I’ve just returned from Seattle where I was visiting my son. On the train trip back, I became repeatedly confused trying to locate my seat. Here’s the process in some detail. Although I had a seat in one of the coach cars, I usually spend most of my time in the lounge car writing or reading at one of the tables. I have to return to the second coach back to my seat occasionally, however, for one reason or another. Several times, however, I got confused about which way to turn to get from the lounge car back to my seat. (Just to be clear: on a train there are only two directions to choose from.) One end of the lounge car has tables and the other swivel chairs, but during these episodes I couldn’t remember which end of the car I’d entered. I would take a few seconds and then head in the direction I guessed my seat was located. I’d walk a few steps, however, and then realize I wasn’t sure. So I’d have to concentrate on the logical connections between each step in the entire thinking process. It went something like this:
- I would remember watching (at the beginning of the trip) the lounge car being physically hooked up at the very end of the train; therefore,
- the lounge car must behind my coach car; therefore,
- if I want to go from my coach seat to the lounge car, I have to walk toward the rear of the train; therefore
- if I want to go back to my regular seat from the lounge car, I have to walk toward the front of the train; therefore,
- I have to look out the window to recognize which direction the train is going. In my confusion, even if I looked at the scenery as it passed by I had to consciously decide which way the train was going. Therefore,
- I should walk in that forward direction; and
- while I walked through the coaches I should double check that I was going in the same direction that the seats were facing.
I actually had to go through each step consciously and deliberately, step by step. I was especially startled when the direction the train was going wasn’t intuitively obvious as I looked out the window; I’d have to decide which way the scenery was going and remember that the train would be heading in the opposite direction. But the bigger problem was that I couldn’t simultaneously keep in my mind the several needed bits of information. I would remember, for instance, that the lounge car was at the end of the train, but as I was trying to decide which direction the train was going, I’d forget where the lounge car was in relationship to the train. Or I’d figure out where the lounge car was relationship to the rest of the train, but get confused about the relationship between my car and the lounge car. It was very weird. And, then, on the way to my seat after having actually reasoned it all out, I’d get confused, stop, and have to go through the entire process again. One time I walked almost completely through one car, reversed direction, walked back almost to the lounge car, and then reversed direction again before I had it right.
And then other times, even when I got the direction right, I’d just forget where my seat was within the car. So I’d have to walk through the car looking for my suitcase in the overhead rack. A couple of times I went right past my seat it without recognizing it.
I felt confused, of course, but I was surprised that I wasn’t more frustrated. Part of it was that on the train, there’s no hurry with anything, so the confusion doesn’t cause a problem. But the other part (and I find this difficult to believe myself) was that I found the episodes fascinating: How, for instance, was it possible to look out the window yet have to consciously reason out which way the train was going? I did get embarrassed wondering what people thought of me wandering up one direction, stopping and walking back, and then changing again, but in reality, of course, no one was paying attention or would have cared.
And then just as quickly as it came on, it would be over until the next time. Mostly I’m fine and then something like this will happen. It is so intermittent.
Hi David. I have really found a great deal of peace reading about your problem from your perspective. Although I have not yet found my mind to be a problem, being 61, it is a possibility that very soon I may be observing behavior in myself the same as yours. What I find fascinating is that you can observe this behavior and describe it with such clarity. I don't know what to make of that.ReplyDelete
Good luck with your future. I hope it reverses itself quickly.
Although under much different circumstances, I can personally relate to your sense of fascination at a time when something closer to alarm might seem the more "correct" response.ReplyDelete
About 30 years ago I experienced my first migraine. I feel no pain during migraines, but I get the aura, which expands if untreated. It can overwhelm my vision. I was at work, fortunately during a slow period, when it first hit. I had no idea what was happening, but during the event I wrote in my journal of my fascination that I could not see what I was writing unless I moved my head and changed my angle of sight. I felt confused but not frightened, even though I was effectively going blind.
