Washington DC
As I wrote in my last
post, the background summary to my neuropsychological test results reported
that my “recent brain MRI was read as showing generalized cerebral volume loss
and small vessel occlusive disease.”
These findings are most consistent with vascular impairment. Since I had been under the assumption that my
previous MRIs were normal, this is a powerful indicator that my cognitive
decline is due to vascular disease, which had previously been ruled out. (I’ll be checking my conclusions with my
neurologist in a few weeks, but I think my conclusions are correct.)
As I wrote in my post of Oct 30, “Letting
Go of Alzheimer’s,” the false negative rate (the percentage of tests incorrectly
indicating Alzheimer’s) for the PET brain scan I had is very low; I’ve since
found out that it is under 3%. Since
I’ve had two of these scans, we can say with some confidence that the Alzheimer’s
diagnosis I’ve been living with for the past sixteen months is almost certainly
incorrect. I do not have
Alzheimer’s. That has left me quite
confused. As I explained in my post of
November 28, “The
Elevator Version,” in brief conversations with others where I’ve had no opportunity
to explain the ambiguity of the test results, I have continued to say that I
probably had Alzheimer’s. I can no
longer say that.
What is vascular cognitive impairment? It can most easily be described as many
mini-strokes affecting tiny areas of the brain that cumulatively lead to a
decline in mental function. These
strokes occur because tiny blood clots block (“occlude”) very small blood
vessels (thus, the name “vascular”) sometimes without leaving a trace on MRI scans. The occlusions then impair or kill multiple
small areas of the brain. Exactly what
is impaired depends on where the mini-strokes are. How great the impairment is depends on the
number and size of the affected areas.
Symptoms early in the disease are sometimes indistinguishable from
Alzheimer’s, which is why my neurologist said at my first visit
that there was a small chance I did not have Alzheimer’s.
The eventual course of vascular impairment, however,
is ultimately different. Typical
Alzheimer’s follows a continuous downward curve. Although the steepness of the curve can vary,
the gradual worsening is always the same: declining mental function, dementia,
and death.
The downward course of vascular cognitive impairment,
however, is not usually continuous.
Although not invariable, symptoms usually worsen in a step-wise
function, that is, there is a period of stable plateau without new or worsening
symptoms followed by a sudden decline of mental function (caused by a new
shower of clots and occlusions) followed by another plateau. This could explain why my symptoms have not
changed much in the past ten months: I’ve been in a plateau period.
In vascular impairment, the frequency and seriousness
of the sharp declines can vary enormously.
Sometimes small occlusions happen continuously, causing a steady
downward course very similar to Alzheimer’s.
Other times the clots can be bigger or hit more important brain
structures, leading to sudden major changes in cognition, the usual stroke
symptoms or death. And still other times
the declines can be small and very far apart (or never happen). You just don’t know. I could remain this same way for a long time
… or not.
The huge difference is that I can do something that might
prevent further decline. There is not
treatment for Alzheimer’s, but vascular disease is the same process that causes
heart attacks and strokes. So the same
preventative measures apply: reduce my blood pressure by a diet low in salt and
reduce my bad cholesterol levels with aerobic exercise and a cholesterol-lowering
diet, or, if necessary, medications to reduce both blood pressure and
cholesterol. I already exercise
regularly and have normal blood pressure and cholesterol, but for both blood
pressure and cholesterol, the lower the better.
So a low-salt, cholesterol-lowering diet may be helpful.
This is very good news. I may be cognitively impaired, but the future is not predetermined. As you might guess, this is causing a rather marked shift in my thinking, planning, and emotional state. I’ll explore those changes here as I can better understand and name them.
This is very good news. I may be cognitively impaired, but the future is not predetermined. As you might guess, this is causing a rather marked shift in my thinking, planning, and emotional state. I’ll explore those changes here as I can better understand and name them.
Good news indeed!
ReplyDeleteAs I've said before my mother-in-law had Alzheimer's. I have not said my father-in-law had vascular blockages. So I'm interested in seeing what you experience and what you choose to do about it whatever your diagnosis. It is nice to feel you have options now, though.
ReplyDeleteI've been following your excellent blog for awhile now, and I thank you for the many thought-provoking posts. We oldsters (I'm 66) are always vigilant about The Big A, I think, so your conclusion that your disease may be vascular rather than AD is good news indeed. My initial thought, though, about treatment, is that I wonder whether a blood thinner might be appropriate, if tiny blood clots are causing the problem. Just a thought. Keep up the good work!
ReplyDeleteIt may be. I've been out of medicine so long, I'll wait until I get some advice from my neurologist.
DeleteA lot of vascular problems are caused by clots, also by small brain bleeds. So blood thinners may work in some cases, and in others, may make it worse. This is good news! I have seen many neurological workups on patients, and most of them say, "normal brain shrinkage, due to age." I guess that is what causes us to forget the name of a street for a few minutes.
