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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.

Friday, September 13, 2013

Waiting

Washington DC
It was exactly one year ago today that the neurologist told me I had "mild cognitive impairment" (MCI) that would almost certainly progress to Alzheimer’s.  Shortly afterward, I got lost a couple of times while biking, made several major mistakes in the bookkeeping I was responsible for, and noticed increasing difficulty in keeping more than one or two things in my head at the same time.  It was bad news, but it all seemed consistent and pretty straightforward. 

But then in late spring and early summer, I had a series of brain scans looking for physical evidence of Alzheimer’s, and they were completely normal.  2½ weeks ago, I had an extensive neuropsychological examination of which I'm awaiting results.  During the examination, it seemed to me, my memory wasn’t as bad as it had been.  For the last couple of months, it has seemed to me that I've been somewhat sharper than before. 

Last year's clarity about what I have and where I'm heading has become murkier. 

It may not be mysterious at all.  Perhaps I've gotten so used to the memory impairment that I don't remember anymore what it was like to have a normal memory.  Alzheimer's is a disease that is better some days and worse others; perhaps I'm just in one of the better phases.  Perhaps I'm one of those people whose disease progresses very slowly (as people with Alzheimer’s but normal brain scans tend to be). 

Or could I be even getting better.  The negative brain scans have opened up the possibility that my symptoms have been due to something other than Alzheimer’s.  The problem is I don't know for sure, and I don't like the uncertainty. 

Is it possible that I'm actually improving and could return to normal?  I've been doing some reading about mild cognitive impairment (MCI), but it hasn’t clarified an answer to that question.  As I mentioned in the last post, there are a number of treatable, even curable causes of dementia: thyroid disease, alcoholism, vitamin deficiencies, depression, and medication side-effects.  So if I had MCI from one of those, it would be possible to improve.  A thorough medical examination can diagnose any of those diseases, however, and I've had a very thorough medical exam which was normal for all of them. 

If my MCI were due to little strokes (vascular dementia), then if the strokes stopped, my MCI could remain stable, too.  But the brain scans I've had (the CT scan and the MRI) should have picked up little strokes, and they were normal. 

So are there other forms of MCI that might remain stable or even get better?  The Alzheimer’s Association’s recent report, 2013 Alzheimer’s Disease Facts and Figures, states that some people with MCI don’t seem to progress onto dementia and even improve, but research scientists don’t really know why.  And, apparently, if your MCI is, like mine, an impairment mostly of memory, then it's unlikely to improve. 

All of that leaves me feeling just a bit confused.  I'd like to have a long discussion with one of the neurologists, but they, understandably, want to wait for the results of the neuropsych exam.

So I wait and try to learn about uncertainty.

25 comments:

  1. Well, David, I guess you have good news! I hope you don't have Alzheimer's. My mother died from that awful disease, so I'm hoping it skips me! I haven't had any testing, and my memory lapses I blame on age! I'm 70,so it may be starting!

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    1. Waiting for test results can drive a person absolutely crazy. I truly hope that you hear soon and that the results provide you with clarity and peace.

      I came across a small study on MCI this year that was carried out at the University of New South Wales. They found that a sizeable proportion (25%) of individuals categorized as MCI revert back to normal cognition. The people who reverted were generally more resilient and seemed to be aging "better". They were more likely to have controlled their high blood pressure, and were generally more physically and mentally active. Participants with greater openness to experience were also more likely to revert, indicating that a more flexible personality is an advantage.

      In your last post you listed a number of treatable conditions that can cause cognitive problems. Somewhere I read that there are approximately 100 conditions that may produce cognitive loss. It is difficult for doctors to rule out everything and this hampers the accuracy of the diagnoses they make.

