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Type: Posts; User: Lynne K

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  1. Thread: New

    by Lynne K
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    4,880

    I've got two of those braces, one that was given...

    I've got two of those braces, one that was given to me by the NHS and one that I bought. I didn't use them much because the right one hurt my arthritic ankle. They are great though if you don't have...
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    Steve, I'm really sorry for your loss but it was...

    Steve, I'm really sorry for your loss but it was the best possible end that D was in your arms with family in attendance. Take care all of you. You'll be in my thoughts, Lynne x
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    Hi Panniertank and thanks. I am alone for two of...

    Hi Panniertank and thanks. I am alone for two of three evenings a week when Steve goes to play his fiddle with other musicians. Occasionally it's more than that. I'm on my own each morning for about...
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    Thanks for the info Dina. The trial that's...

    Thanks for the info Dina. The trial that's recruiting now is called Tudca. To get on it you have to be up to 18mths since diagnosis and do not have any swallowing issues. I can't join that because...
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    Yes Ellie. I asked my husband a couple of months...

    Yes Ellie. I asked my husband a couple of months ago about changing our bathroom door to one that folds. We had one like that on holiday and it was much easier. My husband didn't agree. Also I would...
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    Hi MusicMansWife, is there any chance that your...

    Hi MusicMansWife, is there any chance that your bathroom door can be widened so that his wheelchair fits through? Lynne
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    Hi Debbie. Thanks for all your information. I...

    Hi Debbie. Thanks for all your information. I don't have a clue how I'll be able to open doors when sitting in my wheelchair.

    My neurologist suggested changing my wheelchair for a narrower one,...
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    Hi Andy. We moved November 2018 to this 2...

    Hi Andy. We moved November 2018 to this 2 bedroomed ground floor adapted flat. Our previous home was bigger and better downstairs but 3 sets of steps/stairs, the main staircase, steps into the...
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    Thanks Dina. I'll keep you all informed about the...

    Thanks Dina. I'll keep you all informed about the trial when I have more information. My neurologist told me that the lead researcher is based in Edinburgh and they have a very good reputation about...
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    Changes are afoot.

    I had my 3 month check at the MND clinic in Salford today. My neurologist was happy with me, as always. My breathing tests and bloods were good. But our discussion about how my walking has become has...
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    Hi TapG1, I had a tick in my face on and off for...

    Hi TapG1, I had a tick in my face on and off for many years pre MND. I accepted that it was stress.

    About leading up to diagnosis no ticks, twitching or cramps. My early problem before diagnosis ...
  12. Thread: New

    by Lynne K
    Replies
    39
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    4,880

    Hi Jo Jo. I'm sorry about your partners fall....

    Hi Jo Jo. I'm sorry about your partners fall. There's straps (not the correct term but descriptive enough) that can help with foot drops. I think that your partner needs to move on from crutches to a...
  13. Thread: Hello from me

    by Lynne K
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    Hi Lesley, very sorry for your mums recent...

    Hi Lesley, very sorry for your mums recent diagnosis. You must all feel overwhelmed at the moment. You have found a good place to find support, information and sign posting to useful things.

    It...
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    About hospital TapG1, on a positive note at least...

    About hospital TapG1, on a positive note at least you are in a good place to do plenty of tests to get to the bottom of your troubles. I hope that they are treating you well and that you get a chance...
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    Me too Panniertank, I really miss driving and...

    Me too Panniertank, I really miss driving and doing my last job as a driving instructor. As Dina says about keep using the service to get you out from your own four walls. I get fed up staying in too...
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    Thanks Sarah, I'm sure that we will enjoy the...

    Thanks Sarah, I'm sure that we will enjoy the Dales. Good luck with everything x
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    No need to apologise Sarah. We've had difficult...

    No need to apologise Sarah. We've had difficult days, sometimes weeks but we usually come out the other side. Simple things like me wanting to go with him to the shops he reacts to. He often mentions...
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    Thanks Kayleigh x

    Thanks Kayleigh x
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    Well done you Dina. I know the feeling but a...

    Well done you Dina. I know the feeling but a great deal of learning has been done in our home by my important other so the house is tidy'ish, cupboards tidy and washing done regularly (less...
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    Kayleigh, I'm hoping that I can join the trial...

    Kayleigh, I'm hoping that I can join the trial despite over 2 years since my diagnosis. My only concern is having to have no swallowing issues, a score of 4 on the ALSFRS-R Swallowing Sub Category. I...
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    Hi Mickey18, sorry that you are half expecting an...

    Hi Mickey18, sorry that you are half expecting an MND diagnosis. What a worry. I hope that your neurology appointment comes quickly so that you find out one way or another.

    About night time...
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    I just looked online for an ALSFRS-R Scale. 4 is...

    I just looked online for an ALSFRS-R Scale. 4 is the 'normal'function and '0' the worst. Lynne
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    Does anybody know what 4 is for swallowing on the...

    Does anybody know what 4 is for swallowing on the ALSFRS-R Sub Category scale please. Thanks, Lynne
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    Thanks Ellie. I'm seeing my neurologist at her...

    Thanks Ellie. I'm seeing my neurologist at her Salford clinic Wednesday 11th December, that's 2 weeks away. I'll ask her. I hope that it doesn't book up by then. Thanks, Lynne
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    How do you sign up Ellie? I clicked on your link...

    How do you sign up Ellie? I clicked on your link and couldn't find anywhere to ask to join. I'd go to Salford. Thanks, Lynne
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