PSP Association
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Another fall!

Oh the joys of this horrible illness, Keith has just fallen over in the downstairs loo and I couldn't get in to him because he was behind the door! After about 20 minutes of trying to get him to wriggle away from the door I managed to squeeze through (Good job I am not very big!) I then had another 20 or so minutes of trying to get him upright, he is ok now thank goodness and has no injuries but the loo has, if he keeps on like this we will have nothing left in the house!

There, feel better for a rant! 😖

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Have you not had a visit from the occupational therapist? We have a small downstairs loo and my wife is forever falling in there and in a difficult position . The occup. therapist can provide you with slide sheets which will help you manoeuvre Keith to a better position and then there is a thing called an Elk which is a series of inflatable cushions rather like a lilo one on top of the other which inflate in turn ( you have a small compressed air generator provided ) and they go rock hard but it saves you having to lift or call paramedics ( providing the person is not injured .) By the way rant away we all feel better after a good rant ! Georgepa

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Thanks for the info Georgepa I will enquire about those at our next visit. We have seen occupational therapists and they are at the moment checking everything again as they say the shower we had put in last year for Keith is no longer suitable! Good to hear from you, take care,

Love Pat xx

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Its never ending is it ? Showers - wheel chairs car seats sometimes it really gets to you doesn't it . It is such a cruel condition and most people haven't clue what you are having to deal with .

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I have never met anyone apart from neurologists, PSP nurses and the wonderful people on this site who know and understand the best of all! xx

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And even the neurologists don't know it all. I am just learning and have finally convinced the rehab to agree to release my love by the end of the week, I hope I pray.

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I hope you get the shower sorted out. I'm glad we opted for a wet room as Colin is now wheeled into it in a special tilt and lift shower chair so he can be thoroughly cleaned without him having to stand or be transferred in the wet room. He can be dried and dressed still on the chair, the only bit of him we have to dry as we transfer him to his rise recliner chair, is the part which has contact with the edge of the seat. As it is a commode as well, we can get to all the hard to reach places.

X

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hi mate take a tip from me and get your toilet door turned to open outwards instead of inwards its much safer and does not look like a disabled toilet but better for your husband just in case he has anymore nasties regards to your husband for me peter jones queensland Australia psp sufferer

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Great idea Peter, but the way the door frame is I don't think we would be able to do it, another possibility could be a sliding door?

Take care of yourself and thanks for the idea!

Love Pat xx

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We had to change the way the door opened in our downstairs toilet about 20 years ago as Colin's mum fell in it and we had the same problem as you getting her out. I'd get it changed asap. We had two very narrow doors fitted on one of our toilets since PSP. They both open outwards and I fitted strong magnets to hold them closed instead of a catch. They started off as bifold doors as we had a problem with the door frame but Colin fell against them and one came crashing down with him on top of it....better than under it though. I hope you find a way to change them.

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Thank you NannaB, you always give such right and helpful advice! I am going to look at all the options for the shower and downstairs loo based on what you have suggested. I am so glad I found this site, you have all helped me so much and I really appreciate it and I don't know what I'd do without you all, probably crack up completely, thank you!

Much love....Pat xx

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Nanna . I have bought a camera . were you able to set it up yourself .

I will have a go at most things . But I am a bit afraid to plug it into the router in case I lose everything on the TV .

I want to b able to see it on my I phone and I Pad .

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Ahhhh! Sorry I can't help. We only have a baby monitor with a camera so I just had to plug it in. Yours will be far better though if you can get it set up. I hope you can find someone who is technically minded. If you don't have family nearby I have found sons and daughters of friends are quite happy to help. I hope you soon get it sorted.

X

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I will let you know how I get on when I find someone who knows what they are doing . .

I will try and have a go myself it just when I start to do something John normally wants something or another and I lose where I left off . such as when washing dishes and he calls three hours later they are still not done and I have started something else .

