Since my thorough neuropsychological evaluation for cognitive impairment in late August, I’ve been nervously awaiting the results, which had been delayed in part by the government shutdown, including the National Institutes of Health (NIH). Last Tuesday, I finally got them: the tests were completely normal; there’s no sign of cognitive impairment.
This is, of course, wonderful news and should be a great relief. I tend, however, to be a glass-half-empty kind of guy, and I don’ feel much relieved: I’ve traded a diagnosis (Alzheimer’s disease) for a set of disturbing symptoms with no reasonable explanation.
In case you’ve been reading these posts only occasionally, let me summarize my situation. About three years ago I started having symptoms of cognitive impairment (getting lost, inability to perform certain bookkeeping responsibilities, increasingly poor memory, losing things constantly, and so on). Two years ago I visited a neurologist who administered the usual cognitive testing, which revealed mild impairment. Repeat testing a year later also show a mild degree of impairment. Other major causes of cognitive impairment were ruled out, so I was left with a diagnosis of Mild Cognitive Impairment (MCI), probably Alzheimer’s. This blog has been a description of my ongoing experience with this impairment.
As part of research studies that I’ve participated in, I have now had three brain scans over the past eight months, none of which has shown any sign of Alzheimer’s disease. This most recent neuropsychological set of tests at NIH was very intensive and extensive, about four hours in length. Unlike the previous, less thorough tests of cognitive function, this more rigorous evaluation shows no sign of cognitive impairment.
So I now have a set of symptoms that have impaired me for several years but for which I can find no reasonable explanation. The reason I have avoided making entries in this blog over the past week is that I haven’t known what to write; this has so stunned me that I’ve had to talk it through with family and some friends. So far, I can’t explain it in any reasonable way. Here are some of the thoughts I’ve had.
- Perhaps my previously diagnosed cognitive impairment has resolved and I’ve gotten better.
Unlikely. My symptoms haven’t gone away. Also, any cause of cognitive impairment (of longer than six months) that might improve with time (vitamin B-12 deficiency, for instance) has been medically ruled out. These things just don’t get better.
- Perhaps all the brain scans and the neuropsychological tests have been wrong.
Unlikely. Any medical test, of course, can be normal even when the disease is present. In the case of the tests I’ve taken, this “false negative” rate is very roughly 10% for each. Mathematically, that means that there is more than a 99.99% chance that at least one of the tests would be positive if I had Alzheimer’s.
- Perhaps it’s some other form of cognitive impairment.
Unlikely: Not only have I been thoroughly evaluated to rule out the other reasonable causes, but the intense cognitive testing indicates no sign of impairment for any reason.
- Perhaps I’m imagining it.
Always a possibility, but people very close to me have also seen obvious evidence of impairment for several years and no one, including a trained psychologist who knows me well, finds this possibility credible. I don’t either.
There are a number of other possibilities I’ll explore in later posts, but for now, any explanation I’ve been able to come up with is highly improbable.
As I written before, all of this can be extremely unsettling. For several days last week, I felt quite unmoored. I’d come to terms with my identity as an Alzheimer’s patient and now it had become, at the very least, uncertain. This life over the past year as an Alzheimer’s patient had become very meaningful and fulfilling. What was I now? What was I going to do?
But after lots of conversation with friends and family, I no longer feel so unmoored. This is but one more twist in a bumpy, uncertain road. I can trust myself and my perceptions. I can simply wait for the next step in this strange journey. I feel ready to let go and see what exciting thing will happen.
These test results, whatever they ultimately mean, are good news. At the very least, the impairment I perceive is progressing very slowly. At the very least, this is another opportunity to learn to live with uncertainty, just as most people with mild cognitive symptoms have to. It’s an opportunity to let go of self.
This wild ride continues.
Perhaps we just don't know everything about everything...ReplyDelete
Yes, but it's awfully easy to forget sometimes.Delete
Congratulations on the very wonderful news regarding the results of your neuropsychological exams. Even a glass-half-full person would experience the feeling of being unmoored. A recent novel I read described such change "as if life had suddenly put a different reel in the movie projector midway through a screening". It is dizzying.ReplyDelete
I had a similar experience with extensive cognitive testing after five years of living with a diagnosis of Alzheimer's disease. I posed all of your questions and more; I even paid for copies of my medical records to see if I could solve the mystery that my neurologist couldn't. I finally let it go and got on with the rest of my uncertain life.
