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1st major fall

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    #16
    I guess I will have to wait to actually hit the ground then. 😉🤔😁x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #17
      Hey Richard I'm sorry to hear about your fall.
      love and hugs Denise xxx
      when i can think of something profound i will update this.

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        #18
        Thank you all

        2 days on with thinking on about the 2 elements of this, namely alerting somebody to help and having something that the person call can use to get me back on my feet.

        Unfortunately although my watch is connected to my mobile phone it does not have the sort of alert you mention Ellie but I suppose I might be able to send an email from it but because my hands are so clumsy that might be difficult and it will depend on my phone being in range of the Bluetooth connection between my watch and my phone.

        I like the idea of an accelerometer equipped wristband and note the issues with its sensitivity.

        One issue for us is that we don't have a number of family members or others that we can alert for help although we may need to do something about this.

        On getting me up once I'm down, thank you Gary for that link


        However, £1500 seems extortionate!

        Thinking on

        Warmly


        Andy

        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

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

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          #19
          How much was that cushion 😲
          when i can think of something profound i will update this.

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            #20
            So sorry about your fall Richard,

            Falling makes you feel so vulnerable, especially when you don't know why you fell ( apart from the obvious !) and you are unable to get up. Hope you're not too sore and are healing.

            Take care,
            Love Debbie x

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              #21
              I looked at the lifting cushion but it looked a pretty risky exercise and I wasn't convinced I wouldn't end up being thrown straight back onto the floor. A physio suggested looking at the Raizer chair. I managed to trial this and it works really well - it's easy to use, safe and portable. https://www.youtube.com/watch?v=3vLWZHHnsEI
              My OT tried to get funding for it but failed, so we've not taken it up as it's v expensive. Sounds like some others have been more successful though. I guess it's weighing up the cost against a few ambulance call outs.
              Best

              Robin

              Diagnosed 05/2017 Familial ALS Limb onset

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                #22
                Thanks to all who have expressed concern about my fall. I am still sore but much much better. Thank you.

                Richard
                Richard

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                  #23
                  Having a bad fall stays with you and its all about the next fall I fear, its not only the mind issues about falling but the very fact a broken, hip leg, ankle could be in the offing and who wants to be hospitalised at the moment.
                  Husband Albert diagnosed PMA Feb 21

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                    #24
                    I know. Fall up the stairs and that's all you can think about. It's like you focus so much on not doing it you do! It's a nightmare.
                    when i can think of something profound i will update this.

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                      #25
                      We’ve not had a good week! Neil has fallen 4 times. Once on the stairs, twice getting out of bed and once from his riser/recliner chair. He fell getting out of bed trying to go to the toilet at 2am. He couldn’t pull himself up and couldn’t reach his phone to alert me. Hadn’t clamped or closed PEG so there was feed everywhere. Poor soul was on the floor all night until I came in at 8am. Took myself and my 2 children to get him up.
                      We are waiting for adaptations to start downstairs. I now regret not starting the ball rolling with this so much earlier. I feel I’ve let us get into a crisis situation. So annoyed with myself. Community alarm being installed today and thanks to this forum I was able to ask for the carer alert bracelet too. I think it was Nettie who mentioned this. So thank you. All for £5 a week.
                      Neil was diagnosed with PBP last March and his decline and deterioration has come in fits and starts. No speech, nothing orally, PEG fed/meds/flushes. Left foot drop and gait unsteady, both arm weakness but left side worse, neck weakness. In the summer he was fully mobile, driving, going to the gym, gardening etc.
                      Thankfully, he is not getting up on his own now, so hopefully, we’ll not have anymore falls. MND is certainly sneaky.
                      Lynda x

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                        #26
                        Lynda saying you regret not starting the ball earlier........I think that's because neither of you want to make the decision, while ever you are "managing" you carry on.....doing small adjustments along the way towards another new normal for you both. That's not something to beat yourself up about. What do they say about hindsight?

                        We have the carers alarm and bracelet, just one thing though if he takes it off make sure its at the side of his bed - if anything was to happen to you for example and he couldn't call you he would still be able to contact them, even if he can't speak they still come out of they get no verbal contact. You could ask them to put that fact against his record, they will even stay on the line with him until someone gets to the house.

                        That took quite a bit off my mind and worth the monthly fee.

                        Does he have a hospital bed?.......contact the OT they will supply him and get one with the hand pull on the side - my husband could not manage without that.

                        Best wishes
                        Husband Albert diagnosed PMA Feb 21

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                          #27
                          Oh Linda, I can just imagine how you felt when you saw Neil on the floor at 8am... l'm sorry for both of you.

                          Can Neil make any verbal sounds or bang on the bed? If he can, a baby monitor would work.

                          If he can move a foot/leg/arm, a wireless doorbell might be good - not one with a small push button, but more of a push pad.

                          He could keep a urinal (bottle) by the bed so he doesn't need to go through the hassle of getting out of bed for a 2am pee.

                          Please don't beat yourself up for not being prepared - you don't have a crystal ball and it's more than hard enough keeping up with day-to-day needs without having time to think about next week or next month. Neil's OT ought to do the thinking for you.

                          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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                            #28
                            Thank you for all the useful information. Much appreciated. This forum is a life-line.

                            I have asked for a profiling bed which I think will be a godsend. Unfortunately, our OT is a jobsworth! I contacted her back in August and October regarding adaptations but because he was mobile, she wasn’t interested. I have since made my feelings perfectly clear to her and told her I thought she was short-sighted and narrow minded! And obviously clueless regarding MND. She has upped her game since. There is probably a note on our file saying “DON’T MESS WITH THIS WOMAN. MAD CARER”! Lol. Lynda x

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                              #29
                              Lynda kick her backside, my husband got his bed within 1 hour - I kid you not
                              Husband Albert diagnosed PMA Feb 21

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                                #30
                                Hi Linda,

                                I am so sorry you've had such a terrible week.it must have been such a shock to find Neil on the floor. Please don't feel guilty for not starting adaptations sooner. Hindsight is a wonderful thing and I don't think any of us really plan ahead because its hard to envisage what we'll need. How can we possibly know ?

                                Its unfair that your OT is not being proactive because they're meant to be the experts in forward planning. My OT was very firm with me when I wouldn't even talk about things because everything takes time to organise... far too long !

                                I think many of us have a notes on our files .. its just a shame we have to be assertive. . My nurse told me last week it says permanent naughty step on my records.

                                I really hope its a better week for you. Take care of yourself too,
                                Love Debbie x

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