Sight loss

[Beachut100]

Has anyone experienced sight loss as a result of PSP? Thanks.

[PineEater]

Beachut100 HiIs this out of curiosity or have you seen some one having with sight loss? Retinal degeneration is known to occur in PSP people. This is a leading cause of blindness among the general public. Retinal degeneration is actually a group of disorders that affect retina, you know the light sensing tissue at the back of the eye. These disorders can cause loss of vision and blindness in some people with or without PSP. Best wishes

[Beachut100 in reply to PineEater]

Thank you for replying PineEater. The first symptoms my sister displayed was peripheral blindness in one eye which gradually deteriorated, in approximately 2 years, to complete sight loss. Ophthalmology finds nothing wrong with her eyes. Initial diagnosis of stroke was later found to be incorrect. Following further symptoms she was recently diagnosed with PSP. I wonder if anyone else has blindness as I understand this is not usually associated with PSP.

[PineEater in reply to Beachut100]

Beachut100,Hi

Sorry to learn that your sister developed peripheral vision loss in one eye. Yes, peripheral vision loss (blindness), also called Tunnel Vision is a symptom of PSP which is a greatly restricted field of view. Tunnel vision means your ability to see can seem like you’re looking into a tunnel. In other words, you can only see what’s right in front of your eyes. Tunnel vision may have many causes like stroke, migraine, glaucoma, retinitis pigmentosa etc. As you say ophthalmology doesn't find anything wrong with her eyes, that means she doesn't suffer from glaucoma, retinitis pigmentosa. Stroke you have already rejected as the reason though previously, that was thought to be the causative factor. As migraine only causes temporary tunnel vision, so that also is ruled out. So, it must be some other reason like nerve damage etc. Did the opthalmologist not give her the corrective eyewear to broaden her field of vision?

Usually, tunnel vision is temporary and gets better consequent to treatment. Unfortunately, some cases are permanent. When the tunnel vision isn’t too severe, corrective eyewear, the special glasses are fitted with lenses that are designed to broaden the field of vision. Consequently, the person can resume his or her daily tasks without any trouble. I am hopeful her second eye is ok. Best wishes by to you and your sister.

[LuisRodicioRodicio]

Hi Beachut100!

I agree with PineEater.

This is the information I have been able to gather regarding vision problems related to PSP:

• If the PSP patient complains about double vision and often sits with one hand over one eye…Millidog contribution in 2022: “There are usually specialists who can help by checking double /blurred vision and vertical and horizontal gaze and they can prescribe prisms. Once tested my husband was provided with a prism sticker for one eye lens and it works well. They provide this as a stick on as changes may occur in future and they invite him back every 3 months to check progress and will alter the prism perscription if required. This has made a massive difference and removes the double vision well.”

• Railfan makes this contribution in 2022: ”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”.

• 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.

Sebuly14 make this contribution for the problem of eye watering:

“The ophthalmologist said that the eyes of the patient were dry and the surface of his eyes was wrinkled from the dryness. The oil glands in his eyelids were also clogged. I treat his eyes every morning doing the following:

• Moist heat to his eyelids for 5 minutes to help clear the clogged oil glands

• Clean his eyelids with an eyelid cleaner

• Put drops in his eyes

I have been doing this for 2 years and it definitely helps. The ophthalmologist says his eyes are mush better.

This what Sebuly14 use:

- Optase Moist Heat Mask.

- Optase Eyelid Cleansing Wipes Preservative Free.

- Optase Dry Eye Intense Drops Preservative Free.”

• 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).

“pmcdonought” indicates that it may be a fungal problem: “There is an ointment that mights fungus that grows on the eye lash line. My husband had this and the doctor prescribed an ointment to treat the fungus. It worked great to keep the eye lashes from becoming stuck together. The doctor told me to have my husband close his eye and put a small amount on my clean finger and wipe it along the lash line.”

• 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)

I hope to be usefull.

Hug and luck.

Luis

[Beachut100 in reply to LuisRodicioRodicio]

Thank you for all this information LuisRodicioRodicio. You have been very kind

[Millidog]

Hi Vision issues can be common with PSP. ....its the Palsy element of Progressive Supra Nuclear Palsy. My husband suffers from blurred vision, double vision and both vertical and horizontal restricted gaze. This has progressed. He has been seen at the Eye Hospital after neurologist referral every few months. They test and monitor and have helped by prescribing firstly one eye patch to help with the double vision and then prism lens to add to his glasses prescription which have helped for a while. Last visit they identified his vision problems had increased but an increase in prism didn't help so advised sticking with the current 12 pt prism or none as his Eye sight can change minute by minute. Overall he can see distance better eg the tv but things close a newspaper, a meal are more difficult. At the opticians who has actually been wonderful one minute he can see, the next not as it is primarily the signal from the brain to the eye that's faulty not the eyes themselves. Sometimes patience helps eg if husband can't see i get him to take his glasses off fir few minutes and then put them back on or get him to close his eyes and then try again. Sometimes it works, sometimes not.

[easterncedar]

For my guy both the fixed gaze and loss of focusing control characteristic of PSP made seeing very complicated and hard for him, and he feared going blind. I thought also that his brain’s ability to process visual information was eventually compromised and that this sometimes seemed like a sort of flickering in his sight.