During my Alzheimer's journey, I found a way to live with intention, with deeper connection to people, and with joy. I want to keep this for the rest of my life. The threat of Alzheimer's disease is a reminder to all of us to live life as fully as we can.
I think you've touched on one of the keys. Regardless of the ultimate outcome of this process, can I take what I've been learning this past year: living with intention, having closer relationships with people, taking time to be with those who are important to me, prioritizing joy over responsibility, valuing myself, not taking my "self" so seriously; can I remember and retain all those learnings regardless of what the path becomes?
I look forward to this part of the journey, too.
Or perhaps as people with 1/8th or 16th bloodlines might choose to identify as one ethnicity or another, you could continue to identify (since you have come to terms with that identity and still exhibit symptoms) as having been diagnosed with MCI and carry on in the way that Phyllis has.ReplyDelete
Still, that's rather like a friend of mine who has excruciating headaches. Cancer and tumors and the like have been ruled out--none of which help the constant headache and all the upheaval that goes with it.
I am so very happy to now feel more hopeful about your prognosis, even though it seems more riddled with ambiguity and uncertainty than previously.ReplyDelete
I wonder if what you are experiencing is similar to a cancer patient being told, somewhat hesitatingly, that she now "appears to be in remission"?
to live gracefully and lovingly with Uncertainty. With or Without,ReplyDelete
this is IT. a truly beauty Full post. i look forward to continuing along
your life's Path....
Thank you, for all of it
Peter Whitehouse, MD, neurologist who has worked for nearly 30 years in the field of dementia, including what is called Alzheimer's, has just written a lovely essay : Taking on the contemporary “dementia industry” http://www.themythofalzheimers.com/index.php in which he argues that it is time to “re-inject humanity into the unloving scientism and unjust capitalism of the contemporary dementia industry.”ReplyDelete
As a caregiver for my husband (who has been living with cognitive impairments, symptoms of dementia, for a couple of years, diagnosed as early dementia, probable Alz) and as a psychotherapist, I have found Whitehouse's work a great help in making sense of all the testing, diagnoses, etc. And in supporting my husband's and my long-term commitment to making all our decisions in light of the big picture of the global community.
Might be helpful for you, David, at this point, as well as for some others reading this blog.
Thanks so much for this great link. " Dementia industry" is a great phrase to describe what I've been trying to explain in too many words!Delete
I am very happy with your news. Joyous news many would love to receive!ReplyDelete
I have been puzzled since becoming of aware of your blog at exactly how your symptoms differed from "normal" symptoms of aging (http://www.alz.org/alzheimers_disease_10_signs_of_alzheimers.asp#typical) and your lack of progression of any type over 3 years. You also have taken advantage of the top-notch medical care in the D.C. area and a 3-year period of an incorrect or misleading diagnosis ("probable Alzheimer's) is disturbing. Is this a red flag that AD is being too casually diagnosed or seriously considered? Additionally, you seem to have been vague or confused about any access to support for either MCI (and 20% of people with MCI do NOT progress) or early AD support, another odd aspect. What does that mean for the millions who have less sophisticated medical care or live in less accessible areas? You have a lot more to explore on your blog if you are so inclined.
Good wishes to you.
In the interest of fairness, I should make it clear that my neurologist has been consistently emphasized that the diagnosis of Alzheimer's (AD) was not certain. As far as I can tell, the symptoms that I've had have been absolutely typical for AD, so the diagnosis of "probably AD was completely appropriate, the the best that the neurologist could have given under the circumstances. It's only recently that these more advanced brain scans (PET scans) have become available, and their value in clinical practice has not yet been determined. I've been fortunate to be in an area where much research is being done, where I could have access to the special studies--all unavailable or very expensive--nut usually included in the routine work-up.Delete
But you're certainly right about my need to further explore Mild Cognitive Impairment (MCI) and what it means. From the reading that I have done, it appears to me that there is a great deal of confusion over just what MCI is. It's really a symptom (as pain in abdomen might be a symptom) not a diagnosis and appears to have many different causes. I am not yet familiar enough about what IS known, and there is certainly lots that isn't known. I fully intend to spend some time exploring this in the future.
