I am new here. My husband was diagnosed with Alz 3 years ago at age 59. He is now having lots of trouble with double vision. I am afraid he is losing his vision as his neurologist said it is probably caused by the Alz plaque in that area of his brain. Is there anyone else out there with their spouse having vision problems from Alz? I'm afraid he will lose his vision and of course he can't remember anything so really will be lost.
Welcome to my website. You will find a lot of information and support here. Please be sure to look at all of the resources on the home page of the website - www.thealzheimerspouse.com. "Help for the Newly Diagnosed/New to this website"; "Understanding the Dementia Experience"; "EOAD (early onset Alzhiemer's Disease"; and "previous blogs", all on the left side of the website are good places to start.
As to your question about vision, I found a very interesting article on Alzheimer's Disease and vision. Copy and paste this link for the article - http://www.pslgroup.com/dg/eedea.htm
My husband has had some problems with his vision, but he also has aphysia (can't talk to tell the doctor what he can and can't see). Have you gone to an opthamologist? I would call those doctors in your town and ask them if they are experienced in Alzheimer's patients. Maybe they will be able to help him sustain his vision. I have to place drops in my husband's eyes daily to help him keep his vision. I hope this will help you as well.
"Vision" problems are fairly common in AD patients. The eyes actually function quite well -- but the brain does not interpret the signal properly. This is called "visual agnosia." In most AD patients, short-term memory loss is the first symptom. In some, visual agnosia is the first symptom, and this is called "visual variant AD." Once my husband was finally diagnosed with AD and I started thinking back on his behavior, I realized that visual agnosia was the first symptom that I noticed -- I just didn't realize what it was. That would have been perhaps 2001 or so.
He still has pretty good eyesight, even with pretty major cataracts. When he watches CNN, rather than watch the picture, he reads the ticker tape across the bottom of the screen...
Vision may be impaired in AD patients in many different ways, and there are several different subtypes of visual agnosia. In the most common subtype, the patient may be able to see an item, but not recognize what it is, or be able to tell where it is in space. Another symptom is the development of "tunnel vision"; often, the ADLO will begin to walk behind the caregiver, since it is hard to see the caregiver when walking side-by-side. ADLOs may also have trouble understanding contrasting colors; this often manifests itself in the ADLO refusing to step onto a dark rug (maybe a throw rug in front of a door) because it appears to be a deep hole. Some AD patients may wander and become lost, not because they are confused, but because they have "motion blindness", a condition caused by damage to one part of the brain, in which they cannot interpret radiating patterns of visual motion. We usually believe that an ADLO who does not recognize someone cannot "remember" who that person is; however, the ADLO may have damage to the brain that makes the patient unable to discriminate faces.
Visual agnosia can develop at any point in the progression of the disease. Symptoms can come and go. And it can sometimes be very hard to figure out whether it's the vision that's compromised, or some part of cognitive functioning.
Anyway, I haven't seen anything about visual agnosia leading to blindness. I'll do a bit more poking around, though.
(If it makes you feel more comfortable, I have had problems with double vision when my eyes are tired since I was in third grade. And the general consensus of opinion is that my eyes are fine, it's my brain that stops processing the signals properly.)
Thanks so much for the info. It is somewhat confusing that I find it better to have vision problems because of the AD, not just vision problems for an unknown reason. This is all so new even tho it has been going on for 3 years. The other evening we were at our son's house and my husband would not step on to the porch. He said it was too far down. We did eventually get him out but it took holding both his hands and talking while walking so he would look at me instead of looking down. It sounds like what you said about an ADLO not stepping on a dark rug. I'm glad to have found this site, others like me.
My husband has the visual/depth perception problem. Getting into a pool, getting into the shower, pulling out one chair at the table but sitting in the other one, taking my fork instead of his.
Yesterday my husband was eating a soup bowl for lunch. One of those oriental things with noodles in it. I had given him a fork and a spoon. I suggested he try the fork for the noodles. He couldn't find the fork even when he put the spoon down right next to it.
This is not the first time he has had visual agnosia, but it is the worst version of it I've seen so far.
