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    #1

    Adios amigos

    Well my friends and fellow sufferers, I have finally succumbed to MND our common denominator.

    With a heavy heart I’ve decided to have my BIPAP removed in the local hospice.
    I was diagnosed in September 2017 while living abroad and came home 2 years ago hoping a drug trial would be more available having tried most of the scams/cures in Asia.
    I have had great support from UCLH, especially the respiratory department and Maidstone MNDA group… The forum is a great source of information and unity and if there’s anything good which has come through this experience it’s meeting such lovely unselfish people I would never had known existed.
    Good luck and love to you all Jerry x
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    #2
    Sending love and light 🙏🕯
    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
      Thank you for taking the time to post Jerry.

      I know you'll be well looked after in the hospice and will be kept comfortable right until the end.

      Wishing you a pleasant onward journey, have a beer for me. It was an honour knowing you.

      Love Ellie. 🤗🤗😘😘😘
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user      .
      ​
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        #4
        Ah Jerry, thanks for the effort of posting and I agree with what Ellie said xx
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.
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          #5
          Happy trails amigo. Where you go we follow. 😁👀😉👍xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx
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            #6
            I'm a very new member here, but want to wish you well and thank you for posting with such openness 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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              #7
              Jer788
              Hi Jerry, thanks for posting, fellow sufferer, trust the hospice will give you lots of support, wishing you as peaceful journey as possible xx
              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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                #8
                You're a brave man, Jerry. In control till the end.

                It's an honour to have known you.

                Safe journey!

                Doug
                Diagnosed April 2017
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                  #9
                  Oh Jerry, sending you love and wishing you peace in the following days.

                  Love Debbie x
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                    #10
                    I wish you a truly peaceful journey brave man xx
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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                      #11
                      Saying prayers for you.
                      Mary
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                        #12
                        Love&Light for your onward journey x
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                          #13
                          Journey well Jerry.
                          I admire your courage, and hope I can face the end with as much grace as you.
                          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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                            #14
                            love and prayers xxx
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                              #15
                              Adios Jerry. I really admire your strength. This is what makes sense for you now and I hope I can find similar strength when my time comes. Travel well. Love, Lizzie
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