I plan also to explore some of the differences between the changes in normal aging and MCI in the near future.
Thanks for pointing some of those questions out.
I hope you continue this blog, because it has helped so many.ReplyDelete
also, I am posting this article which appeared in the Philadelphia newspaper some time ago about the effects on cognitive abilities and statin drugs.
perhaps this will be helpful to your readers.
An astronaut discusses his statin related dementiaDelete
An FDA release from Sept 2013 regarding statins and possible REVERSIBLE memory loss (not actual cognitive impairment) with statin use can be found atDelete
Unfortunately, discontinuing statins did nothing for me but good info to have for the users of this medication and for physicians. Thanks for pointing out this link.
Another area that I hope to explore here in the future is the role of drug side effects in cognitive impairment.Delete
This is very interesting. It reminds me of 2 accounts of highly intelligent men who have cognitive impairments but as yet test normally because of their cognitive reserve. I'm going to research and find them & send the links - probably by email. It may take awhile as family is due to arrive in town shortly, but I'll put it on my list!ReplyDelete
The best cognitive tests now take into account educational level but not baseline intelligence level since objective evidence of baseline intelligence is not usually available for people who come in with symptoms of mild cognitive impairment. The question of "cognitive reserve" always hangs in the background when you have normal results on a cognitive test.Delete
My husband, too, was diagnosed with MCI over 7 years ago with probable ALZ. He also had brain scans which showed nothing and many people didn't witness any handicaps. He eventually was rediagnosed with Lewy Body Dementia. It is slower moving but still progressive. There are other symptoms associated with it which a trained clinician could evaluate with you. It has given a different light to the problems he is experiencing but not a clean slate. His first psychoneurologist said, after over 4 hours of testing, "he shows problems but not any of the usual ALZ symptoms that should show up." So, after 7 years, he has continued to regress but not as dramatically as someone with ALZ. Perhaps something to research further?ReplyDelete
One of the things that medical people (like myself!) tend to forget is that there are many situations that fall between the cracks of our usual diagnostic evaluations. We must remain humble and recognize how little we know.Delete
hi Dr. Hilfiker,ReplyDelete
Thanks for writing this blog. Your story has taken quite an interesting turn recently!
As a geriatrician and former primary care doc, I've certainly come across the maybe-probably Alzheimer's situations...the uncertainty, as you know, is often so hard for patients and families, and tricky on the clinical side too. And then as a geriatric quality improvement nerd, I've often thought about how to scale good care for the diagnosis and management of cognitive impairment...not easy to figure out how we'll do it as a society.
Your story is really fascinating. I hope your clinicians and care team will be able to support you in coping with the uncertainty, and also in helping you have the best function & wellbeing possible.
Thanks again for sharing this journey with the rest of us.
Miracles happen everyday.ReplyDelete
Unsettling for you, but certainly fascinating for your readers; especially for those of us who know someone in similar circumstances, or see similarities in their own lives with yours. Clearly you are not alone in seeing symptoms you dislike, with or without multiple, lengthy, tests.ReplyDelete
So I certainly hope that you will continue to blog, and I am sure there are many others.
Is there any chance that depression has had an effect, and, if so, what about starting to look at, or look for, half-full glasses? Every time you see a downside, you make like Pollyanna, and see the butterfly emerging instead of watching the chrysalis ripping?
In case that just doesn't feel right--well, I could argue that you've already done that in starting, and writing, your blog. So maybe you could try it more specifically. If that kind of personality change really feels foreign to you, but you want to try it, you could tell yourself that you'd try it for, say, four or six weeks. (I play mind games like setting time limits when I have to do things like finish the taxes, and I think it helps.)
In any case, thank you for sharing your journey.
