Washington
DC
Monday was my first day in a Georgetown Hospital research
study of a drug so new it has no name, only numbers. It’s a double-blind study so neither the
local research team nor I will know whether I’m getting the real drug or a
placebo (25% chance). The drug is an
antibody that is supposed to attack and dissolve the amyloid
that gums up the synapses between the neurons in Alzheimer’s. The drug’s real effectiveness may not be so
much in treatment of symptomatic disease like mine but more in very early Alzheimer’s, that is, decades
before symptoms arise. It might even
prevent Alzheimer’s if give early enough.
And there’s the possibility that this study could even lead to a vaccine
that confers life-long immunity to the disease!
But that’s probably long after I’m dead.
Today was only the first day of five or six weeks of
testing to see whether I even qualify for the study; but it’s already stirring
things up for me emotionally. I suspect
I’ll be writing a few posts over the next months as the study continues.
The emotional impact today came from the preliminary
cognitive testing. The study is looking
at the effectiveness of the drug in “mild” cognitive impairment. If your score is too low (too much cognitive
impairment) or if it’s too high (too close to normal), then you’ll be excluded
from the study.
What astonished me was that my results were so close
to normal that I barely qualified for the study. I was stunned! I have lost so much of my thinking compared
to several years ago, yet it barely registered on the tests. When I asked the nurse about it, she
acknowledged that there were problems with testing “highly intelligent people”
(her words not mine) who apparently have a “cognitive reserve” that allows for
normal results on the usual screening test even in the presence of significant
impairment and disease.
The testing had two parts. The first was a basic screening test used in
neurologists’ office to indicate whether there’s any level of impairment at all. Because the study is double-blind, I don’t
know the exact results (except that I barely qualified for the study). I believe I had a perfect score on the first
test. The second one was more sensitive
than the first and meant specifically for the memory loss of Alzheimer’s. My memory for the objects I had to remember was
indeed terrible, and I’m sure that test made my score bad enough to qualify … yet
I almost did too well, anyway. If I’m
right that I had a perfect score on that first test, then I could have gone
into a neurologist’s office with my current level of impairment, been given the
appropriate screening test, and told there was no objective indication that
anything was wrong.
It would have been utterly crazy-making! I know
I’m significantly impaired. Getting lost,
being unable to figure out
spreadsheets (that I myself created several years ago), or making a $24,000
error in bookkeeping are not simply little exaggerations or deficits
everyone has. If I were told nothing in
was wrong, I would fear that I was imagining
things, which would have frightened and isolated me.
So how could I be almost too normal to qualify for the
study? Isn’t there something wrong with
testing if it can’t recognize my level of impairment? Perhaps finding very mild impairment in
“highly intelligent” people is more difficult, but it can’t be impossible. To avoid such crazy-making, it seems
necessary to try.
On the other hand, the tests did, in the end, pick up
definite cognitive impairment. With all
the publicity and the number of people hitting this blog, my wife Marja has
been concerned that I’d gotten too far out front with the public
attention. “What if you don’t have Alzheimer’s?” she said "How embarrassing would that be?!!” But the research center tests confirm the
diagnosis.
Marja is much relieved. Me, too.
Hearing you ~
ReplyDeleteThis is definitely one of the limitations of the current screening protocols. I used to do neuropsych testing as part of a study, and in testing myself I realized everyone should have a baseline assessment at some point, maybe at age 50 or so, so that there is a fair comparison point for later. I am in the 99th percentile for certain functions and if I dropped to the 89th, I'm sure I'd notice, and maybe even consider it a significant impairment. But without a baseline, the test would say I was well above average.
ReplyDeleteColleen:
DeleteIt seems to me also that encouraging neuropsych baseline testing would be a good idea. At this point, I can't imagine many asymptomatic people making an appointment with a neurologist to ask for baseline testing. I wonder if there would be a way of creating a reasonably reliable web-based test that would be relatively sensitive that could then be used later. I can see several problems in creating such a thing, but it would seem that some researcher could figure out how to make it work.
I also know it is important to test early. I am in a longitudinal study because of family hx and get tested each year. This year there were subtle changes. I had difficulty with a drawing and and could not remember and repeat a series of words that I had nailed in previous testing. Really shook me up butI think I am still several years out. The great thing is. My two daughters were also tested 10 years ago in their 20's. I believe my mom was ok at 65 but by 67 it was becoming obvious. I am 63. David you know yourself so well that it obvious to you when there is even a small change. Hopefully awareness this early will advance the cause for slowing and stopping the disease.
ReplyDeleteI think there would be value in early testing. My understanding is that this disease starts decades earlier than the symptoms do. Until recently, all we had was cognitive testing on one end and autopsy on the other. Now it seems there are some tests (particularly PET scanning for amyloid in the brain) that may demonstrate the brain pathology years before the symptoms develop.
