Closure of the eyelids in PSP

[crwban]

Hello

I'm a new member. My wife has been living with a genetic form of Frontotemporal Dementia for around 10 years. Late last year she was given a diagnosis of PSP as well. This has had a profound affect on her mobility and is totally dependent on carers to transfer from one place to another. She is still able to walk to a certain extent with the support of two carers. She is unable to communicate verbally.

She closes her eyelids quite often, especially when anyone approaches too close or when she is not feeling well due to UTIs etc. This makes supported eating and walking even more difficult as her balance is seriously impaired. Apart from botox, has anyone come across anything that will encourage her to open her eyes in the short term?

Thank you

[Hidden]

Larry’s eye teared a lot. With PSP his eyes weren’t fully closed while sleeping. The lower part of the cornea was drying out causing irritation. Your wife may also be experiencing lower cornea irritation. The treatment was an eye ointment and warm compresses. PSP manifest itself in so many different ways from person to person. This is just a thought as to why she keeps them closed.

I found this out after we went to see a neuro ophthalmologist. I had no idea there were neuro ophtalmologists.

[crwban in reply to Hidden]

Thank you for the feedback. My wife's eyes do seem to be dry and flaky at times. I will try what you suggested. I had no idea either that there were neuro opthalmologists.

Thanks again.

[HARRADL in reply to crwban]

It was recommended by my mom's neurologist who specializes in PSP to occasionally give her eye drops to moisten the eyes as the eyes can stop producing moisture. My mom closes her eyes all the time too. It is controlled by the brain stem so is a symptom, but my mom is always exhausted and likes them closed. She is listening though. We did take her to the ophthalmologist and ruled out eye issues. This was not the problem. Good to do as mentioned. Also suggested here too, warm compress can be soothing.

[crwban in reply to HARRADL]

Thank you for your reply.

[AJK2001]

Agree with Jeff dry eyes can mean it is more comfortable to keep them closed. Could also be light sensitivity, mum used to wear sunglasses all the time, indoors and outdoors. You can get different coloured lenses with extra good wrap around from the RNIB or local eye society. Mum found a green lens worked best for her. One more thing is her eye movements. If the eyes aren't moving together, she may be getting double vision which then makes her feel giddy and sick, so it's more pleasant to have eyes shut. If the problem is consistent then a prism can be prescribed for glasses. If it changes as mum's did the only option is to block one eye with either a patch or an obscured lens.

A visit to an opthalmologist and an orthoptist would be good. Is she able to answer questions by gestures - thumbs up or hand squeezes? I'm afraid these types of appointments can be very tiring and stressful for both you and her.

If your wife's eyes are flakey, this might be blepharitis, warm compresses and regular bathing can help. You can buy a eye bag you heat in the microwave. We used this everyday and it helped the crustiness no end.

[crwban in reply to AJK2001]

Thank you for your reply. She is light sensitive when sitting outside and wears sunglasses. I'll get in touch with the RNIB regarding the lenses for indoors. Unfortunately, she is unable to answer questions by gestures.

It is very reassuring to have found the PSP association.

[AJK2001 in reply to crwban]

I found this site such a help, getting advice but also just knowing that there are other people out there that are going through similar stuff and understand. I hope you find it as useful

[crwban in reply to AJK2001]

The gel eye drops seem to be helping as they are less flaky. Is there a particular frequency of light that affects PSP, as I'm thinking of trying shaded glasses for indoors; a green or yellow tint has been mentioned in posts. Can anyone help with the above.

Thanks for all of your advice.

[Railfan]

You mentioned that she closed her eyes as people approached. I have Executive Function Dementia in association with PSP. Part of that is Sensory Overload. It manifests itself with various involuntary reactions. Could she have other signs of Sensory Overload such as appearing startled or wincing as if in pain when her eyes close due to close approach? Another thing I thought of with the Sensory Overload is that I have problems around rapid movements, too many or loud sounds and flashing lights. If it is Sensory Overload causing her to close her eyes on close approach, try approaching slowly and with quieted and slowed talking so her brain has time to process the multiple stimuli.

[crwban in reply to Railfan]

Thank you for your reply. Sensory overload could also be a factor. I will share all of the comments with our carers.

[Espink50]

A low dose daily antibiotic can help with the UTIs.

[JantheNana]

This is a problem I have not seen discussed very often on the PSP forum,but for my late husband it was a huge issue.Even when he was still able to get around with a walker,he would often have to stop walking and use his hand to manually pry his eyelids open. He did get the Botox injections.They helped a little but not much.

[crwban in reply to JantheNana]

Thank you for your reply. I am sorry for your loss.

[ncgardener799]

Incomplete eyelid closure as mentioned can cause very uncomfortable dry eye . At night you might want to try eye GEL drops and possibly putting an eye mask on to help protect the eyes when lids do not completely close. The gel drops are more viscous/thicker and are able to stay suspended on the surface and act more like a natural tear lake. If that does not provide adequate relief, then an artificial tear OINTMENT applied along inside of lower lid, and patching eyes at night, and again using ointment during day, may help provide relief. There are solutions for cleaning exterior surfaces of eye lid and lash area, you can find them in a pharmacy .. A mild solution of a Baby Shampoo,( NO TEARS PRODUCT) and a little water also works for eye lid cleaning without risk of irritation to eyes. My husband (PSP) also wears glasses with a prism and needs light protection indoors and out. He uses dark glasses with side protection most of the time. At night indoors or in dim house lighting at night he has found yellow tinted glasses to be helpful with diminishing the discomfort of natural light even in the house. Lots of good suggestions on this site-hope one works for your wife.

[crwban in reply to ncgardener799]

Thank you. Your reply has been very informative.

[crwban in reply to crwban]

The gel eye drops seem to be helping as they are less flaky. Is there a particular frequency of light that affects PSP, as I'm thinking of trying shaded glasses for indoors; a green or yellow tint has been mentioned in posts. Can anyone help with the above.

Thanks for all of your advice.

[Hidden]

Everyone has such good information for you & your wife.

Mom had the same problem with her eyes... also light sensitivity & double vision. She was given eye drops. Poor vision & balance are horrid combinations known all to well to PSP folks & their loved ones. Sending you both hugs... Granni B