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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.

Tuesday, September 17, 2013

Abstractions

Washington DC

I was reading a book on Christian spirituality last night before bed when I realized that I was understanding very little of it.  I got the general principles, I suppose, but much of what the author was writing was too abstract, and I found myself just reading along, understanding all the words, all the sentences, but not really getting anything out of the reading.  I hadn’t read much by this author before, so I blamed it on his writing style.

Then I picked up another book on my nightstand, this one on Buddhist spirituality by a neuropsychologist who writes about brain structure and function, how they are involved in happiness and suffering and their relationship to Buddhist practice. I was fine (even found it very interesting) as long as he was writing concrete descriptions of the brain: its gross anatomy; the 100 billion neurons, each with 5000 connections to other neurons; the relationship between the structure and function of the brain to our suffering or happiness; and so on.  I understood these concrete details, but, as soon the chapter veered into the abstractions behind them all, I recognized again that I was getting nothing out of the reading.

It wasn’t that these books were too complex for me to understand.  The concrete details of the neurology, for instance, were just as sophisticated and complex as the abstractions of the spirituality (if not more so).  But the neurology was tangible and material; the spirituality intangible and conceptual.  It was the abstractions behind the Buddhist practice (and Christian spirituality) that got me.

I’m very familiar with both Christian and Buddhist spirituality and have enjoyed such books before with no trouble understanding the concepts.   Something in my brain has changed.  This change is not just about the impairment of memory, at least not directly.  This is about the impairment of comprehension.

Another example of my impairment showed itself on Sunday.  In our small faith community, as I’ve mentioned before, we serve each other communion.  We line up in one of four separate queues, and each of us receives the bread and the juice from the person in front of us.  After each one finishes, he turns and serves the person behind him.  This past Sunday I received communion from Wendy in front of me but then walked directly back to my seat without serving my wife Marja who was behind me.  I’ve certainly never done that before!  Marja told me later that Wendy and she just looked at one another, tacitly acknowledging that each understood the source of my confusion.

A few minutes after I’d returned from the line and sat down, I realized what I’d done.  I noticed that I didn’t feel embarrassed by what would have otherwise been very embarrassing for me.  I knew that Wendy already knew what was behind my forgetting.  She didn’t have to wonder what was going on, to check in with other people to see if they had noticed anything, to be a little embarrassed the next time our eyes met.  Both she and Marja understood; they could shrug and move on.  I could shrug and move on.  I was once more grateful that I’d shared my diagnosis with the community before things like this started to happen.

Sometimes I wonder if I’m just imagining or at least exaggerating this cognitive impairment.  Sometimes it’s obvious I’m not. 

Either way, a friend has reminded me, I will not find equanimity in getting caught up in the debate.

25 comments:

  1. Your blog enlightens and humors me because I learn how to think differently about situations and my own oddities. Sometimes, the books we read may pull us in, yet later in the book, we may think this book is crap. I read a lot of different non-fiction books and some beckon me right now all the way through and some I must put away when I notice I don't resonate with it. Maybe it will in a few months when I'm evolved enough. Thanks for sharing your perspectives!

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  2. Hi David,
    Perhaps the balance is not to feel judgement. How honest you are with your community, why can't everyone be like that. You were the topic of conversation this week as I launched a new Neighborhood Memory Cafe in Dallas, TX. The Snellers of Dallas have been great support Lee suffers from Alzheimer's and has his time to helping others like you do. What makes the You's and what makes the others? Such a battle as I try so hard to get people to walk away from the sigma to find balance and support.
    Sharyn

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  3. Anonymous9/18/2013

    Thank you so much for sharing your journey. I believe that my husband has Alzheimer's We have talked openly about it but he is still not ready to get a diagnosis. In addition to memory problems, he is having cognitive issues like you describe. I often have trouble remembering this and I get frustrated because I expect him to be the same as he always was. Your blog helps to ground me and gives me insight into our changing relationship. I was hoping that he would be interested in reading it too but he is still working through the denial. I feel alone and helpless sometimes because we have shared this with only a couple of people. Your blog is a bit of a lifeline and I thank you.

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    1. I hope at some point that your husband will recognize that telling others is not so much for him as for you. You are the one who most desperately needs the support.
      I wish you well.

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  4. Anonymous9/18/2013

    Thanks.

