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  1. Replies
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    This is similar to the one I had. It fits under...

    This is similar to the one I had. It fits under the mattress

    https://www.completecareshop.co.uk/beds-and-bedding/bed-grab-rails/economy-bed-grab-rail

    Hope you get something sorted, a good...
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    This one is a little easier to turn on, by...

    This one is a little easier to turn on, by grabbing the headboard spaced out wooden pieces and pushing with my feet and body as best I can. But it's getting more difficult.

    Wendylett sheets are...
  3. Thread: RIP Fru's Ed

    by miranda
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    So sorry to see this. Thinking of you and your...

    So sorry to see this. Thinking of you and your family.
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    Oh you are awful but we like it !!! (I believe...

    Oh you are awful but we like it !!! (I believe this was a. Catchphrase years ago but don't know who said it)
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    I'm not sure if I've got Deb and Debbie mixed up...

    I'm not sure if I've got Deb and Debbie mixed up but just FYI it's important to test drive a WAV sitting in the powerchair, particularly if you are tall. Sorry if I've misunderstood and if this is...
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    2019 London marathon

    Thank you to those 157 people running to raise awareness and funds for the MND association. They are hoping to raise 350,000.
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    Jude - even though your mum no longer goes to the...

    Jude - even though your mum no longer goes to the oxford clinic, you can still liaise with them by phone or email.
    Following Ellie's suggestion and my previous comment, I'm sure Rachael Marsden, the...
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    I use a heated wheatbag. It's heated in a...

    I use a heated wheatbag.
    It's heated in a microwave and needs caution as they can get very hot. I've also had acupuncture which has been very effective.
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    Have you taken on a new job Terry? Xx

    Have you taken on a new job Terry? Xx
  10. Is your mum under the care of the Oxford MND...

    Is your mum under the care of the Oxford MND centre at John Radcliffe Hospital? Rachael Marsden the specialist nurse clinic co-ordinator might be able to advise you.
  11. Thread: Fed up

    by miranda
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    7,830

    Wonderful that modern technology worked for you...

    Wonderful that modern technology worked for you and also that you have the videos.
  12. Replies
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    Thanks Terry X

    Thanks Terry X
  13. Thread: Ideas of food

    by miranda
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    IT sounds crazy but I find toast easier to eat. ...

    IT sounds crazy but I find toast easier to eat. It doesn't "clag up" in the roof of my mouth.
  14. Thread: Fed up

    by miranda
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    Will be thinking of you and your family tomorrow.

    Will be thinking of you and your family tomorrow.
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    As with most aspects of MND, progression is...

    As with most aspects of MND, progression is unpredictable. I had my PEG fitted 12 years ago on the basis of "sooner rather than later". Four years ago a new one was fitted because no one knew if it...
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    How lovely to hear from you with your good news

    How lovely to hear from you with your good news
  17. Thread: Soft food diet

    by miranda
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    1,387

    Savoury fillings - cream cheese, tuna mayo,...

    Savoury fillings - cream cheese, tuna mayo, sardines, grated cheese, smoked salmon, IKEA jars of herring.
    Sweet fillings - mashed banana, fruit, creme fraich, Nutella, honey, maple syrup and, of...
  18. Thread: Soft food diet

    by miranda
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    1,387

    Soft food diet

    There are already lots of ideas for soft foods on the forum and MNDA have some brilliant publications but I have just discovered ready made pancakes!! Just heat in microwave for a few seconds then...
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    Make sure you get all the VAT exemptions you are...

    Make sure you get all the VAT exemptions you are entitled to for the build.
  20. Thread: Rome

    by miranda
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    A couple of years ago I went to Portugal -...

    A couple of years ago I went to Portugal - there's lots of cobbled areas there too. It's ok unless you have a full bladder!!!!!
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    Perfect! Actually saw your post just in time....

    Perfect! Actually saw your post just in time. Lovely to Carole's photo again when I open this thread xx
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    https://www.accessable.co.uk/ This is another...

    https://www.accessable.co.uk/ This is another useful website.
  23. Thread: Plight

    by miranda
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    Jeannie it's great to hear from you but sorry to...

    Jeannie it's great to hear from you but sorry to hear about your situation. As Terry says, your advice and experience has been missed. Hopefully karma will happen.
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    As well as being involved in research while we...

    As well as being involved in research while we are still alive, we can donate our brain and spinal cord after death. MNDA have a resource sheet 'Tissue Donation'. Obviously it's important to...
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    I've just had to change my GPs practice because...

    I've just had to change my GPs practice because it's a nightmare a) to book a downstairs room and b) to get my wheelchair round the tight corners. Even had my flu jab n the waiting room! (It was...
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