What It’s Like In My Head in 2021

It’s been 3 years since the Huntington Disease diagnosis.

My drafts are composed by dictation. Sometimes I can’t open the app fast enough to remember what I’m going to write about. Today I finally remembered two things.

Memory is not intelligence.

Sure, they’re integrated. So much that you won’t notice until only one of them is affected.

There are thoughts you keep in your head for multitasking; subconscious, and never written. They’re the basis of the small day-to-day decisions about automated tasks. I’ll remember that I have decided to execute a habitual tasks in a certain way or in a certain sequence, but can’t remember the rationale.

Like brushing my teeth before putting on makeup so I don’t drool it off my chin.

Where do I sit in the room to meditate and why? There’s a particular chair that doesn’t sink as much as the couch. It’s in the sun in the morning. I do it without shoes because I don’t want to have them on the seat. If it gets worse I’ll workaround with a post-it in the chair: “Meditate Here.”

I record music and there’s a reason why I route my guitar a certain way through the DAW. I disconnect the power source to reduce hum. Do I remember that? Nope. Every time I plug it up I go through that same routine. Which I can do, once I am in situ.

That kind of knowledge is stored differently than the memory of going someplace yesterday, news heard last night, or things learned about mRNA vaccines. Those are intact for me, for now. It’s the automated memories that don’t seem to be there.

The ability to produce coherent thought is not the same thing as having coherent thought.

Sometimes I can’t find a word, but the concept is there, intact, in my head. Sometimes I’m slower to speak, slur, or stutter. I haven’t lost the subtleties of thinking. I’ve lost the subtleties of fluid speech. We’re (ok, I am) used to using speech to estimate intelligence. It’s a misconception. See Parkinson’s research.

As an HD patient, what do I need from friends and family and caregivers?

Don’t treat me like I can’t make decisions for myself. If I can’t find a word, it doesn’t mean I can’t reason. Don’t assume. Ask. And give me space and time to answer.

So far I’ve had great support from friends and family, but I’ve seen others who haven’t been so lucky.