CBD Diaries: Eyesight

My father J has just told my mother and me that he is starting to have problems with his eyes. Apparently while reading or playing games on his Ipad his eyes want to cross and then the letters get all scrambled.

Has anyone else had their loved one experience eye problems and if so is this start to anything else significant? Is there anything that can help?

He was diagnosed in Feb 2010 but his symptoms started as early as 2005 we believe. This is the first that his eye's have given him problems that he has shared with us.

Thanks
H
J's Daughter

H, I am sure others know more than me about this but I can say that my Mom
stopped reading and I couldn't be sure, eventually, what she could really see. 
We took her to an eye doctor a few times between her diagnosis and death and she
was never satisfied with the new pair of glasses.  In the last year of her life
she didn't have a doctor who ever saw a case of PSP or CBD so I can't say what
was a part of the condition and maybe another eye situation.

My mom has not been able to move her eyes up and down for quite some time now. She is beginning to have trouble moving them left and right. She is beginning to stare fixedly and doesn't blink as much as she used to, either.

Hi,
Yes, my wife has had focusing issues for well over a year, or so. One has
to get her attention by directly getting in her face, so to speak. But,
since she basically cannot speak, one has to read her expressions. Anyway,
that's we communicate.

K & J

My husband J, dx 2010 symptoms since at least 2007... Is now legally blind because of loss of all peripheral vision... This loss of vision was very puzzling to the Opthamologist as his straight on vision is perfect... they did some field vision tests to determine how much loss, and there was so much they were shocked. His eyes are perfect, no cataracts, no glaucoma, they move fine! He has been unable to read for sometime now because his eyes won't stay on track to follow the lines. I have not seen other reports of vision peripheral problems on here, but I may have missed them.
J

It might not be a focus issue, it could be her peripheral vision and she can only see you if you are directly in front of her. I know this is what has happened with J, fortunately he has not lost his speech, and we realize now this vision problem was a symptom a couple of years ago, before the dx I noticed he was driving and couldn't stay within the lines..... Well he couldn't see them on the side...the Opthomologist told him his vision hadn't changed....I said WHAT!!!!! So after a couple of months of this they did the field vision test and ...... Legally blind! This disease is so outrageous you just keep hitting brick walls! He is still able to tell us what is happening to his body. We had an episode that really bothered him recently... We were getting his power chair and it was like he wasn't there, no one talked with him, it was all directed to me, we have an attendant control on the chair so no one asked him His opinion.... I actually did not notice it so much as I was busy trying to operate the chair, but he did and it really bothered him. I know people don't do it to be cruel, they just don't always think. I think I am guilty of it at times because I answer for him sometimes. It is all hard to wrap your head around sometimes and I guess I don't always think before I speak!

J

My wife is just starting this process. Our eye doctor sent us to see a specialist who said her vision hasn't changed. After several visits and changing her prescription he sent her to another specialist he said her vision is still the same but another doctor that was visiting him noticed that her field of vision has changed so next month they are doing the test. She can still walk with a walker but falls backward a lot and can still talk not well but I can still understand her. She was diagnosed 2007 with CBDG but I think it is more PSP or Picks.

I also noticed that the doctors ask me questions instead of directing the question to my wife. I never noticed it until you mentioned it. It has become common place for me to speak for her. I will step back and let her speak as long as she can.

Thanks every one for the post it will help me with dealing with the eye doctors. None of them have dealt with this.

My husband was not able to read for about the last 18 months of his life - he had been an avid reader. Our optometrist said his vision was 20/20 - so something in his brain was causing the problem.

E

Yes, I agree, it's a brain thing with the vision issue I mentioned earlier.

K & J

Jim's Dr.'s all agree it is a brain, not an eye issue, the same as his inability to dress himself, his arms and legs move but his brain does not send the message to them, or how to align the shirt or pants to get them on.

