I started a Dicussion in February on the AD Asso. on-line discussion board titled "Presigns to Stage 1 Alzheimers" under the "AD Under Age 65" area. I found out through discussions that Stage 1 is no symptions yet. So these presigns in our spouses must be Stage 1.a. It seems to me that what we are experiencing for many many years has to be assigned a term. If you get a chance to read my other discussion, please do so. It pretty easy to find and it lists so many of these presigns that we have all experiences.
Mood changes, unusual anger and outbursts, wanting a divorse, not remembering conversations, losing glasses, unable to run TV controler, calculator, unable to count some money, not able to handle anything stressful or related to a decision, unable to remember directions, unable to anticipate what needs to be done next, taking apart something to fix it and unable to remember how it goes back together. I'm sure there is much more that I have forgotten. Not remembering to turn on coffee pot, wash machine, not remembering to continue with something like going to the next channel.
AND it being our fault most of the time. You are not listening, you did not tell me that, I would be fine if you didn't cause me so much stress, why did you look at me that way, are you looking for a fight or something, don't treat me like a baby-I can do it myself, how come you never help me when I need help.
My goodness - you have been peeking in our windows and reporting what goes on here. I have wondered why these symptoms are called MCI instead of Stage 1 or even 2. His neurologist suggested again a month ago that he go to therapy to work on his anger issues. We are finding a new one - but he can't remember things - especially complex emotional issues
What we need to realize is that Stage 1 is the baseline. I'm at Stage 1. I have the heredity for dementia when I'm in my 90s. It existed in my mother's close relatives on BOTH sides of her family. My immediate family didn't live long enough to have it, but both my sister and our grandfather had slow leaks. He died from it in the 1920s, and she was successfully operated on in the 1990s, but never quite came all the way back.
I rather imagine that most of us are at Stage 1 here since there is no Stage zero.
So I'd expect that the range of early signals that Mary in Montana listed are actually part of Stages 2 and 3. That is well before most of us even thought of dementia.
As for my husband, he always lost his glasses. It was a given. We always "didn't tell him" whatever he forgot. And I bet there are a lot more of the early signals that he had. I keep trying to figure out when all of this started, and I can't do it.
Another problem is that many people lose their glasses, moi, for instance. I keep 3 or 4 pair around the house all the time so I don't have to constantly hunt for them. Some people are nasty, always angry, have mood changes, not able to tolerate stress and always blame someone else for everything--and they don't have MCI, AD or anything except a disagreeable personality. So how do we tell the difference, and what can we do about it even if we know it is pre-AD?
I worry about that constantly. Every time I have slip of memory, it's always "Is this it? Am I going down?"
Remember, misplacing your glasses is not AD. Forgetting you ever HAD glasses is AD. Forgetting your daughter's number is not AD. Asking her what her name is is AD.
Whenever I get freaked out about maybe having the signs of AD, I draw a clock. That's one of the earliest signs...the inability to draw a clock from memory. Makes me feel better every time! :)
So that is what the clock is all about. At what stage can't they draw clocks?
You also have a point about forgetting that you ever had glasses. My husband has "given up" his hearing aids. I think he might just have decided that he doesn't need them, although he does. Or they might have been uncomfortable for some reason and he couldn't explain that. Or he might have forgotten that they exist at some point.
Forgetting what your daughter's name is or that you have glasses are both very late symptoms of AD. But what are the early symptoms that we all missed. Or is it just that AD takes whatever is already going on in the normal mind and magnifies it. Someone here said that in another thread and it just made so much sense to me.
Mary in Montana, From what I have read, Stage 2 is when family and friends don't notice any changes. Stage 3 is when family members recognize changes in memory, communication or behavior.
IF your husband has Alzheimer's and you recognize these changes, then my reading is that is Stage 3.
Please, if you husband has not been diagnosed, if is important to get a full medical check-up ASAP. You wouldn't self-diagnosis or manage a heart attack, and there are so many treatable and curable causes of symptoms that are similar to Alzheimer's disease.
There are many medications to manage the behaviors of Alzheimer's disease so that the patient can be more comfortable and life for a caregiver can be a little less stressful.
