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    Hi Puddy,

    I understand how you feel, my dad was diagnosed in January of this year to our surprise and he has deteriorated so fast. My mum and I are really struggling with how to cope. I think it effects every person differently and that's the difficult part as there are no answers. We really aren't sure now how long dad will be with us for but everyone is right we have to try and make memories. I really do send lots of love xxxx


      It's with a broken heart I have to tell you that Nigel passed away in hospital on 12th August. I was with him when he passed. It had got to the point where he couldn't swallow, eat or speak. Even drinking was extdremely difficult. One afternoon he said he couldn't get his breath so I called an ambulance. He had pneumonia and passed away two days later. I'm grief'stricken and hate how he suffered.

      Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.


        Oh Puddy, I'm so sorry to hear your sad news - heartfelt condolences to you.

        I'm glad you were with Nigel when he died and hope you have some support there, knowing that people cannot easily travel to Spain right now.

        RIP Nigel.

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


          Puddy we haven’t chatted on here but as fellow carer I want to send you my sincere condolences on Nigels passing. It will have been a great comfort to him to have you by his side every step of his journey especially at the end.

          Sending you a hug



            Please accept my condolences Puddy. Nigel is finally released from this dreadful disease and in time you will look back on happier times together.

            I’m going to do this even if it kills me!


              Hi puddy
              I'm so sorry to hear your news. I honestly can't think of the right words to say.
              love and hugs
              Denise xx
              when i can think of something profound i will update this.