Depression is certainly one of the reversible causes of cognitive impairment. I have a long history of pretty severe depression, but began excellent medication almost twenty years ago that has kept me depression-free. When I began those medications, it was like beginning a new life. I know what depression feels like, and I haven't been really depressed for a long time. So depression is an unlikely cause.Delete
Certainly practicing gratitude is an important spiritual practice that I do my best to remember.
Well, regardless of the unmooring you feel, its good news! While it may eventually be something else, you have a reprieve for a bit.ReplyDelete
Remember when you blogged about Communion in Church, and instead of turning and giving Communion to your friends, you went and sat down, then realizing you did it wrong. That had made me curious, because I know People with AD thrive on routine and habit. And I wondered why you weren't thinking as a person with AD, only doing well with routine, and getting confused with newness. Instead you got confused (maybe thinking of other things) while in a habit situation. Know what I mean?
Did they do a urine test? Do you have any problems with your prostate? My Dad had a difficulty with his prostate and they found he was retaining a lot of urine, which kept getting infected. He'd get confused at times when the infection was worse. Not to be personal here, but these are thoughts I had. Working in special care units, with a UTI, an AD patient can get totally combative, practically catatonic, or totally wild. People in regular assisted living will do the same at times. Maybe a good regular physical with your GP will find something that is physically changed and causing a slight memory difficulty.
At some point in the near future I hope to write about the definition of dementia. Part of the definition is that the impairment must have lasted over six months. Symptoms of less than six months duration may be, instead, delirium. Symptoms of dementia show up gradually over periods of months, while delirium usually appears over a shorter period of time, may fluctuate wildly, and are especially common side effects of intoxicants, infections, and other serious medical disorders.Delete
I'm pretty sensitive (perhaps overly so) to my own health issues and see my primary care doc for regular appointments, so I don't think other health problems are involved.
I have an idea about where the cognitive impairments that so many of us (I'm mid 40's and I feel it too, as compared to 10 or 20 years ago) are aware of are coming from. I wonder if it's related to computer use. I have reduced attention span and reduced short term memory. I have episodes where I forget what I am doing, where I am going, etc. etc.ReplyDelete
I don't have a cellphone but I am a heavy computer user. I've been wondering for some time if technology is altering our brains and the way they work, and I really think there probably is some re-wiring going on.
Luckily I'm not a smart phone user or a GPS user, I think people who rely heavily on those devices are also becoming impaired.
Now that you are free of your Alzheimer's diagnosis (I am not surprised, I wondered if it was an accurate diagnosis), one thing you could try is learning a new thing to test to see if you can get some of that memory back. At worst it will help to pinpoint your symptoms better. I'd suggest learning a language or a musical instrument (you don't mention whether you play anything already). See if you can do it. I've improved my memory and focus recently by developing a routine where I spend at least 10 minutes a day on both improving a second language and improving my abilities on a musical instrument. Give it a shot. I do believe your impairments are real, and I also believe many of us are suffering from some of the same ones, without it being something organic.
Absolutely incredible. Thank you for sharing this journey, no matter how many twists and turns it takes.ReplyDelete
As a care partner I have been through a similar journey. She was initially diagnoses with AD and then with MCI. After the first test that was "average" we had a big fight. She was thrilled by the pronouncement. I was frustrated because the symptoms, our lives, were the same. We just had another round of tests and the same results. But this time we were wiser going into it. We have lived long enough with the reality of her cognitive problems to accept them. We now just shrug at the inability of neuropsych testing to capture what is happening to her. The science is too crude to measure the reality. Instead of getting caught up in the labels, we are focused on the experience and the skills. It helps a lot. As does your blog. Thank you!ReplyDelete
Several of my close friends have spoken about "trusting your perceptions," which is another way of saying what you've just written. I know my symptoms, I know my limitations. Whether they show up on an objective test does not change anything about my current condition. Diagnoses can be important for making treatment decisions and estimating prognosis, but they don't help much in the here-and-now. In this particular case, there would be no treatment anyway and the prognosis would be uncertain, anyway. So, like everyone else in the world, I have to live with great uncertainty.Delete
Recognizing the fragility and uncertainty of life is probably a good thing.
