Washington DC
In my last two posts (here and here), I shared the good news that my cognitive
diminishment has not been progressive, is not Alzheimer’s, and (despite the
occasional frustrations) is something I can live with. It’s wonderful
news although I’ve been able only gradually to embrace it.
The good news may raise the question in the minds of
some: If Alzheimer’s is incurable, how could have you been cured? The
short answer to that is that I haven’t been cured;I never had
Alzheimer’s in the first place; the diagnosis I’ve been living with for over a
year is wrong. And that may raise the question: If you had good doctors,
how did they miss it? Why did they tell you that you had Alzheimer’s when
you didn’t? And the short answer to that question is similar: They never
did tell me that I definitely had Alzheimer’s; they said it was almost certain,
which I’ve always mentioned in my writing, but usually not emphasized, in
articles, speeches, and this blog. The longer answer to both those
questions lies in the current diagnostic criteria for Alzheimer’s, which are
imprecise. I emphasize current because, as I’ll explain later,
those criteria are in flux.
Alzheimer’s can only be definitively diagnosed by an
autopsy that finds the telltale amyloid plaques and neuro-fibrillary tangles.
Since it’s not possible on a live patient to make a certain diagnosis, doctors
assemble as much evidence as possible and make the presumptive diagnosis from
there. The problem is that the diagnostic criteria for Alzheimer’s are
necessarily subjective and uncertain. Here they are.
- The cognitive impairment has to be progressive. The trouble with that criterion is that early in the disease it can difficult to be sure that symptoms have gotten worse. In my case, the second set of cognitive tests, a year after my first, did seem to show increasing impairment, but the progression was mild and maybe just random. Maybe I had a bad day with the second set of tests.
- Symptoms have to be bad enough to disable you in your daily life or work. My neurologist did tell me the time that I hadn’t yet quite progressed that far, but it looked to him that I was heading there. The definition is a little vague. On the one hand, I was working both as a writer of complicated material requiring specialized thinking and as a bookkeeper. I was disabled enough to force me out of those jobs. On the other hand, I could still do other kinds of professional work: teaching college-educated people, participating in organizational leadership positions, and so on. Was I disabled because I couldn’t do my usual work? It’s not clear cut.
- There must a pattern of impairment in which memory is more affected than other elements of cognition. I certainly met that criterion, but other kinds of dementia can have the same pattern.
- Other causes of dementia have to be tested for and ruled out. But no tests exist for some causes of cognitive impairment (for instance, Lewy body dementia), other tests (such as an MRI for vascular dementia) are not always conclusive. So it’s not really possible to rule out all other causes of dementia.
The point is that, especially early in the disease, a
doctor cannot make a definitive diagnosis; as a doctor, you do the best
you can, but you’re often wrong. I fit three of these criteria and was
close to the fourth. Using these old criteria, a diagnosis of “mild
cognitive impairment, almost certainly Alzheimer’s” was justified.
So the answer to the question about how I can now be
cured of Alzheimer’s is that I never had it in the first place. The early
clinical diagnosis was wrong, as it sometimes is. And the answer to the
question about my doctor’s competence is that he did exactly what he was, at
that time, supposed to do. But medicine marches on; the symptoms
previously diagnostic of Alzheimer’s are no longer enough. By the old
criteria I had it; by the new, not-yet-quite-in-place criteria, I don’t.
I’ll review that in my next post.
You mention that your memory is more impaired than other cognitive functions, can you elaborate on that a little-i.e what kind of things you tend to forget more-conversations? paying bills? what you did the day before/whom you phoned etc?
ReplyDeleteLike many other older people I'm terrible with names and faces, although that's not uncommon in normal aging. I'll try to copy an address from one place to another and have to go back and for three or four times to make sure I have the street number right, usually reversing several of the digits. I not only forget that I had a meeting schedule but when look at that very scheduled meeting, I won't have even a vague memory of writing the appointment down. I can only remember most conversations if I'm prompted. I get quite confused trying to remember what I did yesterday. I think the most frustrating thing is when I'm am doing something that requires remembering three or four things all at once. At least one falls away and I find myself repeating steps over and over.
DeleteOne of my MIL's early symptoms was she couldn't remember if she had lunch so some days she would eat multiple lunches. (Always peanut butter & jelly sandwich and a banana. We knew she was eating too many because the bananas disappeared too quickly.) Yet she was able to learn that lunch time was 1:00 so she didn't eat before or after that which meant she ate the appropriate number of lunches after learning to eat at 1:00. It is an odd disease.