Danise, I spent a couple of hours trying to find anything that suggested that AD could cause true blindness ... nothing.
It's not at all confusing that you wanted to know that the AD itself could cause vision problems ... because if it didn't, then that would mean you're facing another disease of some sort. And we sure don't need any additional diseases on top of AD!
You are all a wealth of knowledge, My husband had problems getting into and out of our boat last summer and fell often on the dock. I am wondering now if it is the vision problem. His balance has been off as well. He has been having problems finding things (like peanut butter) when it is right in front of him. I laughed it off but I guess maybe it is all tied together.
Welcome Danise :) My husband has double vision from an accident way before AD entered out lives. But his depth perception is now shot. Keep posting, as you can see we have some smart cookies here.
Danise, my DH had double vision that lasted for months. His eyes were thoroughly checked and no cause was found. He hadn't been diagnosed with AD at the time but was having memory problems and I think, now, that the vision problems were AD related. His eye doctor said he thought it would just go away on it's own and it did.
Thanks Sunshyne. I found it!! My husband was diagnosed with Progressive Posterior Cortical Degeneration about 2 years ago but when we went to Mayo clinic last August we were told it was Alzheimers just located in a different location first. We were told that eventually most of the brain is affected but usually it starts at the front of the brain for most people. My husband has some of the same symptoms - he can no longer read and hasn't in a couple years as the words run together. I think this blindness has made the disease progress faster - (my opinion). He urinates on the floor if I don't catch him and lead him to the toilet although sometimes he makes it to the toilet by himself. He has had balance problems all along. Several years ago we went to an optometrist who recognized the problem as his eyes were good and sent us to a neuroophthalmologist. He also has problems with curbs and stepping down going out the door. He is afraid of stairs and we avoid them if we can. I finally found some people who understand what my husband has. Even in support group, no one has this problem. Thank you. Susan
Isn't there an association between some kinds of cataracts and Alzheimer's Disease. At our last check up, the Neurologist noticed my DH has developed cataracts and suggested we see an opthomalogist.
Need to make that appointment. Keeps slipping my mind.
My Dh had his appointment with the ophthamologist last year and new glasses were ordered. Also found were the very start of cataracts. Dr. said probably need to do something about them in 10 years or so.<snicker> DH had been useing bifocals just fine, but when he got new ones, he was seeing double. Had thgem and him checked out and the rfraction was adjusted. At first the new new ones were okay, then double vision. He put them away. Now, just like with his hearing aid, they're put away until he gets a bee in hisear to use them. It lasts a few hours or days and then they're put away again. He does fin woithout them.
THANKS Sunshyne ....... you've touched on a number of areas of this disease I've been observing in my husband lately - some seem to be progressing more rapidly than others - i.e the loss of vision for whatever reason(s).
I've know for some time now that he does have cataracts but they are not *ripe* yet so have not been removed. We do have a followup appt. with the opthamologist this coming Thursday so it will be interesting to see what comes of that as my husband is much less able to verbalize now than he was 6 months ago.
I don't think he understands what the questions are and just answers whatever he thinks the asker would like to hear and I'm thinking that is very dangerous at best - I just don't know quite what to do about this issue now.
My husband has always been very compliant, very easy going and always one who wanted to please and I think, that although life with him has been a joy, this ready compliancy could now be detrimental to him personally ........ any suggestion on what to do Sunshyne, Marsh or anyone else who could offer some input ?
My wife also has cataracts. She wears her glasses sometimes, but generally says she doesn't need them. I don't see how her optometrist will be able to get a good reading of her vision if she has to decide which is better "A" or "B". As for the cataracts, I wonder if she would tolerate the surgery and post-op care. I plan to discuss this with her PCP next week. I have the same problem with her hearing. She definitely needs a hearing aid, but after she chewed up the last one, I decided not to get another. She resisted wearing it.
Hi Marsh..it's me again! (Nancy)...I swear you are talking about DH. Only! He didn't chew up his hearing aid, he stuck it so far up his nostril we almost had to take him to the Emergency Room to have it removed. (He had one other option as to where to put it..other than in his ears!!)
