Seattle
WA
I notice that I’m allowing the uncertainty of my
diagnosis to inhibit my blogging. As I
said in the last
post, the uncertainty is not that difficult for me personally; my symptoms
are no less real to me than before. I do
realize, however, that, for many other people, the lack of objective evidence
of cognitive impairment renders the value of this entire endeavor questionable. Whatever my subjective experience, if there’s
no medical evidence of Alzheimer’s (or, worse, no evidence of cognitive
impairment at all), then, for many others, this blog might be an interesting
study in psychosomatic illness but of little interest to those who are
concerned about the inner experience of Alzheimer’s. For those particular people, my writing about
my symptoms may seem an almost pathetic, last-ditch attempt to convince myself
and my readers of the reality of these symptoms.
All of which makes me a bit defensive writing this
blog. Nevertheless, this blog is about my
experience of whatever-I-have, so that’s what you’ll get. In fact, of course, the doubt of others and
my defensive reaction to it are all part of the process, anyway. I just wanted you to know what’s going on
internally as I try to sort out this new phase.
Anyone with early Alzheimer’s, I suspect, has such
doubts. As I’ve worked with my
uncertainty of the past few months, it’s been helpful to categorize my symptoms
into two rough and overlapping groups.
First, there are the
“Well-that-could-happen-to-anyone” complaints, such as loss of memory,
difficulty in word finding, deterioration of my ability to type, and so
on. Everyone has experiences like these
and they increase as one
ages. They’re poor evidence of
disease.
Then there are the “Now-that’s-real-impairment”
symptoms: getting
lost in a place I knew fairly well, the severe loss of ability to work with
spreadsheets,
the episode
with the keys and others. These are
not easily dismissible.
Over the course of the last three years, I’ve had a
number of the latter “Now-that’s-real-impairment” symptoms. They occur only infrequently—the last was at
the beginning of August—but they’ve been important in helping me and others to
accept my diagnosis.
There are also two things about the “Well,
that-could-happen-to-anyone” symptoms that remove my doubt. First, their frequency has been staggering:
- I now search around the house multiple times a day every day to find things I’ve just put down. Not only have lost my beltpack three times over the past couple of years but I would also have lost it several more times if someone else hadn’t noticed and pointed it out to me.
- Anyone can have trouble word-finding, but I am daily having to use less-than-satisfactory substitutes for the word I want
Second, these symptoms may be normal for some people
but they are decidedly not normal for me.
- It wasn’t until yesterday when I reread last week’s post on the difference between Alzheimer’s and normal aging that I recognized I’d written about the same thing at least twice before (here and here).
- I’ve been forgetting some of the “shortcut keys” that I’ve used in my word processing program almost every day for over ten years. Only later do they come back to me. My wife Marja is unimpressed: “I can’t remember any of those shortcuts at all.”
Maybe some other people have trouble with such things,
but I never did before.
Because I’ve been aware, however, of how my normal
tests this might seem to some others, I’ve become almost embarrassed to be
writing these posts. But then I remember
the purpose of this blog: to describe my own experience of cognitive
impairment, whether or not it’s convincing to others. I’m to write down the truth of my experience,
and it’s up to others to decide whether it’s helpful for them or not. My truth at this point includes my defensiveness and my reluctance to write about my
symptoms. If this turns out to be a
chronicle of a “worried well,” so be it.
A hypothesis. You started out with superior intelligence. For some reason, perhaps just aging or stress, it's morphed into normal intelligence. Thus you notice a decline, but you test normal.
ReplyDeleteI agree with anonymous. You have so much knowledge and are so bright that the experts do not notice your decline. Yet you do. My sisters work as nurses in a memory care facility, and said that bright people with excellent memories to begin with often go un noticed for years. My husband received a diagnosis similar to yours last November. We are doing the things we planned to do upon retirement, and are ignoring the medical people...as they would have my Charlie give up his travels to participate in a clinical trial. Yes, we are doing what is best for us, not the greater good for mankind. There is plenty of time for that when he can no longer travel . Selfishly I hope you continue your blog. It has been an immense help to us!
