I wanna talk about eyes with Psp patients

Ok, this isn't something I'm very clued up on, so just writing a post

Dads eyes have been very vacant for a while now, but, they are now tending to stare (at the ceiling or any direction but us) 😓

Mums reads the newspaper to dad, as he canno longer hold it, and doubt he could actually read it, but I don't know this for a fact?!

He appears to be able to see the tv

I suppose what I'm getting at and very frightened of asking is, could my dad lose his sight? Stupid question really, but I just want some views/answers

This Psp just seems to go on and on and on and I'm sick and tired of it taking every part of my dear dad away! It's eating me n mum up in the process

So darlings, please tell me about your/or loved ones eye sight please, I need to prepare for the worse and as scared as I am I need answers

Lots of love to you all X

42 Replies

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  • Hi Satt,

    Sadly this can be a symptom of PSP although I try to convince myself it won't happen to Keith (not very well though!) I don't think any of us knows the answer to your question, people are so differently affected by this cruel disease. Keith can no longer read but he can watch the television, he says he gets blurred, double vision so I'm not really sure just how much he can still see? He can't look downwards any more so for example can't see the food on his plate, I have to feed him.

    I wish I could give you a more positive answer but I can't, loss of sight is a possibility 😔

    Stay strong sweetheart, you sound a very supportive daughter and your Mun and Dad are very lucky to have you to care about them so much!

    Sending you all a hug....

    Lots of love....Pat xxx

  • Sorry should be Mum! xxx

  • Thx u pat

    I understand everyone that has Psp is different and like your Keith Dad seems unable to look downwards and we also feed him 😓

    It's just all so wrong!!

    And yes of course we love him to the moon n back! Even right this minute and he's done a huge horse pooh! But you know what? I rang the district nurses and they are cleaning up as I type!

    Big hugs X

  • The 'Supranuclear Palsy' in the PSP name refers to this eye phenomenon. The eyes may end up frozen in an upward gaze so looking anywhere else requires movement of head. As neck may also be quite rigid, it can become very difficult. Towards the end Chris reached this stage and finally admitted he was listening to the TV not watching it. We actually only had films/TV series on DVD so when there wasn't any dialogue I would explain what was happening. He also listened to BBC Radio 4 a lot and got the news that way. He wouldn't listen to talking books but your Dad may enjoy them. I downloaded one on free trial from audible.com then forgot to cancel the free trial. But I was only a couple of days late and I emailed and explained and they cancelled rather than hold me to year's subscription. Chris also loved going for long drives through the mountains where he could see landscape and sky, we live in a beautiful part of southern Turkey so our very favourable climate meant we could do such drives year round. Good luck.

  • Thx u for your reply pattz x

  • Hi Satt,

    Hubby Ronnie has blurred vision, and indicated that he could not watch the TV programs anymore, but can hear. He was so afraid of going blind. We went for a complete and thorough eye check-up by the opthamalogist, and they confirmed that the issue is not his eyes per se, but it is the progression of the PSP. There's nothing they could do, and Prism lenses will not help either.

    They did, however, suggest that he wears an eye patch - when he focuses using both eyes, his vision will be blurred but if he covers up one eye, there may not be blurring. Regrettably, Ronnie finds the eye patch uncomfortable, so refuses to wear it. So, I can't tell if it will work but you can try. All the best.

  • Thx you bianca very informative x

  • My Dad's first symptom of PSP, double vision, was 10 years ago when he was age 71. He still has double vision often if not all the time now. When he's watching TV which is the main way he spends his time, he closes one eye, or sometimes holds his hand over it to keep it closed. I doubt Daddy would wear a patch either.

  • Awe bless him x

  • So sorry not to bring any positive facts.Our GP thought Des should see a different optician.New optician said he couldn't help til the cataracts were removed and wrote to GP.GP told me an operation was inappropriate so with bad sight and cataracts Des could see nothing much at all.PSP just keeps taking and promising to come back to take something else.TV had been such a godsend in the beginning but by the end not much interested him.SORRY You are right to hate this disease, we must find a cure.Love Px

  • Thx loppylugs

    Oh dear god I wish they could find a cure and quick!! X

  • Yes, I am afraid that this is a symptom of PSP, They have injected Geoff's left eye with Botox But unfortunately it has not made a lot of difference.

