My Sister-in -Law Audrey was diagnosed with PSP in December 2011 But we are sure that she had been miss-diagnosed for at least 6 years when she was being treated for vertigo and other balance problems. During that period she had eye problems which opticians and the hospital eye department. were unable to solve and this resulted in her being unable to read at all, we now know that it was the PSP that was the problem.
Audrey's optician retired and her records were sent to another reccomended by them, Peter Marsen of 188 Church Road, Hove, Sussex BN3 2DJ.
Audrey and I visited Peter yesterday and we were both very impressed because he has experience of PSP and understood all of the problems that Audrey was experiencing. He gained the experience many years ago when his mother unfortunately died from the condition. As an optician he made it his business to know all he could about PSP so that he was able to do as much as possible for his mum, that experience he is now able to pass on to others.
He cannot promise that Audrey will be able to read again but he can improve her sight for eating and watching television and he can stop the double vision experienced by sufferers. If you are able to i would recommend a visit to him, the telephone number is 01273719012.
Good Luck to you all
Chris.
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nucj
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Most opthamolgisit will not see the aligments of PSP - the eyes look normal. If you cannot see this doctor a neuro-opthamologist is the best route to go
I guess we were lucky in that aspect because the eye problems were what clinched the diagnosis for my husband. The neurologist tested for up and down movement of the eyes when he moved my husband's head. Coupled with other tests to rule out anything else he very quickly let us know what we were up against. That was in July 2008. After along fight against the illness, he finally died 3 weeks ago.
He did watch TV, although the picture always appeared as double, he listened to audio books and his music. Audio books were lent out free from Kent Audio Books - this was a great service. Perhaps you have something like this in your area.
I believe the prism lenses are responsible for stopping the double vision and now we have the new specs Audrey is capable of reading but getting her to do most tasks is quite difficult, because of her situation it is difficult to motivate her.
It is so sad that so many professionals are not aware of the symptoms and that Audrey did not get the lenses earleir. Hopefully other people reading this will know what to push for, as sadly it is necessary sometimes to find things out for yourself and know what to ask for.
If Audrey is getting depressed it may be worthwhile finding a local paliative care Occupational Therapist who may be able to help.
Am also having problemswith my eyes. I will see my opthemologist on the 16th . I am going to ask about using an eyepatch rather than prism glasses since it seems like it helps to look with one eye rather than two.
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