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  5. Anonymous9/19/2013

    I am so grateful to have found you and this helpful, insightful blog. My husband, age 59 has been diagnosed with early dementia, and other complicating factors. I am eagerly looking forward to absorbing your blog and all the help and support there is here. Thanks for sharing. Kudos to your wife!! Our best to you in your journey ahead!!

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  6. I, to, am grateful for finding you and thank you for sharing your true and personal experiences. My dear Mother had Alzheimer's for 16 years and her sister had the disease as well. Every time I forget a word or get lost in the middle of a sentence or forget why I went into a room, I nearly freeze with the fear that I have the dreaded disease. Would you recommend that I be tested or just continue day by day?
    Again, thank you for sharing your story and progress.

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    1. I am feeling more and more strongly that early testing and diagnosis is important. There are a number of basic reasons.
      1. While Alzheimer's is not treatable or reversible yet, there are other forms of cognitive impairment that can be diagnosed, treated, and reversed. (I was just talking with a man yesterday who had been becoming more and more impaired until he was diagnosed with a mild (but progressive) case of so-called "normal pressure hydrocephalus." He got treatment, things got better, and he's fine. You can't diagnose those diseases without a significant medical evaluation.
      2. If you do have a progressive dementia, there is lots of important planning that needs to be done and is done so much more easily if you're competent to take part.
      3. It's important to tell at least the people close to you and even those not so close. The worst part of cognitive impairment is the isolation that comes as other people notice your decline, don't know how to relate to you, and gradually fall away. I believe that working with family, friends, and wider community before you're completely demented will make it much more possible for some of them to stay with you and decrease that experience of isolation. They're going to notice anyway, so you might as well let them know.
      There's one other reason I'm forgetting (of course), but none of this is possible without early diagnosis. Don't be afraid of it. Having the disease is easier than worrying about it, at least it has been for me ... so far. There'[s nothing to be gained by waiting.

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    2. Thank you for letting me know your feelings on this. Everything you wrote makes perfect sense and so I will not be afraid, now, to get early testing.

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  7. Anonymous9/20/2013

    I am also very happy I found your blog. My dad have some kind of dementia, it is called, in spanish "Degeneracion Lobar Fronto Temporal". I will keep reading your post, and I hope you keep strong and enjoying life!
    from Panama city, Panama, C.A.
    Luis A. H.

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  8. Anonymous9/20/2013

    Dr. Hilfiker:
    I found this blog through an article I was reading this morning about Alzheimer's Disease and its impact. I have to thank you for your rare insight into the disease. Few people are equipped to describe their experience with the disease in such detail, from a scientific perspective. I find this very helpful because what I find most frustrating about caring for my mother who has Alzheimer's is that her speech is affected, and she cannot tell me how she is feeling or why she cannot understand certain things. This leads to a lot of arguments, and nobody likes an argument! I actually feel as if the arguments exacerbate the condition, whether it's related to blood pressure or microbleeds or whatever...
    I think that being able to read about how your "processing is affected" is going to be very valuable for me. It is so generous of you to do this. You are changing the world with this. At least MY world. Thank you for your courage.

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    1. Thanks for your feedback. I might recommend the book Contented Dementia (which I've talked about in a least two posts here; just put the title in the search engine above on this page.) It gives a theoretical and practical approach for "getting into the head" of the person with AD and trying to experience life as they are experiencing it. It's not a panacea, but it can dramatically help communication -- in both directions.

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  9. For someone with Alzheimer, you write better than me and can still perform sound analytic thinking, above average, I'd say in the top 5 percentiles of the US population. If that's what Alzheimer is all about, I'd be happy to have your disease.

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    1. Well, thanks for the compliment. I've been a writer, often professionally, for the last thirty years and I'm still in the early stages of my disease, so I would hope that I would be still able to write well. I've certainly lost some of my ability to write, but I'm glad it's not too noticeable at this point.

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  10. Anonymous9/20/2013

    David: You have made my day! Thanks so much for sharing; so many people need to read your words.

    I live in a CCRC (continued care retirement community). I still live in independent, so I have plenty of time to think about what I want to do with the rest of my life. I have long-term depression, PTSD, anxiety attacks, etc., but I am continuing to work on these and I am beginning to believe that the "light at the end of the tunnel" is not that of an oncoming train.

    I regularly visit friends in the skilled nursing area, and I frequently interact with residents who have alz. I am so very grateful to have just found your Blog. I have barely peaked at it, but I feel connected already. It is exactly what I need.

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  11. thank you for this. i am a caregiver for someone with Alz. have known her
    and her family for years. she now is in a residential setting. am going to
    go back to the beginning here and read it all, then read ongoing with such
    gratitude. this is really Important. again, thank you.

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  12. Anonymous9/20/2013

    Thank you for your wonderful blog. When I saw your blog mentioned in a Google news article from CBC news today I thought I would get some insight into my mother's experience with PSP. Oddly enough, I found today's post reminded me of my nephew with Asperger's syndrome. He is very smart and is majoring in one of the sciences in college, but he is very literal and doesn't do well with abstract concepts. He has found that one of the ADHD drugs helps him focus as his mind tends to wander. It makes me wonder if those drugs would help you. I am not any kind of expert so I don't want to create any false expectation but I find myself wondering if you should ask your own doctor.

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    1. You're certainly correct that the difficulty concentrating is a prime symptom of ADD and ADHD, and it were only that, I'd have it checked out again. But take all my symptoms together and ADHD become highly unlikely.
      One of the helpful parts about having an evaluation by and receiving ongoing care from a neurologist is that these other possibilities can be ruled out by history, physical examination, lab work and radiology. As a former doctor, I'm well aware that diagnosis is never 100% sure, but if it were to begin to look like something else, we'd check that out, too.
      Thanks for your concern.

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  13. Anonymous9/20/2013

    Hi David,
    I have experienced the same lack of reading comprehension when I had an undiagnosed thyroid autoimmune problem. I loved reading but found l couldn't understand concepts. Once I received medication it took months for my abstract understanding to return. lt made me realize that other people experience that lack of comprehension, abstraction or ability to read something and then know the implications. In other words, to read something and really know what it means, not just what it states.
    It also taught me how a minuscule bit of a missing hormone can effect the brain. In my case a replacement hormone drug fixed this. It gives me hope that something similar will be found for dementia.
    Thank you for sharing.

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  14. Thank you so much for your blog, David! I believe that reading it will help a friend of me, in early stage of ALZ just now. I have found link to your blog in an article on online news site written in Czech language.
    Warm greatings for you and your wife! --- Eva (Prague, Czech Republic, Europe)

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  15. Thank you so much for your blog, David! I believe that reading it will help a friend of me, in early stage of ALZ just now. I have found link to your blog in an article on online news site written in Czech language.
    Warm greatings for you and your wife! --- Eva (Prague, Czech Republic, Europe)

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  16. Anonymous9/21/2013

    I think I have found the mention about your blog in the same article as Eva :) Your blog is a wonderful idea and I wish you all the bests! Just one question, could you please share the name and author of the mentioned book about Buddhism and its correlation with happiness? I am currently living in Thailand and (not only because of it) the topic of the book sounds very interesting to me! Nela

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  17. I hope I ma not misrepresenting the book, but I find the correlation between the advances in knowledge of neuroscience and Buddhism (and Christianity, too) fascinating. The book is Buddha's Brain by Rick Hanson.

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  18. Anonymous9/26/2013

    Thank you for the Buddha's brain reference. I get the feeling that the Buddha may be the brain:-) Another thing that occurred to me is that, as we get older, if the Buddha was right we should become more enlightened, and less likely to believe in our ego, which is likely to be a painful process. I wonder to what extent brain degeneration in old age might be motivate to prevent this enlightening process - and the pain of ego loss. I have thought this before but was reminded of it when reading your post above where you say that the bits regarding Buddhist spirituality had become less understandable.

    I am 48 and becoming more forgetful. E.g. now at the start of term I am wondering a what time each time period commences and ends. I wonder if there is an on-line test, yes
    http://www.memozor.com/memory-tests/test-for-alzheimer-online
    and ouch, it says that I have "important memory problems" and that I should consult a doctor.

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    1. For the brain degeneration (in, for instance, AD) to be part of a subconscious ploy to get us out of the pain of ego loss, you'd have to explain how the subconscious controls amyloid plaque formation beginning twenty years ago and the very significant neuronal death that accompanies most dementia. That seems to me unlikely to be controlled by the subconscious ... although who am I to know?
      In terms of you "important memory problems," I would certainly suggest getting tested ... especially at your age. There are a number of curable causes of cognitive loss that would be important to rule out and if you were to have a significant dementia coming, knowing ASAP will be a great help in preparing.

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