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Thread: Skin discolouration and uncomfortable sitting

  1. #11
    Forum Member
    Join Date
    Jul 2018
    Hi Amanda, hope the cream does the trick. I hope the downstairs arrangement works out for you, that's my worry, we dont have a loo downstairs

  2. #12
    Thank you Terry. :-)

  3. #13
    Unfortunately our stairs could not accommodate a stair lift, so it is great we have a toilet downstairs too. I hope that when the time comes Shrew, hopefully a good time away, you are able to sort something. When I think where we were 2 months back I don't know how we have sorted what we have, but you just do don't you. So I expect the next few months will be the same, in that whatever is thrown our way we get through it. x

  4. #14
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Amanda,

    Good to hear Richard's skin issue isn't the start of a pressure sore - did GP say what caused the skin discolouration?

    You're right, upheaval and change is hard on both of you, but physically it should be easer for you both from the get go, psychologically, hmmm, that takes a while...

    Given Richard's progression, if he hasn't been recently assessed by his OT, it's worth him having one.

    I hope you manage to have some quality "me time" - MND is an intensely selfish disease, it's too easy to let it consume you, so a break from it is very important for you, even if it's a few hours. Your health and wellbeing are equally important to Richard's.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #15
    Thanks Ellie, yes we were glad it wasn't. Not sure what the rash is maybe some reaction to medication, was vague but said this cream would make more comfortable. The OT has been this week, we now have a bed downstairs and a commode, and she is chasing the people who do the assessments. Thanks for your kindness, next week I hope to visit a very good friend of mine for a few hours, maybe get a stroll on the beach which I enjoy, love Amanda

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