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Having a break from mnd

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    Having a break from mnd

    Hi all. I'm taking some time out from the forum. On my year anniversary of being diagnosed I have decided I need to have life without mnd in it. To get back to just living.

    I have had a very turbulent year made awful by bad support services. this lack of support has made me scared and anxious of what the future holds for me.

    I have had the best advice here from the best people and I cannot thank you enough.


    Good luck on your journeys and huge big hugs xx
    Diagnosed May 2021 bulbar onset als.

    #2
    shelly21 enjoy your break….we’ll be here if needed. ❤️
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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      #3
      shelly21 Totally understandable honey, go and smell the roses 💐 and enjoy.

      As Linda said, 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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        #4
        Pop back in to see us every now and again. We will miss you.

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

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          #5
          Understand, enjoy all you can xxx
          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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            #6
            I will miss you but also totally understand the need for the break away. If u ever get down to those cornwall lodges let me know on here! Am sorry Shelly for the upset u have unnecessarily been put thru. Take care. X

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              #7
              Hi shelly21 Firstly,I am so sorry you have been let down by lack of support. Coping with life with MND is hard enough without having to fight for every adaptation.

              Its quite understandable when people need a break from the forum so thank you for letting us know..i sometimes feel i do for a few days,usually when we have lost someone.

              We'll miss you and we're here for when you need us.

              Love and hugs to you
              Debbie x😘🤗💕

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                #8
                shelly21 take a good earned break after everything you’ve been through. But you know where we are. Take care xx

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                  #9
                  shelly21 we'll be here if you need us x
                  Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                    #10
                    Your well-being is the most important thing, so very best wishes xxx

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                      #11
                      shelly21 - I can completely understand this. Having been totally let down and fighting for everything myself I know how draining it is and how it takes over your life.

                      Go have some fun. We will always be here for you 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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