ReplyDeleteWhat both of the above comments are referring to is a concept known as "cognitive reserve." Tests have to be standardized, usually against people of average intelligence. Since many of the items on the cognitive impairment tests are similar to IQ tests, it's not surprising that people with above-average intelligence can get further along in their disease before those tests become abnormal.
DeleteMore sophisticated tests standardize against populations of similar education, in my case college- or graduate-level education. While this gives more accurate results the level of education is no where near a proxy for intelligence.
The most accurate testing would occur if the tester knew the person's previous intelligence. Current test results could then be compared to previous test results.
That is one reason why neurologists are reluctant to make a diagnosis without documentation of progressive disease. If test results show more impairment now than a year previously, that's pretty good evidence of impairment no matter what the score on the standardized tests.
A friend of mine had an aggressive brain tumor. After each surgery where they had removed part of her brain along with the tumor, they had her take an IQ test. Eventually she would get a letter, one sentence, saying that on this date, her IQ test result was XXX. It broke my heart to watch her, when she became quite impaired, carrying around this bunch of letters and showing them to people saying, "See, I used to be smart." I wish they had kept the comparison results to themselves.
DeleteI stumbled upon your blog several months ago. I've found it extremely interesting. I recently retired at 63 because, although no one else noticed, I have noticed a marked decline in my acuity. I am not sure if that was the right move. But it is what I decided. I fond myself now with a number of the symptoms you display. My husband thinks I'm crazy for worrying. But my Mom had Alzheimer's as did at least one of her sisters. I am encouraged by the comment by the first anonymous. I have been told that I am smarter than most and don't think like other people. Maybe my "decline" is what other people would consider normal. It sure doesn't feel normal to me. PLEASE continue! There are people, like me, who need to hear you.
ReplyDeleteI too agree with these posters. I find your blog interesting and insightful, and that is true for me no matter what your diagnosis or lack thereof may be. We are all such complicated and interconnected beings, I think it a bit presumptuous for doctors or anyone else to claim absolute and certain knowledge of most things. Thanks for your postings, and especially for your honesty.
ReplyDeleteI agree. The good doctors, of which there are many, will be transparent with their patients and let them know what level of confidence they have in the diagnosis. My neurologist, for instance, told me I "probably" had Alzheimer's but also told me that until there was more evidence, he couldn't be sure. But there's a tension: If we want our doctors to be straightforward with us, we have to be willing to accept an answer like "I don't know." Some of us will go from doctor to doctor until we find someone who is willing to suppress his or her doubts; that's fine, but when the diagnosis turns out to be wrong, we shouldn't blame the doctor for getting it wrong.
DeleteA radiologist who traveled weekly to visit our isolated, rural clinic many years ago once said to me: "I may be wrong but I'm never in doubt." That's one choice; my own choice as a physician was the opposite: "I don't like to be wrong, so I'll have to put up with lots of not-knowing.
I am searching for people who are experiencing what we are and just found your blog. My husband has a Ph.D. and is a brilliant man. He has always been quick with understanding ideas and concepts. Now that he is failing, I initiate jokes such as "lets rehearse the grocery list " because, at this stage, that works pretty well. If I just hand over a list, he tries to get it right but makes "funny" decisions". Making a joke of his decline has been working but I feel scared and alone. What is next? We have no family here and only acqaintenances.I am thinking about moving back where I have family and support but I'm afraid that disrupting his routine will result in more rapid decline but I need help. What should I do? Your blog reminds me of what L. would do if he openly acknowledged his condition.
DeleteI'm a little uncertain about your husband's recognition of his impairment. You write that you make jokes about it together, which indicates that he must to some degree recognize what's going on (otherwise the jokes would be offensive), but then you imply that he doesn't openly acknowledge his condition.
DeleteIt seems to me that one can think in terms of three different ways affected people relate to their symptoms: 1) they recognize them and are either willing or unwilling to talk with others about them; 2) they recognize them unconsciously but are defensive about acknowledging them to others, or even to themselves, 3) they don't (and often can't) recognize them. (You might find my post of Aug 21, "It's Not Denial" helpful.)
In the latter case, it's generally not helpful to try to convince a person of his impairment. In the second case, it's important at least to try to talk about the symptoms in order to give a person a chance to talk about them, but whether to push it or not is a difficult, individual decision.
