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    Balance and darkness

    I don't want to come across insensitive to those members who are no longer mobile as this question is to do with walking so am sorry about the subject.
    I am trying to figure out if this is mnd related or if I have something else going on which would probably be unlikely. Is balance a major issue with mnd and specifically worse in the dark even with streetlights? I noticed this last year and again now this winter with the darker mornings and evenings. I have often felt unbalanced during the day anyway and it comes on for no reason but its terrible when it's bit daylight and horrendous when walking down any slope hill etc this morning I felt so out of position with the ground. Had to hold onto the wall and the small slope wasn't steep. This occurred all last winter. Makes me feel so disorientated. Its like my brain can't cope with both the walking and the darker light.
    And also not being able to multi task? And I don't mean difficult tasks. This is basic stuff like being in a shop snd looking at a shelf but not being able to do this whilst on the phone? Not being able to blow my nose whilst say walking cos it makes me unbalanced? Did members notice such bizarre things like this or am I just totally crazy?! I can't understand this at all. Thanks for reading xx

    #2
    Balance is worse without enough light because we use our eyes as well to balance. That’s why I had movement sensor lights in my bedroom xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

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      #3
      Thanks Lynne, its just I dont understand why it impacts like it does? My eyes are not affected at all or my inner ears no issues there. Is it because the brain is trying to do 2 things at once? I tried with a high powered torch but even in the main street which has good streetlights I looked drunk. Its worrying me because of falls!

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        #4
        My OT explained how important light is to balance about three years ago Xx
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.

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          #5
          Yes its really awful, felt like the ground was coming up towards me and I yelped and put my hands out to protect myself and then felt a total fool when I stopped as I could see the pavement wasnt moving at all...I must have looked a sight!

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            #6
            Zante Balance and gait issues are synonymous with UMN damage, so are worse in PLS & UMN dominant ALS, but if you haven't done so already, I would be inclinced to get checked out for vestibular problem or a virus, just in case that's also an issue, particularly if your latest issues came on suddenly. 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
              Originally posted by Ellie View Post
              Zante Balance and gait issues are synonymous with UMN damage, so are worse in PLS & UMN dominant ALS, but if you haven't done so already, I would be inclinced to get checked out for vestibular problem or a virus, just in case that's also an issue, particularly if your latest issues came on suddenly. xx
              I am hoping I might have just managed to work out where the quote button is!!
              Thanks Ellie, I feel you are the Oracle !! As in thats a compliment of course! I had no idea it was connected to umn damage. Unfortunately it hasnt come on suddenly, this happened the same pretty much a year ago.... and lasted all winter. I went to the dr who checked my ears and was nothing wrong, had bloods done etc. Then when not so short daylight hours of course it improved, downhill not great in daylight but way better than darker light. I hadnt been out in the faded light this autumn until this week which is when I realised its still bad like the entire last winter. I have zero social life so am not out evenings to notice it during the summer. Thanks. I did wonder if others had experienced the same.

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                #8
                I have many near misses when I have felt my balance go completely and start to topple sideways mostly but forward and backwards too. This is a major factor in my avoiding walking outdoors. In my house I shuffle. 🚶‍♂️😔🚶‍♀️😔🏡😁xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                  #9
                  Thanks Matthew. I know mnd is the motor neurons that are damaged of which mnd is about but I didn't realise that those cells are also connected to balance. Its having a major impact outdoors for me also. Add any ice on the pavements this winter and a iffy leg and I might as well prebook another slot in casualty! X

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                    #10
                    Every day is a school day Zante 👩‍🏫

                    Many of the cells in the vestibular nuclei that receive information are upper motor neurons and, given that you know ear crystals aren’t the culprit, those pesky UMNs must be. 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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                      #11
                      Ha thanks Ellie! You are right in the term pesky cos they are giving me a ton of issues now! Am learning! Xx

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