So happy to read these wonderful news, Dr. Hilfiker!ReplyDelete
Reminds me of a quote from Thomas Keating in INVITATION TO LOVE: "... the only thing we can be absolutely sure of in the spiritual journey is that whatever we are expecting to happen will not happen. God is not bound by our ideas. ... One way or the other, we will have to take the leap of trust into the unknown." Perhaps to some extent this also applies to our physical journey.
Looking forward to following you on your journey into the unknown.
"Whatever we are expecting to happen will not happen."Delete
will you change the title of your blog?ReplyDelete
There will be quite a bit to change about the blog and my website. The title still holds at this point, at least as far as my subjective experience is concerned. Certainly the subtitle needs changing. But I'll have to explore slowly how to modify the wording. At this point the only thing that has really changed is the uncertainty.Delete
I am hoping this is good news. But I also understand the uneasiness of not being able to give a name to your problem. I assume you have had all of the standard blood tests, etc. that are used to diagnose other conditions.ReplyDelete
Dementia diagnosis is heck. Nothing simple about it. I suspect brain scans too often show up nothing in the early stage, but it is interesting that the neuropsych tests do not show anything. If those were done in 4 hours I suspect they weren't the full range of tests, my wife's tests took 8 hours 5 years ago. That provided more information than any brain scan.
Please keep up your blog. And hopefully your wife is keep her own journal. And live life as well as you can.
I understand your reluctance to celebrate but I think you left out one possibility in your list: a miracle.ReplyDelete
As a man committed to Christ, I believe this may have been his gift to you.
I am a relatively new visitor to your blog and signed up for email notifications of new posts and am reading (this post) for the first time today. It is true that I have not read (many) back posts and this I will do.ReplyDelete
I am thrilled at your good news yet appreciate how this good news has left you with uncertainty.
Is it not a possibility that at some time you (might have) suffered a ‘mild’ form of viral encephalitis (herpes simplex)? I ask this as I did so over twenty years ago. It presented (atypically) as a heavy cold over five days and nothing more bar a smattering of cold sores the night before I woke up as somebody different…
I was off sick for two months with balance, vision (diplopia), memory and other problems and it was six months before I felt I had truly (almost) returned to a state of normality.
It is true that even now, especially when tired, I have memory, balance and vision problems and I find it very difficult to ‘think’– but not to an extent that these interfere with daily living. I just accept them for what they are (initially stressed and concerned by same which of course made them worse) - and it was not until I entered nursing (mental health) that I realised how lucky I was when meeting a patient whose short-term memory had been completely destroyed by viral encephalitis.
Something to consider maybe?
The kindest of regards
In my own case, I never had the signs of acute encephalopathy, so that is unlikely to be a cause of prolonged cognitive impairment. Ultimately, of course, anything is possible if you're willing to accept minuscule odds. And one of those "anythings" may turn out to be the cause. At this point, the task is to accept where I am and remain interested in what's coming.Delete
That Is Wonderful News , Sir , For , It IS A Terrible Disease !!!!ReplyDelete
Please Keep Us Up To Date !
Thank You , So Much !!
This comment has been removed by a blog administrator.ReplyDelete
This may be the first non-spam comment that I've deleted from the site, but I am trying to keep the site free of advertisements for commercial products.Delete
An earlier commenter mentioned statins but as one who had a very bad reaction to them, I'd like to underline that possibility. The problem with statins is they stop your body from producing CoQ10, something that can also be due to aging and cause similar symptoms.ReplyDelete
Congratulations on your undiagnosis! I was interested in how your neuropsych tests were going to come out.ReplyDelete
When my husband was going to take the tests I cautioned my son, “Sometimes people who are very smart, like your father, can pass those tests with no mistakes, even when their wife and children may notice that there is definitely something wrong. So don't get your hopes up that these tests are going to give us any answers. They may not.” My son responded, “Dad's not going to pass the tests.” My son was right in our case, but the fact remains that intelligent individuals can pass those tests even though they are in the earliest stages of dementia. Early on my husband definitely had good days/bad days…good stretches/bad stretches. Maybe if he had taken the test on a good day during a good stretch he would have passed. Who knows? I am glad the tests did provide his MCI diagnosis, because it was frustrating and frightening for our family, since he had no recognitionn of his own impairments (anosognosia). It reassured us that none of us was crazy and this was real, as the report stated “there is clear evidence of organic cognitive dysfunction.”
