Double vision

[Joanne19]

Hi everyone, have been reading posts on this site for a while and found them very helpful with everything from medication to equipment, so thanks so much for that. My husband was diagnosed with PSP in 2020 and up until a couple of months ago was able to walk independently on a walker. However, recently his mobility has deteriorated and we have to use a wheelchair to get around. Not only that but at the same time he developed double vision and it’s this above all at the moment that’s driving him crazy as he can’t read and is struggling to watch tv; yet another cruelty of this horrendous disease.Has anyone else experience of this and what can be done to help? Would really appreciate any advice.

[Millidog]

Hi My husband started with eye problems 2 years( 2019) before his PSP diagnosis and was seen by eye hospital in Stockport and given a prism sticker for one lens on clear glasses it helped a little for a while. In May 2021 he had more eye issues double vision and blurred vision and as we had moved to Dorset was referred to Eye dept at Dorchester Hospital. They confirmed these symptoms are very common with psp and have been great in seeing Glenn every 3 months. They assessed his eyes and determined he doesn't have double vision close up or with reading but does with distance. Initially they gave him a more accurate prism sticker for one lens. A few months later they increased prism need and advised that it should be built into his distance glasses after optician eye test. Glenn has a 6 point prism built into each lens which does thicken lens at each side but not really noticeable. Optometrist at hospital said no more than 12 built in as could end up too thick and heavy and she would add a further 4 point sticker to one eye as there had been deterioration. She will monitor this and increase the prism sticker as things deteriorate. I would suggest you use this info and knowledge that eye problems are part of psp and get a gp appointment and ask for eye hospital referral. The other area is dry and sore eyes because of the reduction in blinking in psp. This tends to make Glenn's eyes run as its the eyes way of trying to counteract the dryness from not blinking. He has eye drops he's meant to use 4 x day and a night gel although it's difficult to get him to. Hope this helps xx

[Joanne19 in reply to Millidog]

Thank you so much, that’s really helpful knowledge. The neurologist is trying him on Pyridostigmine bromide ( a myasthenia medication) to see if it makes a difference but it’s not showing any effect so far. The next step is referral to eye hospital so hearing that they can do something to help is heartening. Thanks again, I really appreciate your help

[PSPfight22]

Joanne, He could see a neuro ophthalmologist for an exam & they might be able to fit him w/ prism glasses for the double vision. I don’t know too much but, my sis in law has an appt for that today. Will let you know how that goes!

[PSPfight22]

Just saw previous, detailed post on the prisms after I posted. Great info!!

[Joanne19 in reply to PSPfight22]

oh thanks for that will certainly investigate asap

[Kayelless]

I’m a reader too. I went to a broadway play last year and kept one eye closed the whole show because it can be difficult to focus both at the same time. A neuro-opthamologist told me we PSPers don’t blink enough so our eyes get dried out and recommended standard drug store eye drops with oils to keep my eyes more moist but I find myself just sitting with my eyes closed sometimes to give them a rest.

She also recommended overnight ointment but said most people don’t use it because it’s gooey and can affect vision if you get up to use the bathroom.

I wear progressive lenses in my glasses and just ordered new lenses with a wider viewing portion because it can be hard to find that sliver where both eyes are in focus at the same time.

Frustrating.

[Joanne19 in reply to Kayelless]

Many thanks for your reply, you did really well to keep one eye closed for a whole show! I’ve tried my husband with one lens covered on his glasses and various eye patches but he really struggles trying to use one eye. I know it’s a case of retraining the brain but it’s not easy…nothing about this disease is!

[Abrecheisen53]

Hi Joanne, my husband passed in 2020. Unfortunately, double vision is just another cruel aspect of psp. We never went the prism glasses route. We were told they only lasted a short period of time and were horribly expensive. Other people appeared to have success with them. We however, used an eye patch. John was a voracious reader. Unfortunately, reading fell by the wayside early on. The eye patch allowed John to focus better while watching TV and riding in the car. It also allowed the covered eye to rest. Somedays it even seemed to help to cut down on the constant watering. I bought them on Amazon. Eight for a price. An inexpensive fix for a huge problem. Wishing yoh both strength and coourage . Alice

[Joanne19 in reply to Abrecheisen53]

Thank you, Alice, and I’m sorry to hear of your husband’s passing. I am trying an eye patch with my husband but he struggles to keep it on, I guess it’s a case of perseverance. Not being able to read seems an additional cruelty of this dreadful condition.

