No announcement yet.

When I came on here

  • Filter
  • Time
  • Show
Clear All
new posts

    When I came on here

    originally I felt a bit of a fraud as my husband had had no diagnosis, but now I feel justified...........after nearly 2 years of waiting he got the diagnosis this morning, definitely MND in particular PMA.

    Went to Seacroft in Leeds, they seem switched on, with the Covid situation after care has changed slightly so from now on in he will attend every 3 months and be seen by OT, Physio and someone who is going to help us do a Plan B. Meanwhile someone is to visit the house and do a mobility assessment.

    My husband seems ok but I feel a bit mixed up - all the time hoping for something else, it wasn't to be. Its enough to drive you into the ground all this time waiting.

    Husband Albert diagnosed PMA Feb 21

    It's devestating but you will find doors opening that were closed before. It is what it is. Stay Strong 👍😍x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      Sorry to hear that it wasn't something else Sue. At least you've got a diagnosis at last. You should now notice a change in the level of support you receive. Also, if you're not already getting it, put a claim in for PIP. Best wishes.
      Each day is made easier with a bit of humour.


        So sorry for you both, Sue - I really hoped it was something else...

        With a definite diagnosis finally, hopefully services will fall into place in a more co-ordinated manner.

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


          Hi Sue,

          So sorry for your husband's diagnosis. Like Ellie, I was really hoping it would turn out to be something else. It's still a shock even when you are half suspecting it so do give yourself time to process things.

          I have found the team at Seacroft to be very proactive and incredibly caring. Hopefully, you won't feel so alone when you are getting the help you need. They are easy to contact when you have questions or need advice. There is always something we forget to ask.

          Take Care of yourself,
          Love Debbie x


            Not the news you were wanting. I’m not surprised you have mixed up feelings but you are a strong person or you wouldn’t be on the forum. Hopefully the right support for you both will help you on your journey.


              Hi Sue,

              As others have said it’s not the best news to receive but your husband and you can take small consolation in the fact that the diagnosis revealed a slower form of MND. Nevertheless any MND is difficult to manage but you will continue to receive good advice and support from our members.
              I’m going to do this even if it kills me!


                Hi Sue

                We are all here for you. So scream, shout, laugh, cry and ask questions. We are with you all the way.



                  Sorry to hear you received confirmation of the disease Sue. I also seem to have the slow forming type, it is worrying wondering how to manage each day, hoping that maybe it may just be my arms that are affected. I have found plenty of help out there though, so I hope you can too.
                  Diagnosed 2nd Jan 2020
                  Both arms/shoulders affected, left worse than right.
                  Progressive Muscular Atrophy suspected


                    Oh Sue, as everyone has said I too was hoping that the diagnosis wouldn’t be MND but at least it’s a slower version. You both must be shaken up. I hope that you each have somebody who you trust to talk to,
                    . But we are all here for each other so lean on us whenever you need to.

                    I hope that the home visit goes well and everything that’s needed arrives quickly thereafter. 🤗 🤗 🤗 love Lynne x
                    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.


                      Hi Sue

                      Im new here but want to add that im here for you if you need it.

                      Im in the similar sutuation as you but maybe a little behind you. Ive been a few years trying to get a diagnosis, nothing yet but im getting to a stage where they just have to look at me to know.

                      My neuro states i only have lmn signs, no umn signs so maybe pma for me too.


                        Yes hope you get better support now Sue, and slow progression x
                        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!