No announcement yet.

My first post… losing my Dad to MND

  • Filter
  • Time
  • Show
Clear All
new posts

    My first post… losing my Dad to MND

    Hi, I haven’t even introduced myself on the introductions. I joined here over a year ago… but have not yet til today posted.
    My Dad at 81 was diagnosed with MND late November 21 and died one and a half weeks after being diagnosed. He had pneumonia from likely aspiration (which I think he had had for some weeks). He had symptoms (that we as a family were aware of) from January 21, saw a consultant in the March however with covid delays etc it took til November for the diagnosis to be confirmed.
    I would like to share my story in a ‘safe’ environment and hopefully help others who are perhaps in a similar position to me.
    MND terrifies me having seen how my Dad was …however I think he had ‘hidden’ symptoms eg falls etc and I hadn’t seen him a lot up to him taking poorly due to covid restrictions.
    It’s now 20 months on and I am still receiving counselling and am on a waiting list for high intensity CBT as a result of sleep issues largely from the trauma of the last ten days in my Dads life. I never in my life imagined saying goodbye to Dad as I had to.
    I am sorry to jump in here with such a post but I wasn’t sure how else to start.
    My Dad was previously so healthy, looked after his diet / fitness… I struggle to remember him as a well man sadly.
    Thank you if you have read this.
    I can’t read a lot of posts on here I’m afraid and feel selfish somewhat for coming on here to ‘download’. I am generally trying to be positive though and I always look to learn from things and help others. So if I can help anyone here if I read some posts I’ll do my best.

    Kittymum sorry to hear about your Dad and how suddenly he was taken from you. It sounds like a really difficult thing to process. I hope you get more support with that soon.

    I think this forum is for everyone to share and offload their experiences. No right or wrong. We are all living this nightmare and can listen and support each other.

    Your Dad was a good age and I hope with some time that you can remember more positive, happy times with him and that will be a comfort 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!


      Hi Kittymum Welcome to the forum. Sorry you lost your Dad under such awful circumstances.
      ALS - Diagnosed 15/05/23. Limb onset - Nov 2019 - Hand. Overnight & some daytime NIV. Fulltime powerchair. Trying to stay positive.


        Thank you both TinyLady and GeoffBeale for taking the time to reply and to welcome me here. I do appreciate your thoughts. I want to be braver in my approach and not hide away from what happened. I will check in on here on the forums as best I can. You have both helped me.


          Hi Kittymum
          I am so sorry that you lost your dad and that you and your family had to go through this. I hope that sharing and talking on here will help you.

          I saw your response on my post, our experience with loosing our dads is similar. I haven't grasped it yet, and I don't know how to talk about it without feeling like it could upset others, all I can say is it is a very traumatic experience.

          I hope you get an appointment for your CBT soon and that it helps you in your struggle.


            Hi Kittymum - there's no magic bullet for this roller coaster ride of emotions we're all on. However, I can relate to the struggle to remember your dad as the great guy he was.

            I lost my beautiful wife in April and I couldn't get past memories of her in wheelchairs, commodes and lifting and shifting. I couldn't access positive memories of 50 brilliant years together.

            I printed off photos of our honeymoon and travels over the years and placed them all around the house. It works....a bit painful sometimes when you walk past but it's opened the door to more positive memories. Try it. My wife and your dad would hate to see us struggling so we have to crack on and make the best of our lives. Good luck!