PSP Association
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Changes in Eyesight and Challenges

Charles is having severe changes in his eyesight. Has lost peripheral vision and can only see me at an arms length. He can't really see TV and I might get a bigger one but don't know if that will help.

Also he is experiencing changes from one day to the next. One day not responsive and agitated and next quiet and peaceful. I am having a very hard time right now.

Can anyone give me some advice from their experiences. It's such a terrible disease!

Cuttercat

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Hi Cuttercat, I am on the computer at the moment.

To refresh you a bit, my son Jeff died of PSP May 4, 2017. We live in Los Angeles, CA, USA and Jeff's health insurance was Kaiser Permanete under the ACA. When he lost his job with Los Angeles Unified School District, he lost his insurance coverage, and had to buy it under ACA (often called Obama Care). His first two symptoms, March 2014, were DOUBLE VISION and slurred speech.

He got fitted for prism glasses by Kaiser. Then he also got cataract surgery. He did pretty good with his eyes for about two years....sometimes blurry vision.

2017 he got re-DX from PD to PSP. His eyes started deteriorating. He could NOT watch TV, and had difficulty seeing his computer screen. He had a 60 inch Sony TV, but could not make out the images. It makes me cry to think back about that first incident. I thought if he had a lap tap he could bring it as close as was necessary, and he would be able to watch DVD movies, etc. I purchased him a lap top. It did NO good. He stopped watching screens and basically listened to his books and his music. It was a very sad time for him and for me because slowly his joys in living were being decreased.

I wish I had a more positive share.

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Sorry Cuttercat you are going through all this, bloody PSP sends so many horrible things, have you tried giving some sort of medication to calm him down on his off days? Xxxx. Big hug coming your way xxxxx

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I'm afraid we are in the same spot. But he loves music and books. We persevere.

Cuttercat

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Hi Cuttercat. I'm afraid I can't be of any help to you on this as we havent ecperienced it yet. I'm so sorry you are having such a difficult time but hopefully there are others here who can advise you. It is a terrible disease for our loved ones to suffer but it affects their carers too, so thinking of you and sending a big hug. Lots of love to you both. Nanny857xx

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Chris had trouble in seeing at the end. I used to higher the bed to get the TV into the right place. He didn't seem to be able to move his eyes and find me. I had to move until I could see his eyes could see me.

He tired very quickly watching TV. I don't think a bigger one would solve it.

He didn't have agitation, except when a dr. said he should go to hospital. As long as he was at home he was calm. But he became weaker and lethargic.

Love to you both, Jean xxx

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I figured as much but hearing from you helps so much Jean.

Cuttercat

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Its such a sad time, cuttercat. I remember wanting so much to find something to ease things. Looking back the only regret I have is wishing I had talked to him more at that stage. I'm sure I did and he slept a lot but I suspect we always think we should have done more. The feeling of helplessness is overwhelming.

Big hug again, cuttercat. love, Jean xxx

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As my hubby progressed he wouldn’t have the tv on as he couldn’t cope with movements and people talking over each other. Our tv was 32” not enormous but I don’t believe anything larger would help. Just another hurdle I’m afraid and it makes me so,sad for you both. Jxx

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Thank you, it helps to have you with me in spirit.

Cuttercat

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I'm afraid this sounds all too familiar. Unless he is looking straight ahead R has double vision but positioning him carefully in front of the TV gives him single vision of the screen. As others have said, I don't think a bigger TV will help.For sometime now we have had subtitles on, but he now has trouble reading those; not so much 'seeing' them as processing them quickly enough. It means that all subtitled foreign language programmes are now inaccessible for him. Without the combination of English language and subtitles he struggles. In fact I'm not sure how clearly he does actually see the TV now and with the slowing of his processing of information I can foresee that soon he won't watch it at all. Then it will be down to radio, music and audio books; all of which he does still enjoy. We have tried prisms and glasses that change the angle of viewing but these have been of very limited help. Just another in the long list of disappearing capabilities, but spring is here and we can get outside, which definitely lifts the spirits!

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Cuttercat,

I believe that my wife’s peripheral vision was the first to go, when I look back. The optometrist found no physical issue with her eyes. It appears that the issue is the processing of images in the brain. I have discontinued optometrist visits because she struggles to follow their directions and interact with their equipment. I think her vision is fine, but she has trouble watching tv. I think this is more of a cognitive issue.

As for agitation, I am struggling as well. She acts like she has to do something, but she can’t tell me what it is. She can’t sit still she has been pacing around the house for the last couple weeks. She is not leaning as she does occasionally, so not falling, however she runs into door frames(so some bruising). I can’t get her to sit and eat. I am usually chasing her to try to get her to eat. She is on an anti anxiety medication, so it might be worse. Unfortunately she is not eating enough to keep up with all of the physical activity, so significant weight loss. She does not have any extra weigh to loose.

I don’t have any suggestions, because I have not found anything that works. I can only offer my sympathy because we are there also.

If you find anything that works, let me know.

