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1st major fall

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    Nettie
    Forum Member

  • Nettie
    replied
    Originally posted by Deb View Post
    Good luck with the ramp Janette.

    This is just a thought and not a long term solution. . Sorry I'm not sure if you use a heavy powerchair. We keep a portable metal ramp at my son's house and its fine if I'm in a lightweight manual wheelchair but my powerchair is too heavy for it.

    Love Debbie x
    Yes I use a heavy powerchair so it’s just wouldn’t work with the one they brought, I’ll be be glad when they sort all adaptations I’ve not had a shower since Christmas, strip washes are just not the same x

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  • Nettie
    Forum Member

  • Nettie
    replied
    Originally posted by Ellie View Post
    That's something at least Janette. Nice of your friend to offer to make a ramp. x
    He’s a lovely friend, he made me a table to use at my riser/recliner chair a while back, he’s a sheet metal fabricator so a piece of cake for him x

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  • Deb
    Forum Member

  • Deb
    replied
    Good luck with the ramp Janette.

    This is just a thought and not a long term solution. . Sorry I'm not sure if you use a heavy powerchair. We keep a portable metal ramp at my son's house and its fine if I'm in a lightweight manual wheelchair but my powerchair is too heavy for it.

    Love Debbie x

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  • Ellie
    Forum Member

  • Ellie
    replied
    That's something at least Janette. Nice of your friend to offer to make a ramp. x

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  • Nettie
    Forum Member

  • Nettie
    replied
    Originally posted by Ellie View Post
    Nettie
    Forum Member
    Nettie Forgive me if you've looked into this already, Janette, but are there any portable ramps which would work or are there too many steps? x
    Hi Ellie, yes they brought some temporary ramps yesterday but they weren’t suitable, but a friend has been today and he’s going to make me one for the back door, it will be a tight squeeze to get up the ginnel but it will do till they eventually do the front steps, will have to get some practice in 😬 x

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  • Ellie
    Forum Member

  • Ellie
    replied
    Nettie
    Forum Member
    Nettie Forgive me if you've looked into this already, Janette, but are there any portable ramps which would work or are there too many steps? x

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  • Heather R
    Forum Member

  • Heather R
    replied
    Sorry to hear this, Janette. Hope they get a move on sharpish, you should be top priority with that health and safety issue x

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  • Nettie
    Forum Member

  • Nettie
    replied
    I would get starting on the adaptations sooner than later as I’m still waiting for mine to start, it’s been going on since Aug/Sept 🤦🏼‍♀️ So now I’m living downstairs and housebound, I got a electric wheelchair and can’t get outside because no ramp 😡 god help me if there was a fire I’d never get out!! Janette x

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  • Deb
    Forum Member

  • Deb
    replied
    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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  • Suefromwakey
    Forum Member

  • Suefromwakey
    replied
    Lynda kick her backside, my husband got his bed within 1 hour - I kid you not

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  • Lynda
    Forum Member

  • Lynda
    replied
    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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  • Ellie
    Forum Member

  • Ellie
    replied
    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.

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  • Suefromwakey
    Forum Member

  • Suefromwakey
    replied
    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

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  • Lynda
    Forum Member

  • Lynda
    replied
    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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  • denise
    Forum Member

  • denise
    replied
    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.

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