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We’re still enjoying life

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    We’re still enjoying life

    Sorry guys ain’t been on for awhile
    still doing what the wife wants to do
    concerts,days out and holidays, can’t believe it’s over a year since diagnosis, although things have deteriorated a bit . Our thoughts are M.N.D you ain’t dragging us down

    #2
    Great attitude, keep going 👍

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      #3
      Thanks Tony . It’s heartbreaking and nobody deserves this evil disease.

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        #4
        Originally posted by Ricky135 View Post
        still doing what the wife wants to do
        Well Ricky, she's obvs doing all the right things 👍👍💖 Fab to hear you're doing so well, all things considered. xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Thanks Ellie love
          she had a fall when we was on a day out at the weekend. She didn’t hurt herself much but the emotions was so heartbreaking.

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            #6
            Enjoying life as much as possible asap after diagnosis is an important message. By the time we got over the shock of my diagnosis of this insidious disease we were into the first lockdown which screwed up holiday plans and made us realise we should have done a lot of stuff earlier.
            Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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              #7
              Definitely the best way to deal with it if you can, do as much as possible that you like/want to do. And be prepared to adapt so you can still get to do things.

              I used to love hiking in the countryside and am a bird watching fanatic😄 Can't do the hiking now, but can use a mobility scooter for accessible 'walks', or hubby can push my wheelchair. And all the big RSPB and wildfowl trust reserves have good disabled access and great bird watching hides, so I don't miss out there at all🙂

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                #8
                Ricky135 That is a great attitude to have.
                We made the best of this first year after diagnosis with 3 foreign holidays.
                We are having to wind things down now as my walking ability has just about disappeared, but we are planning some UK touring in the WAV.
                Stay positive!
                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.

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                  #9
                  Ricky135 - that is so good to hear. I'm finding more challenges and some things, like kayaking and hiking are long gone... but amazing how many things we can still enjoy. There are always new things to discover 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.

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                    #10
                    Thanks guys for all your positivity,with this disease it grinds you down,I know am only the wife’s carer but we’re both h going through this together,the support of the palative care team and the MND association is so outstanding and we’re both so overwhelmed by there support

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                      #11
                      Originally posted by Ricky135 View Post
                      ,I know am only the wife’s carer but we’re both h going through this together
                      Ricky you are not just your wife’s carer, you are the captain of the whole team of supporters. I always said to my wife together we will face whatever comes.

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