  • Awe bless him dottielottie x

  • Hi. Sorry I'm not going to give any different advice than the others. My mum sadly lost her fight in June this year. She suffered for a long time with her sight, again surgeons would not operate on cataracts because of her posture. Glaucoma was a major thing with pressure in the eyes eventually taking her sight completely. Drops were used in both eyes to control the pressure but to no avail. Eventually, a week before she died her eyes became fixed, not even blinking once. Doctors gave the explanation that she was in a comatosed state at the end. Hearing, we think, was the only thing PSP didn't rob her of. Mum was also bedridden for the last 18months due to pressure sores. Unfortunately, even after the sores had been carefully treated by staff, mum had got that much weaker, she was unable to be move from the bed.

    Sorry can't give more promising advice, just make sure you press the medical professionals for as much help possible. Our loved ones deserve that!

    Take care x

  • Hi dibber how are you doing.... have found another person in the village with psp..

    Janexx

  • Big hugs dibber

    😓 x

  • Hi as others have said PSP is based in the supernucleur area of the brain where amongst other things eye control is situated, so the lose of eye movement controls are early signs which gradually worsen to point of fixed stare dry blurred vision or closed eyes.

    M's first step to diagnosis was when at a regular eye test the optician noticed the irregular eye movement that was over 6 yr ago. M lost eye movement and developed the stare 2 yr ago she needs artificial tears (eye drops) to keep her eyes moist and stop the reddening. She can look at photos if placed close and recognises faces if her head held up, but listens to TV and radio as cannot look at anything for long periods.

    The lack of blink and eye movement is distressing but usually they can still see you they are not blanking you its just the eyes can no longer respond to seeing loved ones. It is hard but keep looking at him with interest and love he will appreciate it even if his eyes do not show it.

    Good luck Tim

  • You made me cry Tim x

  • Just a thought.

    When my wife's eyesight deteriorated to the point where seeing the TV became impossible I tried listening to some of the programs with my eyes shut, it was awful, most particularly the action films. Stupid as it may seem I really hadn't appreciated just how much TV story lines relied on the visual aspect to hold interest. Rather than give up watching TV I bought some earphones that when plugged into the TV turned the sound off, in that way Margaret could listen to the radio or something geared to sound rather than vision, whilst I watched TV.

    Best wishes, Jerry.

  • Very good idea Jerry thx u X

  • Nice idea, very thoughtful of you

  • My wife, who passed 6 weeks ago, began staring straight ahead for about the last 6 months. I was never for sure whether she could see much of anything, as she was so unresponsive and unable to communicate much. I know if I held a picture in front of her, she could whisper who was in the picture. But as far as watching TV and getting something out of it, it was probably pretty much nil. It had to be like being in a prison towards the end. She is finally free of this horrid disease.

    God bless each of you struggling with this disease.

    Ketchupman

  • Dear ketchupman

    How are you coping?

    I agree that your wife is now at peace and free of this truly evil illness!

    Biggest hugs to you X

  • I'm hanging in there. Multiple sad moments throughout the day with a few good cries. Doubt if they will ever end. But that's OK. Keep trying to remember more of the good times and healthier times, but the last 3-4 years were pretty tough and hard to forget. And the final day of her death is even harder to get out of my memory. I really miss my sweet wife, but I also really miss having someone to take care of, that totally depended on my being. Crazy, eh?

  • Bless you ketchupman

    Doesn't get any easier does it?

    However it's brilliant that your here supporting us, thank you! X

  • Not crazy at all....

  • Ditto what the others have already said - the only thing is, with my eyes although I sometimes feel as if I could have them both staring into space for an indeterminate period of time, I don't!!!!! I am so aware of my eyes at times, that I feel I am going crazy (ier)!!!!!!!!!

    I also wanted to say to whoever posted one of the earlier blogs for today, about his/her left arm not moving when walking...........this was one of my very earliest symptoms of PSP when my right arm was not moving in time with my left one when I was out walking and a friend noticed it (a very astute friend). Anyway, I am still here! YAY!!!

    Cheers and to all, a good night (or morning depending whereabouts in the world you happen to be!!). XXXXXXXXXXXXXX

  • hi bindi well at last I have finaly got to answer your mail mate from to long ago well you said maybe we could meet up well matey I anm alloedd to driv only 15 klms which gets me and the mrs out of the house down to the supermarket and I would be no good on public transport mate x

  • Hi there Peter, well, I am so glad you are still around Brisbane.. I have recently begun to wonder!!!!

