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Thread: Hello

  1. #21
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    Quote Originally Posted by Kateyloo42 View Post
    Hi, My Mum has pho and was diagnosed a year ago. At that time she retired from her hairdressing business of 25 years because she could no longer physically do it. A year on and she has a peg feed and a wheelchair and it is very difficult to understand what she says. I think her faith keeps her going. I am not at all religious despite being raised Catholic but I believe that whatever keeps you going is a good thing. Whatever sees you through each day xx
    Hi kateyloo42, sorry to hear about your mum, have you spoken to her speach therapist about getting her a speaking aid, there are so many out there. That is if your mum
    Wishes to use one.

  2. #22
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    Yes , there have been several who have lived quite a while .I go to several forum's and have talked to several by posting in forums.My husband has PBP an in America the VA recognizes it as ALS. My husband hasn't spoken in over a year , and has a mic- key for taking water , meds and supplements. He is still quite active , but losing the ability to express himself was a huge blow.He does use a text to talk , but I still miss his voice. I'm so sorry you have to go through this beast too.

  3. #23
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    Hi wife of Jim �� I miss my husbands voice, I struggle sometimes to remember how he use to sound, he hasn’t spoken in over 4 years.
    His Tobii eye gazer helps to give us a glimpse of his sense of humour.
    You need a lot of patience with the machine, but predicted txt speeds things up.
    Sam is very much in control of what he wants each day.
    This has helped him a lot.

    MND entered our home, with out questioning, race or religion, we now have to find a way to live, make room for change, not giving us a choice in the matter.

    I miss so much, things we use to do together, just the little things, holding each other hands, and feeling him squeeze mine, then turn and gaze into my eyes, going for walks, laughing out loud. he still has a cheeky smile, and at times I glimpse his eyes starring at me.
    We make the most of the time we have together. This cold weather has stopped us from going out, we have been house bound since November, trying to avoid catching any nasty chest infections, don’t know how many more he can fight off.

  4. #24
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    My husband celebrated his 54th birthday on the 8th March. �� �� ��
    We had a lovely day, it’s hard to buy presents, so not many brought, but spend a lot of time creating memories ��❣️

  5. #25
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    Portable Hoist??

    Does anyone know how we can get a portable hoist??
    Secondhand or purchase??
    Thank you

  6. #26
    Forum Member Ellie's Avatar
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    Hi M4,

    I personally don't have a recommendation of what portable hoist is good - my hoist isn't portable by any means! - if someone here can't give you personal recommendations, maybe your OT can?

    Does your husband already use a hoist? If he does and you're happy with it, maybe that brand also make portable versions too. If he doesn't use a hoist, speak to his OT who'll arrange a hoist for him if it's necessary, and may give a portable type, if appropriate.

    If you're buying one, there are several reputable online mobility stores, and the usual suspects for used ones - ebay, preloved, Gumtree etc (best to see it first), but you need to know what type of hoist works best for your husband.

    Good luck,
    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #27
    Forum Member Terry's Avatar
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    Hi M4;

    Ellie gives some excellent advice, there are several on Ebay that fold up but try and see, use first.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  8. #28
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    Thank you Ellie. I will make contact with our OT.
    Distance can affect how long my hubby can stay out, as he becomes uncomfortable in his chair.

    We will need to use http://changingplaces.uktoiletmap.org/
    Until we are able to purchase one. Plan our journey ahead.

  9. #29
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    Hi Terry
    Thank you for your reply.

    Iíve told my hubby, we will work on getting one, IV elooked in line.
    My hubby uses a Oxford 180 hoist, so will try and get a similar floor hoist. 😊

  10. #30
    Forum Member Terry's Avatar
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    Quote Originally Posted by M4GK View Post
    Thank you Ellie. I will make contact with our OT.
    Distance can affect how long my hubby can stay out, as he becomes uncomfortable in his chair.

    We will need to use http://changingplaces.uktoiletmap.org/
    Until we are able to purchase one. Plan our journey ahead.
    What an excellent link, M4GK;

    I never knew that so many hoist loos where around.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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