ReplyDeleteYes, it is an odd disease.
DeleteI have made several attempts to contact you privately with no success. The messages apeared not to be sent. Today I made another try. This time, though still disfunctional, the server was at least not silent, apologizing (or maybe simply explaining) with the simple "Message 500 - Internal server error."
ReplyDeleteSorry for the difficulty getting through. The 500 error was caused by my site being down for some days last week. I'm not sure about the previous times. If you'd like to write me at david (at) davidhilfiker (dot) com, it would probably get to me.
DeleteMy 56 year old mother-in-law was diagnosed with dementia March 2013. However, by May she did not even know who we were. By July she was in a wheelchair. October she was bedridden. In December she was later diagnosed with CJD. She passed Jan 2014 at home. Before this I had no idea what CJD was. And I am sure a lot of people do not know either. I wish there was more awareness about this disease.
ReplyDeleteFor those who don't know, CJD (Creutzfeldt-Jakob Disease) is another cause of dementia, although much less common tha Alzheimer's. It's of uncertain cause and also only diagnosable on autopsy. There are a number of less common dementias, like CJD, that cannot be ruled of with any reliability with diagnostic testing so can easily be confused with Alzheimer's disease, especially early on. For more info, check here: http://www.ninds.nih.gov/disorders/cjd/detail_cjd.htm
DeleteHi David: It's great to hear about the positive developments regarding your mis-diagnosis (although some of them symtoms apparently remain). With respect to my experience, following more than two years of all the applicable/usual neuropsyh. testing, etc., regarding increasing cognition problems, I was "officially" diagnosed with MCI last September by a neurologist at the the University of California at San Francisco's memory and aging clinic (although I am only 54 years of age).
ReplyDeleteCalifornia law requires that any diagnosis of cognitive decline be reported to the department of motor vehicles which mandated that I take a supplemental driving test. I recently passed both the written and behind-the-wheel tests. As a result, certain pesons, most notably my wife, have offered their opinions the tenor of which are that we told you that your prognosis was not that serious and that I should just move on. In reality however, nothing has changed regarding my cognitive issus on a day-to-day basis.To add insult to injury, my wife has recenlty started reading your blog and, as a result of your recent positive develpments, has become even more conviced of heropinion(s). I have a six month follow- up with the UCSF diagnosing neurologist next month and it will be interesting to see if the positive results of the drivers test will change, or even effect, his diagnosis. In essence, I guess I am just fed-up with this whole process/experience. I am somewhat anxious that any mitigating factor (i.e. the driving test) will change his asssesment and as a result I will end up back at square -one while still suffering the same symptoms and dealing with the issue of dismissal.
Any thoughts?
Thanks,
Steve
Steve:
DeleteI have several thoughts. As I read more and more about mild cognitive impairment (MCI), I'm realizing how little we know. There are a number of good reasons for this:
1. Until recently there was no way to diagnose Alzheimer's (AD) until autopsy; especially early in the disease (ie MCI) symptoms in AD can be very similar to other dementias, many of which also cannot be diagnosed until later. It was difficult for anyone to know what was going on in MCI, so doctors had to draw their own road maps. Some wouldn't mention AD until much later in the disease, thus alienating patients and loved ones who wonder why the doctor "didn't tell them the truth." Some just went with the most probable diagnosis (which was always AD), earning scorn for "scaring people" if there was no AD. Others like my own neurologist tried to give some idea of the level of certainty, but this can be very confusing to people who don't have much familiarity with statistics or medical uncertainty.
2. It's only been fairly recently that people with cognitive deficits have been willing to identify themselves and thus become available for scientific studies. So no one really knew what was going on. Did true MCI, for instance, always progress to real dementia? We didn't know. Studies are now being done with very interesting results. (I'll write about some of those in a week or so.)
3. Neuropsychological testing is not completely reliable, especially early in the disease. I got completely different interpretations of the same scores from two different professionals
Second set of thoughts: Any cognitive impairment is an incredibly difficult issue to deal with in an emotionally healthy way, both for affected persons and for loved ones.
1. In many cases (yours and mine, for instance), the person knows without a doubt. But if it’s early enough, the symptoms may not be obvious to others or may be slight enough to be passed off as “everyone has a little of that; you’re getting older, you know.” In this case there’s a real tension between me and those who love me. They sure don’t want to see it and often there’s nothing to see, so how can they believe it: Their eyes contradict what you’re saying. This can be pretty painful because it often opens painful emotional wounds within the couple. Marja and I, for instance, had to work through her feelings of: “Why are you telling people before you know for absolute certainty.” It wasn’t the first time we’d tangled over my tendency to hang my emotions on my sleeve and her Finnish reserve.
