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vision changes and sun downing
Posted: Wednesday, September 19, 2018 5:18 PM
Joined: 9/12/2013
Posts: 3608

Visual changes were the reason I was finally diagnosed with ALZ. I had a shrunken peripheral field so everything looked like it was coming at me, esp in the car.

Recently I have found myself having difficulty seeing in late afternoon and I consider the difficulty to be equivalent to loss of night vision. I recall cgvr advice about turning on lamps in evening because "ALZ people seem to like that" or it helps with the "sundowning". 

Maybe they like the lamps on because their vision dims, because it is easier to see. Maybe being awake and wanting to move about normally is disconcerting because the part of the brain or visual feedback loop is disturbed like when you go out at night and have lost your night vision. 

I read an article recently about a man who had his wife at the county fair on a leash, a collar around her neck. He explained he had to yank her because she has dementia, which seemed to get him some understanding from the crowd after they saw him almost pull her off her feet with a yank.

Just saying, we who are able to figure out some of these things ought to share because most of us will have to invent our own care scenarios. 

If you find yourself tripping, stepping off curbs, even "seeing things" - it may be your vision. It may have a cause. It may have solutions.

Believe in yourself. Love and Courage

Posted: Wednesday, September 19, 2018 8:40 PM
Joined: 12/4/2011
Posts: 20398

Please get an appt with an ophthalmologist....could be cataracts or a simple change in vision.
Posted: Friday, September 21, 2018 3:10 AM
Joined: 9/12/2013
Posts: 3608

jfkoc - had eye exam 2 months ago. Not eye problem. I lost night vision maybe 10 years ago, profoundly. 

maybe my ideas are useless - I am trying to help myself and others by studying the illness and looking for ways to make it not so terrifying or exasperating.

I am very uncomfortable with being treated like town dunce, feeble minded - that sort of thing. Labeling "behavior" instead of understanding the metaphor.

someone please tell me if my posts are useless, pointmless or offensive?

Posted: Friday, September 21, 2018 10:46 AM
Joined: 3/11/2018
Posts: 546


I haven't read all your posts but I have never seen anything that is offensive. Also I think jfkoc is just offering a suggestion. I'm sure your posts are helpful to many! 

I do not have Alz (although my grandfather did and mother does, so Alz may be in my future), however I am partially night blind. At 16 when testing for my driver's license I failed the night blindness test. Some of us have more cones than rods, so I guess the trade off is that I see more color than most people but have more difficulty with night blindness, especially driving. I find I can see better when I have a light on in the car to let more light to my eyes. So I certainly understand lighting the house up in the evenings and have read that closing the window curtains/blinds to the darkness and adding more inside light helps people with Alz see better and process that it is dark but not time to go to sleep yet and alleviate sun downing confusion as much as possible. Especially as these days are getting shorter!  

Posted: Saturday, September 22, 2018 8:26 AM
Joined: 5/20/2014
Posts: 4408

NEVER are you're posts useless! 

New people coming to the board need to know about vision changes related to the brain only that have nothing to with any actual disease process of the eyes. Yes, persons need to see an ophthalmologist to rule out eye disease or visual impairments but for many like you and I it will be brain related and not visual. It was you Alz+ who helped me to understand what was happening with my vision.

Everyone needs to understand how the brain impacts ALL bodily systems. 

Posted: Sunday, September 23, 2018 10:13 AM
Joined: 9/12/2013
Posts: 3608

JFKOC has been helping me and hundreds others since I joined. She knows the CGvr side of things and is always cheering us on.

I asked if my ideas were helpful because I find myself saying/doing things that would seem odd-ball or spoken with errors in words that put people off in any interaction now and am becoming less - friendly? with people at pool or who I pass while walking dog. I  used to speak to anyone and people have told me stories about thier lives since I  was a child! Not anymore.

Also I am reacting to what seems like (emphasis SEEMS as I no longer can tell) a loss of comradery on boards which could be because I am not here as frequently as I  once was because  it is so much harder for me to make sense in verbal world.


Maybe I did not make clear, the visual changes I was experiencing for years, which led to lots of other problems for years, was not with my eyes but the way visual info is processed in brain, which I think L lee made clear in her reply.


