Eyes not responding

[Redaler]

I am a full time carer for a lady with psp who was first diagnosed 2019 I have been her carer for the last year now and notice things are progressing more and more couple things I was after advice on is firstly her eyes she does not use them any more tries to do everything by feeling rather than looking which of course accidents happen ie knocking over things most of the time her eyes are closed but if open seem just to stare in front of her another is the need to push herself back in what ever chair she sits in which as lead to lots of near accidents not sure why she feels the need to do this just wondered if anyone else as had this problem any advice would be much appreciated

[BellaRooney]

My dad has PSP , he complains of all day dizziness and therefore likes to recline as much as possible in his chair, perhaps she is feeling dizzy too?

[Redaler in reply to BellaRooney]

Thank you for your reply yes she is dizzy all day when I said she pushes herself back in chair I mean with feet on floor tipping herself up which is making it very unsafe up to now I have managed be there to stop her but I'm afraid of her doing it when i am not around she does it when in wheelchair and shower chair and does it out of the blue for no reason when asked why she does it she just does not know

[Dascountry]

My husband 66yrs old has been pushing himself back in his chair for about a year now. Its It's not a gentle movement either. He does it in his lift recliner and whichever wheelchair he is in. He says he is readjusting.

[Redaler in reply to Dascountry]

Thank you for your reply she does it while in her wheelchair or shower chair and nearly tips herself backwards which is very dangerous when asked why she does it she just does not know

[Kasenda]

Hi, what I know from caring for my husband with PSP, is that they get double vision which makes it difficult for them to focus. He has a patch over one eye for this on his glasses. The other thing is that they hate bright lights and he always has his sunglasses on. Also the muscles on his eyelids get weaker making it hard for him to keep his eyes open all the time. Hope this helps.

[Redaler in reply to Kasenda]

Thank you for your reply and helpfulness

[AJK2001]

It sounds familiar. My Mum used to shut her eyes alot because "it was more comfortable" This seemed to be a combination of effort to open them, sensitivity to light and because the eyes didn't move together, difficulty in understanding what she was seeing. Eye movements are often affected by PSP. The range of movement narrows so people can't look down or sideways and the eyes can move at different speeds causing double vision and confusion, thus making it difficult to pick things up as they can't judge distances. Sometimes Mum found it easier to put a patch over one eye as then it wasn't so confusing but then she lost distance perception. She also wore dark glasses with a green tint which we got from the local eye society (RNIB another option) which fitted over her normal glasses and closer to the head than normal sunglasses to shut out glare. We put her drinks in lidded cups, with wide bases ( so more difficult to knock over) choosing bright colours so easier to see. This helped but didn't stop accidents - the poor carpet!

Mum went through a phase of adjusting her position as you describe. As with many things with PSP the person doesn't know why they do it, it seems to be one of the tricks the brain plays on them.

Hope this helps a little.

[Redaler in reply to AJK2001]

Thank you for your reply and how you have described the situation with the eyes helps a lot and given me a few things I could try to see if any help her

[Wigwambob]

Hello,My husband also has PSP. None of his movements are gentle and does tend to push back in his wheelchair. As for his eyes the eyelids are quite droopy and when I point out something for him to look at his eyes seem to look in a different direction and recently has started to listen to television rather than watch. Take care.

[Redaler in reply to Wigwambob]

Thank you so much for your reply it helps a lot knowing its a thing most psp patients do

[Dosco]

The inability to move eyes vertically ad horizontally is a classic sign of PSP. This paralysis results in feeling things by hand rather than the eyes. Consequently, coordinating the eyes and finger to make calls on smart phone s becomes increasingly difficult. Visual acuity, however, is unimpaired.

[caralime1956]

My husband who passed away 7 months ago after being ill for 7 years & was in a care home for 2&@ half years used to have his eyes closed alot. I could be visiting him before Covid & be in 2 hours & his eyes would never open!! He also would push himself back in his wheelchair& was such a worry it would tip over. I would put the brakes on & he would take them off, he made a hole in the dining room when pushing backwards & handle went into the wall. It's such a strange illness & he never knew why he did it?? He was diagnosed with psp after initially being told it was Parkinsons but after donating to the brain bank ,report came back to say it was CBD. Take care of yourself on this journey x

[Redaler in reply to caralime1956]

Firstly sorry to hear of your loss and thank you for reply to my question I agree the pushing back in wheelchair is very dangerous and it is done very spontaneous she will also do it when brakes are on which is even more dangerous as if she manages to achieve tipping back is going cut her head open it is indeed a very strange illness and very hard to understand god bless you