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    Hello Everyone

    I'm Debra. I'm caring for my husband who was diagnosed in October. He is so frightened that he has difficulty talking about it all.
    He needs to have a feeding tube (RIG) but is too scared to go into hospital to have the procedure as he is convinced that he will
    die there alone without me.
    I'm also more scared as time goes on because the decline is so rapid. He walked into hospital with a frame in October and after
    2 weeks of investigations he came home unable to walk more than a couple of steps. He can't walk at all now or even stand. His arms
    have weakened now too. His breathing is a struggle and he uses a NIV overnight. He has no appetite at all and the last time I managed
    to weigh him about 5 weeks ago he was only 7st 4, so I'm sure with the little amount of food I can get him to eat, he will be well under
    7st now. He has the ensure drinks and we have had lots of input and support from the MND team and the community team (which has
    surprised and reassured me because before the diagnosis our GP practice was diabolical) We have been given lots of aids and adaptations
    to the house are starting next week.
    Sorry if I have posted in the wrong place or in the wrong way, my head is a mess so I'm finding technical stuff a bit of a struggle.
    Reading the post's on here I see you are a very supportive group and who better to give understanding and advice than the ones actually going
    through the same thing.

    It is fine that you have posted here, although all we can offer is "unofficial" advice and support from people who know what you are going through.
    Sounds like nutrition is a major factor due to his weight loss. The idea of hospital procedures can be daunting for some, but feeding tube placements should be pretty straightforward. My PEG (different procedure) was done as a day case (in and out on the same day).
    I guess he needs to talk to someone to balance the "risk" of the PEG procedure against the very real risk of malnutrition if he doesn't get it.
    Just my thoughts - I am in no way medically qualified.
    Hope you find something that works for him.
    Keep posting.
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
    Still wondering what the future will bring.


      Hi Debra, don’t worry about techy stuff post anywhere you like and someone be along to comment.

      Sounds like you have great physical support but are unsurprisingly struggling with the emotional side. You say your hubby won’t talk about his illness, is that with you if so might he open up a little more to someone outside of the family. I personally found this to be the case. Have you considered contacting the connect team to see if a volunteer visitor is available in your area.


        Welcome BobnDeb & sorry to hear of your husbands diagnosis.
        My partner was diagnosed in October also. Like yours, he won’t talk about it all, he tells everyone he’s fine, but his progression seems really fast now. I can’t offer any real help to you, but I know exactly how scary it all is. The rapid weight loss is hard to deal with, my partner has lost the ability to speak & struggles to swallow, so limited to soup now, but every meal is an ordeal.

        You have found the right place though for support & help, from people who will be going the same things.
        Take care


          A warm welcome to the forum BobnDeb, so sorry you've had cause to join us. Thank you for having the courage to make that first, scary post...

          You're in a truly awful situation with someone you dearly love and I'm going to ask a question which you do not have to answer publicly: do you know if Bob actually wants to get a feeding tube? Has a date been set for the procedure?

          Has anyone spoken to you about the pros and cons of a 45kg/7stone man having the procedure, the recovery process and regaining weight?

          Has the idea of using an NG tube on a short-term basis to help with some degree of weight gain been raised? (An NG tube goes from the nose to the stomach, is put in in a hospital, but is a much less involved procedure needing no incision)

          Maybe his support team has already discussed with him how his very low weight impacts on his progression and general quality of life, but so much of our wellbeing is linked to nutrition and I'm guessing the weight loss has been going on for a while now, albeit not necessarily at the same rate.

          We're here for you both.

          Love Ellie xx

          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


            Well done for managing to post at all!! It took me a lot longer to figure it out! You have definitely come to the right place. The support on this forum is marvellous. The only thing I would add is that don’t be afraid to contact your local hospice. It sounds scary but I’ve been with mine for several years. They offer lots of support to the whole family and treaty things too. If your husband doesn’t want to, you could get support for yourself.
            wishing you both all the very best. Xx


              Hi BobnDeb welcome to the forum. I'm sorry for the situation you're in. Adjusting to the diagnosis is really hard. As has been suggested above the hospice should be able to offer you support including counselling even if your husband doesn't wish to have any support himself.

              It really sounds like the nutrition aspect needs to be resolved as soon as possible. What have the hospital and the speech and language therapist said is the next step? Can they help reassure your husband? As Ellie has suggested is there a temporary measure to help improve gis weight? The longer the situation carries on as it is the more the risk will increase so if your husband agrees to have the feeding tube this really does feel like it should be a priority for the medical professionals to resolve. Hope this can be progressed soon for you both x


                Hello everyone,
                Thank you all for your warm welcome and useful replies
                After reading all your suggestions AND a very distressing choking episode, which has left Bob even more not wanting to eat, I have again
                approached the subject of the RIG, and he has agreed that he needs it.

