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Type: Posts; User: Polly

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  1. Replies
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    Hi Debbie, yes, the physio said they will only...

    Hi Debbie, yes, the physio said they will only provide this one. I would just have appreciated some guidance, rather than her saying go and try some out. He’s not up to it! I guess this wheelchair...
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    Hi Debbie, I don’t want to sound ungrateful as...

    Hi Debbie, I don’t want to sound ungrateful as the physio has been helpful in lots of other ways. That’s a very kind offer. We are in the West Midlands.
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    Lightweight wheelchair

    My husband is still fairly mobile, but the long walk from car park to clinic to see the dietician today was very tiring for him. The physio ordered a wheelchair but itís too heavy for me to lift in...
  4. Thread: Speech apps

    by Polly
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    Speech apps

    Although we are coping pretty well with my husbandís speech, at times I struggle with certain words, particularly later in the day when he gets tired. The speech therapist mentioned two speech apps...
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    Ellie, the physio got him to do various things...

    Ellie, the physio got him to do various things with his feet, and as his movements were so strong, it is very unlikely to be foot drop. But the back problem is twisting his pelvis and affecting his...
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    Thanks for all your support. It went very well. ...

    Thanks for all your support. It went very well. They were friendly, helpful and gave a lot of good advice. They don’t feel that it is foot drop that led to his falls, but more likely were caused...
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    Thanks Lynne! X

    Thanks Lynne! X
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    You are right Terry, but that’s not really the...

    You are right Terry, but that’s not really the problem. I know I overthink things, but I’m thinking of bigger things like access upstairs, and what if we need a bathroom downstairs. It’s very hard...
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    Nervous about tomorrow

    Tomorrow we have a physio and OT visit. I must confess that I am quite apprehensive. As no one has any idea of how quickly MND will progress, I have no idea of how this will impact on our house,...
  10. Thread: A bad day

    by Polly
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    Success! A call today from the community physio....

    Success! A call today from the community physio. She will visit next week along with an occupational therapist. It’s such a relief to know that local support is now forthcoming.
  11. Thread: A bad day

    by Polly
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    Thank you everyone, you have given useful advice...

    Thank you everyone, you have given useful advice and support.

    Mandy, my husband definitely sounds like yours! I want him to carry on and do things but I’d like him to pace himself, and not do so...
  12. Thread: A bad day

    by Polly
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    Reading this again I apologise as I realise that...

    Reading this again I apologise as I realise that many of you are coping with much worse problems. It’s just that it’s happened so quickly and seems to be developing so rapidly, I can’t believe that...
  13. Thread: A bad day

    by Polly
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    A bad day

    4 weeks since diagnosis. 3 weeks since visit from specialist nurse, when it seemed there would be all sorts of support. 2 weeks since assessment clinic prior to referral to local services. Since...
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    Thanks Kayleigh Coincidentally we received a...

    Thanks Kayleigh

    Coincidentally we received a letter from MNDA this morning about this very thing.
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    No contact with visitors as yet. It’s very...

    No contact with visitors as yet. It’s very difficult to start at one hospital trust, be transferred to another, then back for local support services. Hopefully things get sorted ASAP.
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    Hi Mandy Our husbands certainly sound very...

    Hi Mandy

    Our husbands certainly sound very much alike! Mine also likes to keep busy. Although he still works in the garden, it’s frustrating for him not to be able to do anything more physical. ...
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    Emotional lability

    I have realised that emotional lability was almost the first sign that my husband had MND. We also have a very disabled granddaughter, but she is very happy and gets fits of the giggles. On a few...
  18. Thread: First visit

    by Polly
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    Wailywoo, I totally get that it is easier to fit...

    Wailywoo, I totally get that it is easier to fit a PEG early, before it is actually needed. It’s just that I did feel quite intimidated, especially as it wasn’t a one-to-one conversation, as there...
  19. Thread: First visit

    by Polly
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    Hi Lynne I very much doubt that my husband...

    Hi Lynne

    I very much doubt that my husband will look at the forum. We all deal with problems in our own way and some people want to know more than others. We have a lovely local speech therapist...
  20. Thread: First visit

    by Polly
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    3,689

    Ellie, I know what you are saying so tactfully! ...

    Ellie, I know what you are saying so tactfully! This type of MND develops more quickly. You are right though, a gentler approach would have helped.
  21. Thread: First visit

    by Polly
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    Thank you Barry, Kayleigh and Ellie. The...

    Thank you Barry, Kayleigh and Ellie. The diagnosis is bulbar onset MND and yes, he had EMG tests.

    At the moment we are being referred back to our local health authority for ongoing care, which...
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    Hi Wailywoo, I’m very new here. I just wanted...

    Hi Wailywoo, I’m very new here. I just wanted to say that I have noticed the same thing about my husband. We have never had major rows, but like most of us, at times he has been a bit niggly. But...
  23. Thread: First visit

    by Polly
    Replies
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    3,689

    First visit

    My husband was given the diagnosis almost 3 weeks ago. It came as a complete shock as the most likely cause of his slurred speech was myasthenia gravis. His way of dealing with it at the moment is...
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