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Not very chatty, sorry

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    Not very chatty, sorry

    Just wanted to say I'm really struggling at the moment and sorry for not being chatty. I'm not being treated well. I'm in an absolute nightmare situation at the moment and very confused. I've decided to step away from many things, cancelled all my appointments and stopped opening letters.

    I'll probably still visit the forum, but for now this Chinnock is grounded xx
    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

    #2
    Big hugs TinyLady
    You take the break you need my lovely.
    If you need some light relief or a shoulder to cry on - you know where to find us ❤️
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Still walking and talking, and wondering what the future will bring.

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      #3
      Thanks Eddie. I'm sure I'll bounce back. Just feel like all trust is gone at the moment x
      Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

      Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

      Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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        #4
        I know how you feel. Xx x
        when i can think of something profound i will update this.

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          #5
          TinyLady so sorry to hear you are still struggling. I hope things improve for you very soon. xx
          Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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            #6
            TinyLady so sorry to hear that. I’m sure we’ll all have times like that. Thinking of you…

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              #7
              Hi TinyLady, I had a bit of a melt down the other day - just a single misjudged comment set me off crying inconsolably for best part of that day and night, so it's no wonder after what you have been posting recently about trying to get some help and not receiving any- that you need to step back and chill for awhile - I wonder if you have an AV (Association Volunteer) in your area or could you request one from the mnd association? Mine visits but they can help online or by phone, meet you somewhere, etc and maybe they would be able to untangle why you are confused and how to help? They aren't medical but know where to try to get answers or help. Just a listening ear helps so much too. I felt so much better and supported after her visit. Xxx

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                #8
                So sorry TL, sending a massive hug xxxx

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                  #9
                  You do what you need to do, Tiny, you know where to find us 🤗🤗
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                    #10
                    TinyLady hope you feel more positive soon x
                    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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                      #11
                      TinyLady sorry your feeling down. Hope you pick up very soon. Take care xx

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                        #12
                        Cinderella - thank you. I did have an AV but she (later admitted by her) was finding too much was going on and never came back!

                        Thank you for the hugs and kindness as always. I'm fairly positive. But everything is falling apart around me. So I've cancelled it all and waiting until end of September to find out what on earth is going on. At that point hopefully I will be able to explain, because right now I'm too confused and angry xx
                        Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                        Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                        Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                          #13
                          TinyLady I certainly understand where you are and don't blame you feeling like this. I feel quiet also. im just angry that you are not getting the basic care you so deserve.

                          Thanks for letting us know. Xx
                          Diagnosed May 2021 bulbar onset als.

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                            #14
                            I'm lost as well. 3 times my husband has been asked about dnr. Working on the assumption he isnt about to need critical help like now I don't see why they should have brought the subject up when I have repeatedly stated his diagnosis (dementia) and also stated I have his medical lpa. Imagine discussing this with someone who is confused, he knows something is up, but asking about resuscitation has probably frightened the life out of him. So I made me feelings felt. If that wasn't enough bringing up the subject of him not being able to return home because the flat is a big risk to him and I have no equipment. Imagine how I felt arguing the case for NOT bringing my husband home infront of him.

                            Its repeating myself over and over, wards not sharing information. Thankfully our mnd nurse got involved and told them what's what.

                            We are told not to get angry with the medical profession but sometimes I find there lack of compassion hard to take. It doesn't take much to decide if someone is having trouble comprehending what is going on and I don't have any medical training. I couldn't wait to leave the hospital yesterday and I'm not looking forward to going back. Which makes me feel even worse I'm leaving him there.

                            🙄
                            when i can think of something profound i will update this.

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                              #15
                              Oh TinyLady. I'm so sorry you are not getting the care you need and deserve.

                              Thank you for letting us know. Its understandable how you feel and you know where to find us when you're ready.

                              Love and hugs to you xxx🤗😘❤

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