Tag: Cognition

Apathy, Anxiety, Memory

Mastering The DeclineLeave a comment

In trying to master the decline, I’m also documenting it. These are the more difficult entries, both to write and to post.

You’d think apathy and anxiety would cancel each other out. But, no.

I’m traveling again. And I don’t know how long I’ll be able to do it. The planning is harder, the sleep disruptions are more disturbing. I still love it, even if I can’t fully feel all the feels.

In the last 24 months, there is a noticeable shift in my perceptions.

Apathy

I can’t get excited about things the way I used to. But I haven’t felt the usual rush being someplace different. And it is very different. Even 2 years ago I would’ve been preoccupied with all the little things, figuring out the new systems. People watching, museum-going, taking photos of buildings and plants.

I still do those things. I can’t put my finger on why I still do it, if it feels so… artificial.

I’m flat. Flat + anxious, honestly.

Anxiety

I had anxiety before the flight, before taking the bus for the first time, and going to a restaurant for the first time. Part of the pre-travel anxiety was doom-related. Not a voice in my head asking if this is the last time I’ll travel or what happens if the plane goes down. Instead, a fog. A grey mood around something unseen, blurry, in the peripheral vision in my head.

I used to have the kind of anxiety that manifests as depression. That’s what I thought it was. In the freeze reaction I used to have about imposter syndrome on the job. Terror at being found out (even though I was good at my job) turned into the inability to get out of bed in the morning, leading to bad job performance. That’s hard to admit. It got worse closer to the HD diagnosis in 2017. I even quit working in 2018.

Memory

A bigger part of pre-travel anxiety came from a vague sensation of forgetting something. Again, no voices in my head asking about passports or phone chargers. Just that sense that plans could be incomplete in some way that I don’t know that I don’t know about.

Someone shared childhood memories that 10 years ago we had. Today I don’t. Absolutely no memory of it. It doesn’t disturb me in the way you might think.

Part of the reason traveling works for me is that it avoids the groundhog day effect. When every day feels repeated, time passes so fast that I feel like I’m running out of life. This runs counter to the advice: give people with memory problems a very consistent routine. Maybe it works with Alzheimer’s and dementia, but for me the quality of the memory loss is distinctly different, needing a different solution.

I’m apathetic about my memory loss, but it still makes me anxious. What?

Conclusion

There’s an interaction between memory and anxiety that I haven’t read about in the HD literature. Anxiety that isn’t nervousness or specific voices. Just a vague sense of forgetting something important: an appointment, the keys just before you shut the locked door, or food on the stove. All of which I do more of, so is it another case of “just because you’re paranoid…”? I think it’s a legitimate reason for distress.

At the same time, the interaction between apathy and anxiety means that I’m happy enough, I guess, most of the time. I’m not particularly *bothered* by my anxiety. Also something I don’t read about in literature about either HD or anxiety.

I’ll just keep reading what I can find. And writing about things I don’t.

Apathy And A Little Brainwashing

Mastering The DeclineLeave a comment

Huntington Disease causes apathy, but apathy is more than one thing, it lives in three domains. In some people with Parkinson Disease, emotional apathy remains, even when behavioral and social apathy is absent.

Effort for reward (motivation) is the behavioral domain. For me, this is pretty much wiped out.

Effort for other people is the social domain. Pretty much intact for me: I’m willing to do things for other people and groups.

Emotional responses and sensitivity is the third. My emotional responses feel somewhat blunted, but I am sensitive to others’ feelings. (With a caveat: I’ll need to accurately read their faces and body language and voices.) I’ve lost memory around what something felt like, emotionally. So I can remember an event, but not, sometimes, what I felt about it.

In the Parkinsons study, there was a correlation between having behavioral and social apathy and having anhedonia, the inability to enjoy doing pleasurable activities.

I don’t exactly have anhedonia. I’ve lost the memory of how enjoyable an activity is. So I won’t start. But once I start, I enjoy it.

So… I have a really hard time getting things done. Even things that, in theory, I like to do.

I’m trying to do a little brainwashing on myself, and ran into this video from Chase Hughes. It’s been super helpful 🙂

Where Is My Mind?

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OK, things are getting worse. Yesterday my therapist asked for the usual credentials at the beginning of a session: name, DOB, address. I gave name and address and hesitated. Took me a minute to remember what else she’d asked for. We have done this weekly for over a month, and still I couldn’t remember.

Later the same day, I host a zoom meeting. It’s protocol to thank each person who makes a comment in their allotted time. On the very first one, I forgot. The procedurals that are automated are going downhill.

I’ve had bad days, but this was a new low. With a degenerative disorder, new lows are the new normal.

This isn’t bad or good, it’s just what is. I don’t want to post this. But the purpose of this blog is to document the decline in detail. In realtime. And I don’t feel terrible. Just a sense of urgency to get done the things I won’t be able to do.

I play musical instruments, mostly guitar and piano. And I have a back catalog of about 300 songs. I’ve recorded a couple dozen. The others are mostly lost to weird made-up notation (not tab or sheet music) and lyric fragments. Some jpegs of literal fragments of paper. I’m not sure what’s worth saving. And it’s daunting to look at it and try to sort it. Much less re-learn and re-record it.

I’ll get done what I get done. Or as my mom and her father used to answer, to lots of things: “either it will or it won’t.” And I can choose to be ok with that, too. 🙂

Memory, Intelligence, Coherence

Mastering The Decline1 Comment

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.