So, we went to see a neuro ophthalmologist last week. Mike was worried about not being able to see and we thought we might get some help. No such luck! We were there (Stanford Eye Clinic) for three hours. They did a full eye exam, vision checking, photos of the eyes and retina etc. finally the specialist came to the exam room and essentially said, nothing can be done. (Which I think we both knew) but gave us a full explanation about how the disease affects the muscle and also the message from the eye to the brain. Her suggestion to help eating was to use something to elevate the plate so that it was in Mikes line of vision and over the counter reading glasses to help him read.
The only positive I got was that she had a good knowledge of PSP and knew what was happening. So on we go... more books on tape, (don’t you love Audible)!
In a good note, his vision is good 😁
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Caro2132
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As well as audio tapes, CDs, I also turned the audio description on the TV. Came in handy for me as if I had to stop watching the TV to sort my husband out, We could both still hear what was going on.
I live in Los Angeles, CAlif. My son had double vision. The neuro-ophthamologist helped my son by prescribing prescription PRISM glasses and then again when his vision changed. In addition he also had a cataract removed from one eye.
As his eyes got worst and an increase in prescription could not help we stopped seeing the N.O.
"My eyes are closing by themselves". Sentence that my husband with PSP tells me many times a day. Has anyone experience/heard this from their loved one?
Goes to show how different PSP manifests itself. The PRESCRIPTION PRISM glasses helped my son immensely for about 28 months, but then as his eyes became unable to move, they were of no use. My son had barely turned 55 when he decided that he no longer wanted to fed (PEG)......peg was installed after his second bout of aspiration pneumonia.
Does he have prism glasses. It helps my husband a bit. The mirror didn't help. I don't think he could figure out how to look at it and eat at the same time. I do raise the plate and also purchased some dishes with a high side at one end since he seems to scoop everything towards him and then doesn't know it's there. Of course, I can just rotate his plate which isn't all that hard. Just one more thing.
Also, when we saw a neuroptimologist he suggested an eye patch so that he would only use one eye at a time to avoid the convergence issue. He also put tape over the bifocal of one eye to help with near vision.
Not sure yours is the same issue but thought I'd share.
BTW. If you live near Stanford there is a wonderful support group that meets occasionally in Menlo Park. If you don't know of it and are interested ding me back.
At dad's last ophthalmologist appt the doctor said there was basically nothing he could do. The left eye has a random "wandering" to it. It could be corrected if it was a constant thing but being random makes it much more difficult since any type of glasses would be wrong when his eye is in focus.
The pirate patch Kevin mentioned may be something that would work, I'll have to see if Dad wants to try it.
Good for you! Yes, we have to make adjustments. Charles read 130 books on tape!! From the Library of the Blind through the Library of Congress. They send the machine free and catalog of books.
We enjoyed listening to them together the last six months of his life.
If you need additional suggestions, let me know. I've been there.
Good morning, we used a small tray for him to better see his plate it helped for awhile we have to hand feed him now as his eyes are not good, such a dreaded disease. Nettie
Glad to hear his vision is perfect. My grandfather was diagnosed with PSP at the relatively young age of 55. The first symptoms were his inability to control his eye movements; the motion of the eyes was abnormal, followed by a distinct blurring of the vision. At first, we thought it had to do with anxiety, which causes regular twitching of the eyelids, rapid motion, and infrequent blinking. He reported it as annoying- "My eyes are messing around and it's causing a headache" and we had to take him to an ophthalmologist in Toronto skouraseyeandcosmetic.com/m... prior to diagnosis.
I am just 80, in UK and PSP diag 3 yrs ago. Double vision since accident 55yrs ago suddenly seemed worse > to optician (whose Dad had PSP ages ago). New prescription >> can now drive much more accurately! BUT he said "Your eyes are on the move ..... this prescription may be useless in 3 months time! Always expect the unexpected, and Please Stay Positive!! Timbow
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