Even though I am a medical professional I am math challenged. I couldn't count back wards by 7's to save my life. My point is: The mini mental is not an absolute. My husband came through with flying colors while in stage 5. His logic was better than mine even though he wasn't sure who I was. Had the psychiatrist shaking his head.
trisinger ... my DH lost the ability to draw a clock a long time ago. He seems to have a little trouble understanding the concept of time, as well, and one of his earliest symptoms was losing the ability to deal with numbers. But yesterday, he was looking at two clocks in our kitchen, one of which has hands, and the other is digital. He asked me which one was right -- the clock with hands is five minutes ahead of the digital clock. I was floored ...
Starling, I don't think clock drawing is associated with a stage per se. It is one of the questions on the Mini-Mental Status Exam. It is my understanding that you get x number of points per question, and the lower the total number of points, the more advanced the disease (theoretically). The particular questions that are failed, however, do not affect the score.
bluedaze, after my husband was given his first MMSE, I tried counting backwards by sevens myself. I kept coming up with different end points each time, so I was obviously doing SOMETHING wrong, and it was a different something each time. And I'd be very likely to miss any questions about the date or day of the week... Guess I'd better not ever formally take the MMSE, or I might be committed. :-)
I agree with you, I think the MMSE is of limited utility. I cringe when doctors say wow, your husband scored 25 last time and 24 this time, he's obviously worse. That's ridiculous. The scores can fluctuate just the way the individual symptoms do. (I've developed a very bad habit of coaching my husband just before an MMSE, to help him do better.)
In the clinical trials, my DH is tested every six weeks to three months; and he gets the thorough neuropsych evaluation once a year. The clinical trial tests are more extensive than the MMSE, but less extensive than the two-day neuropsych evaluation. He has been given the same tests so often, he is learning how to do better on them. The experts running the trials and the longitudinal study say that this is not uncommon. Strange that his short-term memory is severely impaired, yet he -- and other AD patients -- can remember how to score better on tests three months, or even a year, later.
He himself tells me he is learning to "read" the person administering the test, and can often get the right answer from the person's body english. It's a game with him. (Which is good, or he'd never cooperate otherwise.)
I can't count backwards by 7s but DH can. He also plays cribbage. Sometimes he forgets the color of his pegs and whose turn it is. In his case he is losing language, decision making,rational thinking, short term is GONE.He recognizes a familiar face but has no idea of their name or where he met them.At times he says "thats a nice man" or "thats a bad man".So he must know if liked or disliked them.Everyone is different.
I can't count backwards by 7s and never could. Like a lot of dyslexics I never learned how to do arithmetic. Not enough drill in the school I went to. No parental help. And I didn't learn how to do everything myself until Jr. High which is the point where most kids can do homework alone.
I think it's almost impossible to look back and figure out when subtle signs occurred. In our case, it is doubly difficult because of Sid's ADD. He could never complete tasks or organize anything.
But he could walk into his store in the morning and know if one item of merchandise was moved. He knew every stock number of every item, and he could read and understand those stupid technical manuals that no one reads or understands. Yet when he left that job after 21 years and started a new one that was supposed to be less stressful (no such luck), he couldn't figure out which vendor was coming on which day without a chart I had to make for him. He started forgetting everything that I or anyone else told him, and he could not understand directions and information. That's when I knew there was a big change, and we were headed for major medical trouble.
Looking back, I have to decide when I really knew that he had AD. I can't recall when I started answering for him because he was taking too long to answer people when they asked him questions; when I started turning down invitations because he couldn't stay awake at our Sunday School class parties (much less in Church!); when a man who NEVER lost his temper, got angry at the pots and pans because he couldn't get them to fit like he remembered; and when he started becoming obsessive compulsive about where everything in the house belonged. These were the first signs he showed. This was about three years ago. He could take most of their tests and pass them by all correct answers!!! Until they tripped him up by asking him to name all of the animals in the world that he could name - and to take his time. He could only name three, and left off the dog and cat!!! After almost five minutes, he could only name three animals! This was in January 2007, when he was officially diagnosed. He no longer knows our names, doesn't know his name, doesn't know I'm his wife (though he hugs and kisses me each morning, and greets me at the door when I come home from work with a hug and kisses). We're going into the last stretch awfully fast. He can barely dress himself, feed himself, bathe himself.. but he can sit in my flower beds and pull grass and weeds!
