Eye advice for PSP patients

[mthteach]

My guy has been looking up at the ceiling for the past 2-3 weeks. He was diagnosed in 2013. Does it normally come later in the sickness, and what can I do to help him. The eye doctor told me to use refresh over the counter medicine. How are some of the coping skills that will help me assist him through this. We go back to the neurologist in to weeks for another look at him.

[abirke]

This is one of the many characteristics of PSP. My husband too was diagnosed in 2013 and he has been losing his downward gaze since the beginning! I don't know much about the "stages" of PSP as I believe most patients have same symptoms at difft times. As well as loss of ability to look anywhere but upward, B became very sensitive to light and his eyes would tear up. Ironically, (I think) this is due to dry eye but may be mistaken. On CurePSP.org they have a pdf (that I don't know how to share with you) specific to eyesight....please go there for better answers than I have to give. I just discovered eye crutches. They are attached to rim of glasses so that the eyelid can be pulled open and yet patient can still blink! prism glasses and botox are other ways to counteract loss of eye and lid movement. B can still see, but only if things are presented to him in his field of view.

If you haven't yet , and I am sure you have, get everything that could cause him to fall out of his way.. I put bright tape on corner of walls and our washer and dryer (which is in bathroom). You may want to help him count steps from chair to wherever so he has a better idea where he is, Again My guy is not blind he just cannot move his eyes as well and his lids do stay closed more often than not,,,,,,I have no happy ending but I know mthteach, you already know that about PSP

Sending you and your guy a hug ,

AVB

[easterncedar in reply to abirke]

Eye crutches? I hadn't heard of those, must look into that. Good advice as ever, Mrs. Birke! Thanks. Ec

[abirke in reply to easterncedar]

I know , right? It's on the curpepsp.org site...I think...I checked a few places.....Sounds like a late night students invention! @-@

[mthteach in reply to abirke]

I looked up some of the info on Cure PSP for eyes. Has any of you had the botox. How long will it last? Is it worth looking into for him?

Mrs. Abirke thank you for the research info.

[abirke in reply to mthteach]

You are always welcome. I have had friends who've had botox for other medical reasons . They had to do it twice a year...and they aint cheap!

AVB

[mthteach in reply to abirke]

i wonder if BC/BS would pay for it since it is a medical problem.

[abirke in reply to mthteach]

BC/BS?

[mthteach in reply to abirke]

BC/BS is medical insurance company.

Blue Cross/ Blue Shield

[NannaB]

I echo everything AVB has said mthteach.

X

[Greenkerrycounty]

Eyes are my husband's biggest problem. He has all of the symptoms you have described above. I would love to hear from anyone who has had Botox? AVB, how did you find the eye crutches? This website gives me so many suggestions, and I appreciate you very much.

Maureen

[abirke in reply to Greenkerrycounty]

Oh Maureen, I just was telling ec I thought I saw it on curepsp.org...but maybe it was somewhere else....I am going to google eye crutches...I'll be back!

AVB

[abirke in reply to abirke]

Ok I googled them and yes they are real.....I do believe I found them under CurePSP.org...but you can go to google images and find them

AVB

[baird35 in reply to abirke]

Hi, I,m May and my husband has PSP and his eyes are closed an awful lot. Recently he had Botox injections through NHS. They seem to work and he can hold his eyes open for longer periods, although on "bad days " nothing works. Maybe worth asking your Gp to refer to eye specialist. Look out for next PSP newsletter, my husband has taken part in feature re Botox , Hope it helps, Ps we are going to contact a person who can fit Lundie Loops to plastic framed glasses. which seems to help prop the eyes open. Cost is £40 per eye . Will post findings to you all. Regards May

[abirke in reply to baird35]

Alright Baird, I knew there'd be someone out there with experience! Thank you for sharing!

AVB

[Tttp]

Good morning, my brother has the same problem, dry eyes, uses over the counter drops refresh , his eyes tear a lot, having difficulty looking down, has to have more Neil I think he has problems when he eats not being able to see his plate when he eats so raised it up for him a little better now. The neurologist and eye spec said its all because of PSP what a dreaded disease we are all dealing with. Nettie

[abirke in reply to Tttp]

You might ask about prism glasses which will put the lower field ie, table and plate into view for easier meal time success

AVB

[mthteach in reply to abirke]

Do you have to have a prescription for the prism glasses.

[abirke in reply to mthteach]

I am not sure...well you cannot get them from places that sell reading or sunglasses. frankly I don't thing you can get them from anyone but an ophthalmologist who specializes in such .

Hopefully someone else will have this answer!

AVB

PS I tried to get them and the dr refused to see B because of lack of good enough insurance

[terryswife in reply to mthteach]

If you contact pspassociation.org.uk they will send you a pair of prism glasses free of charge. Their advisors are very helpful

[Hidden in reply to mthteach]

No you can get them free from PSPA you just return them when you're done with them . Just look on their site.

[Tttp in reply to abirke]

Hi tried the prism glasses they did not help him, it's getting to the point that we have to help him eat now he has double vision, cataracts, glycoma, dry eyes. What a mess. Blessing. Nettie

[Greenkerrycounty]

We ordered prism glasses on Amazon. Many choices. Unfortunately, they are very difficult to get used to wearing

[Gracie_Girl]

My sister had prisms put in her glasses last year. They really didn't help her that much. She still sees double and her eyes don't move up or down. And the glasses were not cheap, she paid over $300 for hers. Ouch! Also, she uses eye drops called Miro drops. She says they help her dryness.

[abirke]

No good news about prism glasses.

[mthteach]

I am grateful for your replies. I would hate to pay for something and it not work. We are trying different things like putting food at a higher level on a tray. I am not sure if it is going to work, but worth a try. I have to sit with him every meal and help him eat. This disease takes away so much of their dignity.

[goldcap]

Mteach. It does doesn't it? My husband had impeccable table manners and before he was diagnosed it was alarming when he missed his mouth and crammed food in. I bought special utensils that had larger handles and would load and direct them towards his mouth. Now I mostly feed him myself. As long as he is still able to eat I do not mind. But they are proud. More importantly, is he still driving? My husband refused to relinquish his keys until he crossed the center divide and had a head on collision. A doctor once said when asked when they should give up driving said before they have an accident. Words of wisdom.

Take care Jayne

[mthteach in reply to goldcap]

goldcap, My husband has not driven a car in 4 years. I have had to use a blinder and blind everything he eats. He drinks it through a straw. He lost 75+ pounds when he was first diagnosed. Since then he has had a hard time eating. I put the glass of food at a higher level, and he can reach for it, but he is still having a hard time keeping the straw in his mouth without help. I wish he could still use silverware of any kind. Every now and then he will eat a soft cookie, his favorite, but it is his choice to have his meals ground up. Thank you for your advice. This is a new norm for us with this terrible disease.