      I was diagnosed with Alzheimer's disease in 2008, following the self-reporting of memory problems. I had the common "rule-out" tests and a PET scan. Last month, after taking 4-5 hours of neuropsychological testing, there was no evidence of Alzheimer's disease or even mild cognitive impairment. I was classified as normal for a 72-year old, college-educated female. I was totally shocked as I had come to see and accept myself as impaired even though I was functional. My current neurologist believes that the original diagnosis of AD was incorrect, and possible causes of my cognitive loss were (1)metabolic, (2)hormonal, (3)infection, or (4)medication side effects.

      There were many things that I did during these 5 years: medication(Exelon Patch), supplements(B complex and Co-Q10), a Mediterranean diet, physical exercise, mental exercise(crossword puzzles, reading, and writing a memoir), and socialization(support group, family, and friends). These have been shown to have a good affect on brain health. A positive attitude also helped.

      The fact that some people get misdiagnosed should not stop people from getting an early diagnosis when cognitive problems arise. It is helpful to be able to plan some aspects of your life while in the early stage. What we must strive for as a society is a diagnosis that is both timely and accurate.

      I wish you all the best.

      Phyllis Selinker

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    2. Thanks for your story and all of the information.

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  2. Anonymous9/14/2013

    Well, isn't this irksome! I like to KNOW things, so I would be finding this very frustrating. You seem to be handling it with your usual calm demeanor, and I'm trying to watch you and learn from your handling of things, so if and when it's me, I won't be totally clueless or really annoying to my family. As usual, you are keeping me thinking. Thank you, David!

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  3. Anonymous9/14/2013

    I thought AD was only diagnosed at death with an autopsy of the brain.

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  4. You are exactly right, and that is the problem. At this point the DEFINITIVE diagnosis can be made only through autopsy. But those who take care of patients (clinicians) and researchers have, over the years, developed a set of symptoms and signs (results of physical exam, lab, and x-ray data) that can be used to make a "presumptive" or "clinical" diagnosis that's used for many purposes ... but always with the caveat in mind that you don't know for sure.
    There is great hope that the new tests for the protein amyloid and in brain and in the spinal fluid and the tau protein in the spinal fluid, will make the clinical diagnosis more accurate ... and that's one of the things that the medical research is now trying to determine. Eventually all the new tests will be correlated with autopsy evidence to improve our ability to diagnose ... but it's totally unlikely to be perfect.

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  5. ... But it is possible to have an autopsy that shows physical evidence of AD in an individual who was cognitively normal. Information based on autopsies of deceased with advanced dementia AND controls without cognitive impairment found that 15% to 30% of those without impairment did have physical evidence AD. If I could only find the citation ...

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    1. Part of the problem is that the brain changes of AD may begin 20 years before symptoms develop, so it's likely that those folks who didn't have dementia were early enough in the disease that the symptoms were not at all evident or were so subtle that they were not picked up in life.

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  6. Anonymous9/16/2013

    Dear David,
    My colleague Prof. Alan Altimont has been sharing memories on his Facebook page, and a recent made me think of you. I have not asked Alan if he has begun sharing these memories in anticipation of losing his own. I am glad to hear that your recent tests have been "normal." Here is part of Alan's post:

    For what turned out to be his last Christmas present I gave my dad a crushable brown wool Stetson. He turned it over and over inspecting it as if it were a mysterious artifact. Suddenly he'd focus on the stamped gold letters on the head-band: "Stetson! Hey, this is a Stetson!" "Sure is, dad." "Whose is it?" "It's yours." "Mine? Hot damn!" And he'd put it on. "A Stetson!" "Do you like it?" This response sometimes drew an enthusiastic "Yeah!" but sometimes a lukewarm "It's okay." He'd take it off then and with hardly a pause begin almost exactly the same loop again, looking it over thoroughly, exclaiming, "Stetson! Hey, this is a Stetson. Hot dog. Whose is it?" And so forth. Again, as with Clementina, there was something comforting for me in the notion that with this kind of forgetfulness there is the opportunity to be delighted over and over again by the same thing.

