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Personal alarm suggestions?

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    #16
    I think Stephen is doing them at the same time. I'm going to have to pull the keyboard keys and give it a scrubbing then hopefully put them back in the right place. If my next posts do not make sense I've failed.

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      #17
      Yoghurt in a keyboard brings a new meaning to computer Sticky Keys 🙄

      Denise, we lose our balance, which is why we just topple over so easily and the signal to put out the arms to break the fall just doesn't get through - it's like felling a tree, only much quicker 😁

      Hopefully he will learn before he hurts himself badly.

      Big hug to you.

      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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        #18
        I did the same the other day, just turned round to get something and bam straight down face plant into some flowers 🙄 lily pollen all over my face 🥴 oh the joys!!

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          #19
          My wife is trying to straighten the 2 handles on the oven doors following my backflip onto them. I’m nursing a bruised back but I will mend. Not sure if the handles will.

          Barry
          I’m going to do this even if it kills me!

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            #20
            Hi Denise,

            Sorry for Stephen's falls.. Its so scary and unpredictable. We are all different but my legs just used to give way with no warning even when I was using my rolator landing me in a heap on the floor!

            I insisted on carrying on trying to walk and eventually had a really bad fall in the bathroom which resulted in a broken leg. This led to a life threatening pulmonary embolism. I'm not trying to scare you both ( much !) but falls can have really serious consequences. My consultant said most MND people have a bad one, like me before they realise this.

            Ironically once I had accepted I wasn't going to walk again I felt happier and safer in my power chair and we were able to adapt. I am lucky enough to still have reasonable arm strength so am able to assist with sideways transfers.

            it must be so difficult for you to see him have falls . Big hugs to you and take care of yourself,
            Love Debbie x

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              #21
              i was going to write it is so good to hear that you are all falling over but that didn't sound right! i was worried it was blood pressure or - to be honest i have no idea. but knowing its part of the whole thing then the only thing that im to worry about is him having a soft landing.
              I'm looking into a personal alarm so when it arrives I shall let you know what turns up. I can see the problem being getting him to wear it.

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                #22
                denise But, at the same time, don't assume his ALS/MND is responsible for all of Stephen's ailments...
                ​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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                  #23
                  Thing is how on earth do you insist the doctors check that something else isn't going on. After all everyone has different symptoms and I guess the doctors are happy to stick it all under one umbrella. I shall have a word with the doctor but I don't think it's going to get us anywhere. I asked Stephen if he felt like his balance had gone but he doesn't seem to recall what happened. If I fall I know it's my feet in the wrong place or I've just over balanced and I wait to hit the ground. I've asked if he just blacked out but he doesn't know. It's a mystery 😐

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                    #24
                    I am now getting the occasional feeling of suddenly feeling out of balance and nearly falling (but haven't). I asked the mnd nurse if mnd affects the balance organ, but I think she said it is because our muscles weaken at different rates, and this leads to imbalance???

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                      #25
                      There are a couple of things girls: -

                      If you've already had a bad fall, you get BPPV. A type of vertigo that can be corrected.

                      If you tend to want to fall backwards, suspect PSP.

                      I know I'm a thick Northerner, but I find some neuros are even more dense.

                      Bi eck Denise, jus wait till I see Stephen, he isn't too old to get a clip aroun't lughole.
                      Copyright Graham

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                        #26
                        Hi I was born a northener but been gone a long time. Thinking about it many years ago I fell head first down a flight of stairs and I can go through periods of balance problems. This can be vertigo and really horrible or just an odd dizzy feeling. So if mnd causes muscle loss this impacts on neck just like my fall so it makes sense.
                        Stephen had a covid test yesterday and in his loudest foghorn voice he announced that they stuck a big pole through each nostril. Much to the discomfort of everyone waiting. I would have died of embarrassment if I could have stopped laughing.

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                          #27
                          I was told that there are crystals that grow in your inner ear and when you have a bad fall, they drop like borbles off a Christmas tree. Must go before the ghost of Christmas Past comes a-knocking.
                          Copyright Graham

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                            #28
                            Denise, A walker is the only way Fritz will walk, paying close attention to each step. But even so he fell stepping over the lip of the shower Sunday. It felt like slow motion as I grabbed his arm and eased him down. It is always alarming to witness as it never happened even 6 months ago. It is amazing he keeps going w no walker! He must be fearless

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                              #29
                              He's determined to act like nothing is wrong. On the other hand he will say 'I'm going for a shower, as long as I don't fall over he puts this on the end of a lot of things. So I say shall I come with You? No it's ok I'm alright! Drives me mad 🤔

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                                #30
                                Our son bought Stephen a personal alarm to wear round his neck or attach to a belt. It has two receivers, rather like a door bell. We spent some time figuring out where to put the receivers and decided hallway upstairs and one near the kitchen. I put it by his bedside and told him problems at night press this and I will be with you. Next day helping him dress and I put it round his neck. I'm not wearing that. Oh yes you are. No I'm not. It's not debatable you're wearing it. Off he went grumbling.
                                I wait to see what happens next time he falls. My only concern is that if he falls his arms/hands are usually under him. No doubt the alarm will be too. 😞

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