I like to think of that fascination as a product of my curiosity and sense of wonder, even though my detachment might be atypical. All subjective experience is exploration of one kind or another.
Thank you again for all your documentation and for your candor. In the past I've responded here as a caregiver, but this time I could personally relate on some level. I wish you well.
Your third paragraph resonates with me. I also would like to think of my fascination as due to my curiosity and sense of wonder, two characteristics I value highly. A sense of wonder has never been a strong for me, but seems to be growing with this impairment.Delete
Very interesting. I too have always been quite curious, and when I had a head injury that resulted in a significant drop in IQ as well as quite a few physical problems that took months to resolve, I found that I was often more fascinated by the interesting changes that I was frustrated by the loss of abilities. Not that I wasn't frustrated by being unable to walk or spell or write my name, I was, but I found I was fascinated by so many aspects of the whole experience. And one good thing came out of it all - I'd always been more interested in science than art, but after the head injury, I discovered I could draw and sculpt quite well, with no training. I still don't understand how or why that happened, but it has been a welcome and wonderous gift.Delete
Thanks David Hilfiker. Fascination within the confusion is possible. Thanks for translating your truth. It is possible.ReplyDelete
Hi, thanks again for communicating the perceptions going on as you go through these situations. For me, my only contributions here to the conversations now and then might be "how-to's"--one or another way I've found to navigate with brain 'issues'. Though these may 'slow down' what one is doing, in the long run they help, so today's is: On a trip by myself to Venice, I was dropped in front of the front door of the hotel by the water taxi, but had no idea where I was, and water all around complicated finding my way around. So I used my sketchbook and drew pictures of the various buildings on each side of the hotel, and then of the two buildings I walked past exiting onto the "Lido beach" by the water (so I'd know where to turn toward the hotel when I went back.) It worked, and since then, I keep a little notebook and write down either LETTERS near stores or quick pictures, to help out. [I'm that higher ed administrator who had had a TBI from a car accident over 26 years ago, who is now digesting the interaction with 'aging' on top of that. From now on, known as "Sodium".] Your columns and others' responses are helpful to me in many ways, including psychological support in 'facing' the things we face here. Peace, SodiumReplyDelete
Thanks, Sodium. Little "tricks" like yours to help with specific situations are, I think, important for working with one's own impairment. In my own case, I write abundant notes to myself, put everything in a calendar, and ask my friends to confirm appointments a day or two ahead of time. Your pictures are another possibility. Thanks for writing.Delete
It's such a great ride from Seattle to DC. I remember confusion about the location of sleeping car vs dining car vs dome-view car . . . . . but the forced "relaxation" and the calm of repetitive motion made it all worthwhile.ReplyDelete
I've been a dedicated reader of your blog for a year, and it's wonderful. We ALL make mistakes: I tried to check in for a flight yesterday, only to find that my flight was actually a day later. I'm quickly self-forgiving.
Apparently you stayed calm in this confusion of cars. I, on the other had would have been a total lunatic, nervous, and scared. But I guess you being a doctor looked at it in a logical sense. I admire you for having patience with your self.ReplyDelete
I've wondered why I stay calm in situations like these while many others, like you, are (or believe they would be) terrified of such confusion. Being confused about where I am or actually being lost doesn't seem to frighten me: What's the worst that can happen? If I can't figure it out myself, I can ask someone else for help. Unless I'm hiking alone in the wilderness, getting lost, it seems to me, isn't such a big deal.Delete
This IS fascinating! And the fact that you find it so, to my mind at least, confirms for me that you do not have Alzheimer's. I don't know what is going on in your brain, but I don't think it's a true dementia. You stayed engaged, calm, logical, observant. Both of our mothers had dementia, one very severely, the well on her way. And neither of them could have written this post at any stage of their journey. Thank you for the clarity with which you describe the inexplicable!ReplyDelete
Your point about dementia is well taken. There is an important distinction between "mild cognitive impairment" (which I have) and dementia (which I don't). They are on a continuum that goes from normal to mild cognitive impairment to dementia. Dementia is defined as when the cognitive impairment becomes severe enough to interfere with the activities of daily living. Mild Cognitive Impairment runs from almost normal (symptoms hardly detectable) to interference with daily life.Delete
Uh. . . need to proof comments a little better - "Both of our mothers HAVE dementia, one very severely, the OTHER well on her way."ReplyDelete
You are so generous to share this journey with us. At the moment I do not "need" the information, but my husband and I are both in our 70s, and who knows what lies around the bend.ReplyDelete
I am not very tolerant of ambiguity, so if I were in your shoes, it would be one more confirmation of the fact that the Alzheimer's is real, and is there, in spite of what those brain tests found. And I think I would find that reassuring. I'd rather know what I'm dealing with than wonder.
