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Type: Posts; User: nicky

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    https://uk.virginmoneygiving.com/fundraiser-displa...

    https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=YvonnesSkydivingNutters&isTeam=true
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    Mum passed away in her sleep

    Mum passed away early hours this morning. Thank you all for being here you advice and listening ear has made this journey bearable. Love to you all nicky
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    Swollen red hot foot

    Hello all
    Mum keeps getting a swollen foot which is very red and hot it goes after a few hours. Today the heat spread up to her knee. No one seems to know what or why this is. Has anyone experienced...
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    Lina's marathon challenge

    My dads friend is raising money for mnda her name is Lina and she is doing 86 mile ultra marathon challenge. You can find her page at virginmoneygiving.com GOOD LUCK LiNA !
  5. Hello Helen, so sorry for your loss. It's great...

    Hello Helen, so sorry for your loss. It's great that you are pushing to make gps aware and I'm sure there will be lots of people with knowledge and ideas to help you. Getting a diagnosis as quick as...
  6. Thread: Hello everybody!

    by nicky
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    Hi Ashley, so glad you have written a post I know...

    Hi Ashley, so glad you have written a post I know it is a big step. We are going to the rowans coffee morning tomorrow, if Lisa is up for it, it would be nice to see you both. Best wishes nicky
  7. Thread: Who decides?

    by nicky
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    Hi jay I feel your anger and frustration. Would...

    Hi jay I feel your anger and frustration. Would the housing association your with be willing to adapt? Do you have a mnd association visitor? They maybe able to help you get another OT. My mum has...
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    Welcome I found calling the mnda and registering...

    Welcome
    I found calling the mnda and registering my mums details for the information pack and getting contact number for an association visitor was a great starting point. My mum needed aids to help...
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    Hi all, mum went in for rig 4th jan. after...

    Hi all, mum went in for rig 4th jan. after digging around for three hours they gave up trying. She now has 3 holes and no tube. The windeeze tablets were a great help. She's bruised and sore and not...
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    I am interested in everyone's story. It's nice...

    I am interested in everyone's story. It's nice when people write a brief summary in their profile, it makes it easier to find people with similar symptoms and it's nice to get to know the people your...
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    My mum is a big fan of thick and easy.

    My mum is a big fan of thick and easy.
  12. Thread: Very best wishes

    by nicky
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    Merry Christmas We are having a big family one,...

    Merry Christmas
    We are having a big family one, hoping to make some special memories. Wishing peace and love to all xxx
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    Hi gini Just an idea, my mum goes to a local...

    Hi gini
    Just an idea, my mum goes to a local hospice day care once a week, they try out all the aids and different hoists. When they find what works for her they contact the OT and she orders it for...
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    Gosh the worry of knowing what to do and when to...

    Gosh the worry of knowing what to do and when to do it. I hope normal rhythm can be returned. Over time I have read posts with many suffering with bowels. My mum is starting to struggle is it meds,...
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    Hi gini When changes happen slowly it gives you...

    Hi gini
    When changes happen slowly it gives you a chance to adapt and adjust but then these quick bursts of rapid deterioration can really make you dizzy. I'm not sure if it this time of year has an...
  16. Thread: New

    by nicky
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    Hi Susan I think terry has given a very informed...

    Hi Susan
    I think terry has given a very informed response. I would just like to add: have you got a association visitor? If not speak to Mnda connect. We have a lovely lady that comes out at least...
  17. Thread: Graham

    by nicky
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    Hi graham It took about 19 months for my mum to...

    Hi graham
    It took about 19 months for my mum to be diagnosed. We live in Hampshire, don't get me wrong when you get the right people the service is great, but for us in the early stages it was a non...
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    Rowans living well centre purbrook

    The centre opened Monday just gone. I took mum on Thursday and it was brilliant. It is open Monday to Friday 10am - 4pm.
    They offer: carers support, craft sessions, therapies, care planning,...
  19. Thread: Voice banking

    by nicky
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    Thank you all for such quick responses. Katrina...

    Thank you all for such quick responses. Katrina you are so lovely offering a donation, thank you but we will work it out. I will get back on to the salt team next week armed with information and will...
  20. Thread: Voice banking

    by nicky
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    Hi Barry I just rang the salt team about getting...

    Hi Barry I just rang the salt team about getting an iPad for mum. They said there was no funding and the family should club together to get her one. A bit disappointed how put out they sounded. Any...
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    Thank you again for all your comments. I took mum...

    Thank you again for all your comments. I took mum to the local hospice today, were she had the opportunity to speak to a counsellor. The thing that scares her most, is having a tube down her throat...
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    Thank you all. I feel a lot calmer now which will...

    Thank you all. I feel a lot calmer now which will definitely help mum relax. I hate when she studies my body language, especially when I'm just as clueless and scared as she is. If they gave her the...
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    Mum due to have rig fitted

    Mum was going to have a peg, but when she went in to have her breathing checked, they said it had deteriorated and would need a rig instead. She is petrified! I have know idea what to expect. Any...
  24. Thread: Voice banking

    by nicky
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    My mum wanted to do voice banking. A lovely lady...

    My mum wanted to do voice banking. A lovely lady called Kim came out to show how to do it, unfortunately we left it too late and her voice was not strong enough. Kim is now helping me to do it for...
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    It is my mum who has mnd. For me this forum has...

    It is my mum who has mnd. For me this forum has helped me to understand what's happening to her, how to make sure she gets what she needs and be prepared as possible for next stages. It has helped me...
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