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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Tuesday, January 21, 2014

Vascular Cognitive Decline

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.

19 comments:

  1. Good news indeed!

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  2. As 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.

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  3. I'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!

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    1. It may be. I've been out of medicine so long, I'll wait until I get some advice from my neurologist.

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    2. A 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.

      All the more reason to get out there and dance, sing, and make merry.

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    3. 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.

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  4. I 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!

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  5. Thank you for continuing to share your journey. I'm praying for you and your family from afar.

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  6. Your 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.

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    1. I 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.

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  7. Thank 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?

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    1. I 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

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  8. David, 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!

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  9. Anonymous1/23/2014

    I 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!

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  10. Anonymous1/23/2014

    Thank 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.

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  11. David, 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.

    By 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!

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  12. 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.

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    1. Early 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.
      Medicine 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.

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  13. Anonymous1/27/2014

    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.

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