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Being looked at as though mentally defective

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    Being looked at as though mentally defective

    I think one of the cruellest things about this disease for me personally is having to avoid chatting or conversations with people I do not know well from previous experiences as my voice has deteriorated I have found people are either nodding or saying ''yes'' to what I have said or just not responding to what I am saying because they cannot understand me. One particular person who I have bumped into a couple of times socially just stared at me last weekend as though I was mentally defective when I tried to chat about the lack of queuing for a coffee. I felt so awful as though he obviously thought I was mentally defective from the look on his face and it was quite plain he hadn't understood a word I said. Maybe we should carry a sticker pad around with us explaining our condition.

    I had business cards printed with I'm mute, not deaf and not stupid 😉🤗😁😂xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      Love it Matthew


        My husband Thomas

        Said the thing that drives him crazy is people ignoring what he is saying.

        His voice is getting softer.

        Sorry for your experience Worsleybird
        Thomas has only gone out for hospital appointments due to ongoing home access and things.

        We are happy hermits, at the moment but we do have each other during these strange times

        Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.


          Its so irritating when people especially carer’s
          insist on shouting and even worse when they call you ‘sweet heart’
          My partne


            I actually don't think its just if you cant speak either.............I have noticed when Albert has his MDT meeting everybody speaks to me and not him - he's quite able to speak and has full mental capacity..............I've started to not give them eye contact.........they should be speaking to him not me

            I hate that

            Husband Albert diagnosed PMA Feb 21


              Hi all, I can still speak but it’s variable.One neighbour patted me on the head😂.I didn’t take offence as I think he just felt awkward.
              It is frustrating as we are mentally capable of our own views etc.Not sure how to tackle life when I can’t speak.My husband always asks people to give me time to respond if I can’t get my words out quickly.
              Then I meet many people who step aside when I am in my wheelchair or offer to help by holding doors open etc.
              I think when I see consultants on planned appointments I will while able use computer to create a word document with what I want him to know and my questions to speed things up a bit.
              I find it’s worse on the phone if I am on a day where speech is slurred or weak.

              Maybe Like Matthew I will have cards printed saying I have MND and unable to speak but comprehend everything.My husband who is always with me or my sister in law are quite capable of telling people to address me direct.
              Wonder how others manage???
              Best wishes