My dad who lives in Istanbul has been suffering from PSP for 12 years. He was only 55 years old when he was diagnosed.
I and my sister have been doing lots of research with the hope that we find out about a treatment ine day however as you all know there isnt any yet. Anyway, we will always have a hope as you lose when you give up.
We have been looking to find things to get my dad’s life easier such as having a career, eyelid strips, vitamins etc. Now his eyesight got really bad. I have been trying to get a prism glasses however they do not have those in Turkey. I cant get one here in England without a prescription.
If anyone amongst us has those glasses but not using them I would like to buy them please.
Thanks in advance for your response and help.
Best regards
Asli Taylor
Asli.ozciger@gmail.com
Written by
Aslin
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Prism glasses are ordinary glasses (e.g. corrective lenses to suite the wearer) with a prism built in.
The prism is essentially a slight distortion to make the image reaching the eyes coincide. The amount of prismatic adjustment varies for each user and it can change over time.
So the only way to know what is needed is for an optician to do an eye test to see how much prism adjustment is required.
Could it be that your Dad is asking for the wrong thing? The term Prism correction (in Turkish of course) might mean more to the optician. Once they eye test has been done then he could perhaps order them online.
Having said all of that, lenses with prisms built in are not that sophisticated. I would be quite surprised if Turkey does not have the tech. It's been around at least 50 years. I might be wrong.
You would want to have him see a neuro ophthalmologist to have the correct glasses made. I just googled neuro ophthalmologist in Istanbul and got this:
I had Larry see a neuro ophthalmologist in Philadelphia PA and he said the prisms may or may not help his vision to be better. Some people can’t deal with them.
I don’t know I your father has a lot of tearing. For that an eye ointment that was 97% petroleum jelly and 3% mineral oil was recommended. That helps with the dry eye PSP people get.
I don’t know that much about prism glasses only what I was told at the time. A neuro ophthalmologist was who we were told to see. If an optician has the ability to make them it would be cheaper. Larry had seen an optician for years and when he told the guy about his eye complaints the optician was clueless.
Hi, I got prism glasses for my husband Mike, to help him see the food on his plate. But they made his eyes water and get so tired that he gave up. They weren’t prescription glasses since his vision itself doesn’t need adjustment. To help him eat, we put a mirror on the table in front of him so that he can look straight ahead at the mirror and see his plate.
There are two things here... prismatic corrections in ordinary glasses which help align the image between the eyes... Usually these are not noticeable to the casual observer.
And downward looking glasses using 45 degree prisms. Like in the picture. Often folk with PSP have difficulty looking down and these a proposed solution. Liz was offered a pair to try... She didn't get on with them... I tried them and found them somewhat disorientating.
Caroline's idea of a mirror sounds really good to me.
My grandson suggested it. I got a small tile sized mirror and place it on a cookbook stand on the table. It has to be the correct angle and distance, but it seems to help.
Hi Aslin, I lived in Los Angeles, California, USA. I am a 77 year old mom. My son's first symptoms (March 2014) was Double Vision, slurred speech, and Fatigue. Soon others appeared. He was first diagnosed with Parkinsonism and three years later with PSP. The Parkinsonism is the diagnosis until more time goes by so that a determination can be made on the specific neurological disorder. My son died May 4, 2017. He was 55 years old, just barely.
When one has PSP one can go to a general practitioner MD, but the majority go to a Neurologist. A Neurologist is an MD who specializes in neurological disorders, and generally, it is expected, is more knowledgeable about neurological conditions.
So it is, here in the United States, that if one has double vision, one first goes to an Neuro Ophthalmologist to determine the cause of the double vision. When it has been determined, or decided that no cause can be found, one is then referred to an optometrist who specializes in Double Vision (Diplopia). Please GOOGLE "double vision" to learn more. An ophthalmologist is an MD. An optometrist, who prescribes glasses, is NOT an MD.
The prism is to help bring the two images to one. The double vision (images) can be vertical or horizontal. There are many different strengths of prisms. My son first had prisms that were 10.00 BO. In addition, beside addressing the double vision the "acuity" also had to be addressed. Most people who need glasses need them for acuity, but those who have difficulty with acuity and also develop double vision, need glasses that will meet both needs.
I just looked at the prism glasses on Amazon. It states that they can be shipped to the UK but not to the United States. My son would not have been able to have used those. They would have been worthless. My son needed glasses for reading and for seeing distance. He had three pairs. One pair for reading, two for distance (one was sunglasses for outside).
As my son's eyes worsened, we had to get new prescriptions. I might mention that my son also had a cataract removed. I found one of his receipts for the glasses (Kaiser Permanente). This does not include the cost of the ophthalmologist only the cost of one pair of glasses. The date was July 1, 2016. The glasses took a month or more to arrive and cost $263. AS his double vision worsened it took longer to get new glasses and also the cost increased. In the United States we do NOT have universal health care as the UK and other countries.
As my son's vision changed so did the prescription. There are only a limited number of labs that can make prism glasses. Two different providers had to send his prescription to a lab in the Midwest. For my son and for me they were well worth the cost.
BTW, some people for their double vision, because of the cost of the glasses, wear a patch over one eye. This eliminates the need for prisms. Usually, this is done if your diplopia is caused by weak muscles and not by a neurological condition. But still, they work for both. Have you tried a patch on your dad?
I do NOT encourage you to get someone's else's used prism glassses. Either use a patch over the eye or get professional guidance regarding a prescription.
Hi Staff: Prism glasses are eyeglasses that have lenses adapted for the special difficulty of PSP/CBD patients who cannot move their eyes up or down. If you type Prism Glasses into the Search window on the upper right hand corner of the screen (when on a computer or laptop...not sure about phone) - you will find a number of post strings about prism glasses.
Thank you so much. Also if a patient is quite able to roll eyes up but not too much would he be classified as 'unable to roll eyes up' is there an extrnt to which we can measure this at all?
They are not prescription glasses, Aslin but you can have them. My husband did not use them. Where do you live? I will send them to you if you would like them.
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