We just came from the grocery store, where he didn't have a clue what it meant when I asked him to "please come over here" or to notice that he should get out of my way that he was blocking. We hadn't been shopping together for a long time and now I know that this is one more thing I'll have to just do by myself. It seems that he's getting more and more unable to follow even the simplest direction. It used to be a direction of several steps, but now we're down to one. The New Reality is always a jolt, isn't it. I always think I'll be ready for the next downturn, but I'm really not. The plateausin between are getting shorter in duration.
Yes Pris! Visuo-spatial processing deficit is J's most severe problem. I so recognize the failure to be able to get out of the way, or follow simple directions. Among problems this causes:
He might end up BEHIND the order counter at Panera or a store, because he can't perceive where is what.
He will block aisles and be in people's way...all the time. I try to get him out of the way as inoffensively as I can, but--nevertheless--I manage to offend. And explanations of why I needed to pull him aside do not help because he was NOT in anyone's way, thank you very much, (and chances are he didn't even see the person.)
You cannot point to something. (See that red car?) It is hopeless. He will look everywhere BUT where you're pointing.
If he needs something, and doesn't know where it is, I just have to get it. It is no use to say "it's in the top drawer," or "it's in the freezer." He will open the bottom cabinet or the refrigerator.
Lately he has trouble figuring out which side of the door to be on when he wants to close it, with the result that he might close it and find that he's still inside when he meant to be outside.
He is becoming clumsier, and taking stairs much more slowly--especially going down. This is not a fitness problem--he uses the elliptical 30 minutes every day. This is because he can't see and perceive what he needs to do.
Here's the weirdest: We are approaching our car in the parking lot. He follows me, forgetting that he needs to get in the passenger side. I say "no, go around to the other side." So, he walks all the way around our car AND the one next to it, and tries to get in the car beside us.
One of the most difficult aspects of this is that his default position, when we're walking down the street, through the mall, etc, is to follow me 10 feet behind. This does not work well, because if someone with hair like mine crosses our path going another direction, he might follow. Most likely, if other people come into the picture, he'll just freeze and look around not knowing where to go. So, in most situations like this I have to hold his arm, which kind of gets on his nerves. But it's the only way to keep him with me. Sometimes it's better to hold his hand, because it seems more like affection than guidance.
I didn't realize there was a name for this. DH has gotten so when I tell him to get in the car he just stands and I have to put him in the car myself. Same goes for the seat belt.
Thank goodness I'm not the only one dealing with this. It makes it so much easier to share stuff with my friends here. DH follows about 5 ft. behind me and if I stop he keeps walking and bumps into me. I think this bothered me so much today because we'd just gotten over his wanting to go to the grocery store (?) and have a key made that would open the car AND the front door. I know we're not supposed to explain things to them because it does no good, but I had to tell him that it was illegal to copy either one (true, in this case) and that no key maker would do it. This went on and on and on. Wish I were better at distracting the way we're supposed to.
I thought this had to do with perception type of thing - seems the same although the eye doctor said it is not perception but he is not able to understand what he sees. When we go to the stores, I make sure it is at a time when there are not a lot of people around. At the market or WalMart, I make sure he holds the handle and I guide the cart. As for the car, I always buckle him up/out and open the door and assist him getting in (butt first, then put the legs in, watch out for the head). When we bought our car, I measured to make sure it was going to be easy for him to get in/out (not too low or too high). Each time is like the first time these days. But it works for us. If you go to the same stores on a regular basis, people get to know and understand and tend to be helpful. Never shop before a holiday! or when working people are getting off to grab something fast and go home. All of our shopping is before 11 am. Always make a list of what you need. If I forget something, it waits until the next time. We don't need the stress. We always get a donut after getting our food as our treat for doing the marketing to make it a little more fun. Hope this helps.
The donut reminds me of another shopping thing. This disease is so much about regression to childhood. We cannot walk past M&Ms/Spice drops/Doritos without J grabbing a bag. Sometimes I say "but we're about to have lunch." Usually he insists he can have this AND lunch, and I go along with it.
My DH has Posterior Cortical Atrophy and his eyesight or sight/brain connection is really bad. I usually have to get him to the passenger side of the car, sometimes he can open the door and if I pull the seat belt forward just a little he can grab it. He thinks he is doing it alone! This is good!! He can still fasten his seat belt. Strangely enough, sometimes he has trouble sitting on the seat. Yesterday he tried to sit in the foot of the car...just couldn't understand what the seat was for. I was having the same trouble trying to get him to "sit" at a table when we would go in Baskin Robbins for an ice cream. I would pull out the chair and he had no clue what to do. (We don't go in any more.)