Bobby

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Yes, they eat but still lose weight. Charles is skin and bones.

We just maintain until the next shoe drops.

Thanks,

Cuttercat

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Our “New Shoe” is loss of dexterity in right hand. Her left hand went two years ago. So, I am now feeding her. It was difficult for her to accept, but I think she has come to the realization that it is necessary and allows me. A new shoe every month...

Blessings,

Bobby

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Cuttercut this happened to G too. He actually became totally disinterested in TV. I thought he might listen to the radio but he didn't want to listen to that either. All he wanted was to listen to me talk to him and hold his hand.

So I think you might be wasting your money buying a bigger TV. I think maybe he has had another step down. Just talk to him, or if he likes books maybe read to him?

Hugs to you.

Marie x

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Yes, books on tape. He can't follow tv unless baseball or pickers which he can listen to.

Thank you Marie.

Cuttercat

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Hi there, Leon (hubby) also has major eyesight issues, he is mostly confined to his tilt wheel chair now, and as his head is almost stuck on his left side and forward now, I tilt the chair so he can see the T.V. better, he however, mostly listens only now, as his eyes are closed most of the time, I have tried the special tape to keep them open, however, he then cannot blink and his eyes dry up which then causes more issues. I have tried a Tablet (Ipad) with a communication program on it, but due to his hands being so contorted, he finds that difficult too, to communicate. The best item for him is an alphabet board, which he can point to the letters to make us understand his needs, so so frustrating for him,and us, as now he ten ds to spell words incorrectly, e.g. when, may be wehn, he has had cataracts and glaucoma in the past too. This is such an incidious illness, so so cruel. Now into our 9th Year, 5 since I actually worked out what he had,(the Neurologist was surprised when I suggested P.S.P.) but totally agreed with me !!!!!! Thoughts are with everyone going through this with their loved ones, this site is so amazing and comforting. Cheers Marg H Howlong N.S.W. Australia

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It appears like Leon and Charles are in the same point of progression. He closes his eyes most of the time now. And, yes, the alphabet board and pointing is the best. Each day brings something new and hideous. I hate it for all of us.

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First of all, I'm terribly sorry for both of you. Your post painfully reminded me of my mum and what she suffered so uncomplainingly.

My mother lost interest in TV due to problems with sight and concentration. But speech radio continued to be soothing and a source of pleasure for a long time. I noticed that when she listened to the radio via headphones, her involuntary humming noises reduced. Maybe headphones can help Charles too.

My mum also experienced wild agitation, when she tried to climb out of bed, panting like a wild animal. I never found a way to pacify or soothe her when she was like that. It must be terrible to feel that way when you are semi-paralysed. Eventually, she wore herself out and calmed herself.

I'm sorry I cannot be of more help. Thinking of you both and wishing you a peaceful night tonight.

Amanda.

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He loves books on tape and we listen together. It is our happy time. He isn't agitated to the oint your mum was but it is day to day. I can't believe what we all have to go through. Awful, awful.

Thank you.

Cuttercat

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I did download a program on Leon's Tablet from Vision Australia, where I could download talking books, whilst I had Leon at home he would listen to them, but since he went into care 3 months ago he refuses to listen to them. When I leave him daily at 4p.m. he wants the t.v. on. Just listens to it after I put him into bed. Such a cruel, hideous illness for us all. Hugs to everyone xxoo

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At our local Parkinson's group, they brought in a neuro-opthalmalogist who specialized in these things. . . .I didn't even know there was another level of eye doctor. No doubt you've seen all the specialists, but wanted to throw that out there.

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Have not heard of such a specialist. Thank You.

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The woman whose husband was diagnosed said that his eyes were actually flicking up and down so fast that you couldn't see it, but that the specialist could see it with some special equipment.

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My Don,in his last days(died July,2017) could not see the TV at all but had it on listening to it. One of my fondest memories is taking him to our granddaughter’s high school basketball games where he would “listen to the game” I would keep him updated with the score and he was content. My heart goes out to you in this regard.

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I didn't want to start a new post for an issue that's been discussed, so just posting here.

While with dad today I noticed he was blinking a lot, asked if he had something in his eye..no, asked if he could see.. no he can't. Proceeded to ask a bunch of questions and discovered he couldn't see anything, everything was black. I got the nurse and she asked a bunch of questions and did a few simple tests, her response was to forward the info on to hospice and see what they wanted to do.

By the time I left he was "seeing" again but from what I could understand only shadows, shades of black, white and grey.

Dad has always had excellent vision, only started using reading glasses a few years ago. If I had to guess, after reading some of the older posts, I'd say his eyes are ok for his age but his brain isn't processing the images correctly, if even at all at times.

Ron

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So sorry to hear this Ron: How sad for your dear dad.... Is he stressed by this?

Sending you hugs..XXX

Anne G.

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Dear Cuttercat

Wish I had advice or a useful suggestion - you are doing everything I can think of. We use audiobooks and I read the newspaper out loud too. So hard for people who used to be avid readers

Sending lots of love and a big hug

Tippy

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