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  • MNDConnect
    replied
    Hi Bexxy

    Is your husband struggling to actually swallow the medication? Sometimes gagging/retching/belching can be caused when the medication doesn't go down smoothly and catches in the throat. Lots of medications can be provided in a soluble form which can be easier to swallow than trying to manage a tablet. It's worth speaking to your husband's GP or pharmacist about this.

    Are the Speech and Language Therapist (SLT) and a dietician providing you and your husband with support and advice? Even if he chooses not to have a feeding tube, they should be advising on textures of food and nutritional advice. We do have an Eating and Drinking Guide which provides lots of information about eating and MND as well as recipe ideas. Please do let me know if you would like a copy and I can send one out for you.

    Are you happy to let me know whereabouts in the country you are? I'd be happy to look to see what local support we have that might be helpful. Please do feel free to contact us either via private message or at [email protected] or on 0808 802 6262 and we will do everything that we can to support both you and your husband.

    Best Wishes

    Rachel
    MND Connect Adviser

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  • Admin_MND
    replied
    Originally posted by richard View Post
    Admin_MND Come on Admin this is where you need to urgently step in and help Bexxy get support. Thanks.

    Richard
    Thanks Richard, we've let the MND Connect team know about this thread, so hopefully one of them will be able to provide some guidance soon.

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  • richard
    replied
    Admin_MND Come on Admin this is where you need to urgently step in and help Bexxy get support. Thanks.

    Richard

    Leave a comment:


  • Bexxy
    replied
    Thanks Ellie. We seem to be in a black hole with no mnd nurse covering our area

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  • Ellie
    replied
    You both need more support - hopefully his hospice does hospice at home.

    Big hug to you Rebecca xx

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  • Bexxy
    replied
    He has some support from the local hospice. A nasogastric tube was mentioned but he won’t go in to hospital so no use. Paramedics were out and told him if he didn’t go in for IV antibiotics he may not survive but he still declined.

    Leave a comment:


  • Ellie
    replied
    Has he a palliative care team? They are often better at taking an overall view of people.

    I wonder if he can get a nasogastric tube as an interim solution.

    Leave a comment:


  • Bexxy
    replied
    Hi ellie

    he has had a similar period of illness to what he had last October, 5 weeks now. Chest infection followed by oral infection followed by urine infection all accompanied by lots of unexplained symptoms and an assertion by the GP that there was no infection but he was in fact in end stages.

    Part of this is that he has been unable to eat. He feels like everything sticks in his throat, even slightly thick liquids. He didn’t want a feeding tube before but now regrets not getting it. The main issue he had with getting it was the 5 day hospital stay to get it. He is pencilled in to get it in a couple of weeks but we shall see if he backs out.

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  • Ellie
    replied
    Originally posted by Bexxy View Post
    ... he has recently lost the ability to eat and does not have a feeding tube fitted.
    Can I just back up from the burping, Rebecca - can you expand on the "lost the ability to eat" please. Is it his swallow preventing him to eat solids and he can still drink Fortisips and swallow tablets?

    Is there a plan to get a feeding tube or, if not, I hope there is a plan and support for you both.

    Re the belching, gagging,retching: I do think his GP/palliative nurse/Clinic or community SLT should be told. It may be reflux and a PPI medicine such as Lansoprazole will sort it, but it may be swallow related or appetite related.

    Best to you both.

    Love Ellie.

    Leave a comment:


  • Bexxy
    started a topic Belching

    Belching

    Lovely topic I know.

    My husband has started suffering gagging/retching/belching combination when he takes medicine and sometimes when drinking the fortijuice. For context, he has recently lost the ability to eat and does not have a feeding tube fitted.

    Does anyone else experience this? Is it normal? Anything to help prevent it?

    thanks as always
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