2. My own learning is that we have to go at our own rate. Your wife is going at her rate, which is understandable. Right now is a very uncertain time for both of you. Is it possible to listen sympathetically as she shares her perceptions. And can she support you in the pain you’re having despite her thinking that you’re overreacting. That’s a difficult spiritual stage to come to as a couple but awfully important in this context.
2. In other cases, the affected person won’t or can’t recognize his own symptoms leading to a whole different set of problems.
3. I doubt that I’m alone in having trouble shifting identities. It wasn’t so difficult to go from a well person to a person with Alzheimer’s, but it was paradoxically difficult to switch back. So for me, it was harder to recognize that my symptoms had gotten slightly better.
I wouldn’t worry about the normal drivers’ test affecting your doctor’s judgment. I am quite sure that such a test is not at all sensitive to MCI. It doesn’t mean anything.
I can sure sympathize with recognizing your own symptomatology but not getting much support from outside.
Well, this is too much already. Maybe I’ll make it into a separate post. Thanks for writing.
3. AD gets little enough funding as it is, so most was directed towards finding treatments.
Hi David, As I read your statement above, I wonder about myself. There is just so much that is unknown.
ReplyDeleteI have seen pictures of progressive Pittsburg compound PET scans. These certainly seem to confirm the diagnosis before death, or do they? Have you ever had these? I haven't.
In my case, there is a question about whether my proactive life style which included Best Practices, or perhaps one or more of the meds I am taking could have anything to do with my long stay in Early Stage.
I really can't say there is no progress because some things are getting worse. However, some things that were problems when I was first diagnosed have abated. So I guess for now, I'll keep the diagnosis and act accordingly.
And for me, the actual diagnosis really doesn't make much difference. I have chosen an Assisted Living Facility and am quite pleased that I'll not be relocating there in the immediate future. I am thrilled that I'm able to continue doing the things I like.
My diagnosis has led to my work as an Advocate for the Alzheimer's Association. I'm told that what I've preached and written about has led many to get tested and others to change their life style. That has been good.
There are many throughout the country whose path is a crawl. Are these all misdiagnosed? Or is our ability to diagnose still in its infancy?
It has been my experience that given the same test scores some doctors will say all is OK; some say MCI; some say AD and others say a mixture.
For some, if giving a certain medicine will be harmful, than one must strive for a better diagnosis. For others time will tell and one should be as proactive as possible in dealing with it.
Thanks very much for you comment. It raises important questions. I'll take a couple of them here and hope to deal with others in later posts. (Please don't take any of the following as gospel; I am not a professional and have a history here of plenty
Deleteof mistaken opinions. This is just the best I know now)
1. There are two radioactive tracers that are used in the PET scans to look for the amyloid protein, which is at least one of the culprits in Alzheimer's (AD). I've had both tracers in two separate scans. Each is equally reliable. If the test is negative (like mine), the likelihood that you don't have AD very high, over 97%. which in medicine means almost a sure thing. (In statistical speak, this is the false negative rate: 3%). I you do have a positive test there is still a 20% chance that you don't have AD (the false positive rate.) So the PET scan is very reliable if you have a negative scan, not so much if you have a positive scan.
2. As far as I know, There is no convincing scientific evidence that you can do ANYTHING to slow down AD. There is SOME evidence to show that a healthy lifestyle (especially exercise, diet, and low stress) may slow things down. Currently available medications are for cognitive symptoms only and don't slow the progress of the actual disease.
3. Mild Cognitive Impairment (MCI) is just beginning to get the research attention it deserves. There have been reports that many people with MCI either stay stable or actually improve, but there hasn't seemed to much in the way of scientific studies. A friend just referred me to such a very recent Mayo clinic study (http://www.neurology.org/content/82/4/e34.full.html) , which indicates that about 40% of people with MCI will "revert" back to normal cognition when next examined. Quite a few others will not get well but will remain stable for some years. Of the 40% who revert completely, however, 65% of them go on to develop dementia within five years. I've only read the summary so far, so I have lots of unanswered questions. I will try to read the full Mao report more thoroughly and summarize and discuss it here in the near future.
So, yes, there's as lot that is unknown about your and my future. I'm with you, though; let's live as fully as possible within the uncertainty.
Hi David
ReplyDeleteI wonder if you take statins?
Anna :o]
I don't take statins. My cholesterol is good so I see no reason to.
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