I haven't seen anyone else here that has Posterior Cortical Atrophy...anyone? I'd never heard of it before DH got the 'verdict.' One of the really sad things is that he can no longer read and he loved to read. Audio books or me reading to him is OK but nothing compares to opening that book.
This has been the number one problem with my husband as well. No one else seems to understand how important it is to know one's placement in the world. This also creates major problems with math, reading or simple directions. As I was reading the above posts my head was nodding up and down in agreement. Not that I'm happy that anyone else is going through this,but it is always nice to have this board to share such problems.
This also creates problems during a visual exam. It isn't that our LO doesn't see the letter...it is spatial.....It was suggested that my husband be tested with objects (like a child), but it would be the same issue. His eyes can see it, but his brain isn't giving him the cues needed to identify. Does that make any sense?
My husband has been having problems with his hands cramping...........However, his doctor feels this is the same type of problem. His hands are fine,but the brain-hand connection doesn't work. So, if his hand happens to be open, his brain no longer is able to tell it to close enough to pick up food or a utensil.
Audrey--I identify with the loss of reading. J also loved to read. He still "reads," (?) but it is the same book, over and over, without getting anywhere. For a while he tried to use an index card to mark his place as he scanned the lines, but I don't think that's working. Basically, he can't find where he was before he glanced away, and he can't process anything complex, even in a short blip. However, he LOVES for me to read to him, and I do. We enjoy Bill Bryson books.
I'm interested in the Posterior Cortical Atophy Dx, because even though J's Dx is simply AD (or "dementia of the Alz type,") he doesn't fit the "typical" (using that term advisedly,) pattern of memory deficit as primary symptom. IOW, his spatial problems are probably much worse than those of another AD patient whose memory of who/what/where is far more impaired. So, his balance of impairment is strongly toward visuo-spatial being worse relative to memory.
With increasing frequency, I'm seeing him reach for something, such as the door handle, the refrigerator, etc, and just grasp fruitlessly at the air because he cannot discern what to grab or how to grab it.
Here ( http://alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200137&documentID=898&pageNumber=1 ) is a pretty good article by the UK Alzheimer's Society, differentiating between more typical Alzheimer's and PCA. It's clearly written and quite useful, I found. The underlying point though, is that PCA is usually caused by the Alzheimer's process, it's just that there's a variation in that a different part of the brain is primarily affected first.
A quote from the article: "PCA tends to affect people at an earlier age than typical Alzheimer's disease, with individuals often being in their mid-fifties or early sixties when they experience the initial symptoms. However, it can also affect older people."
This explains a lot. My husband is 62, showing clear symptoms in his mid 50's, and exactly as stated in the article, depression was suspected first, followed by worsening symptoms in the visual processing area.
J is a lifetime hardware man, running a retail store and building/renovating houses his entire adult life. Now he can barely insert a key in a lock. The tool thing was, because of who he is, a very early and obvious loss.
Of course, he still thinks he would be perfectly good at driving if he were allowed to.
Emily, I'm going to read that article..thanks. There is such a small amount of info on PCA. There is an Orpha website (I'll try to post it later if anyone needs it) that gave pretty good info and also the Mayo Clinic has some info. Your DH fits the description of my DH. As for reaching for something and grasping air, that is exactly what he does. He is the only case his neuro has and she has tried to find everything possible for us.
I can relate to your DH's loss..my husband was an engineer. Also, about the Bill Bryson books...I'll have to check that out! We're currently reading (re-reading!) The Last of the Breed. DH is not a strong fan of Louis L'Amour but he does like this book!
Thanks, emily and Ann for sharing this information with me. Have either of you seen posts here from others that are experiencing PCA? I'm fairly new here and haven't run across any more..
Oops, I meant to mention the fact that there is an author in England that has PCA. I can't remember his name at the moment but he fits the "younger age."
I did not know there was a name for it, but my DH cannot remember where anything is in our 4-room apartment. I have given up giving him directions where something is (his razor, for example). I just get up and get it.
If I get more than ten feet away from him in the dining room (of our retirement community) he cannot see me. No memory of what I am wearing or where we were seated. No wonder he wants me near at all times.
There is actually a ton of info online re: Posterior Cortical Atrophy, but much is in the form of scholarly articles. Often you can get the gist of these by reading the abstract (generally that's all they let you access anyway.) I will summarize a bit.
The nuts and bolts are that PCA is a syndrome that can be initiated by a number of neurodegenerative processes, but AD is probably the most likely cause. So, in general, PCA falls under the AD umbrella, but is distinguished from "classic" AD in that the brain fails in a characteristic pattern which causes visually-related functions to be lost earlier and more severely than the typical memory-related functions.