I'm so glad you're still able to take yourself out to Seattle and back!
David, I am directionally impaired since birth. I can face any direction and swear that it Is north or south or east or west. I do not have trouble with up and down however, so I became a professional pianist!!!Delete
What an incredible blog. Again, you were describing me, and so far I have no cognitive impairment. I was born this way!!!
Seems I type too fast, too
I am curious whether you have been tested for Valley Fever. I don't think confusion is USUALLY a symptom, but I happened to see a USA Today article yesterday that interviewed a guy whose primary symptom was episodes of confusion, and reading this account today made me wonder.ReplyDelete
I have been enjoying your blog for several months now. Thanks for putting a human face on mild cognitive impairment, whatever the cause!
Many many infections can cause meningitis, which often presents as periods of acute confusion. Short-term confusion (less than six months) is usually distinguished from long-term impairment (over six months) in that the former will resolve if the acute infection is adequately treated. Some infections, like Lyme disease, can cause a dementia, but the Mayo clinic does not include Valley Fevers (Coccidiomycosis) a cause of dementia. Everything is possible, but I -- wanting to be judicious of scare medical resources -- have not asked to be tested for Valley Fever.Delete
A good friend told me about your blog and knew that I would be interested. My husband has not been diagnoised with Alzheimers, however, I feel confident he is headed in that direction. His father, and 3 of his father's sisters died with this desease. My husband had a serious stroke 10 years ago which left him with only partial use of his right side and he was right handed and a carpenter/handyman. I was told at that time he would develope dementia and he did almost from the beginning. It has a slow process, but his memory is getting much worse now. Please do not stop your blog even though you repeat or do not see much change from day to day as you did in the beginning. I make a copy of each email for my husband to read. He wants to talk about what is happening to him and reading your blog is helping him understand the changes even more. My Mother-in-law never discussed with her husband what was happening to him, neither did my Mother discuss my Father's Alzheimers with him. My husband wants to know everything he does that are different. His hardest thing to accept is not being able to do repairs around the house with all is power tools. He can not use his left hand to do much at all & his right hand is useless. If he uses a powersaw, I have to hold his right hand to keep it out of the saw.ReplyDelete
I have commented too much, but just want you to know that we appreciate your blog and what you are doing.
I'm glad the blog has been helpful to you and your husband. Your husband's wanting to know everything about the disease and everything about him that is different from others, is a good sign he is accepting the disease for what it is. My own personal opinion is that our acceptance of our disease and our diagnosis makes the symptoms of the disease much easier to live with.Delete
Just a medical note: Vascular dementia (sometimes called multi-infarct dementia) is a very common cause of dementia that is distinct from Alzheimer's. Given that your husband had a stroke and that his cognitive impairment began about then, it would be very likely that his dementia is, at least part, vascular dementia due to blockage of the small blood vessels in the brain (many little strokes). The symptoms of vascular dementia and Alzheimer's dementia can be similar and sometimes hard to differentiate from one another. And a person with vascular dementia may also get Alzheimer's. But you might want to make sure that Alzheimer's is involved. If it's purely vascular dementia, the prognosis is different from Alzheimer's and some measure of prevention is possible.