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Thread: Hubby has MND symptoms but no diagnosis yet.

  1. #11
    Forum Member Twinkle's Avatar
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    Thanks Ellie, I'm hoping he recieves a 4 wheeled walker too. I'm sure they'll be the OT's department and they're not here until 24th Sept.

    We've installed Speak it on hubby's phone, but keys are small for his stubby fingers so we're treating him to a iPad soon.

  2. #12
    Forum Member Terry's Avatar
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    Hi Twinkle;

    -OT is the best person to ask for better walkers and other bit to help both of you.

    Contact Mnda connect directly and see if they can assist on getting a speech therapist sooner. They can sometimes help provide things as well.

    Love Terry

  3. #13
    Forum Member Twinkle's Avatar
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    Thanks Terry for the advice. Would they assist me though with no official diagnosis?

  4. #14
    Forum Member Lynne K's Avatar
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    Hi Twinkle. Sorry that you find yourself here. It's not good about the long wait that your husband is having. I would suggest that you ask your gp to fast track your husband or go to a+e next time he falls to find a cause quickly. He ought get Riluzole very quickly.
    Last edited by Lynne K; 14th September 2018 at 21:03.

  5. #15
    Forum Member Terry's Avatar
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    Hi twinkle,

    The OT should help, I'm not sure about Mnda Connect, you can only ask.

    Love Terry

  6. #16
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    Hi Twinkle,

    My husband has lost his speech and has an ipad but as Terry said it can be a little slow so he has taken to using a boogie board which is like an etch a sketch if you can remember them, type in boogie board in a search engine and they come up for you to buy,

    Mandy

  7. #17
    Forum Member Twinkle's Avatar
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    Quote Originally Posted by Mandy124 View Post
    Hi Twinkle,

    My husband has lost his speech and has an ipad but as Terry said it can be a little slow so he has taken to using a boogie board which is like an etch a sketch if you can remember them, type in boogie board in a search engine and they come up for you to buy,

    Mandy
    Thanks Mandy,

    Are the boards just for kids?

    I think my hubby woukd prefer a board to a iPad now that you've mentioned it. I didn't know about the boards.

  8. #18
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    Hi Twinkle,

    I had a similar night time problem.

    "...The walker helps so much at night as hubby has prostrate problems so he's up about 4 times during the night and he'd previously only used the walking stick and I worried so much about him coming out of a sleep to walk to the loo just using a stick..."

    I went through the whole range of available technologies to help reduce falls when going to the loo. I eventually settled on a long term solution - supra-pubic catheter. I no longer have to take multiple trips to the loo other than to empty my urinary bag.

    On the subject of urinary bags - I was fitted with leg bags and used a larger night bag - that was OK but the downside was I was 'tied to a single position in bed - leg tubes are rather restrictive if you need to turn.

    Solution - I use a Belly Bag now - with a long tube so that I can empty it myself into the loo.

    I was wondering if that solution would help your other half - ask the GP and see if a referral to a urologist will prove useful. Simple operation - all done in a day. But the freedom I have makes it well worth it.

    Kind regards

    Chas

  9. #19
    Forum Member Twinkle's Avatar
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    Chas,

    My hubby had a catheter a couple of years ago due to an infection. He coped well with it as did I, no broken sleep to deal with.

    When the time comes and hubby's mobilty reduces then I guess it'll be time for a catheter.

    Thanks for replying x

  10. #20
    Forum Member Twinkle's Avatar
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    Quote Originally Posted by shrew View Post
    WelcomeTwinke. We are fairly new too.Husband diagnosed 17/7 . Because he was in hosptal having tests he got his diagnosis a few hours after EMG
    That's good that your husband received his results straightaway. I think the waiting of appointments at different departments for months have tested us as a family.

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