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Type: Posts; User: Julip

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    My local MNDA branch has been amazing regarding...

    My local MNDA branch has been amazing regarding support sourcing equipment.
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    Thank you all so much; I feel so much more...

    Thank you all so much; I feel so much more positive just getting this off my chest yesterday. I have resolved to be firmer with him and have contacted Hospice at Home (Sue Ryder) to increase the help...
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    Tired, frustrated and sad

    :(

    My husband has outlived his prognosis, which is great, but I'm so, so tired I feel like we're not feeling much joy any more. He has bulbar onset and everything is like a mental puzzle because...
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    I think there's a squeamishness in most health...

    I think there's a squeamishness in most health care professionals about end of life discussions. As a nurse working in the community I found it really difficult to get GP's to carry out anticipatory...
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    I'm always amazed by the quality and volume of...

    I'm always amazed by the quality and volume of advice I get from this forum. Thank you so much for your help xx:)
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    Increasing breathlessness

    My lovely husband was diagnosed with Bulbar onset MND 18 months ago. Symptoms began 2 years ago. He is experiencing increasing breathlessness at random time but it is worse at night. BiPAP helps a...
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    Thanks Terry. He refuses to use low froth so has...

    Thanks Terry. He refuses to use low froth so has the tiniest smear of Colgate. I am finding the district nurses to be really disorganised when it comes to equipment which is slightly specialised.
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    Electric suction toothbrush

    Has anybody found an electric toothbrush which fits onto a suction machine? I've convinced Michael to stop cleaning his own teeth after one too many cases of aspiration but he's not impressed with...
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    Thanks Terry. It does feel like a tickly throat...

    Thanks Terry. It does feel like a tickly throat kind of thing.
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    Non-stop coughing

    M has been coughing pretty much non stop since 3 pm. He is using his cough assist, I am doing suction but it's unbelievably persistent and paroxysmal. His whole body shakes when he tries to cough. He...
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    Holiday with an adjustable bed

    I've just been on the interweb for a good four hours looking for holiday places with adjustable beds. Or even just the one adjustable bed; I'm happy to bed down on an airbed. Can I find any? No....
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    Thank you Mickmac. I've spent hours online...

    Thank you Mickmac. I've spent hours online looking for gadgets but I hadn't thought about the Miami.( I used to train carers in how to put them on, so you'd think I would know! )
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    Tricky neck issue

    Mike's head is really feeling heavy now and even though he uses his Head-up collar still experiences a lot of pain. He has paracetamol regularly and uses a heat pad which both help. He can't now get...
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    Many thanks Barry. This is the response I got...

    Many thanks Barry. This is the response I got from them:

    Hi Julia,



    Apologies for not responding to your email earlier. I have been out of the office teaching.
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    Problems with Headup collar / Sheffield Snood

    Michael has been using his Headup collar for short periods and after about 5 hours of use the adhesive began to lift off the front support leaving the Velcro on the collar and the support peeling...
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    Story books for non-verbal Grandpa

    My husband used to love reading books to our grandson who is 19 months old. Now his voice has gone I'm looking for some books with sound effects that they can share together but I'm not having much...
  17. Thread: Mouth Care

    by Julip
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    2,879

    Ellie, he's on Hyoscine patches. He tried...

    Ellie, he's on Hyoscine patches. He tried glycopyrronium but got horrible side effects. We have just got a suction machine so I think it might be a good idea to offer suction at bed time. Thanks, as...
  18. Thread: Mouth Care

    by Julip
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    2,879

    Thanks for the tip about sitting in the shower...

    Thanks for the tip about sitting in the shower Terry; at the moment he's sitting on the loo seat and dribbling onto a towel which he dislikes. I think I should also keep a record of what he's...
  19. Thread: Mouth Care

    by Julip
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    2,879

    Mouth Care

    I have a conundrum. Mike has always been really meticulous with his mouth care. He won't give up the Colgate for a low froth alternative :rolleyes:. We tried Sensitive Teeth Listerine yesterday to...
  20. Thread: Suction machines

    by Julip
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    Suction machines

    We've been waiting a week now for the community nursing staff to get their act together but we're still waiting for suction for Michael. I used to train DN's and Carers in using both the Laerdal and...
  21. Thread: Car sickness

    by Julip
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    Thank you so much Ellie. You are always welcome...

    Thank you so much Ellie. You are always welcome to give me your opinion!! We'll give your suggestions a go xx
  22. Thread: Car sickness

    by Julip
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    1,290

    Car sickness

    My husband has become increasingly nauseous in the car as the MND has progressed. His neck is now weak but he finds it too hot to wear his collar. This morning he was sick after a short car journey....
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    Hi Chrisp. Thank you for your insight.Mike's...

    Hi Chrisp.
    Thank you for your insight.Mike's just got a Gridpad for speech (bit reluctant so we're continuing to communicate through the ancient art of Mime). He also has a cushioned lap pillow...
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    Hi Ellie. Thank you for taking the time to reply...

    Hi Ellie.
    Thank you for taking the time to reply in such detail. He's just had a respiratory check up and although his Base is a little low everything else is great; actually better in some...
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    Ovrbed computer table

    Hi. My husband is finding it tricky to hold stuff and is exhausted so spends a lot of time in bed. I've found a few overbed tables with adjustable tops in two sections but the only ones with reviews...
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