By the way, Starling and Anna, I can't count backwards by sevens either...unless you give me a calculator! And I'm good at math - going forward! I can still name all of the books of the Bible though!
This enters in another thread I've been in, too....the one about whether you'd want to be tested to find out for sure if you have AD. Most people say, "No, don't test me, I don't want to know." But then look how much worry we spend wondering if every little thing is "IT." I'd almost rather get it over with.
Especially when I tried to put the cereal box in the fridge this morning!
Mary, your being able to name all the books in the Bible made me laugh. Can I still name all the Kings of England starting with Alfred the Great? Hang on a minute while I try. Yup! Had a bit of a problem with James I, but got past it. I was a history buff and England in the middle ages was one of my periods of interest.
Ah, the cereal box in the fridge. My husband is having a bad day. He put his coffee into a glass this morning and his fruit into a cup. He couldn't find the bowls or the plate for my share of the fruit although he did seem to recognize that I was supposed to get strawberries too.
Before the Nemanda I found towels in the glass cabinet and clean, empty plastic containers in the crisper in the refrigerator. I think we might be back there again.
Dear PatB, my DH sees his doctor a couple times a year for other conditions and has routine blood work twice a year. Thryod has been ruled out many times. When he is at the doctor, they always go over the other medical conditions and nothing comes up about this. When I tried to talk with his doctor four months ago about the confusion and glassy eyes that goes along with it, the doctor basicly told me "let's not look for problems when they don't exist." I am in the difficult spot living with someone who can really "get it together" when he wants to and if I bring up getting it checked out, it always causes a fight. When things get more noticable by others and outsiders, I will do the letter thing to his doctor. At least that's my plan now. Right now, my DH thinks that it is stress caused by me that is causing his problems. He feels that things will change if.... As with everyone else, I still question on his good days if there is really a problem. Then on his bad days, I am reminded there is.
I am always courous how others finally got their LO to the doctor for the first evaluation.
I went to his regular doctor's appointment because I had "questions". I asked for an evaluation and we got sent to a cognitive therapist. SHE basically did the initial diagnosis and insisted multiple times that my husband had to go to a neurologist where it all became official.
It is really, really hard to pull the wool over the eyes of a cognitive therapist who is used to dealing with stroke victims. She knows when someone can learn the new stuff, and when they can't.
Mary, If you are concerned about changes in you husband and your gut tells you something is wrong, and the dr. tells you not to "look for problems" , it is time to find a new doctor. I don't know what your insurance set up is, or how difficult this would be, but it has to be done!! PatB
Even in California, under the worst managed care insurance I've ever come across or even heard about, I managed to fire a bunch of primary care doctors and find new ones.
Just to explain how bad the insurance was, I spent a year fighting my way to a gynecological oncologist. By the time I got there three doctors, in addition to my primary care doctor, were fighting along with me and I never even met one of them. I went under the knife potentially the sickest patent he had ever seen. The cervical cancer was operable, the ovarian tumor wasn't cancerous. The stuff in the uterus included an early cancer, but I wouldn't have lived long enough for it to kill me. The gangrene would have gotten me sooner. The operation saved my life and I didn't need any additional treatment. But if the ovarian tumor had been cancer, I'd be dead.
Information was not shared. One of the things that made my husband's dementia easy to diagnose was that the primary doctor shared EVERYTHING he had from all the other doctors. In some cases the neurologist got paperwork twice over from more than one source. My husband never had the 5 hour exam. He didn't need it. There was more than enough evidence.
So basically, Mary, you go out there and get a new primary care doctor.
when my LO complained about fearing he had dementia, I told him he needed an evaluation with a neurologist who specializes in dementia. He went and got all the tests, evaluation with her, pcsychometric testing, blood work, MRI with contrast. After he did his tests, I went to the same people and had the same thing done. I knew that if I didn't, he would always accuse me of being the one who doesn't really remember. My tests came out ok and his didn't. He has become very argumentative and I finally learned that is part of this ugly process and now walk away. There have been many times when I have questioned my judgment and sanity as he looks so good sometimes and I wonder ........is there really something wrong, or I'm making it up. Then I remember the tests. This is a cunning disease.