No announcement yet.


  • Filter
  • Time
  • Show
Clear All
new posts


    My symptoms began about ten years ago, endless appointments with disinterested medics, no diagnosis, and finally a hospital admission with respiratory collapse.

    I elected to have a tracheostomy as a temporary measure to ease my breathing and after a stay of ten days (the medics kept telling me I would have to stay in for months) I went home.

    My symptoms continued and in August 2017 I was given the diagnosis of MND.

    As my breathing did not improve I kept the trachy , which has greatly helped to maintain my quality of life. I forget its there-until people stare at it when I'm out and about!

    I use a ventilator overnight, but do not use a mask as it connects direct to the trachy. If I choke the trachy makes it easy to cough up anything that gets stuck.

    It seems tracheostomy for MND is common in many countries , but not in the U. K .

    Is there anyone else out there with a similar experience to mine? Does anyone else have one?

    I don't have one and have no plans to get one. The main reason is that it requires 24/7 care. I don't have family and would have to rely on paid caregivers. It just isn't sustainable for me.

    I do know several people who have them with mixed feelings. Some love them, one had hers removed after she became totally paralyzed.

    So, I really think it boils down to financial resources and quality of life.

    I'm glad yours is working for you.
    Living live on the beach. Dx 2015 ALS (limb onset)


      I have had MND for 11 years and have had a Tracheostomy for 9 years due to havering a peg fitted and whilst on cpap air leeked into my stomachcausing it to bloat and pushed up my lungs stopping me to breathe so they decided to put a tracheostomy in

      I'm now on a ventilator 24/7 which is attached to the trachi rather than having a face mask which enables me to have a drink . I only have it changedl once a mouth by a nurse which takes about five minutes to get everything ready a two second change to take the old one out and?put the new one in that's it.

      I have carers clean round the stoma change the dressing and the collars everyday change the innertube twice a day have regular coughs with the help of a cough assist machine and nebulisers first thing in morning and last thing at night and I believe this routine has helped me an awful lot.

      I also want to just say there are different tracheostomy out there and some may not suit you but another might. At first I had one with a cuff which is the cuff you have to inflate and deflate which might suit someone but I have just a tracho twist with no cuff which suits me but ask about different ones.

      I think that this should be an option just like the peg is a option after all I don't think that having a mask on your face 24/7 or even just some of the time is very nice to live with. May I also say I have a NG tube because my swallowing is not good and instead of having that changed every 8weeks unbelievably I only have it changed every two years that's because I have carers who look after it well.