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.
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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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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? xxDiagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!
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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 xxDiagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!
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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, communicated with eye gaze
Sense of humour intact throughout.
Sadly passed away peacefully 2/9/22
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What a dreadful experience for you TonyDiagnosed October 2020 - See my blog at https://www.myneurodiary.com
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Originally posted by Tony View PostJamesW 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 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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