I believe the eye exam is conducted much the same way as they check the eyes of little children. (don't ask me exactly how they do that, but they have a way of checking eyes without asking questions..??)
Back to the hearing aids. We've lost them so much the insurance no longer covers them. (I think we get 3 replacements???).. And, currently they are lost again. The kind he had were the tiny little ones (red/blue) that fit far back into his ears. Cost was near $6,000 for the pair. I'm wondering if I should get them replaced or let it go. He's about stage 6-7 and watches TV off and on. I've found them in the waste basket, car pocket, beneath the bed and on the floor of his closest (fell out of a pocket). This time, they are lost, lost, lost! Probably went into the trash before I knew they were missing.
I feel guilty about not replacing them....but the expense is a major concern.
Tolerating the surgery and post-op care is exactly what disturbs me Marsh. R is in need of inguinal hernia surgery and is on a waiting list for same ....... I'm just so unsure of subjecting our LOs to any surgeries of any sort unless it means they would die prematurely without it ...... wish there were a concrete answer to our questions instead of just opinions ........ guess I'm asking for the impossible eh?
The problem with not replacing hearing aids, or getting glasses checked, is that our LO's then have lost another contact with reality. However, when they are in stage 6-7, they are in their own reality, so losing contact with ours is not such a big deal. So far, if I talk loud enough, DW can hear me. She always says "what" to anything I say, but if I don't answer, she will come up with what I really said. This reminds me of a joke I'll put over in the Giggles and Jokes thread.
I believe DH says "what" whether he hears me or not. I try to remember to say (when it is important) ...Honey, Listen to me, I have to tell you something..." so I don't have to repeat the entire thing. I agree, he needs to hear...but I wonder if I can't get less expensive (but good) hearing aids. These little red ones look like red cough drops..and I think that's why he throws them in the trash.
My dh has never had hearing aids because his hearing problem is in a high pitch not helped by the aids. He would never be able to keep track of them if he did. He has his glasses and shaver lost most of the time.
I don't know about cataract surgery for AZ patients, but I had one removed in Dec. the other in Jan. Piece of cake. Only light anesthesia--not general. I knew what was happening all the time. No pain. Follow-up might be tricky depending on patient. Drops in eyes (before & after surgery) and a night-time eye-guard so I wouldn't unconsciously rub my eyes for about 3 nights. No lifting more than 25# or bending for a few days.
Anything that they aren't supposed to do will be a problem. I know for a fact he would not remember the bending over instruction. As for wearing a night guard, he'd have to have it taped in place. I just don't know. Has anyone else had a Stage 6+ spouse undergo cataract surgery.
My husband has closed-angle glaucoma (had laser iridotomy in both eyes) and we see his ophthalmologist every 3-4 months to make sure he's not getting into trouble again. She says there is no "down side" to not having the surgery done -- i.e., failing to have surgery will not cause the cataracts to worsen or become inoperable. Some patients adjust quite well to cataracts. My husband seems to be one of those, because when he CAN interpret what he's seeing, he can read fairly fine print (when we watch CNN news, he reads that ticker tape they run across the bottom of the screen) ... and one day, he asked me to come tell him what was on the floor, and it turned out to be a half-dozen tiny ants that I had trouble locating. Under those circumstances, she doesn't see any point in undergoing surgery.
So we're not going to have the surgery unless and until the cataracts start interfering with his activities.
And I agree with Nancy, my husband won't remember the not bending over rule for two seconds. We've been through that every time he has surgery for his skin cancer. As for keeping a night guard in place ... he had a plastic cap sewn onto his nose when he had a tumor removed there -- the cap was to put pressure on a skin graft to help it "take" -- and he ripped it off during the night. (Eeewwww) Plus there's no doubt in my mind he'd rub his eyes, consciously, during the day.
My stage 4 hubby had cataract surgery last week.Turned out to be easier than I thought it would be.Doctor said it would not hurt him to bend over right after surgery.Could only lift no more than 10 lbs.Drops in eye for a week and well as wearing shield at bed time.Guess all of this depends on the doctor.Now after just one week he can do anything--no restrictions.