    But I experienced this only intermittently on visits from Texas. For my mother, who lived with it and saw it worsen for a few years, it was a great sadness. She could no longer have a real conversation with the man she had lived with for more than fifty years. Yet she kept him at home with her till only the last few days of his life, when a fall made it impossible for her to care for him, even with the help of a day nurse.

    Both her darker and more difficult experience and my sense of the freshly rediscovered surprises that the forgetful can have remind me of Robert Frost's wonderful lyric, "Hyla Brook," which is one of the great admonitions against forgetfulness. It was mid-summer when Dee, Clem, and I walked along its banks several years ago when staying in New Hampshire, but it was not dried up as the poem says it often will be, and we even spotted a number of frogs (hyla). I especially love and keep in mind the simple dignity of its conclusion: "We love the things we love for what they are"--be they at the full or nearly spent.

    Best,
    --Ev Lunning

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    1. It has been a very long time, Ev. Thanks for sending this Prof Altimont's post.
      David david(at)davidhilfiker(dot)com

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    2. Anonymous10/14/2013

      this post brought tears to my eyes. Thank you. I too, have tried to find the good in my mother's dementia while wishing it would revert... and here I have to say.. sometimes for a flash she is back.. and then gone again. But she laughs and it delighted in a way she could not have been in her "real" self, which was quite sophisticated and critical sometimes. And yes, over and over she is delighted and ... has fun. But small consolation for the losses. Still, this blog gives so much hope to me, for myself and my brother.

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    3. The people for whom this disease is the hardest are the caregivers. It is you who see most profoundly the changes and the losses. I suspect it is different for the person with Alzheimer's. I'm too early in the disease to really know the experience of a person as far along in the disease as your mother is, but you might try to find out whether SHE misses her "real self" as much as you do. It's very possible that what looks (for good reason) so terrible to you may not be so terrible for her.

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  7. David,
    I really enjoy your blog. I always find it helpful to hear directly from people who have a diagnosis, as they are the true experts! Although it sounds like you are playing the waiting game, which can be so frustrating. I'm hoping for a good outcome and kudos to you for choosing to live the best you can with what you've been dealt.

    Sarah

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  8. Hi David. I am new to your blog. Until recently, I was my Father's Patient Advocate while he was in a nursing home with Alzheimer's these past four and a half years. He recently died in August at the age of 92. I have a blog where I wrote about our family's experience during my Father's journey with the disease.

    I commend you for writing this blog. I know it will be so beneficial to you and to your loved ones, in addition to those who are just beginning the experience and will become so desperate for information.

    You mentioned the uncertainty especially bothersome to you...might I suggest reading Bréne Brown's book DARING GREATLY. I think you would it find it interesting and helpful.

    I plan on following your blog. BRAVO to you sir.

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  9. Anonymous9/20/2013

    I stumbled across this site today and spent hours reading everything, replies on it. You are an amazing person Dr. and on a journey. I have been on this journey twice, a long, horrible slow erasing of my mother who died last year from Altzheimers. And now this year the continuation of the decline of my sweet, kind and lovely mother in law who is in the advanced stages of Altzheimers. Questions and concerns rise for my siblings and I, all in our 50's. Will will get this? Will it destroy and damage our family, finances and relationships the way it did with my mother? Will I be strong enough to prepare for the future? Both my MIL and my own mother deteriorated into unrecognizable shells of their former selves, making no eye contact, unable to walk, unable to feed themselves, spending the day soiling their clothes and this was the easier part of the disease. The middle stages included shocking behavior issues, anger, violent acts, shouting, wandering, and unintentionally destroying two families in their path. They were/are both at home. If I get this disease, I want to be dead before my children have to see me in such a state. My teenage children cringe, are horrified and uncomfortable around an elderly woman who without warning grabs their food off their plate, smashes food into their clothes and on the walls, and in a second's notice, has diarrhea streaming out of her clothes and onto the couch. We have seen her crawl on the floor, pick at bits of paper, put a screwdriver into her mouth, scream in frustration at things we do not understand, smear feces on the wallpaper. We have placed both in Altzheimer's facilities and they return home to die. This is not the way to end a life. These women were/are not neglected. My mother remained at home with two hired caretakers 24/7 and children helping too. After going through this twice, I am a firm believer in suicide prior to things getting this bad!

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    1. Anonymous9/20/2013

      So sad, I've been there, no good and one answer.

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  10. I hope you are one of the ones 'they' talk about who improve. I read this recently in a news article, and this was the reason 'they' don't like paying for tests that might be needless in the long run. I hope it's something else, or you're just getting better.
    Rose

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    1. Anonymous9/20/2013

      sadly, if one has AD, there is no such thing as getting better.... you only get worse and your family suffers.

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    2. There appears to be some confusion in the profession about mild cognitive impairment (MCI). There seems to be a certain percentage of people with MCI who stabilize or get better although it seems clear to me that it was never AD in the first place. But the things I read are just confusing. I hope to talk with an expert before long and clarify some of the current thinking.

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  11. Anonymous9/21/2013

    So you have no alzheimer ?

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    1. Well, that's what I'm still waiting to find out. My prediction is that I do have an early form of Alzheimer's (which is what my neurologists have told me all along). But it's uncertain what these negative brain scans mean. We know that they are not 100% accurate, so ultimately the neurologists will have to make a diagnosis as best they can. The results of the neuropsychological test that I took almost four weeks ago should clear up much of the uncertainty.
      Still waiting!

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  12. Unfortunately getting a dementia diagnosis is very difficult. This makes life more difficult for people with dementia and their families.

    The lack of results on brain scans doesn't say much. In 2009 my wife had MRI, CAT scan & PET Scan, all showing nothing abnormal. This year a high definition MRI showed some atrophy, not normal for aging, for the first time. In "The New Executive Brain" Dr. Goldberg compares brain scans to flying high above the mountains. Looking down you see clouds and the mountain peaks. You would see if something was wrong with the mountain peaks but nothing about the condition lower down the mountains or in the valleys. You often do not see anything unusual in brain scans in the case of mile to moderate FTD, I suspect this is the same for Alz but am not sure.

    Her neuropsych tests were much more useful the the neurologists.

    I also recommend that the scans be read directly by neurologists who are specialists in dementia (I assume that this is the case with you, this comment is meant for other people). Radiologists are great at spotting tumors and brain bleed (vascular dementia). So you know that isn't your problem. But signs of dementia might be there but it might take a specialist to recognize them.

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    1. Thanks for your helpful comments, Paul. I am eagerly awaiting the conversation with my research neurologist after my neuropsych results are in. (It's supposed to happen on Tues Oct 8th, if it's not sidelined by the outrageous shutdown of the federal government.) Assuming that the neuropsych test points toward Alzheimer's, I want to talk with the neurologist about all the things you mention: How often are these tests falsely negative (or falsely positive, for that matter)? Are these tests more confusing than helpful? What about the spinal fluid analyses.
      In some ways it seems it was easier before all these new tests. Making the diagnosis on the basis of the clinical exam plus the neuropsych testing and then ruling out the other causes of dementia may be the best way to go ... especially until we get these newer tests better standardized.
      (BTW, for some reason several of your comments were caught in the spam filter here, which is unusual. I've published them all except for a couple of the repeats.)

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  13. Anonymous10/14/2013

    thank you for this blog. My mother, widowed and living alone, had MCI undiagnosed and noticed only by me. My brother, a physician, kept telling me it was my imagination she just had to "try harder". Then it became dementia, caused by her little strokes and accompanied by personality changes. It is very frightening to observe and more frightening to have happen --especially for those who live alone, and especially if you don't .... understand. Your blog I think can help people understand more. I think you can see and hear the sadness, frustration fear and confusion in the comments. Bless you and I will continue to read.

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    1. I hope that eventually no one will say to a person with Alzheimer's, "You need to try harder." They're trying as hard as they can.

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