No announcement yet.

New member

  • Filter
  • Time
  • Show
Clear All
new posts

    New member

    ​​​​​​Hi my name is Linda and I have Motor nerone mum and granny had it

    Very sorry to meet you but you have come to the right place. 😉😄
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      Hi Linda
      nice to meet you. Join in we're a great bunch of people.
      Denise xxx
      when i can think of something profound i will update this.


        Linda welcome to a group that no one really wants to be in but where you will get advice, help and knowledge from those who are on the same journey as you.

        Ask any questions you want, someone her will always be able to advise.

        Stay safe and keep smiling.



          Hello and welcome Linda.

          I guess you have knowledge of the disease and management of symptoms based on your genetic link. Although we are no further forward with a cure or even a treatment to slow progression than we were 30 years ago, there has been progress in improving our quality of life.

          I hope you will keep in touch and I wish you all the best.

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


            Welcome to the Forum, Linda.

            Sorry MND has had such an impact on your family.

            Signicant advances have been made in inherited ALS/MND, notably in SOD1 & C9orf72 genetic mutations, which I hope will benefit you in the coming years.

            Take care.

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


              Hi Linda, that sounds really hard having it in the family in that way. You will know a lot about it, but hope you will feel supported here x
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!


                Hello Linda

                I send you strength and best wishes

                As a recent diagnosed MND sufferer I find this forum so helpful and has made me appreciate that I am not alone. I am grateful to be able to communicate with other MND sufferers
                I have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too


                  Hi Linda ,welcome to this site and hope you find it useful for support and advise. It must be so hard to have seen what it did to loved family members. Hope you find some support on here .Best wishes Mary


                    Hi Linda - sorry you've joined the club. Have you had bloods sent for gene testing by your consultant? As Ellie says things are moving now on some of the familial gene mutations (particularly the two she mentions). Promising Trials are in progress for these which may be of interest to you if you have one of these mutations (I'm not sure about the recruitment status though). All the best.


                    Diagnosed 05/2017 Familial ALS Limb onset


                      Hi Linda, very sorry about your diagnosis and your family history. It must have been a worry for years. I have the C9ORF72 gene fault and my niece has tested positive for it. Take care and chat soon, 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.


                        I had a gene test and found out why I have this. So what? I'm going to die early and that's it. 😆
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx