Announcement

Collapse
No announcement yet.

Hi , from Mike in Brighton (well, Hove, actually)

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Hi , from Mike in Brighton (well, Hove, actually)

    Hi. I was diagnosed with MND in June 2021, but I think I had symptoms for several prior years.
    I am currently receiving care at home.
    Today, my left side from toes to face is badly affected by the disease. My right side is much better, but some symptoms are perhaps emerging in my right leg and foot. I imagine the disease could quickly progress. so I have been trying to tidy up financial matters, and even prepare my funeral.


    #2
    Sorry to hear that. I hope that you are getting the necessary care. It comes as a shock when you are first told, I have Progressive Bulbar Palsy which affects my swallow and I cannot speak. Other than that I am fortunate that the MND has not progressed, so far, to my arms or legs.
    I was diagnosed in Jan 2018 and have carried on as best I can and still do the gardening and play Bridge. I hope you can keep going. Like you I have tidied up my finances and have told my children to get organised for my funeral.

    Comment


      #3
      Michael Nicholas welcome to the forum. I think most of us make those preparations so that we can β€˜forget’ about them so to speak.
      Look forward to reading more of your posts.
      Take careπŸ˜‰
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

      Comment


        #4
        Michael Nicholas A warm welcome to the forum Michael from Hove πŸ˜‰ Thank you for posting.

        Are your symptoms mainly in your limbs - no issues talking, swallowing or breathing?

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

        ​

        Comment


          #5
          Michael Nicholas - welcome to the forum. I am mostly left sided issues too x
          Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

          Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

          Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

          Comment


            #6
            Hello Michael πŸ‘‹
            Foxes Never Quit πŸ’™

            Comment


              #7
              Hi Michael

              Nice to meet you

              πŸ’•πŸ˜˜
              when i can think of something profound i will update this.

              Comment


                #8
                Thank you all for the kind welcome.

                I have swallowing and speaking difficulty, too. The left side of my face, tongue and throat are affected.

                I have an electric wheelchair, but retain strength down my right side. I'm half the person I used to be.

                Comment


                  #9
                  Hi Michael and welcome to a forum you or any of never expected to be on. Really helpful and friendly people loads of great information . Love and light

                  Comment


                    #10
                    A warm welcome from me
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                    Comment


                      #11
                      Hi Michael and welcome. Carry on enjoying as much as you can as long as you can πŸ‘

                      Comment


                        #12
                        Good luck and blessings on your journey mate πŸ‘

                        Comment


                          #13
                          Hello from Peacehaven (not far from you) welcome to the forum we all wish we didn’t have to be in
                          Diagnosed 17/2/22
                          summer 2020 - Left arm onset
                          Jan 2022 - breathing now affected

                          Comment


                            #14
                            Michael Nicholas welcome to the forum it's a great source of information, support and humour.
                            Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

                            Comment


                              #15
                              Hiya Mike. Sounds like you are from the posh bit
                              I was once in a play that had the line "Brighton's plush silk-stocking district of Hove".
                              Like you, I am worried about progression and I am making what arrangements I can while still able.
                              In the meantime - welcome to the party. Hope to hear more from you.
                              Hi, I'm Eddie.
                              Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                              Still walking and talking, and wondering what the future will bring.

                              Comment

                              Working...
                              X