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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Thursday, August 01, 2013

My Disease Progression

Washington DC
I’ve noticed some symptoms getting worse; it’s not much worse but still I notice it.

Some symptoms don’t bother me much.  Several days ago I was looking for two specific files in a list.  I knew what was in each file, but I couldn’t remember or even guess the file names.  All my file names have some relationship to the subject of the file, however, so that I knew that if I checked through the long list of files, I’d find it eventually.  Since there were two different files I was looking for, I decided to look for both at the same time.  But I couldn’t.  I couldn’t keep in my mind the subject of both files while at the same time looking through a list in which I had to match a name to the subject.  I had to keep three things in my mind and I could only manage two.  I went through the list one at a time, however, and had no trouble.

Other symptoms are more unusual.  I was wearing a very light nylon backpack as well as my usual belt pack when I came home from a long bike ride.  I’d put my keys in my belt pack, but as I stood at the front door with my bike leaning awkwardly up against me, the keys weren’t where I’d put them.  I searched through the four compartments of the beltpack repeatedly.  Repeatedly.  I kept searching—it may have been five full minutes—because they had to be there.  Finally I remembered that I had the nylon backpack on, so I reached back, felt the keys in the backpack and started to take it off to retrieve them.  The next thing I remember was that I was searching through my belt, unaware that I’d already found the keys in the backpack.  Again, I perseverated with the beltpack for what felt like five minutes, then thought (as if it were a new thought) about the possibility that the keys were in the backpack and only then realized that the backpack was slung half-way off one shoulder with the keys in it.  I’d completely forgotten what I was doing halfway through taking the backpack off.

And other symptoms are just strange.  The other day I was in the kitchen and heard a symphony being played outside in the alley.  Boom boxes travel frequently through the alley but I don’t remember any symphonies.  And the music stayed in one place, seemingly outside our window.  I looked out and couldn’t see anyone or any source of music.  I asked Marja, “What’s that music?”  “I don’t know,” she said, “I don’t recognize it.”  “No, I’m asking where it comes from.”

She looked confused so I said, “What’s the source of the music; it seems like it’s coming from the alley.”

With some puzzlement, she said “It’s coming from the radio.”  Of course, it was coming from the radio that has been in the same place for years, that is always tuned to classical music on public radio, and that I had had to lean over to see into the alley.  But I’d not recognized it.  Bizarre.

On the other hand, there are some things I haven’t lost.  I’m noticing again that what I might call “wisdom” has not really declined, at least not that I can notice.  I can still participate meaningfully on the church leadership team, provide mentoring to some other people in the church, offer opinions that friends seem to value.  I just returned from giving a talk about Alzheimer's to a group of social workers, and I doubt that they would had noticed if they hadn’t known my diagnosis.  I’m aware of intellectual, cognitive slipping but not loss of wisdom. 

I’ve always wanted to be a “wise old man” and I was getting there.  After my diagnosis, I grieved the potential loss.  Now, it seems, I can keep the role, at least for a while longer.

It’s a fascinating process.  Intellect gradually disappears but relationship can flower.


  1. You call this "fascinating"...I call it scary as all get out! Your positive attitude will serve you well in the years to come.

    I pray for you and all other victims of AD.

  2. Anonymous8/02/2013

    Great blog - thanks so much for sharing it. Perhaps you have covered this elsewhere on your blog, but do you know if there's a link between Alzheimer's and prior years of depression (perhaps a similar underlying biochemical cause)? Also, have you noticed any changes in your dreams? I know that people with some kinds of dementia have a history of changes in their dreams, which often pre-date the onset of any other symptoms by as much as 10 years (i.e., more vivid, often violent dreams).

    1. My understanding is that the symptoms of depression can mimic Alzheimer's and thus lead to a diagnosis of Alzheimer's when the real problem is depression. And, of course, people with Alzheimer's sometimes get depressed. As I understand it, however, there is no causal connection: Depression doesn't cause or even increase the risk of Alzheimer's disease.

  3. I spent more time than I like to admit trying to highlight a section of text to copy and paste. Failure after failure until I gave up. Thought there must be a lock on the doc or something.

    Later in a different doc had no trouble and suddenly realized I was holding spacebar down as I highlighted text. In failed effort I had been holding down the control key.

    I'm so reluctant to have to think about and write down all the computer moves I do by memory/instinct, many of which have no clear reason, i.e., contr - alt - delete.

    At same time more and more MUST be done online, from insurance, pensions, credit cards, reservations to interactive exchanges with my GP. What will happen when I can't do all?

