New to the site?


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.

Tuesday, April 22, 2014

Bus Schedules

Washington DC
Between a viral infection that has knocked me about the last several weeks and preparing for a lecture at the Michigan State University medical school, I haven’t been able to blog.  Fortunately, I did feel better enough for a few days last week to take the train/bus combo to Michigan and fulfill my responsibility to give the lecture, but even on the way back I started to feel weak and sleepy again.  It’s gotten a little better, but it’s time to see a doctor other than the one looking out at me from the mirror.

I’ve wondered two or three times whether the fogginess and weakness that has accompanied the other flu symptoms is a result of some further damage to my brain.  I doubt it, but I can’t help thinking about it.  The most likely cause of my cognitive decline is vascular (those little strokes), so—although it’s unlikely—any sudden change in my mental status could signal a sudden worsening of my cognitive decline.

Even without the current fogginess, the impairment seems to be worsening slightly over the past several months.  Last week I was trying to make a set of bus reservations.  Megabus can certainly make travel inexpensive, but you can only make reservations online.  They also make you figure out your own connections if you have to change buses.  I was trying to make reservations to travel from here in Washington to New York City then transfer to a bus to Albany NY and make the return trip a week later.  I had to:
a) figure out my desired arrival time in Albany,
b) figure out the needed departure time from New York to Albany, and
c) then go back and figure out the Washington departure time to get to New York on time for the Albany bus.  
d) Then I needed to reverse the process a week later.
It sounds a little complicated when I write it out like that, but this kind of task has never been difficult for me.

I just couldn’t do it.  I would get the day of the week confused, the arrival and departure time in NYC confused, forget when I wanted to leave or when I wanted to get there.  Several times I had all four reservations about to finalize but then I double-checked and one of them had the wrong time or even the wrong date.  Then even those that were right started to look like they were wrong, and I had to go through the entire process in my head to double-check it.  I should have written it all out on paper, I suppose, but I got so frustrated that it didn’t even occur to me.  After forty-five minutes, I finally got the trip from Washington to New York right and the trip from Albany back to NYC right, but I couldn’t get the other two.  I finally had to ask Marja for help.

Before my cognitive impairment, it would have been humiliating to tell Marja I couldn’t do it, but at least that is no longer true.  We both know what the trouble is, so she was happy to finish the task.

Having to hold several related things in my mind while working on each separately is the most frequent manifestation of my cognitive decline these days.  Something similar happened trying to compare two almost identical copies of my speech; there’s a not-very-complicated automatic procedure for that exact thing in Microsoft Word, but it took me the longest time to get the correct documents in the right order and then—as I went through the combined document—I kept getting confused about which option from which document was the one I needed.

It frustrates me:

  • I can’t tell whether my confusion is really getting worse or it just seems so. 
  • Almost every time I try to describe something like the ticket episode above, the other person will say, “Well, I’d get confused, too.”  I just nod my head.
  • And then I remember my intention to let these kind of useless comparisons go.  I’m not scared of the future, so why let myself get worked up about minor changes?

In September 2012, when I first received the diagnosis of “almost certain” Alzheimer’s, I would have been extraordinarily grateful to know that in April 2014 I’d be worried about such minor problems as these. 

I could just remain grateful and take each day as it’s given.

7 comments:

  1. Good to have a Marja in your life. Mine is named Dave. He reads all my complicated documents, like insurance policies or software manuals, then lets me ask questions, sometimes the same one multiple times, until I understand what I need to know. Or he just walks me through it when I can't remember enough of the steps. Then walks me through it again the next time. I'm so glad he is a patient person.

    ReplyDelete
  2. Anonymous4/23/2014

    Glad to hear you're back--thought the holidays had "caught your tongue."

    On the basis of my own previously-noted experience: I had to re-visit certain categories of experience and generalize and teach myself some alternative arrangements. This way, the 'lost' abilities belong to "categories" rather than a long list of problematic things each day. At my office, I had no problem thinking about budgeting, but I had someone else do the spreadsheets I had done myself before, because "sorting" between columns and rows had become difficult. Some other categories I changed:
    * travel arrangements related to date, time, transportation type, and mode of organization (phone, computer, etc.)
    *DATES, particularly with financial issues tied to dates, e.g., check writing, car inspections, etc. Making these adjustments mentally is similar to those physical adjustments we make as we age, also--just as I no longer ski because the consequences of falling are worse than they were 20 years ago, I've tried/had to limit similar mental problem areas. I may WANT to ski again, and to be able to sort and remember certain things, but the re-adjustments and categorizations at least allow me to 'live with' my anxieties about it all. I will (presumably) ALWAYS have to have a specific place to put my keys, leave kitchen implements in plain sight, review lists of names before conferences, etc. With a baseline, I can then monitor any NEW things beyond my already-generalized ones, reminding myself that "Not ALL of me is kaput!"
    Thanks for your continued contributions!
    Peace, Sodium

    ReplyDelete
    Replies
    1. Thanks for your suggestions, Sodium. I like the idea of categories. the worst thing for me is when I have to keep several things in mind at the same time, particularly with scheduling. I'm not sure I have to give them up completely yet, but I can catch myself early if I'm having trouble in that area and not continue to hit my head against a wall.

      Delete
  3. I am beginning to have problems when I drive, directions etc, even though I don't think I have AZ and I have lived in the same city for 40 years. Since I am going to get a newer car soon do you think I should pop for the extra cost of a GPS system? I have avoided that in the past because of the cost and because my late husband felt it made the car a target for thieves. Any ideas?

    ReplyDelete
    Replies
    1. Hi Cathy. Don't get a built-in GPS system, get a separate one that plugs into the car's cigarette lighter opening. These are much cheaper (on the order of $100) than built-in ones, much easier to update, and you can unplug and hide them in the glove compartment if you are worried about thieves. Also, you can take the device and its instructions (and perhaps a helpful friend) somewhere other than your car to practice until you feel comfortable with it.

      And, finally, if you find that it isn't helpful to you, it will make a nice gift for someone else.

      Delete
    2. I can't respond to your question about GPS although ME's advice sounds good to me. I would caution you, however, to evaluate whether you're safe to drive (and you the individual are the worst judge of this). If you yourself think you're safe, ask another unbiased person to drive with you. You may find some help in my blog post of May 15, 2013, "The Question of Driving," http://davidhilfiker.blogspot.com/2013/05/the-question-of-driving.html.
      The other question I would ask is whether or not you've had a neurological work-up for cognitive impairment. You say you "don't think" you have Alzheimer's, but if you're having trouble driving or with directions, you might at least consider formal evaluation.

      Delete
    3. A lot of us have a ready made google maps application on our android or smart phones. I put in the destination, and it works just like a store bought GPS. She even has that English accent that my brother's GPS has.

      Delete

If you would like to be notified whenever someone comments on your comment, click on "Subscribe by Email" underneath your comment.