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 Reading and eye problems 
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Joined: Sat Aug 11, 2007 8:46 am
Posts: 21
Post Reading and eye problems
My husband is not able to read. He can't distinguish the letters and keep his eyes moving. The neuological eye doctor said to get reading glasses and patch one side so that he uses only one eye. My husband has not tried very hard to read with the patch--he appears to have given up. This is a big problem as reading was his #1 hobby and we have hundreds of books. He seems lost without being able to read--yet, he has had little success when he tries.

Has anyone had any success in getting the eyes to work again? I'm afraid that he is not able to comprehend what the words say.

Sun Aug 12, 2007 8:52 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
I don't know if apathy and poor reading comprehension are problems in LBD. The disease my dad is diagnosed with is PSP, and there's LOADS of apathy. Comprehension is still there but those with PSP are often not able to read.

Visual dysfunction is a problem in PD and all atypical parkinsonism disorders, like LBD.

I'd encourage you to consider other avenues -- books on tape, the newspaper over the phone (though the computerized voice isn't very pleasant), hiring someone to come read, or asking family and friends to come read (as their caregiving activity for the week).

There are some PSPers in our local support group who have re-gained the ability to read books or a computer monitor by wearing a patch, wearing regular reading glasses, or wearing prism glasses. You might see a neuro-ophthalmologist who might be in a better position to offer advice.

Mon Aug 13, 2007 1:59 am

Joined: Thu Jan 18, 2007 11:38 pm
Posts: 65
My father (diagnosed with LBD in Oct 06) was also an avid reader and loved to work on his computer. In hindsight we realize that this was probably one of the more significant things to happen to him to tell us that things weren't right. He was always complaining that his computer didn't work - always sending it to the shop, same thing for his email. I finally realized that these things were fine he just couldn't read/interpret what he saw. Same thing for books - he always had a book open but I soon realized that he never finished it. He could read the books but didn't understand the words. He has this disconnet between what he reads and his brain. I'm sorry to say that he hasn't gotten it back.

Take care,

Mon Aug 13, 2007 7:45 am

Joined: Sat Aug 11, 2007 8:46 am
Posts: 21
Thank you for your input. We are trying everything. He used to read to me while I knit. Now I read to him--he just couldn't do it any longer. His eyes didn't work and he kept losing his place. Then he couldn't remember what he was reading when he began the sentence. His comprehension was down.

This was quite a shock to us. He has had PD for years--probably 20 as I look back (diagnosed 1998). Now they feel he has LBD, too. He has all the behavior symptons. He never felt the PD medicines did him any good, so he has always been on minimum amounts of any medication--like he takes nothing except a little L-Dopa. He does take Zoloft. He was off it for 3 months and he still had halluinations, but was agitated and couldn't sleep. Now he is happier and sleeping which makes all the difference for me, the caregiver. I can live with a few cats easier than him being up all night.

I don't think he can stay focused on TV. He used to like CSI, but now I notice that he can't follow it. I'm not sure if his eyes work for the TV and we have a 40" one (thanks to his brother).

It seems like we should forget about him reading and move into another phase. Good luck to all of you.

Mon Aug 13, 2007 8:12 am
We also had many vision issues also and my husband was finally prescribed Prizms and had them in both lenses and they did seem to help for awhile!
There is an excellent article entitled Dementia with Lewy bodies - A
"new" type of dementia with visual symptoms. It can be accessed
through our website at Click on the link LBD
Information and scroll down to the first article under Vision. This
may help explain your Husband's complaints about his vision and I'm
sure it will be helpful to his optometrist.

Mon Aug 13, 2007 12:28 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Jerome has had the reading issues as well. Between wet macular degeneration in both eyes and the LBD, all efforts to read have come to naught. We went to the Braille Institute and got great service from the low vision consultant. Also, we signed Jerome up for the Braille library of talking books and descriptive videos. They provided the special tape machine and headphones at no cost, and we borrowed several tapes from the thousands they had (including all the latest books). When finished with these we just drop them in the mail (free postage). We can call any time to request some be sent to us, and if one we want is not available locally, it will be sent to us by another Braille library. I was amazed at the library service and it is available to anyone with visual impairment. Contact your local Braille Institute or your state library system to get signed up. This service is completely paid for by the federal government.

Renata (and Jerome-in-Heaven)

Wed Aug 15, 2007 3:46 am

Joined: Mon Jun 18, 2007 7:53 am
Posts: 16
Location: Michigan
Vision problems and LBD have been one of the mail problems causing a huge distruption in our family. My husband has been to several different doctors, the last one was a neuro-opthmalogist at Michigan State Medical Hospital. He had a 6 hour exam. We left with "Sorry, can't help!" The doctor said, "he could get a new pair of glasses but in two days the eye problem will flutuate and the glasses will be worthless". They could not get prizms strong enough to help. Now I read to my husband, watching TV is very difficult and generally seeing anything correctly is impossible. This present a multitude of problems because he can't read, watch tv or movies, or do any hobby. We have an organization in Grand Rapids "The Sight Seers" which provie a free special radio monitor which picks up their radio station.. They have volunteers that read the daily paper and magazine articles. They publish a monthly listening guide at to which magazines are being read at certain times. We got a medical statement from the doctor to get the machine free. Also my sister who works at a tax preparer office, said to check with the eye doctor to see if the LBD patient can be classified as legally blind thus entitled to extra tax deduction come income tax time. But I know how upsetting it is. I even hate to take my husband to the store because he is always asking "What's this?" Every two minutes. And anything that is brightly colored he has to stop and touch. If anyone can give us any more help, I'm all ears (or eyes)> Thank you for being here to help us. Marji in Michigan

Wed Aug 15, 2007 10:11 pm

Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
I have firsthand experience with this problem. It is so terribly upsetting for me sometimes, because, like your husband, I have always been an avid reader. While at seminary I read for approximately three hours a day, and that didn't bother me. I love to read.

I don't know if my experience as a person with LBD is typical, but I'll try to explain my problem with reading. First, there is the matter of comprehension. Most times, like now, I am fine. But there are times that suddenly nothing makes sense. I read and re-read and re-re-read the same sentence. It makes no sense. I simply can't put it together. And it's strange because I don't "feel" confused. I "think" I'm thinking just fine. As a side note, my ability to comprehend other languages is even more impaired. Greek and Hebrew -- forget it.

Second is the visual problem. It is very frustrating. And I'm not sure I can adequately explain it. I see the letters, even English ones, and they look foreign. I know they are supposed to make sense, but I can't quite comprehend what the letters represent. They look twisted to to me, or warped, or, as I said, like foreign letters, like trying to read Cyrillic (the Russian alphabet). And again, it's frustrating because I "feel" normal in my own mind. I don't feel confused -- just frustrated, to the point of getting angry.

This disease robs you of everything you love. But as they say, thogh sorrow may come in the night, joy comes in the morning.


Thu Aug 16, 2007 11:51 pm
Profile YIM

Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
Below is an example of Cyrillic. I hope it copies over well. Now, suppose you knew that it was an English sentence, but couldn't dicipher it. That's how it feels sometimes.

Это будет пример как оно смотрит к мне.

Thu Aug 16, 2007 11:57 pm
Profile YIM
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