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    Falling over

    Ok it was bound to happen eventually, I’ve had a few near misses. Last night I just stood up to go to bed, somehow caught my foot on the rug, tottered backwards and went down like the proverbial sack of spuds. Miraculously I didn’t do myself an injury but ended on the floor with no way of getting back up 😟. We had to phone an ambulance and was told it would be 6 hours! After 7 hours we phoned again and was asked if anyone else could help us. It was now 6:30am so we phoned our son. We were worried about how safe this would be but with the help of a handling belt he got me on my feet 😊. Anyway I survived to see another day.

    #2
    Tony oh thats an awful night. Glad though no injuries. You will be exhausted today so hope you are catching up on some sleep. X
    Diagnosed May 2021 bulbar onset als.

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      #3
      Falling over is the biggest worry I have concerning my husband. We have external and internal stairs and a stairlift for the main flight of stairs. Thing is he still falls. His balance just goes and that's it he doesn't even trip over anything. Then the wait for an ambulance. The longer he is on the floor the more detrimental to his recovery. The other day he was walking from his bed and around the bottom of my bed. His balance went he started walking faster and he crashed into the wall. Luckily I was running right behind him, swung him onto my bed and managed to get my knee under his bum and got him up and onto my bed. Got him into a sitting position and got him back into his bed. I phoned community nurse as I was told to phone them if I have a problem I thought he should be checked over but apparently we don't have one allocated strange as weve been seeing one pretty much monthly. So I phoned GP surgery and told he should go to A&E I said I can't get him out of bed never mind out of the house. They said someone will phone tomorrow but if he has problems to phone for an ambulance!! Perhaps because of his mnd and ftd they will take that into consideration - oh no they don't weve waited 5-6 hours before now with no help. Seriously I don't know what we are supposed to do. If we just left someone on the floor there would be suggestions of neglect and yet when we need help there's no one. 😐
      when i can think of something profound i will update this.

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        #4
        Oh dear Denise, I now know just how you feel. It is very difficult and us MND suffers rely so much on our carers, but who do you turn to. It seems if it’s not immediately life threatening you’re on your own!

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          #5
          Oh Tony and Denise that sounds so awful. Why did we have to get MND when the nhs is in the state it’s in. Well done you for coping xx
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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            #6
            Tony - sounds like how I fall. Just wobble and go backwards. Total loss of balance. But thankfully we have always managed to get me off the floor. I can't imagine having to lie there for so many hours waiting for help. You must be exhausted and uncomfortable. I hope you get somecrest today.

            Apparently there is an inflatable cushion that is available to help lift people - might be something to ask your OT about? xx
            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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              #7
              denise - I'm so sad to read your post. I know this feeling of people totally on your own only too well. For me it is the worst bit. I can deal with so much, but I hate the fear that comes with feeling uncared for and unsupported.

              I think you are doing an incredible job to muddle through the way you are xx
              Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

              Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

              Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                #8
                Tony I am so sorry to hear about your fall. I am forever grateful that when I fell down the stairs I only had to wait for a short while for an ambulance to arrive. Sending you a big hug 🤗.

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                  #9
                  Tony

                  That sounds awful to be left for so long. Hope you manage to rest today. It seems like we are just left to deal with things and are not at all a priority when an ambulance is called.


                  Diagnosed 3rd November 2021 Bulbar Onset

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                    #10
                    We had 3 falls in a couple of days, once down the stairs, one just getting out of his riser recliner chair and one getting up a small step into the house.

                    I then realised that I just can't get him up on my own, I managed to break the fall outside and helped him fall slowly rather than hurt himself and resorted to asking neighbours or calling our son to cone round and help. He is 5ft 11 and I am 5ft 2.

                    He then decided enough was enough and accepted that he couldn't do things on his own as his legs were unpredictable. It was a sad day. We were advised that no one should attempt to get him up and that you should phone an ambulance and state that breathing is compromised in MND patients if they are lieing on the floor. Fortunately haven't had to try that tactic.
                    Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                    Respiratory and blood gases still within normal range.

                    No speech but sense of humour still fully intact.

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                      #11
                      Getting up safely is certainly a concern which is why we were prepared to wait for the ambulance. I’ll remember the breathing issue if it happens again

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                        #12
                        Sorry to hear about your fall mate 🥺

                        Have you asked your OT to see if you can get a ‘camel’ lift? I had one supplied through Medequip when I was going through my wobbly stages and it came in incredibly handy for getting me back up off the floor.
                        Foxes Never Quit 💙

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                          #13
                          What a dreadful experience for you Tony
                          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                            #14
                            Lcfcno1fan funny enough my wife mentioned this as they had one at Marie Curie where she worked. No harm in asking I suppose. Just a shame we can’t rely on the ambulance service. I’m not blaming the para-medics I’m sure they’re just as frustrated. It’s just the way it is.

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                              #15
                              Originally posted by Tony View Post
                              Lcfcno1fan funny enough my wife mentioned this as they had one at Marie Curie where she worked. No harm in asking I suppose. Just a shame we can’t rely on the ambulance service. I’m not blaming the para-medics I’m sure they’re just as frustrated. It’s just the way it is.
                              I think the ambulance service has always been under pressure in someway or another. The thing is even with a good ambulance service you will still be on the floor for a considerable period of time…which is not good. At least if you can get hold of a camel then you can be back up again in minutes.

                              I found this particular stage really tough as I wanted to stay on my feet as much as possible and knew that I was running a risk with trips and slips. I remember on one occasion I was cutting the grass (I know, I know 😂😂😂) and I bent down to pick up the grass collection box, wobbled and ended up on my back. I had to wait about 15 minutes from my daughter to rescue me with the camel but it was a nice sunny day and the lawn was quite dry and soft 😅😅😅😅
                              Foxes Never Quit 💙

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