However, we still do not know whether his is early Alzheimer’s disease because my husband does not want to know and refuses the Amyvid Pet scan. So we know he has MCI but we don’t know what the future holds.
I would say you are very close to the same position, you may not carry the MCI label anymore, but you do have cognitive impairments and you don’t know what the future holds.
So I guess we are all left with the apt cliché, “Live for today.”
FYI, prolonged use of anti-depressants can cause cognitive impairments - a study of elderly women showed 70% increase in the risk of mild cognitive impairment and an increase in the risk of probable dementia: http://www.ncbi.nlm.nih.gov/pubmed/21226676
And in support of earlier posts here is another link to info on the dangers of statins, including cognitive impairments: http://www.westonaprice.org/cardiovascular-disease/dangers-of-statin-drugs
As far as I can tell from the abstract of the article, they are pointing to the SYMPTOMS of depression that are correlated with cognitive impairment and not the medications. I have checked in several places on the Internet and with my several neurologists and there is no evidence that the medications that I am taking for depression are linked to cognitive impairment. And I haven't had significant symptoms of depression for over 15 years.Delete
I'm sorry - I provided the wrong link - this is the one I meant to give: http://www.ncbi.nlm.nih.gov/pubmed/22301077ReplyDelete
But maybe your cnclusion will be the same...
Dear Dr Hilfker,ReplyDelete
I discovered your blog a few months ago and shared it with my bothers and sisters. Our mom has Alzheimers and so your blog has become very meaningful for us. I'm so sorry to hear about the inconclusive results. It would have been so much better to discover that you have a disease that medical science has a cure for. "Here; take this medicine. You'll be better in a week." It is so difficult to stand by and know that the lights are dimmer while all of those wonderful tests do not detect the change.
Thank you so much for letting us share your journey. Your blog helps me to travel my own personal journeys with greater understanding and with a greater sense of traveling through life as part of a larger community. Thanks for letting us travel with you.
I am quite grateful to all of you who share this journey with me.Delete
Have you considered the possibility that your initial memory issues were caused by something transient which was misdiagnosed as Alzheimer's, but then that the psychological implications of the diagnosis itself caused you to develop other impairments which seemed real to you and indistinguishable from "real" Alzheimer's to other people?ReplyDelete
I certainly have thought about it a lot. It's one of those unknowables. Now that I know the results of the objective tests, I may interpret my symptoms somewhat differently. This would be perhaps the best news of all. Our mind does strange things with us.Delete
How is Marja dealing with this? And have you been tested for celiac? There's a "brain fog" that goes along with that.ReplyDelete
Marja has always dealt with uncertainty much better than I. I'll see if I can get her to write something.Delete
I have read all of your posts with interest since I discovered it a few months ago and what really amazed me was your acceptance of changes within yourself. And also a positive slant....like the blog where you welcomed having the space to read novels instead of being frustrated that you could no longer concentrate on heavier academic tomes. Nobody close to me has had Alzheimers but my daughter has had Chronic Fatigue Syndrome/ME since she was a teenager (7 years now) and your views and thoughts certainly helped me be a more caring parent in the situation ( I think and hope). And I can certainly empathise with the uncertainty and lack of definite diagnosis.
