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    #31
    I'm 12.6 kg heavier than before diagnosis, probably because of eating well, drinking beer and wine (not regularly but more than I used to) and practically no exercise. I have bulges we're I don't want them. But my neurologist is happy with my weight gain, probably for insurance for when eating becomes more problematic. I'm eating much slower than I used to as chewing can get tiring. But sounds like I won't have to consider a PEG for a longish time. Well I hope so anyway.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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      #32
      Hi Chris,

      NO !! Try to at least maintain your weight, regardless of muscle loss (& jelly belly )

      If you lose weight over a prolonged period, it can be hard to regain. The perceived wisdom is that the body needs extra calories in the early/mid stages of ALS/MND.

      Have you access to a Dietitian? It's wise to get an assessment - the rule of thumb is 35cals required per kg of weight, (35mls fluids per kg too) but a Dietitian will give you a plan specific to you, depending on your BMI.

      If you've decided on getting a feeding tube, I'd advise to start asking for it now, shocking as that may sound - sorry! I thought my Neuro was bonkers suggesting I get one "so early" on, but the advice was spot on.

      You don't have to use it until it's needed, but losing the ability to swallow can creep up unnoticed, and, before you realise it, you're down a few kgs or you're laid low with a heavy cold and can't face eating - these are just 2 reasons to get a feeding tube before one "is needed".

      I'm trying not to be the voice of doom, but rather I'm trying to sell the benefits of proactively getting a tube - not to mention that the stronger you are, the quicker you recover from the procedure...

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
      Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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        #33
        Hi Ellie
        Thanks for the advice it's much appreciated . I have been losing weight steadily since before diagnosis . I don't have a Dietician I will have a word with my OT


        The OT is the only person I see regular , the SALT rings now and then. I have been suffering with a back and hip problem that I had previous to MND that is getting very painful. My GP prescribed Tramadol but that has caused me a lot of stomach problems .

        I was referred to the Palliative care team and I am trying different pain relief , she was surprised that I didn't have a district nurse assigned to me so she has put that in place . So feel I've got enough happening at the moment and have enough problems with my stomach but when I get sorted will definitely consider a tube


        Love Chris

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          #34
          Hi Chris;

          Sorry to hear about your stomach trouble, hip leg pain and you losing weight.

          Maybe you can get a protein type all in one drink prescribed like Fortisip until you get a dietitian organized.

          Love Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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            #35
            Hi Terry
            Thanks for your reply . I will certainly try the Fortisip until I can see a dietician. I don't know how much weight I have lost because I cannot stand on scales , well I can with my trolley but I can't let go and balance .


            Even with my partner helping me ,we had fun and games in the bathroom yesterday , and still no correct reading !!


            Love Chris

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              #36
              Hi Pink,

              Sending you hugs & smoochies for the RIG procedure.

              I know you're probably quite anxious - who wouldn't be!! - but I'm sure you'll be home before you know it.

              And you're allowed to feel sorry for yourself afterwards - plenty of rest and painkillers.

              Love Ellie.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #37
                Good Luck with the procedure Pink,

                Like Ellie said, I am sure you will be nervous but you will be home soon.

                Let us know how you get on.

                Love and hugs,
                Debbie x

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                  #38
                  Good luck with it all x

                  Comment


                    #39
                    Be careful taking Tramadol. It is reported to increase the chances of falling. I took it for several years but as soon as I found that out I stopped taking it. My ballance improved a bit thereafter. But that was eighteen months or so ago and my ballance is now worse than then and nothing to do with pills. Lynne
                    Last edited by Lynne K; 15 October 2018, 21:38.
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                    I'm staying positive and taking each day as it comes.

                    Comment


                      #40
                      Thanks all. Just want it over with so I can build myself back up x

                      Comment


                        #41
                        Good luck Pink, we'll be thinking of you. XX

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                          #42
                          Hi Pink
                          Thinking of you , and wishing you all the best. Hope all goes well, wish you a speedy recovery and hope you soon feel tons better.

                          Helen xxx

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                            #43
                            Hi Pinkelle,
                            SaLT just left. Just had the PEG conversation... referral being made .
                            Seem to have got to this point very quickly and it’s pretty scary!!!
                            Marigold

                            Comment


                              #44
                              It is a shock to have THE conversation Marigold, that's for sure!!

                              Hope you won't have a long wait for the procedure and, just because you have a feeding tube does not mean you have to stop eating (if safe to do so)

                              You'll be in good company

                              Love Ellie.
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                              Comment


                                #45
                                Thanks Ellie,
                                That’s reassuring. To be honest, I truly didn’t see that one coming so soon!
                                But I really appreciate everyone’s support here.
                                Marigold

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