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Losing arm function and feeding et cetera

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    #16
    hi ellie and everyone else
    thanks so much for the information regarding peg, pig and rig. at least now when we go to see the doctor i will have some information to hand and have a better idea of what he is talking about and what we would like. my husband was booked to have a procedure yesterday but refused to go as he feels he can still eat. yes i agree with others its wanting to hang on to normal. when you have any of these are you supplied with nutrition or do you blend the food yourself or do both?
    many thanks
    denise

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      #17
      Morning Denise, all nutrition is supplied by a community Diatician and he can still eat normally the tube is he needs it, he can still enjoy food

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        #18
        nunhead_man It's not the gut where the tube goes, it's the stomach (unless there's a specific medical reason contraindicating this)

        Yes, a low profile button is primarily for aesthetics, in adults at least. It's an option, most folk stick with the long tube.

        Yes, that leaflet outlines what's involved in the PEG procedure and subsequent optional switch to a button, but the vast majority of adults don't have a general anaesthetic, just sedation. I guess a button is better for children as they are active and want to look as 'normal' as possible.
        ​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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          #19
          denise I'm sorry this whole feeding tube issue is causing such stress for you, as it must be for Steve too. Ultimately it is his choice to make, hard though that is for you.

          As Hayls said, if he were to get a tube, he does not need to stop eating normally. Some people only use it for meds and water.

          I can still eat finely chopped food but it takes ages, so I use my tube for the bulk of my calories and water, and all of my meds. This takes the pressure off me to get my full calories orally, whilst still be able to enjoy snacks throughout the day. (My tongue barely move and my swallow is OK, not perfect)

          As I said, it is a choice each of us gets to make which is why it's best to have all relevant info.

          Big hug to you Denise.

          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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            #20
            Hi Denise

            Originally posted by denise View Post
            my husband was booked to have a procedure yesterday but refused to go as he feels he can still eat
            Oh dear!

            How did you get into that tangle? Was this your neurologist pushing Steve along?

            As Ellie says, it's my choice if I have a feeding tube or not and the thought of leaving my partner to have to feed me by mouth once my hands don't work just seems to be a real pfaff. Of course if and when I get this done there are some foods I'd like to still taste but the thought of just pouring in 2+ litres of water to keep me hydrated balances that off and cheers me up no end

            Warmly


            Andy

            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

            "Things turn out the best for people who make the best of the way things turn out"

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              #21
              You've probably have seen this link providing general information on feeding tubes https://mytube.mymnd.org.uk/ but there is also a link in "external resources" to the ProGas study within it which pulls together all the research on feeding tubes and compares PEGs, RIGs and PIGS. I found this a useful document. ProGas is a snappier title for "A Prospective Multi-Centre Evaluation of Gastrostomy in Patients with Motor Neuron Disease". SITRAN and MNDA.
              Best

              Robin

              Diagnosed 05/2017 Familial ALS Limb onset

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                #22
                Very succinct summary of the study findings https://old.mndassociation.org/wp-co...mendations.pdf
                Best

                Robin

                Diagnosed 05/2017 Familial ALS Limb onset

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                  #23
                  Good afternoon,

                  Thank you Guy that is a helpful summary
                  Warmly


                  Andy

                  ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                  "Things turn out the best for people who make the best of the way things turn out"

                  Comment


                    #24
                    Many thanks for those links Guy. Very helpful.

                    Doug

                    Comment


                      #25
                      I must remember to sign off as Robin!
                      Best

                      Robin

                      Diagnosed 05/2017 Familial ALS Limb onset

                      Comment


                        #26
                        Robin, there's a Signature facility which might be useful?

                        In your profile, click on Edit Settings, Account, scroll down to Edit Signatures, select it then click on Edit Post Signature where you can type what you want your signature to read and don't forget to click Save & Save Changes at the end of the page.

                        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


                          #27
                          hi everyone
                          thanks for all your help and advice. we got into this tangle because originally stephen had appointments for his breathing and so on but because of the virus everything was cancelled. the doctor phoned and i had a talk with him because stephens hearing isnt very good and he gets confused on the phone. the doctor asked about a breathing tube and a feeding tube and i agreed it might be a good idea to arrange both but i thought we would have a face to face with the doctor first so it could be explained better. after that i tried to find out as much as i could but that isnt helpful if i dont know what the hospital was planning to do or use. soon we will have an appointment with the doctor and i will be better prepared as to what stephen wants and what they are offering. stephen seems to have come round to the idea a bit more. i can understand that the thought of a tube sticking out can be a bit unnerving but if there are benefits and extra nutrients make him feel a bit better then it would be worth while.
                          love to you all - the disease is bad enough but the decision making is quite stressful.
                          denise
                          xxxxxxxxxx

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                            #28
                            Yes Denise, it can take a while to come to terms with the notion of 'artificial feeding' and nothing worse than feeling forced into making a quick decision, especially if he thinks he doesn't need a tube right now...

                            If you need any more insights, fire away.

                            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


                              #29
                              this might sound terrible but after reading what some of you have to say i said to my husband yesterday that it sounds ok. no more washing up, worrying about what to do for meals. perhaps i could have one too. ok i know i shouldn't joke but i was trying to lighten the situation. at least he laughed.
                              love to everyone
                              denise

                              Comment


                                #30
                                Thanks for the chuckle Denise.

                                At times, humour, even black humour, helps!

                                Doug

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