In the first case, however, I think it's important to try to talk about it. Most likely he recognizes his impairment and is afraid to talk about it for many reasons, the main one being his fear of the other's reaction. Your bringing it up gives him permission to talk more freely.
I believe it's important to be able to talk about it, ESPECIALLY for the future caregiver. Plans must be made and it won't do any good to wait until a person is so impaired that he can't really participate. More important, people with Alzheimer's will gradually slip away. Both the affected person and the caregiver need to recognize the truth of that reality; reducing their fear and allowing them to prepare themselves emotionally is, I believe, critical.
Obviously I don't know your situation well enough to give you advice. But I believe that, in general, it's best to be able to talk about it and it's usually not nearly so difficult as assumed.
Please continue writing. I find your regular posts most helpful.
ReplyDeletePerhaps the uncertainty of your diagnosis has more to do with the problems of the measurement tool than in what is being measured. It shows how science has yet to keep up with reality. Please continue blogging. Your blog helped me tremendously in understanding what my mother might be experiencing, and I have recommended it to many others.
ReplyDeleteThank you for sharing your defensiveness and your uncertainty. Please continue to share what you are feeling as this evolves; it is helpful for the rest of us out here!.And much appreciated.
ReplyDeleteI agree, your posts are insightful and helpful, whatever the etiology of your symptoms. My husband was diagnosed with mild cognitive impairment 5 years ago, and you have provided a window into what may be going on in his head with your posts. I hope you will continue posting, and I wish you all the best.
ReplyDeleteDear David, I hope the replies to this post put to rest your worries about your blog. It is your personal tool helping you traverse this obstacle course of life. It is also a profound help to many others who are grappling to understand similar challenges in their own realities. Please continue!!! I too, am one of those full of appreciation for you and your honest sharing. It's not the destination...or the diagnosis...or even the answers that are helping us. It is the open sharing of your journey that is aiding us in ours. My Mom passed in 2006 at the age of 66 with early onset alzheimers. So far, the most difficult experience of my life. Hers was the 9th brain from my family donated to the WSU Alzheimers Research Lab. I try to live as I would without this shadow, but it is always in the depths of my psyche...what about me? Your blog is helping me to understand what my Mother went through. It is also helping me to honestly address my own fears. I am 50, and noticing subtle changes in my cognitive functioning already. Diet, nutrition & exercise are the areas I am focusing my energy on. Eating & drinking organic veggies, reducing animal products, eliminating gmo & other toxic foods...i could go on. We must all find our own path...but it's awesome to know you are not alone. I look forward to traveling with you through your blog. Aloha, Jen
ReplyDeleteAmbiguity is hard. My husband has a more definite probable AD diagnosis but I recommended this blog to our children and to him because it sounded like our situation. I'll be interested in the rest of the story. Keep blogging.
ReplyDeleteI just found your blog and do hope you will continue! My mother has Temporal Lobe Dementia which typically onsets in the 60's. My mother was 86 before we were able to get a diagnosis in part because she was very intelligent and an excellent 'test taker'. She kept passing the tests with flying colors but when the neurologist was pushed into just sitting with us and a nurse and 'chatting' mom relaxed and the doctor saw for herself that mom could not remember how many children she had or their names or even have any memory of her husband of 50 years. Mom had recognized the symptoms a couple of years earlier but we did not find them as disconcerting as she did until they became severe. Denial at it's finest.
ReplyDeleteHang in there. Keep blogging!
I find your posts informative no matter what the diagnosis may or may not be. I have dealt with Alzheimer's disease as a long term care professional for 30 years. There have been so many changes over the years, I can only agree with the other posts that remind us there is still much more unknown than known. I am now finding myself in the role of family member since my mother was diagnosed a year ago (although I could see the symptoms 2 years prior). I have watched over the years as people and now my mom, struggle knowing something is not right. It seems that like cancer was the big C no-wanted to hear when I first started in healthcare, Alzheimer's is the big A. Some are comforted having some kind of answer while others are terrified by the big A. Keep writing, your insights are very valuable.
ReplyDeleteThe more you know, the less you know.
