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    A couple of issues

    I have a couple of things I would like to ask. Firstly, does anyone else’s MND seem worse in the colder days, I seem to be struggling so much at the moment and secondly, does anyone suffer from blisters on their body. My carers said they have other clients with MND and they have blisters on parts of their body. Just curious x

    #2
    I'm thinking cold weather means you use up more calories which in turn will make you more tired. Bad weather is a bit depressing which also doesn't help.

    Not noticed blisters on Stephen but sometimes he complains of being itchy. I bought udder cream off Amazon which seems to help his skin from drying.

    😘
    when i can think of something profound i will update this.

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      #3
      Sorry you are having a rough time. I think the cold brings on muscle spasms.

      I've not had blister issues. Is it from rubbing against something ?
      X
      Diagnosed May 2021 bulbar onset als.

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        #4
        I've felt more uncomfortable in the colder weather for a few years, particularly if not very active whilst outdoors - muscle aches, less fluid movement / stiffer to move.
        I also find the extreme hot weather uncomfortable in a 'draining' sort of way, but the muscle aspects disappear and seemingly fewer fasciculations when warmer.
        I notice I'm less comfortable (with muscle ache) indoors if a building is cold too.
        2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
        Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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          #5
          In my case it seems that as I have lost body mass that I have started to feel the cold more 🥶
          Foxes Never Quit 💙

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            #6
            Madge MND muscles definitely do not like the cold! They tighten, cramp and spasm, so do your best to stay warm.

            Blisters?? I don't like the sound of that; are they on a swollen limb? Are they big? Fluid filled? From friction? xx
            ​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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              #7
              Madge yes my muscles are way worse now its gone colder. cramp a lot and definitely stiffer. Also feel less coordinated. My back of shoulders are beginning to feel a little uncomfortable at night too. I am nice and warm in bed however. no blisters! x
              Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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                #8
                the cold is a no go I went swimming in the sea last March couldn't move and my jaw locked. bit different but I'm getting hiccups alot any body experience this ? i have no cough or any thing else

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                  #9
                  My MND started in my right hand and one of the first things I noticed, over a year before dignosis, was that I couldn't hold a teaspoon while on a very cold evening on a camping holiday. Even now, two years later, I can hold a spoon when my hands are warm, but not when they're cold. Also holding a pen or pencil to write is far more difficult when my hands are cold. And typing too. But I don't notice the cold weather affecting any other symptoms. They are all getting gradually worse, but that's the nature of MND unfortunately.
                  No experience of blisters up to now.
                  Diagnosed November 21, ALS limb onset, started in right hand June 2020

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                    #10
                    Thank you all for your responses. I’m now having trouble to feed myself, I can’t get the spoon to my mouth or pick up items 😖 it’s so depressing x palliative nurse visited today, the blisters are on my bottom cheeks, I’ve also had a bad bout of thrush which has been very unpleasant. One blister has burst but the others still have fluid but no infection but she said it could be friction or from the thrush. She is going to get me a mattress topper to make it softer for me and some dressings for me 😢
                    to make me feel better I had reflexology which was lovely 😊

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                      #11
                      Madge oh I'm so sorry you are in this state.

                      Do you have alternating air mattress? Also they do seat cushions that are air alternative.
                      they really need to address the sores.

                      I'm not far off re not managing to feed myself.

                      When I hear re mattress topper its usually the repose type and that just wasn't good enough as it doesn't alter pressure etc x
                      Diagnosed May 2021 bulbar onset als.

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                        #12
                        Madge You poor lady, sorry you're having such a rough time.

                        Did the nurse give you any ointment or ask your GP to prescribe any?

                        I agree with Shelly that you need very good pressure relief products. xx
                        ​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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                          #13
                          Madge Here's a short video of the Neater Eater - if it's something which is of interest to you, ask your OT.

                          ​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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                            #14
                            Thanks Ellie, funny enough I have OT and neater eater rep visiting me next week.
                            i have a cleaning foam and a cream for the thrush and barrier cream for my blisters.
                            i can only give the topper a try. Just feeling rather sorry for myself at the moment hey ho x

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                              #15
                              Cold is definitely the enemy. What muscles you have perform less well. I’m already thinking about my fleece lined trousers for when I go out.

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