Kansas writer

Debra Guiou Stufflebean

What is MCI?

No, I’m not talking about the airport in KC. I’m talking about a diagnosis I received earlier this year - Mild Cognitive Impairment. This is the new politically correct term for a person who may be in early stages of Alzheimer’s Disease. I’ve been very forthcoming with members of my family, my church, and my “peeps” (whom I love dearly) at Shepherd’s Center but now it is time to just lay myself bare to everybody. It takes way too much energy to pretend, according to who knows and who doesn’t. I am determined to hit this head-on and not hide behind the taboo people have of keeping a mental illness hidden. The mind is an organ like any other part of the body and we share about cancer and heart disease, so why not Alzheimer’s?
I had been wondering how to go about this, and then yesterday the answer came. The August 21, 2019 Alzheimer’s Prevention Bulletin arrived in my email inbox. The leading article was entitled, “More Studies seek People with Mild Cognitive Impairment.” Indeed, an Alzheimer’s clinical trial was behind early diagnosis. Two years ago researchers from the KU Med Center Alzheimer’s Research facility came from Kansas City to give a program at Shepherd’s Center. At the time I posted on facebook that I did the DNA swab to see if I was a gene match. After a year went by, I forgot all about it. Then in March, I received an email asking if I would like to know the results and be interested in being in a clinical trial. I wasn’t surprised to have the APOE4 gene given that my father had early onset Alzheimer’s. An MRI further confirmed significant spaces in the basal ganglia and brain atrophy, and a PET scan confirmed elevated Amyloid Plaque. After being bled dry from 24 vials of blood being taken, and three EKG’s, I was ready to now start the medication that they hoped would either slow or stabilize what was happening to my brain, (or worst case scenario, be a placebo). After the first week of taking my pill, nationally at Penn State the trial was cancelled. All we were told was that since the study had began a couple of years ago, too many participants had actually gotten worse. So, I was either rescued or screwed.
According to the bulletin, MCI is the period of time between normal memory and thinking, and dementia. It includes impairment in thinking skills that goes beyond normal age-related changes but does not meet the criteria for dementia. With age we expect to see some changes in learning, memory and speed of thinking. However, with MCI the changes are more pronounced. People with MCI can experience some changes in everyday life but MCI doesn’t interfere with their ability to complete daily tasks such as shopping, household chores and managing money.
MCI can be defined by different subtypes depending on how it impacts your thinking skills. A person can have symptoms in one or more areas of cognition. These include:
  • Memory – new learning, recall and retrieval of information
  • Attention – concentration and focus
  • Language – ability to come up with words, name items, understand others
  • Visuospatial function – understanding spatial relationships
  • Executive function – problem solving, reasoning, controlling behavior
People who have problems with memory have what is called amnestic MCI. Twice as many people have amnestic MCI versus non-amnestic MCI where memory is not impaired. Amnestic MCI is more often a precursor to Alzheimer’s disease. I feel that I am still high functioning in language, visuospatial and executive behavior, even though word choice is starting to be a factor. Over the past year I have struggled with retaining short-term memory, especially if I am interrupted. In doing my job, I prefer that people leave me voice messages or send me emails because I can go back and revisit them, whereas, if someone tells me something on the phone, it may be a few days later before I recall that someone talked to me . . . and dang, what was it they wanted! I’ve also noticed that focus is an issue. I can be reading something that will remind me of something else, and then I just space out for a while, off in my own little world.
My greatest fear is not being able to write. I think so long as I have Google and can type, I can weather what comes down the road; I understand that things could stay basically the same for months, even years. But I also understand that things could change very quickly. For that reason, I’ve decided to blog about this experience. Who knows, it may help someone. My doctor is starting me on Aricept, and I am enrolling in a different clinical trial -- no drugs -- just annual MRI and PET to see how the images change. In 2015 I had an MRI because an ambulance ride to the hospital had some convinced I was having a stroke. As it turned out the diagnosis was severe vertigo. That MRI will become my baseline. If you’ve read this far, I want to thank you. It helps knowing I have friends out there!

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