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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.

Sunday, November 03, 2013

Thank You!

Martha's Vineyard, MA (visiting my sister)
The responses to my last post about my normal cognitive exam have touched me deeply.  Almost all of them have been notes of understanding, appreciation, and love.  They’ve helped me realize what a wonderful little community has formed around this blog.  And I suspect that the community is considerably larger than only those who post comments or email me.

Some of the responses have been of empathy and compassion.  From these I receive a great deal of emotional support.  It is important when one person will listen to another’s pain.

There are a few others of you out there who, like me, also have some degree of subjective cognitive impairment, but their objective neuropsych tests and brain scans are normal; you are or have been in a state of uncertainty similar to mine.  It’s reassuring to know that I’m not alone, that this little community includes those in very similar situations. 

Some of you have found a particular solution to your uncertainty and hung on to it; others have taken the route that I find most comfortable, learning just to live with the uncertainty.  It is good that we take whatever will work for us.

A number of you have reminded me of the ultimate uncertainty of all medical science and especially with the brain where there are large areas still unexplored and not understood.  As a medical person myself, I do at some level know this, so it’s good to be reminded.  There is still much mystery in disease and healing.

A few readers have suggested that the spiritual task is to let go of the images of my “self,” whatever those images are.  Buddhist teachings are insistent that hanging on to any images of self—“Alzheimer’s patient,” intellectual, blogger or teacher—leads to suffering.  The self is an ever-shifting shadow that eludes any kind of definition.  In the Christian tradition, too, we remind ourselves that whoever would save his life will lose it.  Let go!  Let go!

And then there are those suggesting other possible diagnoses.  In most cases my doctors have ruled these diagnoses out (as much as medical science is capable of it) by the pretty thorough testing I’ve been through.  But anything is possible. 

A few have urged me try or at least look at new treatments.   For a number of reasons that I’ve discussed in previous posts (here and here), I’m reluctant to begin treatments substantiated only by anecdotal evidence. (If I had followed one or another of these bits of advice and started coconut oil or done crossword puzzles or tried whatever, I’d now be the new poster boy for that treatment.)  I understand well why others try these treatments and would not try to discourage them from that route.  But it’s not mine, and I don’t even look very seriously at the details of new treatment.  Nevertheless, I appreciate the concern with my wellbeing that the emails evidence.  I’m grateful.

All of this indicates to me that there are a lot of us in need of information, community and concern.  It’s all the more reason to keep trying to bring this dread disease out of the closet and into the light where we can all look at it and offer one another the help we need.

Thank you all for sharing in this community!


  1. I wish for you all the best, no matter what the answer turns out to be ~

    Hugs (if I may be so bold) ~

    bobbie R.N.

  2. Anonymous11/03/2013

    I am truly pleased that your diagnosis is no longer Alzheimer's, after having personal experience of knowing many people with AD. Your perspective on your own MCI has been fascinating.

    It is all too easy from afar (in my case New Zealand) to wonder what other things might be causing your symptoms, and I know as a trained doctor you will have ruled out most things, but all along through reading your blog I have often wondered if you have had a slow build up of lead, and if you have ever been tested for lead poisoning which can produce a variety of cognitive symptoms. I have no idea of your past (e.g. if it includes doing renovations around lead paint, drinking water delivered through lead pipes, car brakes, etc), so this is only a curiosity on my part, and no doubt something you have already ruled out.

    Whatever your journey is now (and if you find out the cause of your symptoms or not) I wish you well, and look forward to following your blog posts in the future.

    1. There have been a number of suggestions in these comments and in my emails for checking out the unusual AND the very rare causes of dementia. The unusual ones (eg hydrocephalus) have been pretty much been ruled out. Many of the VERY rare ones have not. Given that my cognition is, according to the objective tests, normal, it's probably not indicated to test all of them unless there is cause to, for instance, I've done a lot of hiking in areas where deer ticks are present, so I'll try to get tested for Lyme disease.

  3. Beatrice11/04/2013

    What an eloquent writer you are!
    Thank you for your most thoughtful response to those who comment on your posts. It testifies to great empathy on your part, and that is a wonderful gift you have.

  4. Anonymous11/04/2013

    Whatever your diagnosis, I surely hope you will continue to blog regularly. With or without a name, many of us struggle, or knows someone who struggles, with the same symptoms you have described.

  5. Dear David,

    Your journey is uniquely yours and I applaud you for your transparency and now your certain confusion with this most recent turn of events. In your last post, you quoted Daniel Kuhn (who vetted and provided a pertinent quote for my novel, All the Dancing Birds (a story about a woman with Alz and told from inside her mind)). Our family is populated with people who have Alzheimer's or a related dementia. My husband is now included in that group, and yet ... because he's highly intelligent (as are you) ... he's able to still work through complex paper problems, but still not able to remember where he put his keys, his credit card, his most recent thoughts.

    The thing is, you still have issues and we're all still following the account of your particular journey. What I learned during research in writing my novel is that our brains are more-than complicated. They are highly complex and not easily categorized into disease / not disease.

    Your journey may take you down many different twisty and confusing roads. Please know you have people who are following your journey. Diagnosis/Un-diagnosis is part of the family experience. It's taken years and a great deal of squeaky-wheel-ness from this younger sister to finally have her needs acknowledged. Don't give up. There's an answer.

    All best to you and yours,

    Auburn McCanta

    1. It has been quite a journey and, as I said in the post, I'm very grateful to those of you who want to share even a little bit of it with me.

  6. Anonymous11/04/2013

    Hello David--I don't remember where I heard of you or really when I started following your blog but I've found it enlighting and warm and many other things I can't get out of my head at this moment. I lost my Mom to Alz in 2006 at the age of 67 and there was nothing normal about her journey. She never developed so many of the symptoms that plague so many others. I wondered many time thru the years if it was even Alzheimer's that killed her or being in a toxic environment and using a saline nasal rinse every night with toxic water from their old well. My Dad developed some dementia as well but it was never as serious as Mom's. I worry about my sister and I developing the disease along the way. I'm certainly no doctor but if I can share any insight with you, go with your gut. Let go of the "What is it" and just go with whatever you have today. Best of luck and health to you and I will continue to follow your blog--very interested in where you end up!--Cindy Cox, Monroe, LA

    1. You're right. I think I have a choice between a variety of near-neurotic choices trying to pin things down and win some certainty or allowing myself to live with the uncertainty and see what lessons it has to offer me. The latter has actually not been as difficult as I supposed. I'm usually pretty much at ease with things as long as I know I can't really do anything about them ... which is right where I'm at now.

  7. Living with uncertainty seems preferable to the "certainty" which often follows a diagnosis of Alzheimer's disease: certainty that you will only get worse than you already are, certainty that you will become dependent on other people, certainty that you will lose much of what defines you, certainty that there is presently no cure which will prevent you from dying. Perhaps the medical community and the Alzheimer's organizations need to stress more that all of our journeys with memory loss are "uncertain" -- there is so much about the human brain that we still don't know.

  8. Maybe it's not so much old age which causes difficulties with memory recall but more that the memory banks of the elderly are overloaded along with masses of trivia. When a computer's cache. memory banks and hard drive get overloaded and fragmented it too slows to a crawl. And sometimes it stops.


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