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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, March 09, 2014

It's Hard Not to Worry About Uncertainty

A woman in her mid-forties emailed me recently.  She is suffering symptoms of cognitive decline, yet thorough cognitive testing shows no abnormality.  She’s seen her primary care doctor who’s given her the basic screening tests for the causes of dementia than can be tested for, and they’re all normal.  Doctors have suggested that emotional issues (for instance, depression) are the most likely cause (a reasonable possibility that she was willing to consider), but a year of anti-depressants hasn’t changed her cognitive symptoms.   

By definition, then, she has subjective cognitive decline (SCD) and is wondering how to deal with it.  The only relevant medical test she hasn’t had is a PET scan for amyloid to look for evidence of Alzheimer’s.  As I’ve written, the test can tell you reliably only that you don’t have Alzheimer’s not that you do: 20 – 30% of those with a positive scan don’t, in fact, have Alzheimer’s disease.  Unfortunately, too, the scan costs about $4000 and health insurance may not cover it.  As a doctor concerned about health care costs spiraling out of control, I would myself be hesitant to order such a test since it wouldn’t change treatment one bit.  (In fact, as a patient I did decline my doctor’s offer to get the scan and only had it eventually as part of a research study.)  Regardless of how the scan turns out, however, there’s nothing to do about it.

In my own case, what I needed most was reassurance that I wasn’t crazy, that, regardless of the normal objective tests, my symptoms were real and not imaginary.  I sensed the same need in this woman’s email.  Her complaints are real.  SCD is a recognized medical phenomenon.  While medical researchers are only beginning to evaluate it, studies so far have indicated that SCD is strongly correlated with a later diagnosis of Alzheimer’s. 

She wanted any help I could suggest about what was going on and what she could do.  Here’s some of what I wrote back (or wish I had written back).

So why are you having such disturbing symptoms in spite of the normal test results? 

There are a couple of possibilities.  First, you may have had a very high intelligence, giving you a significant “cognitive reserve.”  You know you’ve declined but you’re still well within “normal” range, which is just what you’d expect the tests tell you.  A neuropsychologist mentioned another possibility to me    : There are groups of people (she mentioned doctors especially) who—probably as a result of how they were selected for medical school and how they’ve been trained—just do much better on tests than they do in their everyday life.  They know something’s wrong but they’re just too good at taking tests for it to show up.

One important thing is to recognize that you’ve done everything possible to have your symptoms evaluated.  For most people in a situation like this, half of the worrying and anxiety is wondering whether they should keep fighting for a definitive diagnosis.  In your case, the answer appears to be No.

So what can you do?

You’re a physician and you’re appropriately worried that other people’s lives depend on your cognitive capacities, so you want to reassure yourself that you’re not putting patients at risk.  I haven’t looked into it, but I would suspect that there are places that will assess you anonymously, for instance, a training hospital or state medical society.  (Especially if your capacity as a physician is not objectively compromised, you don’t want to be forced into retirement by overzealous administrators trying to cover their butts if rumors get out.)  In your email, you’ve shown honesty and integrity in revealing yourself.  If it were to turn out that you shouldn’t be practicing, I’m confident you would back off quickly without needing an outside push.

Work at not torturing yourself about whether your symptoms are “real” or not.  If they’re due to some emotional cause, so be it.  You’ve already done what to can to check that out, so let it go.  Wait and see.  Recognize that your spiritual task right now is to live with the uncertainty you’ve been given. 

Your situation can be a learning laboratory for spiritual growth.  Most of us need to learn patience.  Here’s a place to practice.  There’s nothing to do; only live with who you are and what you’ve been given.  Can you accept the uncertainty as your opportunity to learn to live with it without exacerbating worsening your suffering?  The Buddhists point out (not in these words) that the only thing worse than being in a miserable situation is attaching yourself to the goal of getting out of it and, therefore, fighting it. 

That approach rarely ends happily.


  1. Not to your point, but a passing comment: Interesting that one of the earliest suggestions is depression. Would they suggest that to a man? Just wondering. But, of course, this is just a sidebar to what's really important here.

  2. A woman in her forties? I'm surprised they didn't blame it on menopause. My Mother started menopause at 37 and was finished by 45. But she did have some fogginess that was noticeable.

    1. Liz and Lee Ann:
      I learned never to tell a woman that there is no sexism going on, but I will point out that the doctors have suggested depression as my issue, too.

  3. I wondered if the woman you write about could ask a close friend or loved one to get curious and let her know if he or she thinks she's behaving in a way that's not congruent with "normal" behavior - or normal for her? For several years, I was angry that my husband "wasn't listening to me" when I talked. One day, I decided to get curious instead of angry and I quickly determined that it wasn't that he wasn't listening; he wasn't remembering whole conversations. That's not normal. Armed with that observation, I knew there was something going on and sure enough, the tests (in-depth cognitive + PET scans in a study) showed he has Alz.

    1. Nicole:
      I think your observation is important. It's just too hard for us who are so close to our loved ones to see what's happening in mild cognitive impairment. It sneaks up so slowly that a lot of stranger and stranger things become "Oh, that's just him and I wish he'd get over it." A friend can help.

      People who have jobs that others' lives depend upon are in a slightly different situation, however. They can't wait until other people are noticing things. The lives of the people in their care depend upon the ability of the doctor or nurse or anesthetist to notice little things, to put disparate bits of information together and draw a conclusion, to observe, or remember the patient's past behavior so that a change is noticeable, or having to remember the name of the drug or the right dose.

      Again the old question: How do I know the difference between “Oh-it's-just-one-of-those-things-that-happens-to-everybody” and “Uh-oh,-it’s-time-to-think-seriously-about-what’s-going on.”

      I certainly hope that the professional organizations have tests that people can take if they're concerned. (I believe airlines pilots have to get tested at regular intervals. Shouldn't doctors?)

  4. krista4/02/2014

    I'm 56 years old, living in Stockholm Sweden. Had a diagnos for alshiemer in last november. I did not have any shinking of the brain on the CT, They made two pet Scans without negative results but when they made a test of spinal fluid they found the bad proteins. Now Ifeel much better than I felt the last two years. I'm on medication. Memory have improved a lot. Before my diagnosis I was very scared. I have had a lot of help of relaxing and mindfulness to keep calm. I Think I have a good Life.

  5. Thank you so much for sharing your thoughts during this journey. We are pretty sure my dementia has at least some element of Lewy Body.


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