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    News to me

    Someone from MND said that it's not incurable. This was on the radio just now. I think that's incredibly insensitive and damaging. 😠
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Not incurable or incurable? I'm confusing myself. Never mind.
    when i can think of something profound i will update this.

    Comment


      #3
      Not incurable. As is there is a cure.
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

      Comment


        #4
        Originally posted by matthew55 View Post
        Someone from MND said that it's not incurable. This was on the radio just now. I think that's incredibly insensitive and damaging. 😠
        Hi Matthew

        I'm sorry that you've found the comment about MND not being incurable insensitive. Whilst there currently isn't a cure for MND, it is believed that this is mainly due to MND research being underfunded. If there was more money invested in to research then it is more likely that effective treatments and a possible cure would be found.

        The MND Association has been campaigning for the Government to invest in MND research and at the weekend it was announced that they have agreed to invest Β£50 million in to MND research. You can read more about this on our website here https://www.mndassociation.org/get-i...ed-to-end-mnd/

        Best Wishes

        Rachel
        MND Connect Adviser
        MND Connect
        Contact us on 0808 802 6262 or at [email protected]

        Comment


          #5
          Originally posted by matthew55 View Post
          Someone from MND said that it's not incurable. This was on the radio just now. I think that's incredibly insensitive and damaging. 😠

          I think Matthew, the context in which it would have been spoken was

          "It's not incurable, it's underfunded"

          If you leave off the latter part of the quote, you don't get the full meaning.

          MND is most probably treatable/curable but not yet and because we have had so little funding and focus relatively to cancer etc.

          Comment


            #6
            Over how many years though? I won't be around for the final payment.
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

            Comment


              #7
              And as far as a cure goes it could never apply to me.
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

              Comment


                #8
                But it doesn't make the statement incorrect or insensitive Matthew.

                Please think of the newly diagnosed.

                Lee

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                  #9

                  We have to have hope of better treatments and ultimately a cure. The day must come soon when newly diagnosed people are not sent away with Riluzole only with the statement it may give you 3 months more ...and apart from that no treatment. Being told this is the disease all medical professionals dread getting (as I was told)...there has to be more on offer for treatment and cure.
                  Having this additional funding (or the promise of) is a huge step in the right direction.
                  We live in hope...without hope what is life?
                  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.​​​​​​

                  Comment


                    #10
                    When I was newly diagnosed half of my voice box was dead. That's why I think a cure is a pipe dream.
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                    Comment


                      #11
                      I think a likely outcome may well be therapies to slow progression or even hold it at bay. There are now better treatments, although not a cure, for Parkinson's, for example. Even in the case of many cancers, there are not always cures, but therapies such as chemo, radium and endocrine.
                      Curing mnd, on the other hand, may emerge from stem cell treatments, or supercharging mitochondria to 'restore' redundant motor neurons. We may even reach a point when, if there is a clear cause of mnd, we may have some way of preventing it. If we look at everyone who doesn't develop mnd, what is it protecting them but not us...therein the answer lies?
                      As a complete aside, but observation...do people feel they deteriorate/symptoms are worse when not drinking or taking in plenty of water?

                      Comment


                        #12
                        I'll drink more when they come up with a bigger bag πŸ˜‰πŸ˜πŸ˜πŸ»πŸ»xx
                        ​​​​​
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                          #13
                          Olivia I do think hydration plays a big part in physical health & I certainly know if I don't drink enough water. Makes me feel sluggish & more fatigued.
                          Lots of ppl think they drink enough however probably don't.
                          Take care πŸ’™


                          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.​​​​​​

                          Comment


                            #14
                            I am still mobile. My dietician advised for my weight I should be β€˜drinking’ a minimum 1.4 litres of water a day and ideally 2.5 which I rarely manage even including other liquids. Would be a big problem without the PEG because I can only sip liquids.
                            Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

                            Comment


                              #15
                              Originally posted by Olivia H View Post
                              As a complete aside, but observation...do people feel they deteriorate/symptoms are worse when not drinking or taking in plenty of water?
                              Dehydration, even mild dehydration, affects everybody in so many ways and, if that dehydration becomes chronic, i.e., sustained, then I've no doubt it impacts on our health.

                              You'll see me always banging on about hydration, hydration, hydration πŸ™„ particularly for secretions, constipation, digestion, sleep, cramps and twitching. Water is a Wonder Drug 😏 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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