Charles had a really bad day yesterday. When I asked he said I can't see. He has the PSP eyes and can't see well downward or for anything except TV and he said that was hard as well.
I feel so badly for him and don't know if anyone has information on what to expect going forward.
Thanks everyone.
Cuttercat
My guy has said a few times that he is blind, but that has been momentary; more than once he has said that he can "see" but can't process what he sees, that is, what is in his line of vision doesn't make sense or the interpretation is delayed. He frequently has complained of double vision, can't track lines of text to read much and can't look down at all. this has been going on for at least two years with very little appreciable deterioration. when he goes to the eye doctor he performs oddly well, so the prescriptions don't apply to his daily needs. It's hard, but, as I say, for him at least it has not gotten much worse for a long time. Best, Ec
Thank you ec... depressing, but good for me to know too.
My eyes keep shutting and the only help i get is through Botox injections every three months. It doesn't always work though and the injections can be painful but I'm prepared to put up with it in order to see!
Hi Cuttercat,
There are times my husband can't see anything but shapes, I can be about 1 foot away and still nothing but color shapes. other times he can see pretty good. (his pretty good anyway.) His sight comes and goes. It's very frustrating and scary for him. I hope his eyesight never leaves completely, but I have heard that can be an option. Sorry this has not been much help.
LynnO
If you are in the UK, contact the PSP Association. They can supply prism glasses which help with the unmoving gaze. They asked if my husband had an upward or downward gaze. They helped for quite a while. He had a downward gaze so used them to watch TV, the screen at church so he could see the words of the songs and video clips and people sitting opposite him. He now has an upward gaze but rarely opens his eyes.
X
CBD also seems to affect sight from my personal view of my man. It seemed to start couple of months before he could no longer read. He said he needed to get some new glasses, but we never got there. Then when he could not read over about a week, it did seem to me it was lack of ability to process what he was seeing. He demonstrated he could still read simple large text tho. He kept repeating the poster opposite his bed "CALL BEFORE YOU FALL"! Then later talked about " Viking"s. I thought we were on another 'away' session until he pointed out that the hoist machine had "VIKING" on the arm!!
So suggest maybe machine to magnify print, like you can get to assist people with macular degeneration. That way what is written comes in small doses and may be easier to process. Problem may also lie in concentration too.
Anyway, did not try this, but it may help someone!
Thanks Kevin_1 for all your research posting! Explains the quiet phase!
Hugs! Jen
M has very sore looking eyes (even with eye drops) because she can no longer blink or move her eyes, this also exaggerates her problem with moderate to bright lights. She spends most of the day with her eyes closed when open she can still recognise people and see distant things. She does not like TV any more or reading but likes the radio (BBC radio 2, 6 and classic fm).
We found prism glasses useless and very heavy, but have found the wrap round fitted tinted glasses used by visually impaired very good especially outside.
M is in later stages of PSP but her eyes were the first symptom over 5 yr ago take care and use eye drops early rather than delay is my experience. Good luck Tim
Hi All
Though this was uncomfortable read this is really helpful to me.
It's wonderful how hard you all work to make it as good as you can for your loved ones
Thank you Cuttercat and all.
L
B has had the eye palsy pretty early on. I asked him what he could see when he was still walking pretty well. He said his vision was peripheral/ I asked him but he couldn't really describe what he meant. It may be that it is blurry at the point of focus . I don't think he is blind just not able to see below a specific horizon. I put a paper up to my eyes to obscure my downward view. I too was to focus but could see peripherally ....so that was back in 2013. Today his eyes are totally fixed gaze into the upper corner. He is able to see, if the object is put in front of his eyes at a normal or maybe closer distance. He watches tv, cannot read books but is able to use an alphabet board to point at the word he is trying to say. We have not used anything like prism glasses or other treatments to help his vision. Oh yes To help him understand where he was, I put red tape on the corners of walls and cabinets etc. this worked for about 18 months. We are transitioning to a wheel chair but prior to that I would tell him to fix his gaze on something on the ceiling like the light fixture ....that way he wouldn't get totally disoriented.... also counting steps or better yet, youre not there til you can reach it with your hand while your elbow is touching your waist....He has a problem of lunging.....But like I said he is in transition so that now all he needs to do is stand up to get into the wheel chair from bed or frontroom chair ...or toilet...
I wish you both luck. Use the tape to mark hazardous spots Take note how he walks if he his feet slide, tell him to step over an object to remember to lift his foot...
AVB
This sounds very familiar! He can see TV but no reading, computer, etc. Hard to focus and we have a new alphabet board we're going to start using that he just presses a button and it talks. We've tried several but his hands can't seem to figure other items out. He doesn't have tremor but his hands don't work either.
Thanks much, abirke!
Cuttercat
My husband is beginning to have some eye issues ~ As suggested by someone along the way, I have blue painters tape on floors and walls!!
In an attempt to avoid a fall, I use verbal coaching. Counting steps and making him stop and breathe then continue "regular" walking however many steps he guesses it will take to get to his chair ect. The last time he was in PT I noticed the therapists asking if he needed a break. To me they asked annoyingly often. I started using the "Pause" "Breathe" especially going up and down the stairs and it's working for now.
Last time we were in for stitches , they did a vision exam, and, he too, passed with flying colors : /
Dear abirke,
It's called Go Talk 20+. We will begin recording any day now. I'll let you know.
Cuttercat
My husband has PSP gaze. He has trouble keeping his eyes open and on a good day when his eyelids are open he cannot focus on my face.He has
Trouble breathing
trouble with social services and local councils
Trouble accessing
