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MND bulbar onset experience

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    #91
    Originally posted by Mmsm View Post
    Dietitian try her best but still can't manage the nutricia food for the feeding machine because my body don't been accepted, she advised a anti acid them GP prescribed but still not working. ​
    I'm glad you are under the care of a Dietitian and I'm sure she has things under control.

    Because you went straight to pump feeds and never had liquid feed syringed through your feeding tube, I presume (hope) the pump is set at a very slow rate and the feed volume is gradually and steadily being increased - how many ml/h and how much feed are you being given? Also, because you lost a substantial amount of weight (33% of your bodyweight), I hope that you're on a plain enough feed for now to allow your digestive system to get used to enteral feed and feeding? 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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      #92
      I have my pump set to max so 1ltr takes 2.5 hours. No issues whatsoever. ✔️
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #93
        Originally posted by matthew55 View Post
        I have my pump set to max so 1ltr takes 2.5 hours. No issues whatsoever. ✔️
        Yes, but your stomach was well used to having Ensures and who knows what being syringed into it, Mmsm has only got her PEG tube and has gone straight to pumping enteral feeds - different scenario, different stomachs too. 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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          #94
          Very true we are all different 👍😁🤩😍xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #95
            Ellie I start feeding 25ml/h and increase 25ml. After a week I'm on just 100ml/h.
            Because my weigh still drop dietitian change my feeling food for energy nutricia. But the nauseas and sickness never leave me. Medication and more medication just makes me feel worse.
            Because I'm fast progression the team it's struggling to help me in time.
            I decided stop all medication with there knowledge and she witch medication make me feel bad, include the food feeding tube.
            The nauseas stop but acid come in force.
            ​​​​This moment I'm in yogurt, milk, forticip, some food yesterday..
            Even dietitian is a bit lost about how I'm react all this.
            I'm just 47 years old, I should be more tolerate to medicines.

            Last weekend me and my partner went celebrate our anniversary and I need rent a wheelchair 😭.
            How do you cope with all this changes where you lose all your independence in 5 months.

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              #96
              Sadly it is the most evil of diseases as it robs us of our world. I wish there was something I could say to lift you but I can't think of any words that wouldn't sound false. x
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                #97
                Originally posted by Mmsm View Post
                I should be more tolerate to medicines.
                Are you taking a PPI med such as Lansoprazole, or a standard antacid?

                ​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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                  #98
                  Ellie i start lansoprazole this week. Still not do anything but need wait few more days.
                  matthew55 I completely understand thank you

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                    #99
                    I couldn't handle the fortisips too. Try smooth soups - much gentler. xx
                    Copyright Graham

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                      Hi. How can this be possible? 5 months ago I didn't even dream of being sick, today the wheelchair arrived. How it moves so fast!
                      I'm losing strength in my neck and when I stand up I can't stay longer than 10 minutes because I feel my chest compressing my stomach and that's when the acid rises.
                      I can only sit in an inclined position, even to feed myself. If I sit 90 degrees, the pressure is the same as standing.
                      What's the next fase of detioration? What gonna happen?
                      I'm scare 😔 I try not show my son's but I'm really scare 😭​​​

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                        Hi lass - I can't tell how it will progress but we all hope it will not be as fast as you fear. We are all locked in our fears, but that doesn't make it any easier does it? Get out in your wheelchair. Will your sons push you? xx

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                          My head is semi permanent in a down on my left shoulder. Belly button gazing! I try not to think about tomorrow and worry about something that hasn't happened yet. Stay Strong. 🤗😁😍😘xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                            Hi Mmsm, I'm so sorry to hear about your symptoms. It must be so scary.

                            My mum had a peg fitted and for a few weeks she was nauseous. We then realized that it also coincided with her starting on rilozule (not sure that's the correct spelling). As soon as she stopped taking course of the medication she also stopped feeling sick (literally the next day).

                            I really hope something works for you as feeling nauseous on top of everything else you are going through must be so hard. Stay strong.

                            My mum also has bulbar onset.

                            Best wishes,

                            Deborah

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                              I gave up R ages ago but I have heard of it causing nausea in some livers. 😁🤗😘😍xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                                just sending love to all xxx

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