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    WheelsOfSteel sending uplifting hugs (not too squeezy) ❤️‍🩹☺️

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      WheelsOfSteel Get those lungs listened to asap Eddie, once infection has been ruled out, you can focus on getting a respiratory assessment. Possible Covid hangover?

      Sending you a non-contact, virtual hug 🤗
      ​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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        Warm and breezy hugs from me 🤗🤗🤗
        ​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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          WheelsOfSteel offering side-hugs and a side order of hope that you get breathing difficulties sorted quickly.

          🤗 regular hugs for everyone else.
          Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

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            Many thanks for all the kind words gang
            I don't know what was going on this morning, but I was having trouble drawing breath, and it was taking a lot of conscious effort
            I used to have appointments with my respiratory people set for tomorrow, but they cancelled them.
            I did have a day of lab-ratting at Oxford arranged for today, so I got wifey to drive me there, and thought "at least it gets me to where some medical people are".
            The consultant did indeed listen to my chest, and ruled out infection. Interestingly, he also ruled out MND symptoms as the cause of this - advising me that something I have lived with for months can't suddenly accelerate to a pace where it can do that much in 2 days.
            Turned out he was quite right. As soon as I had been chatting to the research doctor for a while about the nerve tests they wanted to do, I realised that my breathing had settled down. The chat was a distraction that stopped me thinking and worrying about the breathing.
            Having gone to bed worrying about breathing, I then had all night to lie awake in the darkness worrying about it and must have got into a bit of a state.
            Lesson learnt!

            Anyhoo - I have missed out on a days worth of hugs.
            Keep them warm for me - back for a hugfest tomorrow
            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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              Hey everyone, I don't deserve hugs.... for some reason I haven't been on here for days. No idea what I was thinking.
              My wonderful private physio has thoroughly cheered me up today, reduced my pain and made me feel cared about... so I am sending you all warm hugs because my hug tank is overflowing and warm and fuzzy for a change 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!

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                TinyLady Oh thank you Tiny, I'll take one of your warm and fuzzy hugs. xx
                ​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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                  Big hugs to everyone,

                  TinyLady.. everyone deserves a hug. Sometimes I don't come on here for a few days but then I feel welcomed back. 🤗🤗🤗❤

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                    Oops sent too soon .

                    WheelsOfSteel. So sorry youve been struggling. Covid left me with a hacking cough which had me struggling for breath. I had my chest checked by a doctor in Spain ( that's where we were I didn't go specially😅) and my breathing checked by the respiratory consultant when we got back. The tests were OK and he felt it was covid related and not MND.

                    Not sure if this is relevant to you but hope you feel better soon xx🤗

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                      Morning hugs here. Another dull morning xxx
                      when i can think of something profound i will update this.

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                        Big hugs!
                        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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                          Morning everyone, love those big hugs WheelsOfSteel - I'm a bit sore from physio massage so might need a gentle one!

                          Wheelchair services are coming today to fix my powerchair (again). I'm not sure this powerchair is going to survive living with me 🤣, it's certainly done some miles!
                          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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                            Gentle hugs everyone 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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                              WheelsOfSteel i certainly have done exactly the same re getting over anxious about my breathing. Its very much a real worry. I now do the breathing in and out 10 times whilst thinking of sitting on a warm beach x

                              TinyLady thats great re physio and not so great re wheelchair.

                              Happy hugs from me x
                              Diagnosed May 2021 bulbar onset als.

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                                I wonder what TinyLady gets up to in that chair?
                                7948eee1b9023c6251d3b02d11d95d9d.jpg
                                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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