    I am sure that my hubby would not mind driving me over to meet up with you - but only if that would be ok with you both.

    Now Peter, all you have to say is where and when...!! we will also be very happy to bring morning tea!!!!!

    Cheers Bindi xxxxxxxx

  • Dear Ketchupman,

    So saddened over your loss.. Thoughts and love from halfway across the globe.

    My father is not doing too well these days and his vision has deteriorated considerably too.. what dreadful ailment this is..

  • What is happening as you describe it is exactly what has happened to my husband's eyesight over the last few years. He has not gone blind! He can't read small print....just the headlines. They read the paper to the clients every day in Day Care. He looks around, too, not sure why but his very blue eyes have become very pale. He can see all of us just fine and doesn't bunk into anything when walking. This has been this way for a few years so I don't think he is going blind just not great vision anymore. The eye Dr. said stronger glasses won't help. It is the nasty Parkinson's at work.

  • Hugest hugs 😓

  • I forgot about the TV. He does watch it and tells me he can see it but I don't know how well. If I say something about what I saw, he will say "I missed that". I sometimes wonder if blurred vision has gradually crept up on him and it's become the new reality and he has forgotten what normal vision is like. Looking down seems to be harder for my husband. When eating he will sometimes stab the flower on the plate with his fork rather than the meat.

    God bless you for caring about your loved one! It isn't easy to watch them go downhill but your presence and affection keep them trying to go on.

  • Many have commented that this is indeed a manifestation PSP. Interesting that my husband was diagnosed 15 years ago and I noticed he stared at least 20 years ago. To the point that I would say, "Blink Artie!" when he would be talking to me. I never connected that t PSP....just thought he had developed a habit. I now believe it was the beginning.

  • My mother never lost her sight but before she lost the ability to speak she would tell me she couldn't focus. It made it difficult for her to watch tv let alone read the newspaper. We moved the tv to different areas in her room throughout her illness so she could attempt to watch some of her favorite shows. Being that she had no control over the movement of her eyes or head, we tried to accommodate. This is a terrible disease. I wish I could tell you it will get better. All I can tell you is to enjoy every single moment with your loved one. This disease is unpredictable. Blessings to you and your family.

  • Bless you X

    Huge hugs x

  • As the others have said, it's a symptom of PSP to have fixed eyes so the only thing we can do as carers is make it as easy as possible for them to see as much as possible. It's my darlings birthday tomorrow so our grandchildren have been here today, returning tomorrow, and each bought him a gas filled balloon on a long string. They took it to their grandad lying in his bed looking up at the ceiling and both let the balloons go so they remained above his head, the strings hanging down. He did one of his rare little smiles. I takes photo's of places we visit on my iPad and then put it above him so he can see what I am seeing at the same time. I've had to accept that he isn't going to improve so I have to do all I can to improve the situation for him. It's rotten, but unfortunately, it's how it is.

    X

  • Happy birthday to Colin, give him my best wishes and hope he enjoyed having his grandchildren round to see him.

    Lov Kate xx

  • Thanks Kate

    X

  • I ahve nothing to add taht has not already been said. I asaked my husband tonight what does he see? He says it is out of focus....his eyes do not look crossed and he says he does not see crossed. when I tested his periphery I waas surprised that he could see below what I thought was his lowest view point. He does have somewhat of a fixed gaze in that he cannot look downward . he did shift his eyes very slowly side to side ...again I was surprised....HJe3 cannot read so I read news articles; his moms letters and he listens to audio books. He does watch tv but there are only a few shows that he stays fixed on with out changing channel frequently...He does have drooping lids or ptosis. I have been thinking about the frame that can push the eylid back so that the patient can use their eyes. have yet to try it. Expensive with no guarantee they'll work. B says his glasses don't really work for him ....so he may wear them out of comfort or habit,. He wears sunglasses until evening time . day light getting more difficult on his eyes.

    So as you can see PSP will takes its toll on the eyes. The best thing to do is see the man inside as you already do....

    AVB

  • Ben has just had to stop reading as said he has double vision,nee is still able to watch TV but spends most of the day in hospital linked up to his radio to keep up with the news and other interesting articles on radio 4.

    K xx

  • 😢

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