Hello everyone, I'm new here. My brother had had PSP for 5-6 years. He was initially diagnosed with Motor Neurones. For the last year John has been in a Nursing home and has deteriorated rapidly. He cannot talk, cannot use his hands to use his speech machine. One side is completely stiff. All his food is pureed. The only joy he has is when mum gives him some chocolate even though we've been told not to give it to him as he coughs a lot. Johns face lights up when chocolate is mentioned so if thats the only pleasure he has in life we will continue. Sadly John just sits in his chair all day and watches tv. He gave up socialixing when his speech went. He used to run a pub and was the life and soul of everything. Its a cruel disease. Anyway I just wanted to ask if anyone knew of a good suporti e chair we could buy John. The last one we bought isnt supportive enough now. We have waited an age for Occupational Therapy to visit John and give us advice. I can no longer watch him slide down the chair. If anyone can suggest anything I would be very grateful. John is 65, I'm 59 and on my own, work full time and my parents are in their 80's so its pretty tough at the moment.
Welcome to this site but sorry you have cause to join it. There are many chairs on the market but this is the one I ended up buying when the OT refused to replace the original one as “ If he is lifted by a hoist, he no longer needs a rise recliner “. I bought at great expense, but worth every penny to my husband, an A J Way riser recliner chair. It has five different position buttons and goes into an almost lying position. The back and footrest move independently. The rep came and measured my husband thoroughly and he even measured the open legs of the hoist to make sure it would enable me to get my husband far enough back into the chair.
I think I would chase the OT up as I know in other counties 2nd chairs have been provided so your brother should be allocated a first one.
The one Nanna B mentions sounds amazing if you can afford it.
I had to fight 10 months to get Mum a chair, was too late in end as her posture has been damaged by the inappropriate chair they supplied out of stores.
We now have a Phoenix chair. Unfortunately Mum doesn't sit out as much now. It still doesnt fully support her but loads better than that the one she had. She finds sitting uncomfortable now and prefers to be in bed.
Hi there, to be honest John was initially diagnosed with Motor Neurones. After a couple of years the Consultant said she had never told us that and she now thinks he has PSP. ??
All I know is my brother can not longer talk, can hardly move, has to be hoisted everywhere and has all his food pureed. I know John no longer wants to be here and its sad watching him deteriorate and no professionals seem to help us.
It is heartbreaking, unfair, awful and s____y. No two ways about it.
If, as it sounds, your brother is in this advanced stage and does not want to hang on, then I will wish with all my heart that he has an easy passing and that it is not delayed. Sad that that's the best we can wish, but there it is.
In the meantime, give him as much love as you can and remind him of good memories you have of him. Perhaps he'll have some good feeling remembering that he was meaningful to you.
I don't know much about chairs excepting that the one in my wife's room in a nursing home has a vinyl type finish and she kept sliding down. They use a non slip mat which solved that.
My wife had a chair supplied by NHS which was moulded to the shape of her body. They lowered her onto a bean bag and 15 minutes later hoisted her out and then retrieved a plaster cast mould from which they made the chair seat. Superb. She now is not well enough to go out so we returned the chair.
We are in Merseyside but wheelchair services are West lanc's based in Skelmersdale. The company that supplied it is based in Chorley I think. They use them a lot for children with such diseases as spinabifiada. The only problem was,with the chair being a perfect body fit, it did tend to restrict the catheter tubes.
I misunderstood, thought it was an armchair you were speaking about. That is impressive that was the wheelchair. Our wheelchair services in Shropshire are very poor indeed. Just supply a basic big standard self propelled wheelchair.
Hi Tickety boo, I too am new to this forum, joined about an hour ago! My mum has PSP and possibly CBD and I am in a similar situation as you, she’s in a nursing home, I’m still fighting for CHC funding, I’m 47, single, I work full time and am feel like I’m failing miserably most of the time to get my Mum the help she needs, she has good days and bad days, her mobility, coordination, cognitive function, sight and swallowing (liquids mostly) are all deteriorating rather quickly. It’s been and still is hell. Xxx
Hi Marshfarmcat, NEVER think you are failing. You are doing your best as we all are. Sadly not enough is known about PSP and I feel I am constantly battling the system to get any help for my brother. Its as if he's fallen down a black hole. Where is the Consultant, physio, speech therapy?? Its tough when its just you doing it all and you work full time too. I understand your nightmare. Hang in there and just take things one step at a time. Im in Chelmsford, Essex is that anywhere near you? If so, happy to meet for coffee and chat. x
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hi everyone need some advice my sister and me are pulling are hair out this last 10 days,dad had psp about 3 years which in his case is 