J

Heather, I am glad you posted this. Robin thought I might be able to share my experience. I am a patient with a Parkinson's Plus syndrome and it includes an eye movement issue. My eyes lose their ability to move together when trying to follow an object. When the Neurologist or Ophthalmologist test me by having me follow/track as they move a pen light back and forth, and up and down in front of my eyes, one eye stops and jumps back while the other continues to track. Also, one will go up and in the corner of my eye, getting stuck or hung up. This happens with both eyes, at different times, and it is a brain dysfunction, not an eye condition. The part of my brain that controls motor functions of the eyes has been altered due to neuro-degeneration. This causes my eyes to hurt and I notice I have trouble focusing on the TV or the speaker at the front in church. I see double when this happens. The big problem is the eye pain this causes. Also, watch for sensitivity to light-- try to prevent this by not having the blinds open in the afternoon when the sun is flooding in- very painful. The other thing my eyes do-- is voluntarily close when I am concentrating on something I am thinking about, and they squeeze tightly shut... embarrassing in a party or at a church meeting. The big thing is find out if your dad needs corrective lenses or has eye pain and what can be done. Finally, I wear protective sunglasses/covers that go over my prescription glasses. They block out light in the front and on the sides, too. These are only $20 at the drug store. I hope hearing this from a patient is helpful to you. I am available to give my humble patient opinion anytime. Thanks and Take care, Dan

Perhaps I worded this wrong. I did not mean that the problem in the brain that makes my husband unable to dress himself was the same problem that causes his eyes to think he has no peripheral vision, I assume they are different areas for different functions. Sorry if I sounded like that.

Another issue that my husband had with his eyes was that they became sensitive to light.
His daughter sent him a pair of "Cocoons" sunglasses that fit over his prescription glasses and they were great and didn't look too odd, almost kool.
Be sure to take care of your self and be patient with your self, this disease takes its' toll on us too.
Betty

Heather, It means a lot that I am able to share my personal experience as a patient. I feel compassion for others in my situation, and also for caregivers who are stunned by the suffering of those they love. Each case seems to be different and there is a lot of overlap between the various atypical Parkinsonian disorders. Please feel free to ask me any questions and I will do my best to give my humble opinion. I appreciate your reply and the "blessing." I offer the same in return. Take care, Dan

When mom's eyes got bad she said it made her nervous to read, she wouldn't even stay on the computer that long..and she also was never pleased with any glasses that we got, they would be good for a few days, but then she put them down.

Thank you all for your coments and advice.
I am sure its just another step in the decline of the illness, I have noticed some other areas of decline lately as well. I pray that for him he will be able to continue to read for a while yet as it is one thing he still enjoys.

Thanks again,
May God bless you and your loved ones.
Heather

Dan,
Thanks for your insight, it does help to hear from people with these types of diseases as my father holds a lot in I think and it helps me to understand what he may be feeling or thinking. I continue to open up conversations with him and hope that if he needs to talk about any of it that he will. Please keep in touch and take care.

My dad does where corrective lenses for close up, I believe they are bi-focals. He experiences a lot of watery eyes as well. I will talk to him some more and see if he has any pain or if the light seems to make worse.
May God Bless You.
Heather

You are a wonderful loving supportive husband. Your wife is lucky to have you as her caregiver, spouse, lover, and friend. Thank you so much for supporting her to do all that she can. You are not the only spouse that deserves huge hugs and recognition for what you do. All of the spouses and loved ones who stand by and encourage and respect those who are so strong to manage these conditions are super heroes in my mind. I have a good friend Rene Bondi. If you can, go to her website. Renee was 27 years old and engaged to be married to Mike. On the night he presented her engagement ring, finally paying it off, she dove from her bed in her sleep. She broke her neck and was paralyzed from the neck down. Their wedding was postponed and after surviving and intensive PT Mike stayed by her side and married Renee. Years later she was the first ever quadriplegic to deliver a baby naturally. Renee has the most beautiful voice God has ever given to anyone. Her friends came by daily and laid rocks on her vocal chords. At first she could not speak. But their efforts made them strong. I think God only wanted her to sing. That is what she can do without assistance. Encourage your loved ones to do all that they can. And I recommend going to Renee's website. Buy her CD or book. Her book is a touching love story of Mike the caregiver who still married her before he even committed to "for better or worse". In the last chapter if her book Renee talks about how it feels when people talk to her caregiver, husband, or now teenage son instead of her. I will never forget her words. What a great reminder to respect the capabilities iof every person.

If anyone in this group goes to Renee's site and would find strength, encouragement, entertainment, or faith from her songs or to read her book just send me your address. If you can't afford her music or book I will gladly send whatever to you. I did not mean to pitch her products. Your words reminded me of what she told me in the past. I don't want any of you to feel another burden. I know her songs and story offer hope, faith, and a reminder of God's love. If that helps you, please let me know. I will send the music or book to you. Julie