Took P to see the neurologist for 6 monthly check and I asked him about P`s sight. How do you check the eyesight of someone who is barely able to communicate ? The doctor said it is because of the lack of blinking that problems occur and also that it is difficult to focus. His solution is ..... an eyepatch to cover one eye and make the other focus better (he said Boots used to do a package deal that included a parrot and cutlass but health & safety have put a stop to that one !)
Has anyone else come across this solution, or have any other suggestions ?
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Keeping the eyes moist helps focusing, but I think for my guy the fixed gaze is a big part of the problem, and that and lack of muscle control contribute to double vision. I think Shasha (am I right, Sharon?) sometimes has worn a patch for the double vision. My guy does really well communicating at the eye doctor, he tries VERY hard, so much so that there's always a new and radically different prescription, none of which helps him, he says, hundreds of dollars later. The ophthalmologist doesn't get that whatever he is seeing at the moment of the test won't be true 30 minutes later. Pretty frustrating.
Not much help for you in this, sorry. Just sharing the problem, I guess! I hope someone else is more use! Love, ec
Hi, I have been wondering this point. S got a letter, saying his eyes haven't been tested for a couple of years. Can't really see the point, in trying to take him to the opticians. Can't concentrate to read anyway.
That's it, too. The concentration is gone. He insisted we go buy generic reading glasses, twice, since his bifocals aren't of any use, so we'd dropped that adjustment, and when they didn't help wanted to fill the prescription for them his doctor had written, but I delayed for a day and he forgot the request, as he won't try to read anyway for more than a second or two. He can't even follow the audio books anymore, most of the time, can't gin up the interest when I try to suggest he listen to something. He listens to the news on the radio all day, occasionally music - but LOVES The West Wing, which we have been bingeing on every evening almost, for the past few months! We are almost through them, and then what will we do?
The NHS send Spec savers to us at home. However, the best solution ( and cheapest!) is if B. closes one eye, which he prefers. Funnily enough, I told my optician about my husband's condition and he recommended this too. X
Yes Heady, I too wondered if it was 'worth' getting P's eyes tested but then if it helps even once a week for him to look at a newspaper or a magazine I reckon it would be saving a little more of his 'old' life.
Last time I took F for an eye test they said there was nothing they could do, it was his illness, when they sent a reminder this year I couldn't really see the point, so he's not been, but he is under optamathogist, although they said his vision wasn't bad enough for prism glasses, but don't see the point in the optition. From what little knowledge i have from when F had double vision with a previous illness, covering one eye helped but there wasn't the other problems that come with PSP eyes
Thanks Debbieann, it`s a tough one isn`t it ? I will definitely be getting the patch because it will be easy enough to try it - maybe even give us a laugh !
Bugs Orthoptist and Opthalmic surgeon seem finally to have concluded that the double vision is the result of PSP rather than a "normal" squint. In the past they have tried prisms and botox and none have helped. If she wears a patch then she can see clearly with one eye but does not like the one the NHS gave her.
If you can, get P seen by your hospital Orthoptist - I noticed that the ones who deal with little children seem to be the best with patience and coaxing out the test answers .At least the you might find if prescription lenses would benefit.
If eye patches are the answer, have a look at kayfunpatch.com - they make all sorts of coloured and patterned patches and also ones that fit onto the glasses rather than elastic round the head.
Dry eyes are becoming a problem for Bugs. She had a lot of problems removing contact lenses and I am waiting to hear from the surgeon to see if there is anything better than over the counter drops. I hope to hear next week when he is back from his holiday and will pass on any info.
Have wondered about my man's sight too. He is barely able to feed himself, and more often recently, has been putting spoon in front of, or beside the bowl/plate to get food, rather than into the food. Is this an indication of poor vision, or just his poor brain being spatially unaware?
P often tries to pick something up from the table but just seems to `grab` in the general direction. He also misses his mouth when trying to drink with a straw - it can end up in his nose ! Who knows (no pun intended) with this dreadful illness there are so many complex symptoms, a new one seems to pop up almost every day.
I noticed that my guy does a much better job at making sure his food makes it to his mouth when its a burger, sandwich, taco or something he grabs with his fingers. Coordination for eating is better, easier and not so messy. When we go to restaurants, he orders those kids of meals so its easier and less embarrassing.
Yes, I`ve noticed that although P is fed with main meals, when it comes to afternoon cake or other treats, he will reach out for himself ! Sadly the days of our visiting restaurants are long gone.
Try placing the plate dish or mug further away from him .
The cognivity is poor most likely as well as poor spacial awareness is a big problem.
When I feed jonphn I have learned to not put anything too close to him , you think you are helping in doing so but it's more difficult for them to work out where isn't is coming from .
I also find prompting helps , make him aware of each spoonful .