david, i think life long depression and antidepressants usage effects us in old age...i have been depressed from 16 to now (70) with brief periods of happiness, life long meds, steller nursing career, intense fear at not being able to practice nursing and then a new antidepressent or dosage increase and i get better...does this happen to you?ReplyDelete
I have had life-long depression and anti-depressant medication now for almost twenty years. the difference between us may be that the medications have been very effective with me, and I don't think I experience it anymore than anyone. The medications I'm taking do not list delirium or dementia as side-effects (although certainly anything is possible). Given the very small chance that the medications are part of my impairment, I've not been willing to risks the months of darkness that would most surely come if I stopped the medication.Delete
Hello, I also was given the same diagnosis after extensive testing, mild cognitive impairment/ probable Alzheimers. Your symptoms, sound like a mirror image of my own.Four of my Dad's syblings had the disease. I am getting better although I still have problems with word finding and executive function. I have needed to cut back my work schedule, refuse to go on disability, but instead choose to believe that God did not give this to me, doesn't want me to have it, and wants me better. I had allowed myself to carry too much stress for too long. I thought I could not make some necessary changes to allieviate the stress so I postponed making them and I believe this is the result. I have HAD to make changes, my life now is much more manageable, I know what you stated in aanother post about being happier, My husband and I own a business & it was killing us both. I feel like I now have a life again. I am not the person I used to be, I cannot manage what I used to manage, and it took this crisis to turn me around. I know hat you also mean about the lights going out it was a dark scary place that I never want to go back to. I also have discovered who my real friends are and who genuinely loves me. It has helped sort out surface relationships and helped me to re-focus on a real relationship with Jesus Christ.ReplyDelete
As difficult and terrible as this disease is, it can teach us some very important things about ourselves that actually make us happier. And coming to terms with the fact that there are just some things that you CANNOT do is important for the acceptance that can bring a measure of peace.Delete
I understood Alzheimers disease could be diagnosed only at autopsy.ReplyDelete
I also understood if you have Alzheimers, you would have no knowledge of it.
Hold on to mild dementia diagnosis, as your body and mind age naturally.
Celebrate what you have. Accentuate the positives. Let the negatives slide. Lean on your loved ones. You dont have to be the leader. Gather them around you and let them know all at the same time. Write notes and consult with your wife before the gathering.
You're correct that Alzheimer's can only be definitively diagnosed upon autopsy. when you can actually see the amyloid plaque that gums up the nerve synapses or the "neurofibrillary tangles" that damage the interior of the brain cells. For clinical purposes (ie what the doctor tells you), a diagnosis of Alzheimer's is made when a) the cognitive impairment reaches the level of dementia, b) other forms of cognitive impairment have been rules out, c) the impairment comprises an impairment of memory and one other kind of cognitive impairment and d) the disease is progress, ie it keeps getting worse. Obviously, that doesn't work all the time, and it's especially difficult to use early in the course of disease.ReplyDelete
There is, however, a new set of brain scans being developed that will actually allow you to see the amyloid and perhaps have evidence of the neurofibrillary tangles. These are new and they're still working to refine them so that they're good enough to use regularly. If these tests turn out to work as well as they think, then the definition of Alzehimer's will change and, since the amyloid begins getting deposited long before symptoms develop, it will be possible to make a diagnosis early.
There are some people who just don't recognize that they don't have dementia symptoms. it's a condition called anosognosia (which I wrote about in a post called "It's not denial" on Aug 21). For those people, the brain has been affected so that they literally cannot recognize their deficit. I don't know exactly how common that is, but it's nowhere near 50%. There are other people who are in psychological denial because of the emotional impact of facing the diagnosis. But most of us are quite aware of our symptoms.
And I agree whole-heartedly with your last paragraph. Thanks for writing.
My father has been diagnosed with MCI and Lewy Body Dementia is suspected, but like alzheimers unconformable without autopsy. He is still functional enough to see his own decline though unable to continue his therapy practice and is struggling with the loneliness of it in a way we cannot seem to help him with. His multiple previous diagnosis (manic. psychosis, etc) combine with his history advocating for clients have fed a serious mistrust of most medical practitioners. It seems most support groups are for care givers but would love to find a way for him to connect to others on this confusing and terrifying journey as we love him through it. Thank you for this space.ReplyDelete
Yes, most groups are for caregivers, but there are now more and more groups for affected people, too. The Alzheimer's Association www.alz.org has lists of such group sorted geographically. If there isn't any in your area, they might be willing to help you begin one yourself.ReplyDelete
I've been to one such group, and it seemed very helpful, as you might guess.
Look into autoimmune encephalitis and Lyme. There is something called hashimotos encephalopathy. A blood test for tpo and tgab can be done to test for hashimotos. It typically attacks the thyroid gland, but it's also a marker for possible attack on the brain. A thyroid panel can be normal, so get the antibodies checked. The Lyme test should be via Igenex. Or go see a llmd.ReplyDelete