Pompanosusan, My husband has Posterior Cortical Atrophy, and you're right, there aren't many out there. His neurologist said that some doctors say it is a variant of alz. and others say it is a different thing altogether. She tends to view it as a separate entity entirely but put him on Aricept because there was nothing else on the market. The only info I have found is the Mayo Clinic and an article on Orpha that tells a little more about it. My husband has major problems with his eyes. Strangely enough, he told his doctor that when there was a lot of noise he couldn't see as well......she said she understood completely. His brain is being assualted with too much, sound and vision, and he can't handle all of it. I'm sorry you have to be here, but I'm glad you found this group.
We have a close friend in Charleston who developed mental changes in his mid to late 50's and after he reached the stage of aggression, not wanting to get up in the morning and go to work, (wife had to dress him from head to toe), ...and eventually, his eyesight began to deteriorate. She said she was "up to here" with his behavior but, like all of us, stuck it out. He had no choice but to take early retirement. After retirement, they moved from their home in Wilmington Delaware to Charleston. He went to a doctor at the Medical School of Charleston. (to get established, have his records forwarded, etc.)....and lo! and behold! ...the new doctor ran tests and found a small tumor in his brain. They removed it, his eyesight returned as did his 'old self'. No one could believe the earlier specialists had not seen the tumor. They have loved their lives in Charleston and he's become quite a golfer. Who would have believed their story would have turned out like this... Another, "if only"......
Thank you for your comment. You are the only one I have found who has the same problem as we do. Mayo Clinic finally did diagnose him with Alzheimers although his neurologist wouldn't. He is on Aricept and has been for probably two years but does nothing. He is slowly going downhill. He is not dealing with reality anymore and this has happened just in last few months it seems. My husband jumps at loud noises. I understand what you mean. He has real problems with depth perception. He even has problems with getting seated as he can't seem to get close enough (I think he thinks he is too close). He starts trying to sit when he is 2 feet or more from the seat and getting in the car is terrible. Do you feel he is getting more confused or how long has it been?
Hi Nancy, yes, if only. My husband has been tested for all of that and as much as I would love it, he has no tumors.
I asked my husband's doctor about his depth perception problems. He has a huge problem with this. Doctor said there was no way they could actually TEST depth perception on a scale, but he agreed he had the problem. Bak in the beginning, I would hate it when he'd hand me something and make me reach out to get it (sometimes even having to raise up from my chair to reach it). Then I realized it was not deliberate. (Learning to accept these changes or recognize they were part of the illness has been so hard!) Same with sitting at a table, he can't pull his own chair forward and if someone helps him, it's never right, and usually he'll shout, "NOT SO CLOSE!" when he isn't close at all. So many similarities that I would never have known about. Even if it's true, "IF you've seen one Alzheimer patient, you've seen ONE Alzheimer patient .." there are still so many many things they all do alike.
We (and it is we) are about 2 years into PCA or at least since the diagnosis. I think the disease had been working on him for longer than that but he didn't want to go for help. Depth perception just isn't there. He is on Aricept and recently started on MCT Fuel. I know he was better but for the last few days seems to have gone backwards. He was doing much better with dressing, especially buttons/zippers. Today he got out the two pills he takes before bed. He hasn't done that in the last few nights so I'm hoping he's coming back to the point he was a few days ago. I have all his daytime pills in a pill box but the two at night he has been able to get himself, but I do watch what he gets! I'm wondering if maybe he just had a little "bug" or something and just wasn't feeling well physically?
Pompanosusan, which of the Mayo Clinic did you go to? I think my husbands symptoms really fit the description of PCA especially on the Orpha website. I don't suppose it really matter what it is.....it just matter that it IS!! And yes, it has been a gradual decline but I do think the MCT Fuel did some good and I hope it will continue to work until something else comes along. I'm sorry you are here for the reason you're here but it is a good place to learn and help prepare.
