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Early Bird Club

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    Morning everyone. I was contemplating what we could call our early morning club and came to the conclusion if the early bird catches the worm then the only option is the early worm club. Sort of doesn't sound quite so good but then I don't want to offend any worms. 😬
    when i can think of something profound i will update this.

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      Good morning. Don't think I'm ever awake this time of day/ night. Having a bad night and feeling a bit angry and frustrated by things. Also keep waking gasping for breath - can you have a panic attack in your sleep? Husband snoring away beside me and I just want to yell 'shut up"... but I can't 🤣

      Must try to sleep again....
      Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

      Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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        TinyLady

        I do think you can have panic attacks in your sleep. Or perhaps its dreaming about having a panic attack.

        I was awake earlier but went back to sleep. It's very windy and wet here. Not nice at all.

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

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          denise - I managed to get back to sleep but I feel especially tired today. Waiting for my carer but luckily my daughter doesn't have school this week. I need a nap already 🤣
          Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

          Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

          Comment


            TinyLady
            Anger and worry are so destructive of sleep aren’t they? And anxiety about breathing so easy to get, I have struggled with it too (and given medication to help). You have really been let down with support. Thanks I hope and trust you will find NIV really useful and reassuring. Hang on in there until your appointment 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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              TinyLady just seen your other post about getting it already. Hope you can sort out something you are happy with 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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                Heather R - yes, got the nippy yesterday so hopefully will start getting used to it soon. I'm so tired all the time rather than anxious. All I want to do is sleep.

                Last night was a real bad one for me, thankfully I'm usually a good sleeper. I just feel very unsupported (medically) a lot of the time, but not sure what I need. Reassurance probably. Someone to talk everything through with who listens, believes me and cares enough to help find solutions. In the middle of the night it can all feel overwhelming xx
                Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

                Comment


                  TinyLady i wish i could give you a hug. thats not nice feeling liike that. ive got the big chc meeting tomorrow and ive signed up for online yoga at 10am. im hoping it will calm me or it might endanger my moving parts so i dont get to go. either way im not looking forward to tomorrow. i want to be calm but dangerous. im thinking along the lines of those big cats that have been spotted around the country. im off to sharpen my teeth.
                  when i can think of something profound i will update this.

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                    20221024_153509.jpg
                    those were the days 🤓
                    when i can think of something profound i will update this.

                    Comment


                      TinyLady
                      “Reassurance probably. Someone to talk everything through with who listens, believes me and cares enough to help find solutions.”
                      Who wouldn’t want that in your position? It’s a tragedy that you haven’t got that at the moment. Hugs for you x
                      denise go girl, we’ll be thinking of you tomorrow x
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                      Comment


                        denise

                        Are you sure the online yoga is what you think it is?

                        A friend of mine in the USA once sent me a text saying "I'm going to text you some pictures" , I said "I hope they are family friendly".

                        They were of his wheel arches and exhaust manifold of a car he had restored

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                          TinyLady

                          Well no worries about being awake at two or three in the morning.

                          I either haven't got to sleep by then, or I have woken up.

                          It can be a good excuse for another snack .

                          This morning I just popped two more co-codamol and some Altraplen. Then put my audio book back on.

                          No snoring to listen to here. You would think I had four in my bed, the way I sleep right on the edge.

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                            I will let you know how the yoga goes. 🙄
                            when i can think of something profound i will update this.

                            Comment


                              denise - please tell us you have survived the yoga
                              Hi, I'm Eddie.
                              Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                              Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
                              Still wondering what the future will bring.

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                                denise can't you see that both Eddie and I are worried that you might have been tied into knots by the online yoga.

                                It's like when I put my mobile phone down in the house and can't remember where it is. Can't call it to find out where it is .

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