Eye not wanting to open

[Stephanielayell82]

My.lpved one whomive been taking care of for 7 years yesterday couldn't open her eyes. She says it started 2 months ago but no care givers have witnessed this. That is probably just her cognitive state. Is this common with PSP? She is also on hospice has been since July 2021. She also seems to be putting on weight even though she doesn't eat much. We were told she wouldn't be able to gain weight with her poor nutrition. What a roller coaster this disease is.

[Zerachiel]

My wife's eyes close without warning and she struggles to open them resorting to pushing her eyelids open with her fingers. She has Botox injections in her eyelids to help with this.

[Stephanielayell82 in reply to Zerachiel]

Thank you for your feed back!!

[LuisRodicioRodicio]

Hi Stephanielayell82!

These are our experiences or information from other chat members related to PSP hoping they can be useful to you.

• Dry eyes/watery eyes.

The first thing is to evaluate if there is any damage to the cornea.

Erosions in the cornea have been described that lead to a blinking higher than normal that leads to further irritation of the cornea (AJK2001).

If there is not a problema with cornea have in mind dry eyes is a classic problema and drops of artificial tears to the eyes or physiological serum upon request (more often as the disease progresses) is a good solution.

If you have problems applying the drops "Optrex spray" is an alternative. Also warm moist compresses help. Wash your hands beforehand and clean the eyelids with not irritating baby shampoo. and after use a gauze sterilized by each eye, moistened in physiological serum.

Attention. It can be also an allergic problem.

To improve the lubrication of the eye we have tested "Hycosan Extra" (Sodium hyaluronate 0.2%) (Aquoral is similar product) by applying it 3 times a day. It bothers a little in the first seconds after applying. Our experience has been positive and we have noticed that the internal redness of the eyelids has diminished.

For hydration,Systane Hydration UD helps but nothing really works for long. (Hound25).

Consulting an ophthalmologist who has experience in PSP is recommended.

• Clarity produces "photophobia" and irritation of the internal eyelids. The patient used sunglasses frequently and applied artificial tear drops or saline serum upon request (At least 3 times a day). Sometimes suffers headaches and eyes pain on afternoons. We suspect that the origin is photophobia. We usually neutralize them with paracetamol.

• In the morning the eyelids may appear "stuck". To avoid it put eye ointment in at night to help lubricant the eyes. It is also possible that the eye may not stay closed all night and it dries the corneas. The ointment is: 97% petroleum jelly and 3% mineral oil. Xialing or cod liver oil capsule can work also (Afar).

• Blurry eyes may be his not fully closing his eye when he is asleep. The lower part of corneas may be drying out. Are her eye tearing? If so an eye ointment in each eye at night would be good to protect the corneas. Hot compresses on the eyes as well. (Jeff166)

• Lizzigator_2022 suggest:”symptom as watery eyes are a sign or ‘dry eyes’ peculiarly which can make the eyes extremely uncomfortable. I use Optrex eye drops and apply it regularly through the day and my mother gets good relief from them and her eyes stop watering. Any off the shelf dry eye product will do the trick.”

Hug and luck.

Luis

[Stephanielayell82 in reply to LuisRodicioRodicio]

Thank you for all the wonderful information!!

[Railfan]

The eyelid closure is called Blepharospasm. It is a symptom with PSP and may be quickly resolved on its own or it may last a bit. I have this myself. If I cannot open my eyelids then I use my fingers to push them up. PSP is a Movement Disorder and voluntary muscles are the most affected as they are controlled in the Midbrain. The Midbrain is one of the places that the Tau Neurofibrillary Tangles. The muscles that control the eyelids is above each eye. By pushing the eyelid up you push the bottom of that muscle up.

[Stephanielayell82 in reply to Railfan]

Thanks!

[JantheNana in reply to Railfan]

My late husband had this condition also. Sometimes while walking he would have to stop and pry his eyes open with his fingers.

[Stephanielayell82 in reply to JantheNana]

Thank goodness she is not able to walk hasn't in 3 years! How terrifying that would be. Sorry for your loss! Thanks for sharing

[Hastings2021]

My husband was the opposite, towards the end he would sleep with his eyes open?

[Stephanielayell82 in reply to Hastings2021]

Thank you for your feedback!!

[messier]

On the weight gain please consider whether she is retaining fluid as this causes weight gain. Do her feet and ankles look swollen that's often the first place. Fluid can collect on the face, hands, abdomen too. This may be due to heart problems or lack of movement making it difficult for good blood flow.

[Stephanielayell82 in reply to messier]

Her feet and ankles swollen area have went done they were pretty swollen. And when she was retaining fluid it was moveable in thigh area where now it's more solid feeling . But maybe because the fluid filled in more not sure. Thanks for your response!