No announcement yet.

Second time around

  • Filter
  • Time
  • Show
Clear All
new posts

    Second time around

    Hi guys,

    I am fairly new to this forum. I have mostly just been lurking.

    In a funny twist of fate, this (MND) is my second terminal diagnosis. In 1997 I was diagnosed with HIV; at that time, there was no effective treatment. Over the years, considerable advances in treatments, so HIV has gone from a terminal illness to a chronic disease.

    Who knows, there might be an effective treatment for MND just around the corner - I could go for a third terminal diagnosis.

    Hey ho, life sucks, then you die. But I have had some great times in-between.

    All the best,


    Hi Paul. You’re right that having MND doesn’t preclude you from other life limiting conditions, but It’s great that you can stick with the positives. It really is the only way forward. We need to find the things we can do and enjoy, and stick with them. I wish you a smooth road ahead . 🙂 Lizzie x


      Hello Paul and welcome,

      I’m pleased you got a second chance and if only the research was funded in the same way as HIV then I think we would have a better treatment than riluzole. It is ironic that one of the drugs used for treatment of HIV is now in trials for MND.

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


        Welcome Paul - We hope you you get your wish!


          Welcome Paul. You are one tough cookie. The world awaits a breakthrough.


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


              Oh my goodness Paul, you are lucky
              I have been lucky up til my 63rd year, previously I had been fit as a fiddle, until I was diagnosed with MND in 2020, and whilst I was going through the tests they found thyroid cancer too. Pah, the cancer was nothing compared to MND as they cut it out. I wish MND could be dealt with in a similar manner.
              Diagnosed 2nd Jan 2020
              Both arms/shoulders affected, left worse than right.
              Progressive Muscular Atrophy suspected


                Welcome onboard Paul. You have been through the mill. Here’s hoping that as you say a good treatments for MND develops similar to the HIV breakthrough. Lynne
                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.


                  Keep dreaming kiddies 😉😄x
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


                    Hi Paul
                    nice to meet you. What a wonderful attitude.
                    Denise xxx
                    when i can think of something profound i will update this.


                      Good afternoon Paul

                      Good to hear from you on this forum and good to know you are being a good fighter with your motor neurone disease.

                      Indeed, MND may not be the only thing that people diagnosed with MND have and I count myself lucky in a way that is all I have at the moment.

                      Best wishes from another MND warrior!


                      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

                      "Things turn out the best for people who make the best of the way things turn out"


                        This is a bit like the finding out that the Dexamethasone used for some Cancers gives Covid sufferers a better long time survival rate, they say up to 5,000 fewer deaths could have been noted if they knew about it from the start of the Pandemic,

                        They have to keep on testing everything they possibly can - I don't see this as false hope but more of a positive
                        Husband Albert diagnosed PMA Feb 21


                          Welcome to the forum Paul


                            Welcome Paul to the ‘club’ no one wanted to join. You will find lots of friends here. Feel free to ask what you want, or shout, scream, rant, rave, laugh or cry. We have all been there.