DeleteI find your blog to be extremely valuable and, in its own way, comforting in the sense of "you are not alone." My caree has gone through a hodgepodge of diagnoses, from OCD to schizophrenia to MS-that-acts-like-traumatic-brain-injury (our current "definitive diagnosis"). To that, her neurologist has now added that her long-ago "probable viral encephalitis" diagnosis, later thought to have been her MS onset, may have instead been an attack of ADEM.
ReplyDeleteLabels are double-edged swords. Ideally, they help us find the best treatment options and convey a sense of closure, but they can also blind us to ambiguities and outliers. They also foster an in-group, out-group dynamic that is itself a double-edged sword. Loss of a label throws us back on the strength of our own inner-directedness and self-trust. Living with uncertainty can also be a lonely business.
I believe you are doing very important work by being candid about your own authentic experiences. Lack of an accompanying label makes them no less valid. On the contrary; I believe you are making the invisible, visible. Furthermore, yours is also the perspective of one trained and experienced as a physician; you have knowledge and insights the average layperson does not. I for one am very grateful for your voice.
There is so much unknown about brain disorders, so much overlap in symptoms between different types of dementia, and so much uncertainty about diagnoses. Since my husband’s diagnosis of dementia, I have read many research articles, most of which serve to illustrate how much is still unknown. I recently found one that might be relevant to your uncertainty. It describes something called “suspected non-amyloid pathology (SNAP)”, in which adults test as cognitively normal, have negative brain-amyloid scans, and yet have other biomarkers of neurodegeneration. Perhaps these people, like you, know that something isn’t right, yet they fall in the normal range of standard tests. Here’s a link to the article: http://www.alzforum.org/new/detail.asp?id=3636 Good luck, keep asking questions, and keep blogging!
ReplyDeleteThanks very much for this reference indicating that people can have cognitive impairment even when the PET (positron emission tomography) scan for amyloid shows no evidence of amyloid. Since amyloid is characteristic of Alzheimer's this study is quite specific in showing that people can have other physical evidence (called "biomarkers") that are positive while the PET amyloid is negative.
DeleteThere are several biomarkers that are used in this study. One is a spinal tap for another protein (called "tau") that is also associated with Alzheimer's. Another biomarker a is different kind of PET scan that looks for the amount of sugar (glucose) used by brain cells over a period of time; if there are areas of the brain that show less-than-normal use of glucose, it indicates a level of neurodegeneration (damage to the brain). The MRI (another kind of x-ray) is the third biomarker used; if there are changes in the anatomy of the brain, that also indicates neurodegeneration.
This is obviously a sophisticated study. What it shows is that people can have other physical signs of cognitive impairment even though the PET scan for amyloid is negative.
In my own case, I have not been tested for the tau protein in the spinal fluid, but I have been tested by the PET-glucose scan and the MRI, both of which are also normal. So I don't have any physical evidence of damage to the brain.
I've been a silent reader for quite some time. I find everything you write to be interesting because it is valid for you. These are things you feel and have experienced, diagnosis or not. Whether it is "growing older" or cognitive impairment or psychosomatic, they are real experiences. That said, you should not feel the need to defend yourself. Not having a category in which to fit your thoughts does not negate them in the least.
ReplyDeleteThanks. I'm gradually learning the lesson, which has been difficult to learn quickly as I've had such a scientific mind and a scientific career for so many years.
DeleteI wholeheartedly agree with the many readers above who encourage you to keep writing and who find your posts insightful, reassuring, and informative. An avid "When the Lights Go Out" follower, I find this challenging new development in you journey enlightening and helpful.
ReplyDeleteAt 45 I am seeing many signs of my own cognitive impairment and have been documenting them in preparation for a trip to the neurologist that I know is imminent. I have a strong, sneaking suspicion that, due to my level of functioning, I may be told that I do not have AD. However, like you, I have noticed undeniable declines in memory and functioning that are, at times, alarming. My father, grandmother, and assorted other relatives have been diagnosed with AD - most of them early onset - so I certainly have the family thing going for (or against?) me.
This disease, quite frankly, scares the crap out of me (colossal understatement). Your ability and efforts to stay present and in the moment both during your "knowing" you had this disease, and now with the uncertainty of diagnosis, is a guiding light for me and, I'm sure, multitudes of your followers.
Thank you for your candor and your willingness to blog through your uncertainty. I sincerely hope you will continue to do so.
Cathy