    So, I try to simplify and get as much on auto pilot, auto payment, auto renewal as possible. I also go to my local bank to do, duh, local banking as well as having them know and help me in other areas. If I need a notarized signature, I get it there, and so on. I know if I were to go there and explain that I couldn't find ID and wallet, they would give me some funds to get gas and food, but would not let me empty my accounts.

    As a person living alone, w/o family, these are some of the ways I'm trying to take care of myself.

    1. Thanks very much for sharing some of the ways you are taking care of yourself.

  4. I've been thinking about these changes that you have had. Maybe they are all cognitive declines from AD, or maybe some of them are normal aging. We all have declines due to shrinkage of the brain. I would maybe suggest that the losing of your keys (which you have done before) is an aging decline. And the music on the radio may be from AD. Because you've always had the radio there. I've lost my keys, I've lost my glasses for five minutes, until I realized I had them perched on my head. Somebody once told me that normal aging is forgetfulness, and dementia is different. you don't forget your keys, you forget what keys are. I once had a patient in clinicals that was an elderly man of 104. I handed him his toothbrush with toothpaste on it, and he said, "NOw I'd use this if I could remember what it was for." I helped him put it in his mouth, he remembered and brushed his teeth like crazy because it was a habit he had his whole life. Women with extreme short term memory loss, sit in the beauty shop like they were 30 years old. They listen to the beautician, they do exactly what she says, if they are sitting under the dryer, they don't leave, or mess with their hair. They read a magazine. These are women that would never sit still that long.

    A few months ago, I was trying to write in a letter directions to my house. And the last street before you turn into my block, is Washington. I was writing, and I totally drew a blank. Is it Washington or worthington? Drew a blank for about three minutes. Then thought, "That's stupid, of course its Washington, why wouldn't I remember that?" I just assumed it was normal aging. Because that's what I hope it is. But we are all going to decline with time. What's normal, and what's AD is the question.

    1. One of the problems with early Alzheimer's is that so many of the symptoms DO seem like things that anyone does all the time. Losing keys for instance ... but normal people don't lose their keys, find them, and within the five seconds before they can retrieve them forget that they found them.
      And even if a symptom does happen to people without dementia, when you have the diagnosis, you don't know whether this one is dementia or normal aging.
      In the end, I suppose, it doesn't matter. You try to live with the disease as best you can, and it doesn't much matter whether this symptom or that is due to the dementia or not. Once the diagnosis has been made, there's not too much sense in a catalog of symptoms ... unless (as in my case) I want to let others know what the progression of this disease looks like.
      (At least that's the excuse I give myself for watching my symptoms so carefully.)

  5. Hi David,
    I always read your blog and find nuggets of awareness in it. I'm glad you're writing through your challenges. You mention about not keeping several words or thoughts in mind to find a file. Searching for files is always a challenge for me because I must use different keywords to find what I'm searching for and if I don't write down the keywords, I end up searching for the same words and losing time.

    So when I think of a keyword to search in my files, I write it down and others as I think about what I'm trying to find. Thanks again, David, for writing your blog!

    1. "nuggets of awareness"...what a lovely, apt phrase. That is exactly what the good doctor is providing to us :)

  6. I was wondering if when different situations come up if you could write what you would like the person supporting you ie wife, children, friends can do or not do to help you. I am sometimes at a lose as to what hubby would like me to do to help him handle a situation. Sometimes I show him and other times I don't bring it to his attention just fix it myself and other times I ignore what he has done so as not to upset him. But I don't know if what I am doing is the right thing. He is denial so asking him isn't going to work.

    1. Amber:
      I'm afraid I can't be of help on two counts. First, my symptoms haven't developed to the place where I need that kind of help much. But more importantly, I don't think anyone can know for sure what will help your husband if he can't acknowledge that he needs help. You're left guessing with only trial-and-error to help you out. Perhaps other readers in the same situation would have some ideas.

      In my very limited experience so far, I can't expect Marja to know exactly what's right for me unless we can talk about what works and what doesn't. Occasionally she will try to help me when I don't need it or want it, but we both have to be patient with that because it's not possible for her to guess right every time. So I need to feel okay when she tries to help and I don't want it; on the other hand, I need to ask for help when I do need it.

      I wish I could help you more.

    2. I happened to come across this just a few days ago. Perhaps it will help.

  7. My hat is off to you David for the courage to write this Blog. My wife and Had her mother live with us in the last years of her life with Alzheimer's. I'm positive that your writings here will be of great help to many. And I hope you enjoyed the BWCA we are from Minnesota know living in Arizona


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