Washington DC
I originally started writing today to review how
slowly the symptoms of my Alzheimer’s have progressed and what that’s meant for
me. But after reviewing where I thought
I was, I decided to take an Internet IQ test to get another perspective.
In my review, it was clear that some of my symptoms
haven’t progressed at all since my
diagnosis last September. I haven’t gotten lost again. I actually notice improvements in my
relationships. I’m still losing lots of
things, but it’s not much worse than before.
My lecture
in Kansas City last week went well.
Some things have gotten worse. The confusion and blank-out during the keys-at-the-front-door
incident were new. I’ m less able to do
arithmetic in my head, reconcile the checkbook or handle complicated
data.
Yes, there are some changes, but not as many as I
expected by now.
But then I took that Internet IQ test. Surprised by the results, I took another,
just to check.
(Now, before anybody comments on how unreliable
Internet IQ tests are, I know, I know. But
I’m not looking for a precise score, and I don’t need the test to be as
comprehensive as a more sophisticated exam.
And although the items in each of the two tests were quite dissimilar, statistically
the results were the same in each test.)
What was more revealing to me than the final numbers, actually,
was my difficulty in completing some of the tasks in the tests. I’ve always been good at the kinds of abstract
tasks that were on the tests. This time,
however, I was astonished at what I could no longer do.
I wasn’t surprised, of course, that my memory was
shot.
But I was surprised at my limited ability to recognize
the logic in the progression of patterns.
This is a task I’ve always been good at.
As an example, there will be 3 different patterns in each of three
rows. The first row might have 1 circle in the first box, 2 circles in
the second box and 3 in the third. The
next row has one square in the first
box, 2 squares in the second and 3 squares in the third. The third row has 1 triangle in the first box, 2 triangles in the second and the task
is to pick from a group of ten choices what comes next, in this case 3 triangles. The patterns become progressively more
difficult, of course, but—very early on—I just couldn’t recognize them. Wow! I
thought, that’s a big change.
I had a similar problem with a task in which I was instructed
to pick out which of the ten digits was missing
from a row of the other nine digits and to pick out from a second row of
letters, which letter was repeated. Those should be easy, quick tasks, but I was
slow … really slow.
My IQ used to be something over 140, not “genius” but
“superior.” But I was shocked that, according
to the two Internet tests, it’s now slid to about 100, normal. While there’s something to be said for
finally being normal, sliding from the 99th percentile to the 50th
a big drop. This formal testing makes it
clear that I’m more cognitively impaired than I thought
As has been usual during this whole illness, however, I
feel a strange equanimity. What did I
expect? To get smarter? For whatever reason, the decline just doesn’t
bother me. What’s more curious to me,
however, is that I don’t notice any change in my experience
of my self. Surely that experience
changes at some point in this disease. But it hasn’t yet.
More on that in the next post.
Are you on any alzheimers meds/ the namenda and aricept drugs or the exelon patches? I know a psychiatrist here in Iowa that was working with our residents, and he put exelon patches on every person with dementia. I don't personally know if they helped or not. People didn't decline very fast, but I don't know if that was the patch or just the natural decline. I do know there is a study somewhere, I saw online, where they are wanting thousands of people for their study. They have apparently done the small study for safety and the FDA, etc. Now they are saying they want thousands of people. But I can't remember where I saw it. LOL. Luckily I just put the note in long term memory and now cannot access it. (and no, I don't have AD, lol).
ReplyDeleteI have always tested on IQ tests between 120 and 140. I find the thing that really helps my mind is sudoku puzzles. The first ten or twenty times I did them, I ended up throwing the book across the room. I finally did figure out how to do them. So that's a hobby I like to do.
I haven’t started on any of the Alzheimer’s medications yet. As you know, the three medications help improve cognition but don’t affect the underlying process or the course of Alzheimer’s. At this point, my symptoms don’t bother me much. Most of them are minimal, and the more bothersome ones occur only very occasionally. With only minimal symptoms, I would have difficulty determining whether the drug is or is not helping. That would likely keep me on the medication a long time without really knowing whether it helps.
DeleteSince I’ve always tried to avoid medications when I can, and since there is no disadvantage to waiting, I will probably wait until my symptoms are more severe so that I can determine whether the medication is effective in my case. (Their effectiveness varies considerably from person to person; some people get worse, some better. For all groups combined the overall effectiveness is real but small.)
And I’ve gotten conflicting messaging about whether medication ceases to be effective after a set period of time. If there is just a window of effectiveness, I think it’s best not to take it until I need it. On the other hand, the drugs are not very effective in moderate dementia, so I can’t wait too long, either. I think it’s a difficult judgment call.
I went through "the" process with my grandmother and both of my parents. I think I learned a great deal and hope to learn more from your blog. I might even be able to share some of my experiences. Thanks for sharing this critically important subject.