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I think we probably all know what you mean. Often it gets to 11 am and I realise I haven't had time for breakfast and I keep finding mugs of cold tea or coffee around the place where I've made it and haven't had a chance to drink it. Our son came this weekend and this morning he cooked me scrambled eggs on toast with bacon and mushrooms. Our 3 year old grandson cracked the eggs into a basin and beat them with milk ready to cook. His dad is training him to be a chef like he is. I only had to leave the table once whilst eating breakfast. I definitely appreciate the simple things more now. X

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Indeed Nanna , I often tell John o get up and make me a cup of tea please lol.

he was never one for housework or even cooking but if I was busy and needed a rest I would ask him to make me a cup of tea , it was always a treat . I really miss that

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hi pat

i think u have a no of options now

i t]hink this site is great too]

lol jill

:-)

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I was just about to say what all the other have already said . it is a real learning curve

I also turned the door , at the I me we had th downstairs toilet tiled etc I should have had the doorway widened , what a good idea Nanna a double door ,

have you got grab rails . I had them all over the place.

it's the smaller restricted movements such a s tight turning cause the freezing and falls.

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Hi cabbage cottage,

Yes we have grab rails all over the place! Apparently the loo seat fell down behind him and he turned too quickly to sort it out and fell, needless to say the loo now has no seat and it's staying that way!

Love Pat xx

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bathrooms and toilets are the most difficult of places. .

please don't struggle for too long like I did . I am lucky that John will listen and try most things I have suggested . unfortunately he is now house chair or bed bound . we have ceiling hoists and we use a wheelie commode .

I did most f the damage to myself while coping while he was still mobile . Bodily supporting hm ..

I wish we had access to all these aids earlier . Iwouldn't be abe

Le to keep him home with me without the hoists .

of course I don't know what your situation is like , Wher do u live . Rita x

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Hi Rita,

We live in Buxton, Derbyshire and are at the moment getting lots of support, but only because I have pushed for it myself cis I got completely fed up with waiting for people to get back to me

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*cos!

Love Pat....xx

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same here would have got nothing if if was not for my persistence .

our Parkinsons nurse even advised me to contact the MP and complain about the non service we are having from the request I made to see a social worker .

you only have so much energy

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As soon as we moved in this bungalow I had the bathroom door altered so it opened outwards and I had a safty lock put on so that it can be opened from the outside. Mainly for safty but also the fact if the door was open it covered the radiator. 95% of falls and accidents happen in the bathroom so we played safe from the start and that was before he had anything wrong with him. I am still amazed that they still build houses with the smallest room in the house has the door opening inwards. Janexx

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Very true Jane it's ridiculous and my brother and father built our house! I suppose we all think these sort of things aren't going to happen to us but how wrong we were! Mediquip are supplying us with a raised loo seat and it's coming tomorrow so hopefully that will help and yes we also have a safety lock on the door but although I could open the door I still couldn't get straight to Keith as he was lying right behind it!

Love Pat xx

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If you can't get the door opening reversed, maybe it would be worth talking to social services and see if you can get a concertina door instead. Friends of ours recently had a wet room sorted through social services who got them a grant to have the changes made under medical conditions, might be worth a try. All the best

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I too have had to change doors , some to swing the other way and some to open out. It has made access easier and limited damage to the door frame from walker and wheelchair

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I know it has been mentioned before on this site, but worth mentioning again I think. The ustep walker is the best for anyone with this condition as it help avoid the backward falling and it is easier to turn 360 degrees. Google the aid or ask your occupational therapist before it is too late as it can maximise independent mobility for the longest period possible.

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Thank you, I'll look into that....Pat xx

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I have one, pretty new. However, it tips over as I turn and my wife has to hold me and the walker and it is awkward. And yes, the therapist tried to help, but it was only good for a couple months and we had a terrible time getting it. It's a long story, but the provider actually accused my wife of stealing it...as if...

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Ranting always make you feel better. Feel free anytime you want to. Auddonz

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Hi this is my first reply on here, after reading your message/rant. I just wanted to say I'm going through the same thing with my partner, he has had 10 falls in the last 2weeks resulting in a broken collar bone. About a month ago we had a life alarm pendent fitted and it had been worth it as I cannot lift him on my own and the paramedics do such a wonderful job. Best wishes to you both, and never be afraid of a good rant.

Andy

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Thanks Andy,

I have sent for an information pack about those, I am definitely going to need more help as I am only small and weigh next to nothing so literally can't lift him myself! Been out in the wheelchair with him today and I'm shattered and we have only been on flat ground!

Time for another rant I think!

Love....Pat xx

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