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Telephone consultation with GP surgery re nutrition/food supplements🧀🍗🍧

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    Telephone consultation with GP surgery re nutrition/food supplements🧀🍗🍧

    Had a planned T/C call to discuss diet and prescribed nutritional supplements, as requested by GP surgery.

    Anyway the person works for the CCG and is reviewing all prescribed food supplements.

    Currently Im prescribed Fortisip with protein. To be taken as and when. (This was initially requested by my community palliative care nurse).

    She ( CCG dietician )advised that to gain back some weight I have a supplement drink regularly (daily not ad hoc) & continue with high calorie snacks and meals where possible. (Lots more discussion on diet but not going to bore further with all that)

    She then wanted to change the script to Fortisip minus the added protein....to be fair to her she did say that she didn't think I needed the protein and to be transparent (her words) there is a cost implication.

    My view is (purely non medical & non researched) if MND results in muscle wastage surely additional protein is a support. So I expressed that view. Anyway the upshot is the prescription is staying the same. To be reviewed. I'll keep a check on weight (fortnightly)


    ​​​​​I'm thankful my friend supported this 3-way conversation over my phone...using loud speaker and my friend as an interpreter when I couldn't make the words clear.


    I advised her ( CCG dietician) to check the MNDA website for dietary advice 😂😂 she said she will. I bet she thought blumin' cheek😂😂
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

    #2
    Apart from the amount of pall bearers our weight will never reach obese levels. 😁🤗😁🍪xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    Comment


      #3
      matthew55 but a little additional regained weight would be great just now😉
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

      Comment


        #4
        Lol. I've put it on with just a couple of extra bottles. Never thought I'd be happy to be fat! 😁😂😂👌xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment


          #5
          Originally posted by LindaB View Post
          ... to be fair to her she did say that she didn't think I needed the protein and to be transparent (her words) there is a cost implication.
          To make that dermination, the Dietitian must have calculated your current average daily intake of protein and deemend that you don't need the extra ~5g of protein the enriched Fortisip provides - do you know what RDA/RNI protein she calculated for you? That could be in the "boring bits" of your discussion but, well, you know by now that I love the minutiae 😏😏

          But yes, a diet with adequate protein is good for neurodegenerative conditions, in general. xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Originally posted by Ellie View Post
            To make that dermination, the Dietitian must have calculated your current average daily intake of protein and deemend that you don't need the extra ~5g of protein the enriched Fortisip provides - do you know what RDA/RNI protein she calculated for you? That could be in the "boring bits" of your discussion but, well, you know by now that I love the minutiae 😏😏

            But yes, a diet with adequate protein is good for neurodegenerative conditions, in general. xx
            To be honest she didn't mention anything about RDA/RNI - she asked me basic questions about how many meals and type. That was the boring bit.

            It really was about the CCG cutting costs IMO.

            My Neuro team has just recruited a locum dietician so I'm hopeful of more specific support from someone with a more in-depth knowledge of MND.😉😘
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

            Comment


              #7
              I would expect the Dietitian to have given you a target figure of protein, especially as she is changing the Fortisips.

              See what the other Dietitian has to say anyway.

              As an fyi, my protein target is 60g, which is slightly above the standard RDA for my weight, so I know what to aim for daily. xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Thanks Ellie 💙
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                Comment


                  #9
                  LindaB

                  We have a phone appointment with a nutritionist in March. I have been buying protein enriched Mars Bars, yougurt and Lidls do a nice enriched chocolate pudding.

                  We just got told to have a calorie rich diet, which isn't doing my waist line any good.

                  Thomas gets tried very quickly when eating.
                  Donna

                  Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

                  Comment


                    #10
                    DeeH that was the basic advice I was given...keep it healthy but calorific. I seem to have lost my sweet tooth so I'm more savoury snacks.
                    Does Thomas have nutritional supplement drinks for when he is very tired?

                    xx
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                    Comment


                      #11
                      Originally posted by LindaB View Post
                      DeeH that was the basic advice I was given...keep it healthy but calorific. I seem to have lost my sweet tooth so I'm more savoury snacks.
                      Does Thomas have nutritional supplement drinks for when he is very tired?

                      xx
                      That's why we wanted the appointment from the nutritionist/dietician
                      Donna

                      Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

                      Comment

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