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    Bob

    Formal MND diagnosis, October 2020. Sill able to walk a few hundred meters and climb stairs slowly. Eat very slowly; I have a PEG and I'm consider using it.

    #2
    Hi Bob, welcome here. It’s good that you’re still mobile. Nice to hear from you. Lynne
    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.

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      #3
      A warm formal welcome to the forum Bob.

      If eating is becoming a chore, you can always use the feeding tube for the 'boring' calories, and enjoy smaller, easier to eat meals and snacks orally. I enjoy (slowly) eating small, tasty meals but get most of my calories through my tube, meaning I don't need to stress over what I eat.

      Take it easy on your pins - if you have handrails on either side of your stairs, that's safer than just one rail or, safer still, is a stair lift (I know, the thought of it !! but it will stop you from potentially having a bad fall)

      Stay well.

      Love Ellie 😘

      ​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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        #4
        Hi Bob, welcome to a v exclusive but super supportive club

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          #5
          Welcome Bob....the forum is a great place for all things MND and more.
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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            #6
            Welcome BobFOwen I have been 100% tube for a while yet I can still swallow. My tongue is the problem. But you must make your own decisions. We are only here to try and help you make good ones. With love. Stay Strong. πŸ‘πŸ€—πŸ˜‰πŸ˜„
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #7
              Hi Bob, I have a RIG and as I was losing weight I spoke to a nutritionist and now I eat small meals and use the RIG for supplements( they taste vile).So glad I had RIG fitted in time to use it as I am now maintaining my weight.
              Is it worth talking to nutritionist or dietician?
              Best wishes
              Mary

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                #8
                Hi Bob, welcome to the site - as you might be able to tell we discuss all issues here whether they be relevant or not!

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