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Type: Posts; User: Helen82

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  1. Replies
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    I was only thinking of you the other day and...

    I was only thinking of you the other day and wondering how you and your gran were doing. Sorry to hear that things have deteriorated to this point. Thinking of you and hoping you have people around...
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    Thank you for your reply. Iím going to see my GP...

    Thank you for your reply. Iím going to see my GP - the same one thatís managing mums care. Iíve just got lots of muscle twitching and changes of sensation in one leg and itís driving me mad. I donít...
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    Thank you lynne. On the one hand I feel silly for...

    Thank you lynne. On the one hand I feel silly for jumping to conclusions just because my thigh muscle is twitching but on the other I canít stop getting ahead of myself and catastrophising when my...
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    Genetics testing

    Hi
    My mum has had MND since March Ď18 (well thatís when symptoms started) and has progressed quickly but she copes amazingly. I am with her every step of the way (no pun intended 🙄) so know her...
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    Headphones to use with NIV??

    Hi everyone. Hope youíre all as well as possible. Mum has started needing NIV for a few hours in the day as well as overnight. Sheís thinking of listening to audiobooks while on it during the day....
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    Hi rachel123 - just wondering how you are doing?...

    Hi rachel123 - just wondering how you are doing? My mum also has MND and itís a lot to get your head around. How are you all coping now?
  7. Thread: Check in

    by Helen82
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    Check in

    Hi all
    The Carers forum has been a bit quiet lately so thoughts Iíd start a check in post to see how youíre all doing? 😊
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    Thanks Terry and Ellie. No mum hasnít been...

    Thanks Terry and Ellie. No mum hasnít been approved for funding yet. Itís still considered that her needs are social rather than medical but various professionals keep mentioning it so itís in the...
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    Continence issues

    Hi everyone
    I was wondering how those whose arms are affected manage to go to the toilet? Mum isnít incontinent as such but canít pull down her clothes anymore so she we need solutions to enable...
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    Thank you so much for all this advice - itís...

    Thank you so much for all this advice - itís amazing! Granted itíll take me a while to wade through it all but Iím up for a challenge 😉 haha. Mums looking like she may have changed her mind now so...
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    Nursing/care homes

    Evening all.
    Mums had some days recently where sheís really struggled to walk, even just to transfer from chair to chair. As she lives alone weíve unfortunately started talking about whether it is...
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    Thanks Broostine. I applied for continuing...

    Thanks Broostine. I applied for continuing healthcare but it was refused because they said mums needs are more social than medical (?!). But we met with a new care company this week who seem more in...
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    Thank you Devonmaid. Are direct payments where...

    Thank you Devonmaid. Are direct payments where you find the carers yourself and employ them directly in a private arrangement rather than through a care company?
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    Thanks for your replies. My thoughts are that a...

    Thanks for your replies. My thoughts are that a personal assistant may be better and we may look at them being there more than the current carers. I donít think the care company would be sorry to see...
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    Mums care needs - advice please?

    Hi everyone. Hope you are all as well as can be. My head is spinning with thoughts of mums care needs and was hoping some insight from you all would help!

    Mum is struggling more to mobilise...
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    So sorry to hear of your PLS diagnosis. Weíve...

    So sorry to hear of your PLS diagnosis. Weíve only been dealing with PLS for a short time (just over a year - itís my mum who has it). Itís been overwhelming a lot of the time but I find this forum...
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    Carers support groups

    Has anyone been to a MNDA carers support group?im going to one on Wednesday and was just wondering what to expect cos I get really anxious in these situations! Thanks, Helen.
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    Thank you for your replies. This forum has been...

    Thank you for your replies. This forum has been really helpful because we've just been in a bubble with it all and trying to figure out what's going on step by step. Think I read somewhere that...
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    PLS experiences please?

    Hi everyone. I've just joined the forum for advice and support to help me to support my mum. I'll not go too much into the background story, I don't think it's fair when it's not my story to tell....
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