How A Mild Cognitive Impairment Consumed My World

Doctors are afraid to use the word dementia. They're afraid to use the word neurodegenerative disease. They're more comfortable saying mild cognitive impairment because mild cognitive impairment may get better. Dementia is dementia, and in most types of dementia, there is very little chance of improvement. There are ways to slow it down, and timelines may differ from what doctors tell people. The end result is that I'm living with dementia, and doctors are uncomfortable giving that diagnosis. But, like many, I was first diagnosed with Mild Cognitive Impairment. 

At the time, I was working on my Ph.D. in Clinical Psychology and failing exams. I could come up with advanced statistical solutions but couldn’t explain the basics of how I got there. The dean of my school suggested I see a psychotherapist, thinking it was just the typical stress of my first couple of years in the doctoral program. I knew something was wrong, but no one heard me when I said it. No one listened. 

Fortunately, I’m a veteran, and I had a psychiatric nurse that I saw, and I could tell him I was having concerns. That nurse did some in-house testing with me and found that I was dealing with adult deficit disorder, although I had no history of a deficit disorder (ADD, ADHD). So, he sent a referral to neuropsychiatry to have me further tested.

It's really funny because when they do the dementia testing, the long, sometimes four-hour long testing, they include several projects like drawing a clock and putting large pieces of puzzles together. And I mean, really large pieces of puzzle, five pieces to make up a puzzle. And supposedly, if you have dementia, you can't put it together. And yet, some people can draw a clock. There are people with dementia who can do puzzles. It doesn’t consider the strong development of skills for some and not for others. I could do both, but clearly, something was still wrong. My diagnosis: Mild Cognitive Impairment (MCI) with a language expressive receptive disorder. I was 46 years old.

But I was hopeful because my doctor was. He thought my cognitive changes were concussion-related from a fall that I had taken three months earlier. It was a pretty bad fall. I took the diagnosis to my doctoral program, and Dr. L, who teaches neuro-psych testing, cornered me in the hallway and told me that there was no such thing as an expressive receptive disorder and challenged my diagnosis. He didn’t think I had MCI at all. I remember him saying that no one with an IQ of under 110 could ever complete a doctorate program. I felt like a cornered animal – it was terrible.

If I took this diagnosis to my department, I thought they would provide accommodations. After all, I was in a clinical psychology program for health psychology—this is the field that I’m studying! And they did nothing. Professors questioned my work ethic. They thought I was lazy. The administrators were actually on my side—most professors called for my dismissal from the program.

Leaving the program was devastating, and the idea of not getting better was something I couldn’t conceive of.