                WheelsOfSteel I spoke to Bob of the real fear I have about malnutrition and he said he is also frightened of that situation.

                Bowler Thanks for the info about the connect team - I hadn't considered it, but am doing now, also I think the MND nurse is going to put me in
                touch with the local hospice team.

                JoM It's terrifying isn't it when things change daily. You do get some hope though from reading the experiences of others on this forum. Is your
                partner going to have a feeding tube.

                Ellie Thank you, you actually gave me the nudge to ask him directly if he wanted the tube, it didn't really occur to me that he might not want it because
                we said at the diagnosis stage that we would have everything and anything that was offered to us. So he has said yes at last. I didn't give him chance to
                change his mind, and contacted the MND nurse who has already referred to the nutrition team. They are meeting today to discuss him and so we should
                hear something soon. I also contacted the dietician and she is coming to see him on Friday to try to calm his fears about the procedure and to give advice
                on trying to keep stable weight wise until it can be done.

                Sarahw Thank you, the hospice was mentioned early on but I didn't follow it up at that stage, but I think you're right it may be time, if not for both of us
                maybe I will get benefit from their input now.

                Claireflo Thank you. I am looking to get referred to the hospice team now because as you say I may benefit from the services they offer. I have been in touch with the dietician who is coming out to see us on Friday and she has contacted the Speech and Language Therapist so they are all going to try to
                reassure Bob about the tube and the procedure of having it fitted.

                I feel really fortunate to have some great professional help readily available and now to have the support from all of you as well has really lifted my spirit.
                THANKS AGAIN


                  BobnDeb my partner is refusing the feeding tube 🙁
                  He said no first time it was mentioned, we then had a phase of me trying to discuss it & slowly chipping away, but he is still adamant he is never having it. I’ve accepted that now, I think it’s his way of keeping control of just one thing, but I do feel he’s missing out on the life he could be having right now, as he is so under nourished & exhausted because of it.
                  I’m glad your husband has decided to give it a go though & 🤞🏻they can do his op soon. I’m sure it will be a huge help once it’s done.


                    Originally posted by BobnDeb View Post
                    He needs to have a feeding tube (RIG) but is too scared to go into hospital to have the procedure as he is convinced that he will die there alone without me.
                    Debra, if Bob were to know the ins and outs of what the RIG procedure entailed, would that allay or heighten his anxiety?

                    For example, does he know that he can be awake during the short procedure or that, if needed, he can use his NIV during it too?

                    There is an MND/ALS specific website with easy-to-understand info on all aspects of getting, or not getting, a feeding tube called myTube - click here to access it. xx
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                      JoM - Yes I understand that feeling you have of him missing out on life right now. When we were told the diagnosis I was trying to be positive and planning the things that we could do to make the most of our time together before the MND changed things, but that wasn't the case because the decline was so rapid and I am sure that the lack of nutrition is a major factor in that.
                      I can fully understand your partners wish to keep control of that one thing and you have done really well to accept that.
                      I'll let you know if the op can go ahead and how it goes


                        Ellie Thanks for the link to the website Ellie, I will take a look at it later and judge if it would be ok for him to see or if I would just get the information so I can tell him anything he asks about it later. We weren't aware that the op can be done with the use of a local anaesthetic and the NIV until Monday when the MND nurse told me, that made him feel a bit easier about it. I have told the nurse and the dietician about his fears and they are going to have a chat with him. The dietician is coming to see him on Friday so I hope he will be less anxious after she has seen him.


                          BobnDeb Debra, I found this <8min video explaining about the RIG procedure which you may want to watch: it's Vimeo, not YouTube, but you don't need to join to watch the video.

                          I watched it and can assure you that it doesn't show the actual procedure on a person, just using benign graphics, def no blood and guts!

                          The hospital in the video keeps patients in hospital for one night but this does vary, so don't think it odd if Bob's hospital normally have their patients stay 2-3 nights. xx
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                            Morning Ellie,
                            Thank you so much for the video. I have watched it and I'm going to ask Bob if he wants to see it or if he just wants the information from it.
                            It's a great video actually, simple and informative. To be honest it has made me feel a bit better about the whole thing. Xxx


                              Yes, it is a good video, honest and accurate too. It's all to easy for the mind to conjure up terrible thoughts and images when faced with the unknown: relevant, factual and appropriate info can work wonders. Of course, not knowing facts is how some people cope, which is perfectly reasonable too.

                              Originally posted by BobnDeb View Post
                              To be honest it has made me feel a bit better about the whole thing.
                              I thought it might and I'm glad it did! xx

                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.