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.
Eye advice for PSP patients: My guy has been... - PSP Association
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 ,
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
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
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!
PS I tried to get them and the dr refused to see B because of lack of good enough insurance
No you can get them free from PSPA you just return them when you're done with them . Just look on their site.
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.
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
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.