The NeuroOpthomolgist said something interesting about the eyes being our window to the brain. After the examination he noted my husbands eyes do not move down in a straight vertical way but rather they take a slow curved staggered trajectory south and they wiggle back and forth when they go up.
Then he said your husband's difficulties with bright lights especially florescent lights, flickering lights and oncoming headlights are a tell tale sign of photophobia.
He noted the eyelids squeezing close to shutting when reading and the tilting backwards of the head to help keep the eyelids open. This is Eyelid Apraxia.
Together these signs he said are not typically found in Parkinson or MSA or CBD, these are optical signs they find in PSP.
I told him my husband gets dizzy and he said yes the eyes are giving his brain slow information.
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gail66
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Sounds like you have a remarkably good doctor!! Hold on to him. Most don't know any of that and it takes a hunt from neurologist to neurologist to find someone who would even notice that and not say right away that it is Alzheimer's or Parkinson's, give you a prescription and see you in 6 months.
oh yes I agree about the neuro opthamologist being good. Do not want to go to any regular eye doctor. It is hard for my husb to judge distances when headlights are approaching our car. He is still early on in the progression but looking at things up close is difficult especially if he has to concentrate such as when he is trying to tie a fishing knot. His eyes do not converge correctly. One eye will move toward the nose and the other will move in then pop back outward.
I am not sure if a regular family doctor would even know what to look for in the eyes. Because the medical websites say the psp patient can not look down when in truth early on they can look down, but with slower limited range and the eyes do not move perfectly straight downward.
My husband sits in the dark when I am not around so I always have to turn on a light or two just so I can see. He can not sit too close to the TV because he doesn't handle the changes in screenshots well. If he sits back to the other side of the room it is better. He hates it if the volume is too high. He can't be in a room with two separate conversations going on - he claims it hurts his brain. Hmm..
I agree with Jill, hang on to that doctor! My husband has dizziness all the time, which causes his "drunken" quality to his walking and also the cause of his falls. He too cannot stand it when there is more than one conversation going on at a time, whether it's people in the room or people talking on TV, it doesn't matter. And he also prefers to sit in the dark. It's so frustrating when drs. don't really look at the patient, only what they don't see at the moment. So glad for you found a good dr.!
My father sees an opthamologist on a regular basis due to being diabetic and having PSP. On our first visit this doctor explained to us that dad can not look up or down and he does not blinking as often as he should due to his PSP, he instructed us to give him artificial tears to keep eyes luberacted and suggested he wear sun glasses when sunny. We are very happy with this doctor, Hope these suggestion help.
And yet more evidence of the individual nature of PSP symptoms. Chris has to have lights on in the house all of the time. When I get up in the morning and find all the lights on I know he has been up in the night. Yet he wears sunglasses outside all the time (winter and summer) because he can't take the light. He is now approaching five years since first symptoms and can only see directly ahead, can no longer read a book (we have both been major readers all our lives so this is especially sad for him) and due to neck stiffness he has great problems turning his head to look from side to side. He will not entertain audio books and his only solace now is watching DVDs. Ironically I have a hearing loss in one ear (burst eardrum many years ago) so am the one with issues over sound - he doesn't seem to mind volume or confusion in sound. We plod on...........
Here is a story from yesterday. I am watching my husband as he is standing at the sink. (we are fortunate he can still do this). He is doing the dishes in poor lighting and his focus is straight out the window. He never looks down into the sink. He also dries the dishes and leaves them on the counter next to where he is. This is great as I am glad he is still able to help. I am glad for him and glad for me. I go over to put the dishes away and I try and add some lighting he tells me not to turn on more lights as it hurts his brain. I look at the dishes and they are still dirty as he is not looking down while washing. Looking down effects his balance. He doesn't put the dishes away because he does not want to swing his vision back and forth but instead he wants to keep his vision straight ahead.
I do not mind the dishes are dirty. I am glad he can still stand up. Bless us.
But this story illustrates how the eyes and the brain are not on the same page.
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