DeleteSome of the studies of certain treatments seem to be showing that the treatments would be most effective very early in the process. We might be able to find the disease very early and keep it from worsening to the point where there were symptoms.
I love reading what you share, David. Tell Marja not to worry either way because those of us who read your blog do so because it's interesting and shares info we may need for ourselves or others in the future. Thank you!
ReplyDeleteThank you David for the continued reflections on yourself. I also feel the same as what Bea wrote.
ReplyDeleteI will be 59 soon and have notice a decline in mental functioning, I attribute that to aging. If one has a baseline at some time how do you differentiate aging from dementia or rule out personal/familial characteristics?
Wolfgang:
DeleteI'm not an expert, but it seems to me that the neuro-psychological testing is specifically designed to differentiate normal changes in aging from increasing dementia. For myself, I wanted to get myself tested as soon as I was sure that the symptoms I was noticing were real. We tend to err on the side of not getting tested; it seems to me we should err on the side of being tested.
You are relieved that you do have Alzheimer's. How our perspectives can change. What is the major difference between Alzheimer's and plain dementia?
ReplyDeleteDementia is a decline in mental functioning; it's a symptom that can have many causes. Dementia may be caused by little strokes, syphilis, alcoholism, head injury, certain kinds of intoxication, and Alzheimer's. Similarly, a fever is a symptom; once you know there's a fever you still have to figure out what is causing it. Once you know there's dementia (by taking a test showing decline in mental functioning), then you have to figure out what's causing it. It may be Alzheimer's or it may be any of the other diseases.
DeleteReading through some of your older posts, back in 2012, I laughed, reminded of something. Knowing of your career as a physician, I can see it now. lol. I worked in a special care unit, as you know, for quite some time. One of the Residents there was a retired BSN DON of a nursing home for many years. I was going crazy trying to get everything done to go off shift about 2:00 pm. And dressed well, color coordinated, the nurse (we never retire, you know), casually leaned on my nurses station and said casually, "you are just going crazy and look like you need help. Do you want me to do any treatments or any neb treatments for you?" "Um , no thanks, I got it." "Well, if you get swamped, remember where I am." and off she went. She really enjoyed the staff meetings, would sit in the back and listen. In some ways, it was cute. And in other ways, it was sad.
ReplyDeleteI can see myself thinking it was sad, too. But if she isn't sad, if she in fact enjoys it, then perhaps I could consider what makes me think it's sad. I can think of two reasons:
DeleteFirst, it could be my projecting onto her how I would feel in her circumstances. But, of course, if I were really in her circumstances, then I would "really enjoy" it, too. So why is it really sad?
Second, I look at her and think of the wasted potential. "She could be so much more; she WAS so much more." But why do we think that that "more" is better? If she's not sad, should I be?
I'm probably naive in this: I haven't been around people with Alzheimer's very much and I'm not very far along in my own disease. But I'm wondering how else we could think about this disease that might relieve some of the pain that we feel watching it from the outside.
My husband has good days and bad days, with some cycles stretching into good weeks and bad weeks. On a good day, he can appear completely normal. On a bad day, there is no doubt about his cognitive impairments. I think these cycles are typical until later stages of the disease.
ReplyDeleteI experienced the same doubt your wife did early on. There were times I thought, “Maybe I am just blowing things out of proportion, or being too critical, or imagining it all.” But the bad days always returned to remind me his condition was all too real.
Enjoy the good days! Take it easy on yourself on the bad days.
It's curious that you'd be worried about the embarrassment that "not having Alzheimer's" might bring. Your intention for blogging about Alzheimer's is, in part, to remove the "stigma" associated with cognitive decline, right? Do you feel there would be a greater stigma to your decline sans the Alzheimer's "label"?
ReplyDeleteYou've raised such an interesting issue with respect to how we measure cognition and how we value mental ability (or lack there-of). Who decides what's normal? Do you think that people are generally more comfortable with decline due to "disease" versus "aging"?
Thanks for sharing your perspectives - they are so valuable.
- Anonymous
Your question about we'd prefer mental decline due to aging or disease is interesting. I think most people would prefer aging. It feels more innocuous and certainly less embarrassing. Problem is that normal aging does not involve becoming "senile." What used to be called senility is some kind of dementia, mostly Alzheimer's.
DeleteBut the label of Alzheimer's is such a loaded term. Culturally, it's become a bogeyman. Almost every media image of Alzheimer's is of end-stage. But there are lots and lots of us out here not in end-stage disease, and for most of our journey with Alzheimer's we don't fit those media images of babbling old ladies or wandering old men.