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Advice on motor neurone disease please

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    #46
    Thank you shrew x
    Meeting tomorrow with a consultant, a third different one, and palliative nurse so hopefully will get things moving. Or not

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      #47
      hope all goes well and hes doing ok

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        #48
        Hi KLH,

        I hope the meeting goes well tomorrow. It's good that your Dad is in agreement with your wish for him to be looked after at the hospice.

        Best wishes,
        Kayleigh x

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          #49
          Thanks Kayleigh
          The meeting went well. I was super anxious, haven't slept well for worrying, but the consultant and palliative nurse were very persuasive so my dad's wife agreed to hospice. I was mightily relieved
          They spoke to my dad too and he agreed
          So will chase up tomorrow
          One practical issue - he's on a ventilator and the mask has rubbed parts of his face red raw. I put cream on them but is there a better way of managing this? It hurts him a fair bit

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            #50
            Hello KLH, pleased you are getting help for your Dad and hope all goes well.
            Regarding the mask you can get a gel piece to place under the mask. Gecko nasal pad is one of these. My husband prefers to use pieces of Cosmopor E dressings. I cut them up and place them on the tender parts and it stops rubbing.
            Ask the nurses they'll have these dressings.
            Take care.

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              #51
              Hi KLH,

              I'm so pleased that the meeting went well and that no-one is objecting to your Dad being looked after in the hospice. Hopefully this has eased your stress a little, and you will be able to get a good night's sleep tonight.

              I don't need to use ventilation and so I am unable to advise you from experience about your Dad's mask. Perhaps a nurse could loosen the mask straps a little to make it sit more comfortably? Sorry that I haven't been able to offer much advice about this issue.

              Best wishes,
              Kayleigh x

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                #52
                Thanks again Kayleigh you have been so kind and helpful, if you're anywhere near West Yorkshire I'd come over and buy you a pint /sherry /coffee
                I'll have a Google about soreness x

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                  #53
                  Thanks again Kayleigh you have been so kind and helpful, if you're anywhere near West Yorkshire I'd come over and buy you a pint /sherry /coffee
                  I'll have a Google about soreness x

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                    #54
                    Good news, take care

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                      #55
                      Hello KLH, I did post about hubby's soreness and what works for him.

                      You must be exhausted, take care.

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                        #56
                        Hi KLH,

                        Good news that a hospice has been agreed on - it is a world away from a hospital on so many levels.

                        Re the mask soreness: the straps must be snug to get a good air seal, otherwise air will leak and, apart from lessening the BiPAP's effectiveness, even a slight air leak can cause sore eyes.

                        If your dad were in a home setting, I'd say to try different masks - he may have a basic enough silicone type rim, not the more comfortable gel rim. Does the hospital have any other masks? Are arrangements being made to have a machine in the hospice for him?

                        As Musicman's Wife said, the nurses should have a Cosmospor E dressing (or a Duoderm Extra Thin) dressing which will ease his discomfort and/or Cavilon cream or spray or other barrier protection.

                        He is in a hospital after all, nursing should be on top of it

                        Best wishes,

                        Love Ellie.
                        ​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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                          #57
                          Thanks all.
                          I asked for a mask change but told no. Will push it tomorrow. And ask for plasters.
                          The hospice will meet his oxygen needs apparently. Guess he'll need bottles? Unfortunately the mask is on permanently hence the worsening of the sores.

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                            #58
                            Hi KLH,

                            There's no gentle way of saying this really, I'm sorry, but using oxygen will most likely shorten your dad's life. It's not recommended for use in people with ALS/MND with respiratory involvement because of our weakened breathing muscles.

                            If you're all OK with that, then that's alright but it's something you need to be aware of.

                            Hospices, like hospitals, have oxygen on tap.

                            All the best to you and a big hug.

                            Love Ellie.
                            ​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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                              #59
                              Dear KLH,

                              Further to Ellie's advice, it looks like (from reading the information on the MNDA website) that your Dad should probably be using non-invasive ventilation (NIV). I don't know why all hospital consultants, doctors and nurses aren't aware that oxygen is not recommended for MND patients - but perhaps they have valid reasons for giving it to him? .... in the 'Do I need oxygen?' section of the MNDA guidelines, it says "if your oxygen levels are low, it may sometimes be given with caution".

                              http://https://www.mndassociation.org/wp-content/uploads/2015/07/08b-ventilation-for-motor-neurone-disease.pdf

                              Sorry to hear that you are not getting much support from the hospital about resolving the issue with the uncomfortable mask. I have not needed to use one, but I probably wouldn't be happy to use a mask if it damaged my face. I thought it was the responsibility of nurses in hospitals etc to do what they can to make patients as comfortable as possible. As your Dad is being cared for in an NHS hospital, it should not be up to you to provide the funding for a more suitable mask etc. You have got enough to deal with, and I am sorry that it is being left up to you to sort out.

                              Thinking of you,
                              Kayleigh x
                              Last edited by Kayleigh; 27 February 2019, 20:20.

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                                #60
                                Hi, you are so kind and helpful to people wanting advice. I haven't had to use a mask as of yet. Can I ask when you were diagnosed. ? I am new to all this, I was diagnosed in January, but had hand symptoms and slurring speech problems for quite a while.

                                Thanks kayleigh

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