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    #1

    Losing arm function and feeding et cetera

    We have just begun a debate here because I am slowly losing the use of my right arm as well as being down to about 50% of function on my left.

    This will eventually mean that I cannot feed myself.

    I presume I need to be preparing for this sooner rather than later as with having move house et cetera and wonder if I should be on the blower to my new neurologist to ask to get on the list for a stomach feeding tube as being fed by the mouth by my wife on a regular basis may well be quite a chore for her and a pain for me.
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"
    Tags: None
    #2
    Don't know if you'd be into these Neater Eater gadgets Andy, nor do I know if you'd need a 2nd mortgage to buy one...

    https://neater.co.uk/suitability/

    Feeding tube is an option but hard to get your head around with an intact swallow and slow progression? I guess you just do whatever is best for your situation.

    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

      #3
      Pretty soon they won't need us humans; makes me happier about checking out earlier than I thought. x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

      Comment

        #4
        Good morning Matthew and Ellie

        Thank you both.

        The neater eater is kind of interesting - I've submitted an enquiry and I'll see what happens - will report back.

        And yes Ellie you are correct about feeding tube with intact swallow but there is the whole bag about getting a feeding tube whilst I'm still fairly fit alongside how I'm going to feel feeding through a tube rather than being fed like an 18 month old.
        Warmly


        Andy

        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

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

        Comment

          #5
          Hi Andy,

          If I were you I would have a RIG fitted, I have one because I can’t swallow food anymore but I am still physically active. The reason I would say have it fitted now is because as much as I really didn’t want it I must admit in a different way to you it has taken all the pressure of eating by mouth and actually works really well and is so easy to use. I put a back pack on with the feed at 3.00 pm and it finishes at 9.00 pm. Apart from going through the procedure to have it fitted it hasn’t had any side affects. So at least you’d be able to take away the need for your wife to feed you all the time but also when you do fancy eating something you have the the choice to do so. It’s definitely best to have it fitted whilst you well enough to deal with the procedure and it’s quite possible you will have to have it at some point.

          Regards

          David R

          Comment

            #6
            Good afternoon David,

            Thank you - as Ellie was saying it's a bit of challenge when I can still swallow but if I can't bring my food to my mouth then I'll probably be using a straw if I feed myself anyway.

            As someone the forum will know, I'm transferring from care at Kings London to Southampton General and I have an appointment there on Monday so this issue is on my agenda to discuss with a Dr Pinto who I have not met yet
            Warmly


            Andy

            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

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

            Comment

              #7
              I think we're at a similar stage with the upper limbs and not able to bring food to his mouth, however right now I just feed my partner. One forkful for him and one for me type situation. I know this isn't possible for all if you don't have a partner/carer around, but I guess we're trying to hold off until swallowing is affected.
              It is difficult to make these decisions, as you want to hold on to any sense of normality as possible.

              Comment

                #8
                Hi Andy

                I'm now struggling to lift my arm enough to eat easily. I had a PEG fitted at end of last year as my breathing is deteriorating slowly (PIG procedure) - for me it was all about keeping my options open. My swallowing is not perfect but I'm still getting by without using the PEG at the moment.

                I also looked at the Neater Eater. I wasn't convinced with the original (mechanical) ones and my OT had not had great success with them either. The new "robotic arm" version is a very different beast, however. You should be able to see this on the link Ellie sent. I tried this and was very impressed. My OT and SLT applied for joint funding and have just been successful! I'm sure it's a bit of a lottery depending on where you live though. I feel this will give me an option, for a while, between tube feeding or being fed by my wife.

                Best

                Robin
                Best

                Robin

                Diagnosed 05/2017 Familial ALS Limb onset

                Comment

                  #9
                  Good morning Tess and Robin

                  Thank you for your messages.

                  I do have a partner who lives with me and it is with her I have been discussing the question of whether she wants to feed me or not – note the one fork for you and one for for him process!

                  Yes the neetereater is being quoted to me at about £5000 to buy or about half that for a 12 month rental so not really something I want to find myself Unless it is really the bees knees

                  And can I ask what is the difference between a PEG and a RIG - and sorry what is a PIG procedure?

                  Warmly

                  Andy
                  Warmly


                  Andy

                  ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

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

                  Comment

                    #10
                    Hi Andy

                    The robotic Neater Eater is v expensive but v new - I reckon the price will drop in time. Mine is fully funded so worth trying if\when you're interested .

                    The PIG procedure is not available everywhere, but is used when you're breathing has deteriorated and it's not comfortable laying flat on your back. They use x ray imagery to view and guide the tubing etc - unlike the PEG. Otherwise it's very similar to the PEG procedure and you're left with the same tubing etc at the end. I wore a Nippy with nasal pillows during the procedure (about 40 mins) as they needed to lightly sedate me. I preferred the PEG to the RIG as it was reported to be more robust and needed less aftercare.

                    There's plenty on the web about it, but as an engineer it looked to me just like horizontal directional drilling that you use to install pipelines under rivers and rail lines!

                    Best

                    Robin
                    Best

                    Robin

                    Diagnosed 05/2017 Familial ALS Limb onset

                    Comment

                      #11

                      Just to add: both in the PIG & PEG procedures, the tube is placed from the inside, whereas in the RIG procedure, the tube is placed from the outside in.

                      Tubes fitted in PEG & PIG procedures usually have internal disc retainers , whilst tubes used in the RIG are usually retained with an internal balloon.

                      Long tubes can be replaced with low profile buttons once the tract is fully healed (2-3 months)


                      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

                        #12
                        He warned that if you wait too long you won't be able to have the PEG fitted as you will not be fit enough to have it.
                        Don't fear what you don't know x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                        Comment

                          #13
                          Good afternoon all

                          Thank you Ellie for your usual detailed comments - so from a consumer point of view (!) which of the three you mention are preferable - PIG, RIG or PEG?

                          And for the avoidance of doubt I have mentioned this to my new neurologist and want to arrange an appointment as soon as they can.
                          Warmly


                          Andy

                          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

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

                          Comment

                            #14
                            There is much of a muchness between the 3 methods, Andy.

                            Anecdotally, the tract seems to heal better with the PEG & PIG methods, i.e. placing the tube from the inside to out, but many hospitals only offer the PEG and RIG. People with compromised respiratory function usually don't get a choice and have RIGs (I know that's not you) and often hospitals and/or doctors will have their preferred method.

                            RIG - no sedation required; balloon retained tube placed so can easily change to low profile button.
                            PEG - sedation required as scope and tube are passed through the mouth; tubes have a bumper as a retainer which doesn't preclude the subsequent swapping for a low profile button, it's just a wee bit more involved.

                            Your Neuro will probably have his/her preference as to what'd suit you best.

                            Good luck.

                            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

                              #15
                              Good morning Ellie,

                              Thank you again.

                              I guess that makes sense in regard to the PEG and PIG as working from the inside presumably gives the mechanics on the job more time to think about sealing it properly both to the gut and making a skin port.

                              I'm not quite sure what you mean by a low profile button but I assume this relates to how much of the gut tube shows on the outside?

                              I did find this which relates to children from my first hit on Google but I think that answers my question - https://www.ouh.nhs.uk/patient-guide...astrostomy.pdf

                              Warmly

                              Andy
                              Warmly


                              Andy

                              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

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

                              Comment

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