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    #16
    Good morning Lynne

    I understand your want for independence and perhaps you do not understand the importance to me of the detailed description you are giving about your challenge as we face moving house ourselves and I think about how I want the new place organised.

    I do not know how you are placed financially, but I wonder, given that your husband does not seem interested (?) in helping you with "fresh air an optical stimulation", whether you could pay somebody perhaps one day a week to help get you out and about?

    Or perhaps you have a friend or there may be a local volunteer who might be able to help you in this way?
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

    Comment


      #17
      Hi all. When my OT came out the other week she saw me walk with my walker and a said for me to continue using it for as long as possible so I have been. But I've fallen twice in the last week and last night was awful.

      I got up from my chair and was walking towards the door with view to going to do my teeth ready for bed. I decided to take off my walker the little blanket that was on it as I passed a chair (aiming to put the blanket on the back of the chair). I stupidly took both hands off from my walker. I fell backwards rather hard. The back of my head bashed onto the floor. I ended up on my back quite a far way from my walker, in which was my mobile phone. Steve had gone to bed about 15 minutes earlier (unusual because I'm usually first to bed and first up). I shouted Steve over and over for about 10 minutes, started to worry whether I'd manage to get up on my own. That was impossible. I had trouble even turning over. So I had to try and get my phone so I could call Steve. After another 10 minutes or so I got to it and called him. He'd been asleep. He helped me up. That was really really hard. I was left exhausted with shaky legs after the enormous effort.

      When I got up this morning i was really nervous. But I'm aware that when I've fallen recently it's been when I've been doing something different or doing two things at once. I must not multi task and keep to routine well practiced things.

      Lynne
      Last edited by Lynne K; 22 January 2020, 09:57.
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
      I'm staying positive and taking each day as it comes.

      Comment


        #18
        Hi Lynne,

        I hope you have not sustained any serious injuries and it may be worth checking it out. I know that feeling of panic after a fall. As you mentioned when we do something that distracts us we are then vulnerable to loosing our balance.

        Let us know how you are in a day or so.

        Best wishes,
        Barry x
        I’m going to do this even if it kills me!

        Comment


          #19
          Thanks Barry. I had a sore head last night (2am) but it's perfectly ok now. I'm just exhausted still. But the late night doesn't help much there. I'm usually in bed before midnight. I'd been watching Netflix. Lynne
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
          I'm staying positive and taking each day as it comes.

          Comment


            #20
            Hi Lynne,

            I had a thought about person to person alert systems which are good for vulnerable people like us. I use a wristband alarm which is managed by Saga. It is linked to my landline so only works if I am in range. Technology has moved on and I see you can get a fall detector which alerts your family/friends. The cost is £99 and then £2 per week for the connection so it is similar to what Saga or Age Concern charge but more versatile.

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

            Comment


              #21
              Hi Lynne,
              Sorry to hear about your fall, it just shows how easy it is to lose balance and then fall. I hope you are feeling a Bit better now.
              Keep safe,
              Sheila x

              Comment


                #22
                Thanks Sheila. Yes, it is easy to forget about being careful with balancing, especially when you are distracted by something.

                The back of my head is a little sore to the touch but ok otherwise. I'm seriously worried when walking. So I'm sitting almost all of the time, Lynne x
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                I'm staying positive and taking each day as it comes.

                Comment


                  #23
                  Hi Lynne ,

                  So sorry about your fall and I really hope you feel better today. Falling is so scary, undignified and it makes us feel so vulnerable. Rubbish !

                  When I was still walking using my rollator my hubby used to walk behind me incase I fell so he could catch me and lower me to the floor. I realised (reluctantly and after alot of thought) I would be safer, happier and more independent using my powerchair. I am not thinking this is for everyone or you can just use it when you're on your own or tired.its a really hard balance and a huge blow to give up walking.

                  I hope you feel better soon. A fall really hits us hard !

                  Love and hugs
                  Debbie x

                  Comment


                    #24
                    Debbie, the idea of using my powered wheelchair when I'm on my own has never occurred to me. So thank you. It's a smashing idea. I'll put it to St) ve when he comes back in. He's out teaching (science) at the moment. He'll have to take all of his stuff off it before I can get to it. Lynne x
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                    I'm staying positive and taking each day as it comes.

                    Comment


                      #25
                      Hi Lynne

                      Sorry to hear that you had a bad fall.

                      Like Debbie, I use my powerchair much more than I used to. I realise that it's not always practical or easy to use a powerchair in every room of our home but we should be kind to ourselves by doing what we can to keep ourselves as safe and as comfortable as possible.

                      I'm sure your OT means well with her advice but using our powerchair instead of a walker is sometimes the safest and most sensible option for us.

                      I worry about you having more falls and so it's good to hear you are going to ask Steve to move his bits and pieces from the seat of your powerchair - then, at least, your powerchair will be available for you to use whenever you wish to.

                      I hope you feel better soon.

                      Love
                      Kayleigh x

                      Comment


                        #26
                        Thanks Kayleigh, Lynne x
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                        I'm staying positive and taking each day as it comes.

                        Comment


                          #27
                          Sorry to hear about your fall, Lynne,

                          It's so easy to have your brain say, that's easy and you do it.

                          Don't forget, a weighted walker is generally much more stable and if you have trouble gripping, sometimes keeping the brakes locked on works

                          Love Terry
                          TB once said that "The forum is still the best source for friendship and information."

                          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                          Comment


                            #28
                            Sorry to hear about your fall, Lynne. It sounded scary but you managed not to panic much - good on you. Of course a fall will knock your confidence and you don't need that....

                            Yes, I also think it'd be wise (and safe) to use your powerchair when you're on your own, or if Steve is honking ZZZZZs in bed!!

                            Take care.

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

                            Comment


                              #29
                              Thanks Terry and Ellie. Terry, there's always weight in my walker. This is mostly a light 4 wheeled walker sometimes my favourite Topro 4 when walker but that's too big around our flat. Although I'm seriously tempted to use it despite it's bulk. But the walker wasn't the cause of my fall. It was my own stupidity when I took both of my hands of the walker to take an unruly fleece blanket off my walker and put it on the back of a chair. As I lifted it I fell back. I'd tried previously to lift it with one hand but it was too heavy and unruly to do. I'm usually sitting down when I move the blanket but I'd moved towards the door and had forgotten about it until I got near to the door, beside a small armchair.

                              I fell in our wet-room a couple of days earlier because of the same stupid reason. I was walking towards the door, was close to it (very small room) when I decided to stop, take both hands off the walker to yank up my leggings a bit more. As I said stupidity. You'd think that it would have learned that lesson by now : KEEP AT LEAST ONE HAND ON SOMETHING STABLE, SUCH AS THE WALKER. The capitals are for me and not you. I must try to do this all of the time.

                              I'm off now to watch the Liverpool game (on TV).

                              Lynne x
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                              I'm staying positive and taking each day as it comes.

                              Comment


                                #30
                                Originally posted by Lynne K View Post
                                ... You'd think that [I] would have learned that lesson by now
                                Oh Lynne, you've been hanging around with Barry for too long

                                Enjoy the game.

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

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