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MND bulbar onset experience

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    MND bulbar onset experience

    Diagnostic 29/06/22 MND bulbar onset
    My symptoms start first week April this year one week after the first jab for covid. Less 3 months I can't eat, drink and almost not talk, losted more than 10kg weight. Struggling carry my shop bags. They say my life will be finished soon (with a different nice words of course).
    Because of the rapid progression I'm feeling about my illness.
    The more I read about the subject the more confused I get. I feel lost between doubt and/or lack of knowledge about all this. I try to understand or perhaps identify similarities between other people who also go beyond this stage. I know that as with everything in life, the way each one overcomes the symptoms is different. We are different, body and mind. But there are always some similarities that help us to realize that after all we are not alone in this fight. Understanding the experience of each one of us and knowing how each one tries to overcome this, to get new ideas and/or concepts that give us a light at the end of the tunnel. If possible, I want you to tell me what symptoms you are facing and how they have evolved. What do you do to make your life easier and mainly how are you dealing with the disease (mentally).
    ADM. If this post isn't allowed please delete.

    #2
    Bulbar here too. Jan 2022 is my three year anniversary. Back then voice changed move on to today and my voice has completely gone. If life only gives you lemons make lemonade 😁🤗😘😉xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Hello Mmsm . I understand how confusing everything is; some of us have slow progression, and some fast. However, it can be that after a quick downhill , you will stabilise for years. No-one can tell you their own future, let alone someone elses. Ask your quesions and several people will probably reply.
      Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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        #4
        Sympathies, there is so much to learn about mnd, and you have only had a short time to look into it all. You are certainly not on your own in this forum, but as people have said, we are all different, and speed varies so much and can alter from faster to slower or vice versa. I find reading about other's experience on here, helps me prepare for possible challenges as they arise, whilst knowing that my path may be different. I am ALS bulbar onset, diagnosed July last year. I have a PEG inserted but trying to hang on to eating for as long as I can, but choking on food and drink more and more. My speech is becoming more unintelligible, so am looking to other ways of communicating. Step at a time. Hope you can find some comfort and knowledge from this forum. Wishing you all the best, Heather xx
        Diagnosed July 2020, ALS bulbar onset.

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          #5
          matthew55
          Thank you for share your experience 😊
          ​​​I like lemons 😅

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            #6
            Heather R thank you for share your experience with me.
            This is very new for me and admitted scares as well. All my life I'm a realistic person.
            try understand a little more about others experiences give me some "comfort" maybe this sounds wrong. I know we are not alone but I never met nobody in my life with MND. This forum its amazing 😊

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