathise, I went through that a couple of months ago. I figured it wasn’t worth the risk of falling and neurological physios brought me a Molift Raiser Pro with a sliding belt that enabled my partner to pull me up to standing and transfer. She can raise my 95 kilos with it! It is a bxxxxy nuisance having to ask all the time though ☹️ Xx

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  • Graham
    replied
    Ohh Lynne! I was just like that in 2012! Please get the professionals in Tuesday.

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  • Lynne K
    replied
    Another day feeling scared stiff but still just about to get to my wheelchair using my walker and go to the loo independently but I’m seriously dreading when can’t do these. I’ve always been a positive person but there’s cracks appearing 😟 xx

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  • LindaB
    replied
    Suefromwakey sorry you've had such a dreadful and I'll add 'unlawful' response from social services. Social workers are directed in law to assess and provide services for those considered eligible and in need. They are also to offer Care Act advocacy for anyone who may need support through the process.
    They can say we'll review in 12 months however you can ask for review at any time....what are they reviewing? Or do they mean reassessment....again you can ask for this any time.
    Good luck and my suggestion is use advocacy👍🏻😉

    In an emergency social services may ask are there family members who could help, however at assessment it would need to be made clear that's not an option or if it is an option how long for.
    Last edited by LindaB; 2 January 2022, 11:13.

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  • Lynne K
    replied
    Still managing to wobble to my wheelchair with my walker and manage the loo independently 😉 but obviously not for long so enjoying whilst I can. All my breath stacking is still going well but with a bit more effort and determination. I put my silk pjs on independently every night because they more or less just slip on but Steve puts my day clothes on me (after I do nickers) as they’re harder. This disease sucks but I’m fighting it hard xx

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