Still, never fear, the memory goes too with time, and the end-game will be the same. I find it curious that this specific variant has not been named in our case, but maybe it's not that surprising. We only saw the diagnosing neurologist once, and by then Jeff had many symptoms, not just the visual ones. (Problems with his eyes were his first major complaint.) After that his clinical evaluations have occurred in the context of his clinical trial participation, where the important thing was that he had any type of AD, and the particular sort wasn't so relevant.
But I have found it interesting now, 6 or so years down the road, to realize, retrospectively, that PCA is EXACTLY what we've been dealing with, and that this explains why he hasn't always looked like a classic AD sufferer.
PCA people will, up through the mid-stages, exhibit much worse visuo-spatial orientation, difficulty with mechanical tasks of any sort (ideational apraxia,) relative to classic AD, in which the memory problems will seem more significant early on. PCA people most likely will have better working memories for a while, but a reduced ability to interact meaningfully with their physical environment.
When PCA occurs, the patient is most likely youngish...50s.
With AD and such neurodegenerative disorders, sometimes we count the weirdest blessings. I suppose an "advantage" of PCA over classic AD is that, with his mechanical abilities totally shot, by the time his memory is so bad that he might want to "go home" or escape me, he will be completely unable to open doors anyway. I am beginning to understand why it would be so difficult in cases where the death of memory precedes the loss of physical aptitude and how that can be dangerous. Someone who grows angry, frustrated, confused, yet can still work locks or start a car... Jeff knows who everyone is, where he is (as long as we're home!) and to some extent what's what. But he can barely butter an english muffin, and he cannot stick a key in a keyhole.
Thanks Emily...the neurologist DH saw in the beginning sent him for all sorts of test as well as an evaluation (lasted 3 hours for him and an additional hour for me) and they had no problem diagnosing what we were facing. Of course I had never heard of it and couldn't find a support group that fitted "that" particular thing. I am so thankful for the support at this site...
Good luck in the days ahead. We try to take one day at a time, but I still try to prepare myself for what we are possibly facing. I use the word "possibly" because tomorrow is unknown and as we all know, there are no two people that are alike.
My husband always walks behind me. I have to keep turning around looking for him. I try to hold on to him, but sometimes he does not like me to take his arm. He says he can't keep up. He has not idea where anything is in our home. He asks where the toilet paper is, where the dish towels go. He does know where his socks are, but not where his shirts are. He may stand in front of the refrigerator looking for milk or juice, but cannot see it in front of him.
Maryd, My DH is the same. Doesn't know what he is looking at but yesterday when I was folding towels from the dryer he saw a SMALL piece of lint on one. Go figure!
I've found this discussion very interesting and enlightning.My husband is constantly asking me "where do we keep the cups.or towels,or anything else he wants.I thought he was just getting lazy and wanted waited on.He can't find something that is right in front of him.He also has trouble getting a key in a keyhole and constantly knocking over his cup or glass.He does want me to take his arm whenever we go anywhere he is afraid of getting separated from me.As much as I don't like seeing someone going thru this,it is comforting to know there are others.
Have any of you had the diagnoses of PCA? Since this is what I'm dealing with I'm not sure how other types of dementia work, but I'm sure they all have lots in common. Eyesight and eye to brain is one of our biggest problems.
I could measure my dh's rate of decline by the extent to which he can empty the dishwasher and put stuff away. This was always a job we did together. During the last few months he has become very reluctant to help, and I realize it's because it's becoming harder for him to know where to put stuff. Last time he would only put away the large plates and the wine glasses. These seem to be so distinctive in shape that he still knows where they go. The bowls of various sizes, the smaller plates, silverware, different kinds of glasses -- all too difficult now.
He can still crack nuts -- this is an activity I could always give him if I had to run a quick errand -- but has lost the knack of putting the nutmeats in a separte bowl (of course I give him the containers). Now he can only think of eating them == so will only crack as many as he wants to eat. Then he stops and just stares at them. And yes, he is ALWAYS in the way.
When I first read about LO's walking behind I was surprised: a year ago I was still skipping to keep up with him. No more. He walks behind me now. I think it's partly because he's unsure of where we're going.
There's plenty of overlap between PCA and typical AD, because the underlying process--the formation of amyloid plaques in the brain--is the same. (Unless the PCA is caused by Creutzfeldt-Jakob, which also happens.)
The main difference is in the particular portions of the brain that get mucked up first. So, PCA patients will eventually have the same memory loss that is the hallmark of classic AD, just as classic AD patients will eventually begin to lose the mechanical abilities and visually-related functions that are the hallmarks of PCA. Hence, there's going to be the murky middle stages where they begin to smudge.
And, as we all know, "when you've seen one person with AD, you've seen one person with AD." Just as any AD person's worst deficits won't match another's, PCA is just a variation where the visual perception stuff goes bad first. It's still AD.