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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.

Monday, March 03, 2014

Oh Dear!

Washington DC

I spent several hours this past Friday trying to write about the personal implications of the two studies I’d posted about in the previous ten days.  One follows people with mild cognitive impairment (MCI) who revert to normal and are then likely at some point to revert back again to MCI or dementia.  The other follows people with subjective cognitive decline (SCD) who are also quite likely to progress to deeper cognitive impairment.  Since I am a little further on than the people in the either study, my idea in writing last Friday was to show that my chances of progressing to greater impairment were even greater than the folks in the studies and to ruminate about how that has left me feeling. 

As I was writing, however, I wanted to check a link I’d used in the post on people with MCI.  While looking for it, I was dismayed to discover that what I had written over several hours last Friday was almost exactly what I’d written at the end of the post on the MCI study.  That had been only ten days before and I’d spent a lot of time on it.  But now I’d forgotten that completely.  Oh dear!

This is the kind of event that indicates to me how much I’ve declined.  Yet I find myself hesitant to write about it here.  First, I’ve written so much about my memory impairment that I wonder about the value of the repetition.  Second, whenever I talk to others about memory issues like this, I almost always get the same response, “Yeah, I know just what you mean.  It happens to me all the time.  Why, just the other day, I was ….”  Although I don’t actually say it out loud, what I feel like saying is, “Well it may normal for you, but it wasn’t normal for me.”  Third, it feels as if I’m being defensive in insisting on my impairment in the face of the normal neuropsych exam in August.  Several people have written in essence: “Why don’t you just get on with your life instead of concentrating on the negative?  You seem pretty attached to your diagnosis.  Get over it.”

When I think more deeply about my hesitancy, I realize the flaws in my thinking.  The purpose of this blog is to chronicle the course of my impairment. So whatever happens is part of the story, even when I go on and on about my complaints.  I’m not a good judge of what will be meaningful for others.  My principle behind writing for the past year and a half has been that if I’m interested in a topic, then I write about it.  Whether it’s helpful to others or not, they will have to decide.  Further, I’m sure that my situation is not unique.  Others are certainly going through similar confusion, and my telling my story, however boring I think it may be for others, may be of interest, perhaps even of help, to those people.

But these deeper thoughts justifying my writing don’t much change my emotional reaction, which is to question the value of what I do.  I’m not really fishing for reassurance; I just want you to know.

20 comments:

  1. I have never viewed your blog as going on and on about complaints. You have shared your perceptions of the changes in your cognition -- most of the time with wonder and awe. Your blog has appealed to many of us, not because of the "truth" of your diagnosis, but because it is a beautiful illustration of how we handle life's changes and transitions. I appreciate your honesty, your clarity, and your desire to find benefit from what you are experiencing. Yours is the first blog I look at everyday.

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  2. Yes; write for you and let us make of it what we will. Our attempts to support one another may often miss the mark but at least we know good intent is there. And good intent can be helpful whatever else goes wrong.

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  3. Anonymous3/03/2014

    One of the most frustrating part of head injury-related cognitive impairment for me is the inability or refusal of those around me to take my "impairments" into account. It feels like "not being heard," as people also say things like, "Well, you could lose 50% of your abilities and still be more knowledgeable than other people," or, as you mention, "I have those moments myself." I have tried to get friends and family to take this into account when speaking to me, instead of saying, for example, that book you mentioned yesterday was really interesting, to say, "that book about psychology...or history...or literature" you mentioned yesterday…" Because I probably don't remember exactly what book we talked about yesterday just by the category "book"--I need prompts, and then things fall into place. But it gets very tiring to constantly ask "who" "what" "when" etc. So it would be really helpful if people would 'get it"--and help me to compensate, rather than to have to constantly explain, "I don't remember". With a few prompts, I can remeber. So it somewhat resonates with me when you mention that people often just want you to "move on" and not concentrate on the issue. Yet, that's exactly the issue, as I see it. It's the equivalent of that old joke, "Other than that, Mrs. Lincoln, how do you feel?"--the whole point is how one feels/operates WITHIN the situation we find ourselves in. And "prompts" help one to compensate. So thanks again for your continued sharing of your wrestling with these issues. Peace, Sodium

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    1. It is certainly frustrating. I've finally come to recognize, however, that I have only the energy to get a few people close to me to understand, to remind them often enough that they finally do get it. At the same time, I've come to see how hard it is for others, too. It's embarrassing for them to treat you as if you don't know something when you actually do, Embarrassing to have to ask you ahead of every question to you. Embarrassing to treat you as if you know something when it becomes clear that you don't know. So THEY need help that a) assists them in knowing what to say, and b) normalizing our impairment so that they can ask about things like that. One of the best ways I've found to do it is to be perfectly matter-of-fact in my response when people assume I know when I don't. "Could you remind me of what you're talking about? This 'cognitive decline' (or however you name it) means that I can't remember most things like that." Eventually, the only real ways they'll learn what you can or cannot do is by taking the chance and letting them know -- each time -- what they can assume and what they can't. I have to do it time after time. Frustrating ... but it's just the way it is.
      Thanks

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    2. Well said, Anon. Perfect response, David. Frustrating but the way it is. (It also the way that others are incredibly thick.)

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  4. David, I have been following your blog for some time but have never commented before. I felt compelled to this time though. This is your blog to do with and use as you please. To write about anything you want to write about. Us readers have a choice, we can read it or not. I too have a blog, I use it to vent, let off steam, complain and all sorts of things. It is my outlet, my journal. I find that if I can get things out of my head and onto paper I can move on. I do it for me, no one else and I don't care what anyone thinks of it. Sometimes I go months without making an entry.
    Please carry on and use your blog for you. You will always have followers, your blog is very interesting and insightful. You could even turn off the option of comments if you are worried about what people are saying or thinking. It's your blog David to use as you see fit.

