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    Masks rule

    Hi all my arms are now pretty useless now can’t lift them above my shoulders but legs are fine. I’m sick of going into shops and being told to put a mask on and I physically can’t get to my ears to do this. Is there a MND exemption card or anything I could use as I’m not happy about explaining myself when I need things.
    thanks
    Wayne

    #2
    But don't you need the mask to protect yourself? I have asthma and I hear in the UK I could be exempt but I would rather wear it and try and protect myself.
    I can understand your problem of not being able to put it on. Perhaps someone could come up with a design of mask that would be more user friendly.
    when i can think of something profound i will update this.

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      #3
      Why would someone who is dying from a terminal illness want to protect themselves from Covoid? 🤔
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        Masks are not proven to work anyway but I agree with Matthew as COVID-19 is making my time with MND worse just like the other 4,999 people in the uk

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          #5
          House44 Wayne, you can download or print off an Exemption Badge for face coverings:
          This page explains what face coverings are, including what makes a good one, when to wear a face covering and exemptions from wearing one.


          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
          .

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            #6
            Hi Wayne,

            Sorry to hear of your difficulties. We are certainly living in very strange times at the moment.

            We do have our own excempt card available on our website here - https://www.mndassociation.org/about...d-coronavirus/

            Hope that helps,

            Forum Admin.
            Our working hours are Monday to Friday 8:30am until 5pm

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              #7
              I have a visor which I find a lot better, can't breathe in a mask
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                #8
                Same here Heather - my breathing is too bad to tolerate wearing a mask.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                .

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                  #9
                  I too have breathing difficulties and last week when I went for a hospital appointment I was told I had to wear one or the Dr wouldn’t see me 😕
                  Janette x

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                    #10
                    Here in Portugal you won't get inside the hospital without one. I agree with your feelings about covid but it's for everyone's sake that we try and limit the spread. The mask wearing might be futile but at least we are trying better than being told you can't go out. I don't like wearing one but have resigned to the fact that rules are rules. I hope things will ease off so we can have Christmas. 🎄
                    when i can think of something profound i will update this.

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                      #11
                      I had all hell released on my head going to my GP's surgery yesterday because I didn't have a mask. I do suffer from shortness of breath, and also speech problems, and if I get stressed my speech disintegrates to "bah bah mah ta" level. So when I said "I'm exempt" the receptionist couldn't understand me (try saying "exempt" when you have speech difficulties!) and started shouting at me to get out, which made things much, much worse. I got to bah bah mah ta instantly, and then, because I suffer badly from emotional lability, I started to cry. My husband was standing outside (even carers are not allowed in to our surgery!) and barged in and tore a strip off the receptionist. Anyway, I've subsequently loaded the exemption notice available from gov.uk on my phone so I can display it without having to try to shout or deal with stress/voice problems. At least it is a nice NHS blue, so clearly is linked to the medical side of things, and the print is large enough to see from a few feet away. Whether it will work next week when I go for a blood test, I don't know. I can but try!

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                        #12
                        It wasn't until I became disabled that I realized that disability awareness is zero no matter where people work.😠
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                        Comment


                          #13
                          Originally posted by matthew55 View Post
                          It wasn't until I became disabled that I realized that disability awareness is zero no matter where people work.😠
                          And MND awareness even less than zero.
                          Each day is made easier with a bit of humour.

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