Have had eyes tested and payed for glasses that were absolutely no help .soothe eyes with cold tea bags . Cleanse regularly with with a baby soap and oil to soften the lashes . They will bet crusty and itchy otherwise
Kim's eyes have all these issues everyone has mentioned. We haven't tried wearing an eye patch and I doubt if she would be willing to wear it. My dad has myasthenia gravis and causes double-vision. He says when he wears the eye patch, it really helps. But he's had kids come up to him and ask him if he was a pirate. He'd always say "Aye Matey".
I'm wondering what the criteria is for being considered legally blind? In the US, you do get a small break on your Federal taxes each year. Since Kim hardly communicates these days, I just wonder how well can she see. I have the TV on throughout the day, but have no clue if she can see the picture or even if she has the mental ability to comprehend what she's seeing/hearing. If she's not, then it has to be extremely boring for her. This disease just breaks my heart. So unfair. Sometimes I just want to scream. $*@*$(!*!^(!$( Ah, I feel so much better.
I have had the same thought about what is considered legally blind? Since the stem cell injections my guy is actually reading the newspaper again but he still has that awful pain. It is taking him alot longer to read through stuff but at least is trying again. That is a question for the social worker because I know eventually he will be unable to see clearly. He sits in front of the TV and listens and looks but he says it is not clear. Need to find out.
Agree, this disease breaks my heart too! I ask myself this so often..."how the heck did this happen to this amazing man and WHYYYYYYY?" #ihatepsp.
Thank you for your reply. I also wonder if P can comprehend what is on TV but sometimes he will make a (belated) comment on something he`s been watching so I figure it`s worth trying the patch.
Feel free to scream - I know I have done many, many times physically and in print !
Thank you all, Saucy Cabbage Nanas! Sounds like it could be his eyes. He did ask over a month ago to get his glasses script checked, and his ears as he could not hear. Got the ears cleaned out. Made a world of difference! Not sure how his hearing is any more as he refuses to wear his hearing aids, but seems to hear us all! Have assumed he has lost spatial awareness when he misses his bowl or mouth - but who knows! There seems to be so much ground uncovered in this disease!
Haven't tried screaming yet. No doubt there will come a time! Just had a lovely day with my man in hospital. After a couple of 'away' days, he was home! Lots of hand holding, laughter with and because of nurses, and a comment that 'this was a nice home'. He seems happy, or at peace. I can't get him home again, as our home does not have facilities to manage his needs any more. I just hope he will manage transfer to a nursing home and new carers.
Thanks all. I appreciate your support so much - even though I find myself responding inthe middle of the night! By the way, I lived in Sheffield while I was a student there in the '60's. That is where we met.
Parkinson's may reduce the immune system. Scalp and/or facial rashes may appear which cause eye inflammation and/or fatigue. Parkinson's may also increase the blink rate from a normal of 17-18 to a low of 2-3 times per minute causing extreme dryness, a burning sensation, and/or limitations on perception. Treatment may be partially experimental as most medical professionals know very little about Parkinson's disease. A dermatologist may help with any facial skin concerns having a bearing upon sight. An eye exam may give a solution to a low blink rate although eye drops will be at the top of the list. Any governmental agency for the blind or sight impaired may help you with audio books, audio newspapers, and audio magazines which will help to relax your eyes. The same agency should also be able to help with large print items, magnifiers, and computer software for the visually impaired. REMEMBER: MOST MEDICAL PROFESSIONALS HAVE EXTREMELY LIMITED KNOWLEDGE OF PARKINSON'S DISEASE AND THE RELATED SYMPTOMS. Your own research, a dynamic neurologist, and websites such as parkinson.org/ and parkinson.org/ may prove to be of immense benefit.
So agree with you Michael1953 ! Ward doctor bavk from 2 weeks hols. His colleague told me today he STILL believed what my man has is Parkinsons, and is trying to pin dementia progression over past week down to the steroid treatment! CBD diagnosis was by very bright young neurologist whereas other dr is stuck with oldies all day long. When there is no reaction to madopar, and life can go so dramatically downhill in just 1 month - my research suggests otherwise! My man can no longer converse with the doctor to refuse any reinstatement of meds, so I will do it for him if necessary. Also got put off setting up the POA last week. This week the nurses started documenting my man's weird comments. So next week just might it signed off! Then we might be out snywsy!
Had a chuckle tonight. Two lovely nurses took my man to toilet and mislaid the replacement nappy. They searched everywhere. One checked, as you would!, to see if it was under his nightie. It wasn't - but there was a very quick 'Steady on!' from my man, along with a chuckle! All in good spirits!
Needed a laugh. He had spent most of dinnertime trying to eat the dirty marks on his feeder, and objecting to my trying to help him eat. Tried to be delicate about it, but did not succeed today.
Sure is a hard road sometimes! But another day tomorrow - no 2 alike, eh?
We tried a smokey lens to cover one eye, prism glasses too. The best solution is for my husband to close one eye, then he doesn't get double or out of focus vision then. My optician recommended this as the best solution. I was pleased, as my hubby had been doing it for months!
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