Category: HD

Apathy, Anxiety, Memory

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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

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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 🙂

2019 Letter To My Friends About HD

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HD is inherited. A faulty protein kills neurons, with symptoms similar to Parkinson’s, ALS, Alzheimer’s, and/or Tourette’s. It’s progressive; it won’t go away. It can develop earlier and faster in each generation.

It causes spontaneous muscle movements, contractions, and weakness. I stutter more and am slower to speak. It’s harder to swallow correctly, button, zip. My coordination and proprioception is impaired like a drunk’s.  It’s hard to tell where my body is in space.

You may not notice anything. Or you might.

I’m likely not drunk, bored, impatient, or needing to go to the bathroom (usually). My face may make expressions unrelated to what I’m feeling. And I’m capable of nuanced thought even when I’m not articulate.

I have good days/moments and more symptomatic ones.

I fall sometimes. I still exercise. I meditate. During both I have fewer symptoms. I don’t mind talking about it. I’m a realist, so this may sound a little dry, but it’s the facts, presented with love. ♥️

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

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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.

Melatonin/Sleep

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2019

Circadian Rhythm Disturbances in Huntington Disease

I stopped taking melatonin a few weeks ago. It wasn’t initially harder to sleep. In the last week or so, I’ve felt the cycle shift. I’m up about an hour later (both in the morning and at night) almost every day. A couple of weeks ago I was sleeping (and being sleepy) at 9pm, waking at 6am. Now I don’t sleep until 2am and can’t get up until at least 10am. I’ve also been napping mid-day, sometimes several times, so tired I couldn’t get up to work. I’ve gone through my usual attempts to have more energy. Resisting napping. Regular exercise. I take Zyrtec for asthma from seasonal allergies. It shows up it its most annoying form as fatigue. But that’s not it, this time. I’m still sleepy for hours after I wake up and immediately after naps. And I sleep 12-14 hours a day.

Melatonin in HD: lower levels and improper timingMelatonin is a hormone that helps the brain decide when to sleep and wake.

As a teenager I was a ‘night owl’ and required the usual extra sleep we now know they need. Later I had kids, was working and going to school, and was consistently sleep deprived. As an adult, I’d wake up after 7.5 hours, like clockwork – as long as those hours included the interval 4-6am. In the last decade with HD, it’s increased to 9-10 hours. It’s not just how long I’m in bed – it’s actually sleeping.

I bought a light box a few years ago and use it in the winter. I have great sleep playlists and use earbuds if necessary. I do all the usual recommended sleep hygiene including limiting screen time at night, not eating late, sleeping in the cool and dark.

Brain disorder-specific sleep issues

Hypersomnia, melatonin disturbances, and circadian rhythm disturbances can’t be fixed with normal sleep hygiene.

Neurological diseases cause sleep problems. So for the next part of the experiment, I’m resuming the melatonin and I’m going to try to reset the clock. If I can’t back it up, I’ll do a progressive advance. I’m shopping the melatonin TODAY. And I’m in a place with lovely amounts of sunshine, so the therapy starts in the morning.

2019 May 13: I’ll update over the next couple of weeks.

Update 1: that day, I took 4x 3mg melatonin at 8pm and, as a last resort, and advil and a quarter bar xanax. Woke up at 1am and took another advil. Was back to sleep in half an hour. Woke at 9am, napped at 10:30. Groggy all day, blamed the xanax.

Update 2: the next day, took 4x 3mg melatonin and an advil at 8pm. Slept 9pm – 9:30 am only waking once, briefly. Groggy all day, blamed the melatonin. Planning to half the dose tonight.

Update 3: It worked! The next few days I started with 5mg and increased to 9mg and sleep was increasingly regular. I moved the dose to 7pm, as it takes a couple of hours for me to get sleepy. I’ve now been sleeping about 9pm, waking to the alarm at 7. I don’t wake during the night unless there’s some other issue. And I don’t feel groggy all day. This is consistent over a couple of weeks.

Sensation

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How Huntington Disease Is Affecting Touch, Satiety, and GI Sensations

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I don’t hear much about loss of proprioception or sensation. And even less about how it affects GI issues with Huntington Disease. So here goes, though it may be TMI. You were warned.

Sensation: What I Feel (Or Don’t)

My hands and fingers will sense, when touching my leg or arm, that I’m touching someone else’s extremity. Once I see blood I know I’ve cut myself (again) trying a mani/pedi.  I have to floss in the mirror to be able to tell which teeth I’m between. 

I’ve lost sensation in all the nether parts, too. For the last decade or so it’s been hard to orgasm. I can’t tell if I’m peeing (and can’t feel wetness), which can lead to some really awkward situations. I poo perfectly normally except that there’s no advance warning – once I feel I have to go, I have minutes, at most. Worse yet, I can’t hold it. I’ve lost a lot of underwear to public bathroom wastebaskets.  

Satiety

Is my lack of satiety related to other sensory issues? I haven’t felt ‘full’ after eating in years. At least a decade. I can literally eat and drink until it’s hard to breathe or lie on my stomach. And still won’t feel full.

Hacking the Situation

Since I can’t trust my appetite, I rely on timing and visual cues for portioning. I kegel and qigong tap and do proprioceptive and balance exercises. Wait to leave the house until the morning poop. Keep wipes tucked in my bra, since a public stall is no place for my shit coordination to rifle through a bag. I postpone eating if I’m leaving the house for more than a couple of hours, eat out only if I can get home soon after, and fast all day for air travel.

I know this will get worse, it’s HD. But for now I’m mid stage and looking to function as close to normally as possible.

Photo by Hafidz Alifuddin on Pexels.com

About Me and HD

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Before Huntington’s Disease I played around with sports. I haven’t been able to run in almost a decade. As of 2019, I’m having trouble with escalators, eating, talking, thinking, and sometimes walking. I have some chorea.
When I found out I had HD, I really wanted a first-person account. I found stories on testing, family dynamics, and pre-symptomatic life. Most writing about symptomatic HD patients came from caregivers and family.
While I’m not a writer, I’m making a record of my HD progression, symptoms, experiments, and hacks.  I do this on the borrowed time when I’m coherent.  Dedicated to my family’s next generation, status unknown, with love.