What is the Orpha website and what is MCT fuel? I would love to try it. Is it over the counter. My DH is not able to even notice pills and where they are located. I have to basically dress him and this morning we had our first altercation about going to day care (this is 2nd week). I realized I shouldn't have told him where we were going..usually I just don't answer him and he goes. Anyway, I got him there and am thankful. Just one more day this week!!! He trips if I don't tell him there is a curb, etc. Going out our front door is a chore because it has about 1/2 foot step down. This is hard but I know that God is with me and that makes all the difference in the world.
Pompanosusan, the Neuroloist gave me the website......its orphanet but I don't have the full address. I think you could google it. And yes, it is spelled orphanet. The article was entitled Benson's syndrome or Posterior Cortical Atrophy. This author sees PCA as clinically distinct from AD.
As briegull has posted there is a lot about the MCT fuel/MCT oil.
I think our husbands have a lot in common. Mine has problems with curbs, steps, etc. and I suppose that is due to the depth preception.
I believe as you do.....God is with us and that does make all the difference. If you'd like to email me I'll see if I can figure out how to do email addresses.....I believe there is a thread at the top of the page about contacting members. Good luck.
Pompanosusan, I just entered my email address in the *use this section to contact members* (I think that was the title!!) I'll try to get that Orphanet website if you don't find it.
Pompanosusan, you can get "MCT oil" from many places over the internet. I get mine (Premium MCT Gold) from All Star Health. "MCT Fuel" is an emulsified MCT oil, made by Twinlabs. I get that in a health food store, or via internet, and mix with orange juice.
If you try one or both of these, START SLOWLY, or your husband may end up with cramps and diarrhea.
These are both the "poor man's Axona", Axona being a new, prescription medical food for treating Alzheimer's. We started using them since Axona wasn't on the market until three weeks ago. We've already had one person post wow! results with Axona for a patient with vascular dementia on the AlzAssoc forum.
Axona: http://www.about-axona.com
Your doctor probably hasn't heard of it yet, since it's so new.
I just checked at our pharmacy. Axona is not covered by our insurance and will cost $98 per month. The MCT oil is $18 per month, so I think I'll stay with that. Also, I have not really seen any change since starting the MCT, but also not much deterioration, so maybe she has the APOE4 gene. I might consider a one month trial of Axona. I'll discuss this with her doctor next week.
My dh started out saying there was a yellow halo around his golf ball when he hit it up in the air. Then a year later he says he sees 2 of them instead of 1 when the ball is in the air. He is going to neuro next month and we will bring this up. He has been to eye specialist and other dr. but no one has ever heard of this. I'm sure now it is related to dementia. He also says "what" no matter what I say and won't wear his hearing aids. We have only lost 1 pair. He, too, jumps at loud noises. He is now walking into the wall and door jambs. My BIL plays golf with him and says he chips the ball from one side of the green and then back again. I don't think he can judge how far it is. Thanks for the references above. He also says sometimes he sees things in pink, then it changes to blue or another color. Anyone with this experience?
Welcome, One day at a time (love your cyber name!) That's my motto. Can't help much on the eye problems - except my DH has become color-blind to some extent. I have to match up his clothes now because he can't tell one color from the other. You have found a good place to land here! Lots of help and advice from those who have been there before.
One day at a time, My DH always asks what when I speak to him, I sound like my own echo! Sometimes he looks at me like I am speaking Swahili or something. I know his hearing isn't great but he refuses to get tested because he doesn't want to wear hearing aids. I was out shopping on Thursday and when I got home he said Walgreens had called about the prescription but he could hardly hear the woman because she spoke so soft. I got to thinking later and thought Walgreens has an automated message. He showed me a note he had made on the call and it said "prints are ready". I didn't have any photo's to be printed. I finally figured it all out and called our CPA's office, they had called to let us know our taxes were ready. You get really good training to be a detective with AD. Of course we all could live without this kind of training. BTW, welcome to the group, you will get all the information and help to get through this rotten disease.
