Announcement

Collapse
No announcement yet.

My first post

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

    My first post

    Hello, I'm Peter - newly diagnosed with MND living in Hertfordshire age 65. It probably started with odd cramps in my ribs about 18 months ago - nothing too serious. Then this year I developed pneumonia whilst on holiday in Vietnam in early March (a real nightmare of a story can be told about how we were locked in quarantine with supspected COVID-19!), another chest infection in June, weakness in my left arm and hand, and then quite rapid decline in my ability to speak and swallow in July and August. I spoke to a GP in early August and it was pretty clear where all these symptoms were pointing. After a neurology consultation and tests, here I am just 8 weeks later with a confirmed diagnosis from the neurology consultant. I've had great support already from my speech and language therapist and I've managed to bank my voice (just in the nick of time I think). I can't say that my wife and I are over the shock and emotion stages, but we do seem to have emerged into a new place now and we're starting to plan for how we are going to cope, and we're thinking hard about how life will be when things get more challenging. I'm sure this forum is going to be very helpful, and the MNDA website looks really useful. For the past nine years I have been a volunteer adviser with Citizens Advice, so I do feel quite well informed about benefits, social care provision etc and I've had plenty of experience filling in Attendance Allowance and PIP application forms for people... but I never imagined I'd need to apply myself! This thing just hits you out of the blue. Thanks for reading

    #2
    Hello and welcome Peterpan.

    Your experiences with the benefits system is one huge problem for those with a recent diagnosis of MND and as you will know just dealing with the emotional stress of the diagnosis is enough. I wish you well on this new journey and no doubt we will hear from you again.

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

    Comment


      #3
      Hello Peter and Welcome aboard the ship nobody wanted to buy a ticket for.

      Sorry about your diagnosis.

      Your benefits knowledge will surely come in handy on the Forum!!

      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.

      Comment


        #4
        Welcome Peter to our band of brothers and sisters. Ask away as no question is taboo here. 😄👍

        Comment


          #5
          Hello Peter and welcome
          I’m sure you will be in demand for your knowledge on the benefits system. MND is difficult for the DWP to understand
          and to be honest for us sometimes.
          ​​​​​​ best wishes and keep positive
          S.
          As long as there’s golf and beer I’m happy

          Comment


            #6
            Welcome Peter. Lots of friendly folk and helpful advice here. It's a bit of a whirlwind to start with, isn't it.
            Each day is made easier with a bit of humour.

            Comment


              #7
              A warm welcome from me Peter,

              The early days are such a shock aren't they? I remember feeling overwhelmed by advice but life does even out as we learn to adapt.

              l love your username. I guessing it's because you haven't grown up,
              Love Debbie

              Comment


                #8
                Hi Peter, I was diagnosed this year too with MND,.I think as others have said of course its a shock but I continue to be amazed as how us humans learn to adapt to the situations we find ourselves in even though of course we would prefer not to have this disease.I think for me it was important to share my diagnosis with family and friends and then was amazed at the love and support that continues to be given to my husband and myself.I guess you have helped many people in your work with CAB and hopefully you will get support from the health professionals as well as your wife, family and friends.
                I now have a whole list of hospice and health professionals my hubby and I can turn to for advice and the speed they respond has reassured me that as I journey onwards they will do their best to keep me comfortable and support my husband too. Best Wishes Peter. MaryX

                Comment


                  #9
                  Peter. Welcome to a wonderful group where you can ask questions and receive lots of help and advice from those on the same journey. I also live in Hertfordshire and there is an active local MNDA group you may consider contacting.

                  Take care and stay strong

                  Richard

                  Comment


                    #10
                    Hello and welcome Peter...
                    This is a good place to visit and to have conversations.
                    I found that I wanted to find other MND suffers. Just reading and knowing that I am not alone is one benefit of being on here.
                    I am amazed at the resilience and determination we all possess. I am going to do my best by continuing to love my life and the family and friends I have around me. Smile and enjoy the moments
                    Best Wishes
                    Jeanette


                    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

                    Comment


                      #11
                      Hi Peter
                      big welcome from me. Think everyone has said what I was going to say.
                      I used to live in Stevenage.
                      Denise xx

                      Comment


                        #12
                        Welcome Peter Pan,

                        I've not seen that movie in years- such a good one!

                        You're not alone and plenty of friendly advice on here. Super overwhelming at first and each week can pose new challenges mentally and physically for both of you.
                        Must be strange being the one filling out the documentation this time round, but that knowledge could come in handy, you might be giving out advice on here before you know it haha...

                        Take care.

                        Tess x

                        Comment

                        Working...
                        X