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    Afternoon Tea

    Just enjoyed a very pleasant afternoon tea at Notcutts Garden Centre courtesy of B’ham & Solihull MNDa. Met some lovely people who despite their various challenges were able to enjoy a really nice time. Such a contrast to my experience a few days ago! Talked WAVs, wheelchairs and where to go on holiday 😎.Anyway, all very enjoyable, thank you MNDa.

    #2
    Tony that's really great to read Tony. So pleased you had such a successful afternoon. The mnd clinic have asked to pass my details onto the local mnda support network recently. I don't like anything like zoom as I really feel uncomfortable being on camera but hopefully there will be some face to face groups like this. Good to hear Tony. X
    Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.

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      #3
      Tony Good for you Tony 👍👍
      ​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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        #4
        Originally posted by Zante View Post
        I don't like anything like zoom as I really feel uncomfortable being on camera but hopefully there will be some face to face groups like this.
        Zante, if you ever 'have to' be on a video call, you can turn off your camera and just join with audio. You'll still be able to see other people and, if anybody asks, you can always say you've a problem with the webcam 🤫 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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          #5
          Ellie I didn't know that about the camera!! Thanks for the tip. I do feel so uncomfortable on camera and even worse with the little circular camera bit of my own mug staring back at me from the screen! Only used it for Skype when my sister was travelling. That's good to know thanks.! Xx
          Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.

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            #6
            Tony so glad you had a lovely afternoon tea. Sounds delightful xx

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              #7
              Tony that sounds wonderful.
              when i can think of something profound i will update this.

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                #8
                Same here. The Gloucestershire MNDA have started up monthly get togethers again.
                We meet in the coffee shop of a local garden centre. Had one last week.
                They are a friendly bunch, and it's good to get out and meet folks with the same issues.
                It was the first time I had personally met other MND sufferers, and it gave me some perspective on my own situation.
                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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                  #9
                  WheelsOfSteel Well done Eddie. Not always easy getting out and meeting people but it is worth the effort especially with people with a similar condition.

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                    #10
                    Thanks for sharing Tony and WheelsOfSteel I recently went to the Manchester local group meeting which had guest speakers on assistive technology, then a garden centre cafe social, with the Cheshire group, which was extremely helpful and positive.
                    Thank you to everyone involved in local events.
                    2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                    Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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                      #11
                      WheelsOfSteel
                      It was the first time I had personally met other MND sufferers, and it gave me some perspective on my own situation.
                      I attended a local MNDA meet up last month too, also at a Garden centre cafe. Like you, it was the first time I had met other people with MND face to face. They were a friendly bunch and it was great to swap experiences and see the great variety in the physical presentations of this condition 🙂
                      Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.

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