Halo around the golf ball doesn't sound exactly like glaucoma. For that, you usually see a halo of the same color around a bright light, and the problem is most obvious at night. I developed that symptom, but it turned out to be due to my eyes getting too dry, partly from staring at a computer screen for hours every day, and partly from apparently sleeping with my eyes slightly open. (They guessed the latter, due to my eyes being larger than the average, and people with larger eyes tend to do that.) Anyway, using lots of artificial tears took care of it.
I see double when my eyes are tired. After much testing by many doctors, it has been concluded that my eyes are fine, my brain just isn't processing the signals properly. (Sound familiar?) Been this way since I was a youngster.
I suspect what's going on with One Day's husband falls under the umbrella of "visual agnosia". So if One Day hasn't looked at those articles in my post near the top, try that.
Meanwhile, some of the members on another discussion forum who have AD have talked a little bit about what they see ... I'll see if I can dig that up. I'm sure they wouldn't mind if I quoted it here. They know caregivers read their posts, trying to understand what goes on in their loved one's minds.
One day at a time, have you noticed whether your husband might be walking into the wall or door jamb just on one side? My wife suffers from "left side neglect", possibly as a result of some stroke damage, and tends to not see door jambs or whatever if they're on her left side. It's almost as though she's unaware of her left hand anymore, resting it in her food while eating, and thinking she's done once she's pushed all her remaining food over to the left side of her plate, where it is evidently invisible to her brain, even though her vision is fine.
Part of a discussion on audible and visual agnosia that stuck in my mind:
F: Do I ramble? Yes. And I lose track of the conversation and start another one at the drop of a hat. The second conversation may make sense or not.
As to understanding others, sometimes everything is a jumble, other times I think I hear things clearly, but cannot remember the words even 1 minute later.
Both are real bummers when talking to docs.
I even had a person "morph" right in front of me one day. Not only did her words get jumbled, but so did her body. It was one fo the weirdest things!
A: I regret to say that I totally understand about words sounding jumbled. I think that's a frontal lobe problem, caused by not making the connection between words and their meaning.
I have moments when I similarly can't come up with a label for what I'm seeing. I don't think the visual is morphed, it seems more like with the hearing, I just can't identify it.
What do you mean, the person morphs before your eyes?
F: What I saw when the person "morphed" was a mishmash of a human shape. Sort of like an amoeba. There was a blob there, but I couldn't make out features. The way I recognized her was by her voice and general size. She slowly became a human shape again.
A: That's interesting, the amoeba thing. In a strange way, it seems like what I experience with sound. When I look at something and don't fully see it, I don't think it's changing shape, but I'll pay more attention to that and see.
Another strange visual thing is I won't see something I'm looking for. Then I look later, and there it is, where I'd looked before. I wonder if that's connected to, like, when I'm going to put something in the oven, but I can't figure out the controls for a minute, maybe I'm not seeing it. Or something.
F: I once went to my son's house for Christmas. I had been babysitting there for a year and a half. When I looked at it it wasn't there. Neither did the cul-de-sac look familiar. The second time by everything was OK.
I went to use the parking garage at a local hospital. I'd been there dozens of time. It wasn't there. Nothing looked different, but the building wasn't there. Same the second time around. The third time was a charm.
L: Things don't morph in front of me But sometimes when I'm driving or going some place I been a hundred times, all of a sudden things don't look familiar!? It's a very strange feeling. I have to pull over and wait for it to pass. So far, I'm able to re-orient. I guess one day I won't be able to.
A: Then there was the time I was in a big indoor mall a few months ago, headed for the big bunch of glass doors, the exit to where I was parked. I went to where I came in, but the doors weren't there. I walked up the aisle and back again, looking for what was a really big entrance, but it wasn't there. Third time pacing up the aisle, they just sort of started to appear out of, well, I don't know where. Very disturbing.
One Day At A Time, My husband has never mentioned a yellow hallow, however, he does mention that the driveway or carpet is purple, red & turquoise at times. He also was a avid golfer....and very good, then he also started chipping way over the green many times...also couldn't putt anymore. Even though we had a membership we only played 5 times last year...he hasn't even mentioned playing this year.