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    1. Thanks, Maureen. I just need to remember what I already know. You all remind me, however. No, I'm not going to turn off the comments. It's just too much fun to be in contact with you.

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  5. It is not normal for me either, to have spent hours writing on a subject that I find later to have already written. I find the quality of my writing is not as academic, nor the content as perceptive.

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  6. I echo Maureen's sentiment wholeheartedly. Even if you write something twice - that's ok. I always learn something. Again, this is your blog, your feelings, your thoughts and your process. It's all ok. AND interesting. Validating. Useful. Even if the reader doesn't have memory impairment the process you have been through with doctors and testing can be applied to all other illnesses. I'm sure many of your readers, myself included, have experienced conflicting doctor diagnoses (not sure of spelling here), misread or "under read" (I love that term - its when they really screw up the test reading) tests and many other frustrating experiences with our medical system. I recommend the book "How Doctors Think" by Jerome Groopman, M.D. for a better understanding of why doctors think differently and have different styles. Its helped me enormously deal with the western medical world.

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    1. Thanks very much for the reference to the book by Jerome Groopman. I haven't read it, but if he can shed even a little light on how doctors think it could be of huge benefit. For various reasons I have had to spend time considering and explaining the difference between the way I think as a doctor and how I see others thinking, even those close to me. It is a different way of thinking, informed by years of training. I'm not sure we doctors can ever go back to previous ways of thinking. (I've been out of practice for over twenty years and still feel defensive when people criticize doctors for what is actually an inability to cross the language barrier). I do think it's possible (and important) for doctors to recognize that there is a language barrier (or a "mode-of-thinking barrier) between us and those not trained in science, and it's up to US to speak the commonly accepted English language and not expect our patients to understand our language.
      As an example I would offer that we physicians often forget that our MD language actually assumes a statistical way of thinking. If I say, you've got [whatever], I as a doctor realize that I can never be certain what you've got, but that there's only a certain likelihood that you have whatever. If the likelihood is high enough, doctors usually say "You have whatever," which may lead you to think that the doctor is saying "I know for certain ..." when the doctor can't know for certain. When I was practicing, I tried mostly to say, "You probably have [whatever]." I don't know if it helped my patients, but it made me feel better when the unlikely happened ... as it inevitably did over thousands of patients

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    2. Hi David,
      I think you would really like the book. It explains the different styles of thought and critically thinking taught at the medical schools. All medical schools seem to have their own style and doctors are trained differently. I think the author discusses 4 or 5 styles and how they can lead to different outcomes of diagnosis. It was a fascinating read. Particularly interesting (and scary) was the chapter on radiology and how they are read. Mind boggling. Here is a link at google books for an excerpt: http://books.google.com/books?id=RjY2iwqIuIwC&printsec=frontcover&dq=how+doctors+think&hl=en&sa=X&ei=v9YYU_aWK8P0kQe_7YDAAg&ved=0CDYQ6AEwAA#v=onepage&q=how%20doctors%20think&f=false
      Enjoy! Best, Carrie

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  7. Anonymous3/04/2014

    When you know something is "not right" with you, it is not right. That is the challenge with MCI, no matter how many people pat you on the head... I look forward to each and every post. You give words to my concerns. Thank you.

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  8. I don't have time for a long comment today, but I have been echoing what others have said. Those who tell you it's time to "get on with your life" fail to understand that this IS your life. In many ways, I would say that they are worse off than you. If I were in your position, I'd be disinclined to pay them any more compassionate attention than they are able to give to me. Zero.
    Thanks for this blog, David.

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  9. I, for one, find it very refreshing to hear from a physician who is not so completely sure of himself. Having dealt with numerous doctors over the last years (my husband had multiple health issues) I know that the norm is to state positively what the condition/diagnosis/remedy is. The fact that you can question yourself in a public manner says a lot about your integrity and the soundness of your thinking.

    But please don't feel the need to apologize for anything you write or intuit. As others have said, this is your blog and the things you are going through are all legitimate and worthwhile issues to explore.

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  10. I'm not sure why I feel moved to tell you this. My significant other had been taking Lipitor and was experiencing a lot of aches and pains. He is 65 years old and is also diabetic. His doctor discontinued the Lipitor and within a month he noticed a lot of relief. However, I had been concerned that he was either developing dementia or Alzheimer's or that he didn't have the common sense that God gave a goose. He seemed to have forgotten things like how much soap to use in the washing machine and forget about sending him to the store without the actual packaging from the product you wanted. More than once he had done things like not turn a stove burner all the way off. He has been off the Lipitor for two or three months now, and I have noticed a significant difference in his cognitive behavior, about 80 percent over the past few weeks. This may be something to look into.

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    1. I have no special expertise in Lipitor or the other statins prescribed for high cholesterol. While there are plenty of accusations floating around the Internet, I could find nothing I considered reliable indicating that Lipitor worsened or caused Alzheimer's. In fact, the information I did consider reliable suggested that there might be a PROTECTIVE effect of Lipitor on dementia (not necessarily Alzheimer's). Since high cholesterol is implicated in cardio-vascular disease and Lipitor is prescribed to lower cholesterol, it makes sense that Lipitor might confer a protective effect against vascular dementia (caused by small strokes). The studies I read about did not separate out dementia by type so there's no way of knowing whether it affected Alzheimer's, but it certainly makes sense that it would lower the incidence of vascular dementia while I can see no reason for believing it would help Alzheimer's.

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