Page 1 of 3 123 LastLast
Results 1 to 10 of 29

Thread: Hubby has MND symptoms but no diagnosis yet.

  1. #1
    Forum Member Twinkle's Avatar
    Join Date
    Aug 2018
    Posts
    31

    Hubby has MND symptoms but no diagnosis yet.

    Hello to one and all.

    I've been looking on this forum for a few weeks now as it's possible husband has MND. He's already had the EMG test, just waiting of the results.
    We have a OT and Physio appointment at the end of Sept.
    We've also been given a new wheelchair and a walker with 2 wheels. Let me tell you how grateful we was to receive the walker!! My hubby has had a few falls during the last few months, but he's had about 6 falls in the last 2 weeks through being more unsteady on his feet even whilst using his stick.
    Last week he fell on the stairs landing and crushed my hand against the wall with his fallen body weight. I was so lucky nothing was broken!!
    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. Now, I can relax a bit as the walker is a godsend for supporting him to the loo.

    We're also currently waiting of an assessment from Social Services for a stairlift.

    My hubby's problems started apparently in Nov 2017 when his friend recently told me that when he phoned hubby in Nov he thought he had been drinking alcohol as his speech was slurred. Well, this couldn't be true as hubby never drinks alcohol.
    It's funny how other people noticed some symptoms but his nearest and dearest didn't.
    I only noticed him talking slowly and walking in a stoop when he got up from the chair in January and we went to the Dr's and through some mis diagnosis from his Dr to different departments like ENT, TIA, Orthodontics, etc, he only got referred to Neurology beginning of July, and more waiting of an app up to Aug and the EMG test on Saturday.

    My husband's speech is deteriorating, I can understand some words, other people like his friends wouldn't be able to understand what he's saying so he's avoiding his mates and neighbours and prefers to stay indoors. He misses his speech so much, he was always talking to people!
    He also can't whistle a tune, whistle for his birds, call the cat, blow up a ballon, cough properly, doesn't snore anymore. He is eating well though, he has three meals a day and some snacks at night if hes feeling peckish and the odd Complan drink. He sometimes splutters water or his brew.


    I really like this forum, it's full of good advice and plain talk, also there's not much doom and gloom on here, people are positive.

    Hope you're all doing ok xxxx

    Btw, I've typed this out so many times then erased it as nothing is confirmed yet so I never posted an introduction.
    Last edited by Twinkle; 13th September 2018 at 00:34.

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    6,892
    Hi Twinkle and welcome to the forum,

    Sorry to hear about your husband and his problems.

    Not being able to talk is so hard but there are things out there to help. I hope that he has seen a speech therapist, if not get the specialist or his doctor to do a urgent referral. You can get cheep talking apps for all tablets and laptops. They are not great because of the time you take to type something out, it is out of date.

    Good that he has taken to a walker straight away, two wheeled one sounds like a zimmer frame type. They can supply more stable ones as well.

    Great introduction.

    Best wishes, 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.

  3. #3
    Hello sorry you find yourself here. Your husband is further along to diagnosis than I am I wish you both well.

  4. #4
    Forum Member
    Join Date
    Sep 2012
    Location
    USA
    Posts
    3,143
    Welcome Twinkle

    You, and your husband will find a lot of support, advice and knowledge here.

    All the best to the both of you in the days ahead.

    CCxox
    .

  5. #5
    Forum Member
    Join Date
    Jul 2018
    Posts
    52
    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

  6. #6
    Forum Member
    Join Date
    Dec 2017
    Location
    Holmfirth
    Posts
    112
    Hi Twinkle
    Welcome to the forum . It certainly sounds like MND but without the official diagnosis you a cannot move forward with anything. I hope you have a good family and friends to support you .

    Love Chris

  7. #7
    Forum Member Twinkle's Avatar
    Join Date
    Aug 2018
    Posts
    31
    Thanks Terry, Is it the OT who'll suggest more stable frames? The community nurse brought us the two wheeled frame.

  8. #8
    Forum Member Twinkle's Avatar
    Join Date
    Aug 2018
    Posts
    31
    Thank you all for your warm welcomes. At the moment we both have colds and hubby cant cough up his mucus. When I was browsing this forum I read and jotted down a members advice for medicine which helps to thin the mucus, phelm etc so I went to the chemist and one was recommended to me. It's definitely helping as he's not as chesty as me.

  9. #9
    Forum Member Twinkle's Avatar
    Join Date
    Aug 2018
    Posts
    31
    Terry, He's not seen any speech therapist. When he was slow talking from January onwards the Dr's thought hubby had a stroke and it was April when the Dentist suggested Speech Therapy. So we have to wait of an appointment with the Dr and she referred us. Since then we've had two letters saying they've not forgotten about him and that he's in the system. I phoned up and was shocked to know there over 100 people in front of him, maybe it's 90 now. Without a diagnosis everything moves slow concerning speech therapy. It's frustrating as I know all about voice banking and through Dr's not knowing what was wrong with hubby we've proberly lost the chance to record his voice to use on voice apps.

  10. #10
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,388
    Hi Twinkle and welcome.

    Sorry to hear about your husband's problems.

    I wonder if he'd use a bottle for his night time wees rather than attempting the 4x nightly unsafe trek to the loo? I know it's not one's top choice of how to wee, but the last thing either of you need is a 4 a.m. fall !

    Hopefully he'll get a 4-wheeled walker soon.

    Does he have a laptop/tablet?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •