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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, February 18, 2014

What Happens After Mild Cognitive Impairment?

Washington DC

Since I was originally diagnosed with Mild Cognitive Impairment (MCI) almost a year-and-a-half ago, I’ve read that some people with MCI get better, others stay about the same, and the rest go on to develop dementia, but I’ve never read any definitive statistics.  The Mayo Clinic, however, just released a large study of people with MCI.  There were two findings that were significant for me.
  • When the people with MCI returned for their follow-up visit, over a third (38%) of them who had been cognitively impaired were now not impaired.  Their tests were normal.
  • However, the study continued to follow up on that subgroup of now-cognitively-normal people for about five years.  During that time, almost two-thirds (65%) of them had became impaired again, either to MCI or to dementia.

Simply stated, it’s not unusual for cognitively impaired people to become normal again.  Wait a while, however, and the majority of those people will eventually become impaired once more, with either MCI or dementia.

My own situation is not completely comparable to the study subjects. 
  • First, unlike the study subjects who initially reverted to normal, my impairment has not reverted completely since my diagnosis in the fall of 2012; I do, however, feel somewhat less confused. 
  • Second, my normal PET scans demonstrate pretty conclusively that I don’t have Alzheimer’s.  Does that change the odds of my getting worse again?

The research also raises some questions that need to be studied, for instance: 

  • What happens if you follow people for more than five years?  Presumably more will become impaired, but we don’t know.
  • There are many causes of cognitive impairment.  Are there some in which MCI doesn’t revert to normal … or revert back?

So this Mayo Clinic report doesn’t resolve any of the uncertainty about my future.  The chances are good, says the study, that I’ll get worse, but there’s also a chance I won’t.  The reality is that, like anyone else, I don’t know my future. 

The most important thing for me, however, is not to allow my emotional or spiritual balance to yo-yo up and down with each new research fact that bears upon my future.  I certainly am not going to ignore studies like this; I want to be  more informed, and I’m convinced that knowledge is almost always better than ignorance.  In fact, the study helps me a great deal: I know I’m not alone in feeling confused about what’s happening to me. 

Statistics are only one kind of information: they only tell you what the odds are that something will or won’t happen, not what the future holds.  So I’m doing my best to put the statistics in their proper place: helpful but relatively unimportant in how I choose to live.  I won’t ignore facts that concern my future, but I won’t be dominated by them.  Life goes on!

4 comments:

  1. I suspect the following factors can help prevent progression of MCI: regular exercise, good social connections, a sense of purpose in life, a Mediterranean-style diet including cold-water fatty fish twice weekly, ongoing mental challenges and stimulation, and adequate sleep.

    But it's hard to prove.

    -Steve

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  2. I echo Dr. Parker's suggestions for brain health. For those with MCI and early stage Alzheimer's, how you "choose to live" is critical. When I was diagnosed six years ago with early stage AD, I rejected living the rest of my life in fear; I chose instead living with intention, connection, and joy within the limits of my cognitive challenges. The clarity of what was important in my life was the precious gift of my diagnosis. When I was reclassified as "normal" after exhaustive neuropsychological testing six months ago, I had the opportunity to change my lifestyle again. I chose again to live with intention, connection, and joy. I follow all of Dr. Parker's suggestions and am enjoying doing things I thought were lost to me, e.g. studying Italian. The future is a mystery; I can live with that.

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    1. Thank you Phyllis. When I worked with men dying of AIDS at the hospice we founded in 1990, it was pretty clear that attitude and convictions played an important part in the course of the disease. The intention to live made a difference as to how long you lived. This was especially noticeable around holidays, especially if there were important visits (from family or close friends) during those holidays. With what was then a death sentence, people kept themselves alive on their will until the holidays had passed. Without obvious medical explanation, it was clear that their conviction and desire to live more fully was crucial. Even many doctors are coming to recognize this now.
      As a person who has watched your journey from a diagnosis of AD to a complete bill of health, I can say that your will to live with intention, connection and joy have given me much inspiration.

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  3. Dr. Hilfiker,
    I am very happy to hear of your new diagnosis and wish you well, though Alzheimer is a very devastating disease I am sadden to know about the toll that it creates on the human mind. I had a grand father that had AD. The human brain has always amazed me from when I took my first AP class and as I get older I look to the science and medical field for the newest information on the human brain, to basically keep myself from suffering from those same aliments of aging. I eat the right foods, exercise both body and mind. I also try to keep my stress levels at a low minimum and try to live my life to the fullest, because in my past career life I have seen how short life really is. So, just enjoy!

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