ReplyDeleteA women with temporal lobe dementia (probable cause) shared at our senior center this week. she was living by herself when things went down hill pretty fast and the consequences of not being able to keep up with her finances resulted in her losing her home to foreclosure. She has lost a lot of her independence and is living with one of her daughters but commented several times "Apathy is my new best friend". Maybe that is the same as equanimity. I find I am less bothered by things that are not going well, but I still have my moments.
ReplyDeleteI’ve wondered the same thing. Apathy is certainly one of the symptoms of Alzheimer’s. If the apathy were keeping me from doing something important, there would be reason to worry, I suppose (although I don’t know what good worrying would do). But in this case it may be the apathy that is giving me the equanimity about something that I can’t change and must accept, anyway. If that’s the case, I agree with the woman in your group. Apathy may be my new best friend.
DeleteYears ago I tested at 142. I don't have the courage to check out what my IQ is now but I'm sure it's not that high.
ReplyDeleteIn the last year I have failed to balance my checkbook all but one month. Some months I add $30 or $40 and some months I have subtracted more than $200. And all that with only processing 10-15 checks and 4 deposits! It drives me crazy. I've added and re-added it several times, to no avail.
I tried Sudoku and just couldn't get the hang of it but I love crossword puzzles and Scrabble.
Maybe I should be tested to see if I have inherited the disease from both of my parents. I can't decide just yet, but this blog is a great comfort to me.
Hi, Cathy. It sounds like you have good reason to be formally tested for dementia, especially with your family history. Could be something else treatable, of course. For me, knowing that I have Alzheimer’s has given me the freedom to give up keeping the finances for our church without frustration and, when the time comes, I hope I’ll be able to do the same for our family’s finances. If you know what’s probably coming, you can make plans … like finding someone who can take care of your finances before you make a costly mistake.
DeleteCathy, there are many causes of cognitive problems, and as David has pointed out, a variety of them are reversible.
DeleteIt is good to get a professional opinion to rule out those that are implausible and focus on helpful management of those that are, so as to ease your mind.
It may be helpful for you to know that hereditary relationships are not a major factor in the determination of Alzheimer's in people who don't have Down's syndrome.
Another possibility that many people do not recognize is that cognitive function is often impacted negatively caused by high levels of stress and anxiety in their lives.
What actually happens is that being worried and anxious takes up a lot of cognitive resources that prevents the individual from functioning optimally.
A telling sign that excessive stress/anxiety is the root cause is when the results of a clinical assessment at the neurology department does not turn up with any findings that signify the presence of any neurological disorder.
If that is truly the case, then identifying and addressing your fears and worries will be more helpful for cognitive functioning than anything else.
Thanks to both of you for your comments. I am still mulling over whether or not I should get tested. One of my concerns is that it will be a self fulfilling prophecy situation: I'll make more mistakes and forget more things because I am expecting it. Is that silly?
ReplyDeleteI do have a lot of stress in my life since my husband has a number of chronic illnesses that hospitalize him every few months. We've been married 46 years and he's been sick for more than half of that time.
I thank you, Kelly H, for your comments, too. It sounds as if you've had lots of experience with Alzheimer's.
DeleteRegarding the tendency self-fulfilling prophecy: in my opinion there are several things that balance it out:
1) Not knowing also has its emotional cost. At least in my case (and I doubt that it's true for everyone), knowing was less stressful that not knowing, so the stress is less.
2) Again, I speak not as an expert, but it seems to me that the self-fulfilling prophecy is something that one person labels in another person, especially when it's a mental disease. (On the other hand, there is the real possibility that a person who finds out would get depressed and do worse for a while. Again I think it's better to know.
3) Again in my case, knowing what to expect did not lead to doing MORE poorly. I've been very conscious to take practical steps so I don't lose things as often. I can ask others to be helpful to me. There are support groups out there than have been of inestimable value to some folks.
You certainly know yourself better than anyone, and it's you who will have to live with the decision, but I think your desire to listen to others before you make your decision is healthy.
David
I so appreciate your insight about not noticing the changes in your experience of the self. I think that is what I find most difficult in conversations with my Dad (who was diagnosed last year) -- he seems unable to articulate the how things are progressing for him and how best I can respond to him and his (changing) needs. Now maybe I can stop expecting him to explain and start sensing the needs as they arise. Thank you.
ReplyDeleteI will work with this question of the experience of self in the following post.
DeleteHi David, I wouldn't put too much stock into that IQ score as it is probably not the most reliable compared to perhaps the more standardized IQ test you took many years ago (ie WAIS).
ReplyDeleteHi David, I wouldn't put too much stock into that IQ score as it is probably not the most reliable compared to perhaps the more standardized IQ test you took many years ago (ie WAIS).
ReplyDelete