[Doublereeder]

Hi Joanne, my Mum has similar visual problems and again frustrating for her as she was a reader. Our optician didn't suggest prism glasses but did suggest losing her varifocals and having a separate pair for TV/distance and another for reading to ease the work the eyes need to do on adjusting. She agreed to that, ordered them but still insists on wearing her old varifocals! If pushed she says it's because she's used to them but is yet another example of her ignoring professional advice even though she agrees with the reasoning. Think this warped processing is partly the wretched PSP and partly stubborn character.

The optician also recommended eye drops, as have other posts here, to keep eyes lubricated as lack of blinking a symptom.

Good luck!

[Joanne19 in reply to Doublereeder]

it’s interesting to hear your mum ignored professional advice even though she agreed with the reasoning. I’ve experienced this a few times with my husband and it’s difficult to say whether it’s sheer frustration at what’s happening to him or a processing problem. Many thanks.

[Wigwambob]

Hi Joanne,My husband's double vision somehow is not constant ,he has a prism sticker on some NHSreading glasses as a trial but sadly his apathy now means that he just sits with his eyes closed most of the time in front of the TV and does not bother with the specs. Simon has a problem with yes and no answers (like the old man in the vicar of Dibley)so the ophthalmologist was never quite sure if he really has double vision. Sorry I can't give you more positive info. Good luck.

[Joanne19 in reply to Wigwambob]

thank you for sharing your experience. My husband’s double vision is not constant either and sometimes disappears altogether. Have also discovered that if he sits a certain distance from the tv it’s not a problem which seems very strange. Sending you best wishes too.

[timbowPSP]

Hi Joanne,

I really feel for your man, and for urself too. I was diagnosed PSP in Nov 2018, aged 76 and so pissed off with their 'nothing can be done' attitude I have followed my own intuition. Hence targeted exercise, diet, supplements, therapy - which I keep up to date with as 3-4 page report. Now I still drive and am getting much more wobbly/less mobile. It probably all started with major head accident 60 yrs ago and pituitary buggered, and since then SEVERE DOUBLE VISION! Now that is getting worse and shifting around, so have to get new glasses every 6 months, too damn costly: Hoping now to get referred to hospital for eyes.

Do everything you can to help ur husband help himself, and remind him that PSP = please STAY Positive!

Best wishes to you both .... do keep contact ..... Timbow

[Joanne19 in reply to timbowPSP]

thanks so much for sharing your experience., Timbow. Very interested in the head injury/pituitary damage and can certainly empathise with the nothing can be done attitude. Trying to stay positive .

[timbowPSP]

So hard to remain positive ....... I still feel good, but then its not biting into me deeply yet. so with my partner/carer trying to negotiate and forsee the problems ahead. And make sure the Will, Living Will and Respect form are all valid and up-to-date. Still so much to keep up with AND look at moving house. Goes on for ever ....... Am happy to share my findings and some useful advice gleaned in my journey - but prefer to email direct, as pasting here splatter it too lengthy! So if you trust me, do send it? Cheers Timbow

[Junky60]

My husband had horrible double vision, at the recommendation of his eye doctor we patched one eye this helped immensely. We bought a cloth patch off Amazon and I customized it with a bit more padding and tweaked the elastic to fit him better.

[Joanne19]

many thanks for that. Double vision on top of imbalance is really awful. Am trying variations on eye patches but he struggles with keeping them in place

[Richard33]

Hi,

Ruth has double vision and uses these patches that stick onto her glasses and blur one eye. It is just a sticky patch like Sellotape. So every couple of days she changes it to the other eye to allow both eyes to stay active. She can no longer read or see her phone, but she can watch TV.

ebay.co.uk/itm/112173809733

(hope link works!)

Richard 🙂

[Joanne19 in reply to Richard33]

thanks for that, Richard, will def give it a try