Expresso time -  I did not know that about night vision loss. It seems like the afternoon retreat and lower function is related to time of day and/or sunlight hours shortening and if it were similar to night vision loss I thought it might help diagnosing brain malfunction.

Most of my signs of ALZ began 20 years ago and none in themselves gave neurologists enough info to make a diagnosis. I was told MS for 8 years and always that I was middle aged woman so likely nut case.

I am still noticing almost no response to postings from me and most others. Also when Iris does not respond to me the boards "are almost empty".

Love and appreciate JFKOC and many others here who have stepped in and voiced concerns from a CGVR perspective since I joined boards. I now wonder if my writing comes across as snippy or other than I intend. I am not putting as much editing effort into posts cause it does not seem to help.

some days I feel like I a trying to inflate a flat tire by blowing into a tire stem - pointless but exhausting. 

also I am not funny anymore.

love and courage

Posted: Sunday, September 23, 2018 11:35 AM
Joined: 12/4/2011
Posts: 20398

the help is mutual!
Posted: Sunday, September 23, 2018 3:24 PM
Joined: 6/13/2016
Posts: 43

Hello, alz+,

I always enjoy your posts -- what insight you have and what interesting observations you make!

I am a CG for my DH. I think you have helped me understand this disease a little bit, and actually be less afraid of it, and I thank you for that. 


Posted: Sunday, September 23, 2018 5:33 PM
Joined: 4/22/2017
Posts: 334

Jfkoc beat me to it and her post didn't seem to go over well so I thought it best not to respond. But perhaps I was wrong. So here goes...

My sibling and I thought that all of my parent's hallucinations were a result of dementia and consistent with acting out while asleep. We thought wrong. After my parent's cataract surgery, it was determined that wet macular degeneration had destroyed the central vision of one eye and was about to completely destroy the other. Said parent had previously mentioned seeing shadowy figures and even bugs crawling across a computer monitor screen. Thankfully, monthly eye injections preserved most of the sight in the remaining eye. Delusions continued, but there was no more talk about seeing shadowy figures and bugs. Lesson learned.

Edited to add: The above happened way before I joined this board. But, because of Alz+s posts I was motivated to learn a little more after I had experienced a few visual anomalies of my own. Just a few, though! LOL



Posted: Monday, September 24, 2018 7:11 AM
Joined: 4/2/2015
Posts: 45

alz - you know I always enjoy your posts and learn so much from them.  

I myself just this past week had my eye exam but for the reason that I lost my glasses.  However your post made me research further the peripheral vision problems I've been having, so thank you for kickstarting a topic I needed to read.

Now about that article about a man putting a leash and collar on his wife's neck and then nearly jerking her down is horrifying.  I understand wandering is a problem but by golly put it around her waist, she's not a freaking dog.  If you went to Disney World and saw it on a child it would be reported as child abuse.   

That may be the point that I became very combative.  

Hope that a good day is had by all.


Edited to add:  

alz -  I know you were just relaying an article you read and not that you agreed with the man's actions.   My words were not meant to you but about a situation that was totally unnecessary.

 I too hope I am not offensive to this board.

Iris L.
Posted: Tuesday, September 25, 2018 4:23 PM
Joined: 12/15/2011
Posts: 17709

Alz+, keep posting!  You have much to offer, and I have learned so much from you!

I have not been posting much lately due to a personal computer problem.  In fact, I am posting in class now on a public computer.  I don't even have time to read all the posts.  

I have trouble seeing at night too.  I have regular eye exams.  We have to do whatever we can to keep going.

Iris L.

Posted: Wednesday, September 26, 2018 7:11 AM
Joined: 5/20/2014
Posts: 4408

Did I say something wrong? A co-worker and friend recently told me I was "terse" with her. I agreed with her that I may have been terse w/o an explanation. I think it may be that I am compensating out of fear that I'll bumble my words due to experiencing aphasia.  Perhaps I've become too direct and to the point these days? 


I'm sorry, if my post seemed harsh or offensive in any way. I greatly value your participation on our board.

Also appreciate being gently nudged and having this brought to my attention. Thank you!

Posted: Wednesday, September 26, 2018 9:44 AM
Joined: 12/4/2011
Posts: 20398

llee...I did not pick up on anything harsh or offensive but thanks for the concern