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    Always question anyone about anything

    Yesterday I was taken to Wigan A&E with breathing problems. When I got there, no was concerned that I was gasping for air. So along comes the doctor saying my bloods and chest X-ray were clear so nothing was wrong. At this moment I had a little load of phlegm appear at the back of my throat and get stuck there and, with a dry mouth, unable to swallow. The doctor finally became concerned and at my request got and it suction. Despite me writing my condition numerous times he got so worried about me being unable to clear secretions that he wanted to keep me overnight for observation. I persuaded him that my problems had vanished. He agreed to send me home. Had I been someone else the consequences could have been horrendous. Two lessons here folks. Never assume that health professionals have a clue about MND and always questions whether they are a nurse, doctor or consultant. They are not Gods representative on earth. Trust me
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    #2
    Scary stuff Matthew. Well done to you for getting your point across to the doc. Hopefully he learnt a valuable lesson yesterday.

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      #3
      Think everyone should have paperwork with info about their condition. Would save time possibly a life.

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        #4
        Hi Matthew,
        I was advised to take my DNAR/Respect form if I need to go to a general hospital.However I do recall previously you said that just because you had a DNAR form the hospital staff left you when you had breathing problems.
        I guess many health professionals in a hospital setting may not have encountered MND before or lack understanding of how it impacts on our respiratory systems.
        It must be all the more frustrating and frightening when you don’t have the ability to talk.
        Hope you are feeling better today.
        Best wishes
        Mary.

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          #5
          Well done Matthew!

          Did you have a carer with you?

          How did you communicate?

          Doug

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            #6
            Hello Matthew

            Reading that is scary, glad you are ok, and it is really hard for me to know that any medical staff aren't necessarily going to know what to do in a breathing crisis like that... oh dear, makes me want to sit with Dad 24/7, which would hugely aggravate him...
            Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

            Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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              #7
              I don't have carers I have a boogie board 👍x
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                #8
                Matthew I echo your comments about lack of knowledge of this disease. When I attended A&E one time following a fall the doctor asked what caused my tumble and I replied “lack of balance”. The doctor said that poor balance is not a symptom of MND so I politely told him to look on the MNDA website.
                I’m going to do this even if it kills me!

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                  #9
                  Hi Barry , it’s unbelievable that a doctor didn’t realise MND can lead to balance problems!!!
                  Feel like I need to carry something in my bag explaining what MND is when I go into hospital for a PEG fitted.The respiratory team reassured me the ward I will be on are up to speed on MND...let’s hope so!
                  Best wishes
                  Mary

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                    #10
                    Scary indeed for anyone with MND going into any hospital. The doctor/consultant from Wythenshaw rang me (about my request to have a a pelvic catheter) to say that she was going to refer me to the main hospital in Salford and not do the procedure in Wythenshaw where everybody has experience of MND. I told her that I’d be scared of them now knowing how to help me and not have the time to give me enough help. She told me not to worry and that they’ll take good care of me. I wasn’t convinced and Mathew’s experience vindicates my fears. It fills me with trepidation. I still haven’t received an appointment from the department who does these procedures yet. I got notification about they’d received a referral but that was weeks ago.

                    I hope the you are ok without carers at home Mathew. Are you going to apply for some? Love Lynne x
                    Last edited by Lynne K; 16 May 2021, 16:09.
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.

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                      #11
                      Hi Lynne, it’s hard enough going into hospital without fear kicking in.I guess not everyone has a negative experience .
                      Really hope you get your appointment soon.Maybe when you get booked in you can explain your care needs..trouble is nurses work shifts so have to hope information is passed on.We need some forum members to say if they had really good experiences of hospital care.
                      Best wishes
                      Mary

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                        #12
                        I’ve been thinking about this since Matthew raised the subject. We have a right to choose the hospital for treatment so if we have a scheduled surgery or A&E admission then we should ask our GP/Paramedics to request treatment at a hospital with an MND care facility. Under this scenario we would have someone on hand who understands our condition. This is of course dependent on where you live.
                        I’m going to do this even if it kills me!

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                          #13
                          That's awful Matthew yet again. MND really isn't that rare. Why don't our Dr's and nurses know what to look out for?
                          I think that it is a good idea to type up some brief notes about what does and doesn't work and common problems that affect us at that time. For example; support needed for neck and keep head upright to prevent choking. Keeping the bed on an angle to help breathing.

                          Many more things that are important.

                          Food for thought

                          Happy Sunday everyone xx

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                            #14
                            Originally posted by Mary C View Post
                            Hi Lynne, it’s hard enough going into hospital without fear kicking in.I guess not everyone has a negative experience .
                            Really hope you get your appointment soon.Maybe when you get booked in you can explain your care needs..trouble is nurses work shifts so have to hope information is passed on.We need some forum members to say if they had really good experiences of hospital care.
                            Best wishes
                            Mary
                            I have always been very lucky when I have been in but my husband always stays with me. Word spreads and I usually get a visit from my neurologist. He always makes it clear that we must ask for him if we have any MND issues.

                            I think that a care sheet is a really good idea x xx Sarah

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                              #15
                              I don't have any carers at the moment and I welcome both sides of any subject. Nothing is more important to me.
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                              Comment

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