DeleteAll the more reason to get out there and dance, sing, and make merry.
Some of us "dance, sing, and make merry" better than others. Cognitive impairment seems to make it easier, but it's never been a strong suit of mine.
DeleteI am a 64 year old retired physician. your comments are thoughtful and very helpful. keep up the good work and I want to keep hearing about you!
ReplyDeleteThank you for continuing to share your journey. I'm praying for you and your family from afar.
ReplyDeleteYour diagnosis revelation reminds me of one of the wives in my Alzheimer's support group. Her husband was diagnosed with Alzheimer's and was given the typical medications. However, his symptoms and continued abilities throughout his illness for many years made her doubt that the diagnosis was correct. Still, even after additional testing, the doctors hung on to the same diagnosis of Alzheimer's. It was not until after he passed and she received the results of the tests on his brain that the truth was available. Her husband did not have Alzheimer's, but some other disease (which I can't remember). She said it was a relief to know the truth and encouraged all of us to sign up for the post death brain research so that science can find a cure. Thank you so much for sharing your journey with us. I look forward to your posts.
ReplyDeleteI suspect that things will change rather dramatically in the next several years as the new PET scans come into widespread use. Currently the scans have a fairly high false positive rate (probably due to the fact that the amyloid protein that apparently causes Alzheimer's can be present years before any symptoms). The false negative rate, however, is very low, meaning that the person who has a normal PET scan is very unlikely to have Alzheimer's.
DeleteThank you for your blog. As I read about the "small clots", I thought of baby aspirin that people use to prevent clots in the coronary arteries. I don't think it's been shown to cause excessive bleeding. Is there any neurological study that has looked at baby aspirin for stemming the progression of vascular cognitive impairment?
ReplyDeleteI suppose as a doctor I'm especially cautious. I will wait until I see my neurologist to ask whether the aspirin will interact negatively with the other medications I'm taking
DeleteDavid, I am so happy to see this news -- well, in a relative way, I hope you know what I mean. As I've written to you in a previous post, my father was a victim of alzheimers, and I do sincerely believe that the diagnosis that you do NOT have that is good news, even weighed against the new challenges you now face. Best of luck!
ReplyDeleteI just want to thank you for this blog. It is interesting to see how your diagnosis has changed. I hope that, even though you apparently don't have Alzheimer's after all, that you will continue to share your experiences. My husband was diagnosed with mild cognitive impairment a few years ago, and I find your blog to be a kind of window into what might be going on in his mind. And your recent experiences demonstrate the need to question and keep on top of developments in the medical field. Thank you so much!
ReplyDeleteThank you so much for this blog, which I just discovered. My father, 92, also has vascular cognitive impairment, and also had a high starting cognitive level, so that he noticed decline long before it was medically confirmed. He gets confused sometimes, and no longer lives on his own, but we just had a great conversation about your account of your experiences. I am hoping he will remember your statement, "We tend to be scared of Alzheimer's or embarrassed by it. We see it as the end of life rather than a phase of life with all its attendant opportunities for growth, learning, and relationships. We see only the suffering and miss the joy. We experience only the disappearing cognitive abilities and ignore the beautiful things that can appear." -- I will keep reading it to him, and to myself, as we walk together through uncharted territory, through light and dark.
ReplyDeleteDavid, That is great news! Well, I guess everything is relative! But there is a sense of re-gained control in your blog. Now that you have a plausible diagnosis, you can put your investigative and medical skills to work battling it.
ReplyDeleteBy the way, my mom has Alzheimer's and my maternal grandmother had vascular cognitive impairment. So my family and I are following your blog with tremendous interest. Thanks so much for allowing us to accompany you on your journey. We wish you and your family well!
I would have said you don't have alzheimer's just based on the lack of spelling errors and vocabulary used in your blog, but I'm a mere layman and not a medical person. I have always wondered if it would be possible to clear out blockages in the veins and arteries using some chemical agent or tiny machine. With all the technology we have these days there must be something that can help.
ReplyDeleteEarly in Alzheimer's, a person can be impaired on one area and not in another. I don't have Alzheimer's but I do have a cognitive impairment. But I've been a writer most of my adult life, so the mechanics of writing are still with me.
DeleteMedicine is always looking for ways to get rid of the blockages, and is, indeed, well on its way. If stroke or heart attacks are discovered within a few hours it is often possible to administer new medication that will resolve the blockages. The problem is that within a short time the brain tissue or heart tissue beyond the blockage dies and that is not, at this point, reversible.
If you think your cognitive decline is due to vaso-occlusive disease, your diet should include all those foods contraindicated for patients taking anticoagulants. In your case, the anticoagulant effect would be desirable.
ReplyDeleteThanks for helping me better understand this disease. I think this disease affects more Americans than I realized. I think giving good senior care to these people is the most important thing we can do for them.
ReplyDelete