Author: Mastering The Decline

Just figuring out the slippery slope ;-) I have Huntington's Disease. That's one aspect of me.

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.

I Don’t Get Post-Workout Muscle Soreness

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Here’s my protein ‘recipe’ for a less painful workout and overall strength:

During the day, 1g protein/ lb bodyweight.

3-5g creatine 30 minutes before working out.

1/2 to 1 ‘serving’ of a BCAA supplement (leucine, isoleucine, and valine) up to 30 after working out.
Other amino acids can actually interfere w/ BCAA effectiveness, so I avoid the ‘extra mega everything’ kinds of supplements.

At bedtime, 1 serving of a casein protein shake. Adding it can improve muscle building, and casein is slow-digesting so in theory better for overnight recovery than a faster digesting one.

Oh, and I’ve gained about 2kg while wearing looser clothing. I have measurable strength gains in the last couple of months.

Movement Culture, GMB, Animal Flow

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I had this great physical therapist this year. She worked with me to run again and set my own movement goals. I started checking out other online options for improvement and maintenance, being gym-less now in the end times 😉

I decided not to buy anything from any of these guys in the headline. The big turnoff? Macho, bootstrappy bios with no acknowledging of history, influences, or context.

I found a ‘history’ of physical fitness that never mentions women or anything non-European* and even it talks about the gymnasiums of the 19th century, and that as humans we were used to “running, balancing, jumping, crawling, climbing” in the distant past. ‘Crawling’ being that thing that the movement cultures adopt, slightly vary, re-name, and appropriate 😉

Imitation of animals is straight out of of ancient dances, sport, and rituals. Capoeira has a long-referenced history to African dance like Mohobelo, the “striding dance” of the Sotho with “leaping, kicking, sliding, and sinuous movements close to the ground.”

Capoeira is a geneological ancestor, according the dance community, including the b-boys that GMB and others will acknowledge. The backbend/wheel is 19th century yoga asana, that even then didn’t appear out of thin air.

Similarly this Tree of Dance – ahem – this Euro-American tree of dance (with its nod to capoeira) ignores Asia, Australia, Polynesia (the cultural appropriation of ‘hula’ and ‘belly dance’, pls?) and other combat arts everywhere.

My favorite beachbody guy didn’t claim to invent the abs exercises he put together in a sequence. I bought it anyway. The point wasn’t that he’d reinvented the wheel (ouch). Ido referenced capoeira in the past, but is now distancing himself, Mike F just avoids the question, and the GMB guys say they’ve never done it.

GMB posts videos of elderly martial arts gurus who they claim to respect. Gurus who likely teach their students the history and context of their art. They also have a ‘discussion’ page that is comment-free and focused on the argument that movements do not ‘belong’ to gymnastics, capoeira, or yoga.

True, but if you’re doing a downward dog, bro, just say it. There’s also a signature move, the downward dog of capoeira (not ginga) that Ido, GMB, and Animal Flow do, unmodified.
What else do these novo gurus have in common? Omitting history and influence, saying things like they’ve been ‘doing these movements for 30 years.’ Thinking they invented the alphabet after just writing a good essay.

So… I’ll take what I like and leave the rest. With a little help from my therapist 🙂

Yes, the article was written for a site called “the art of manliness” – but the article isn’t titled “the history of physical fitness in men in europe,” – it’s “The History of Physical Fitness.”

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. ♥️

15 Minute Movement (2021, WIP)

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This is what I try to do every day, more or less, in about 15 minutes. (Before I do physiotherapy.) The stick figures are more visual cues than explicit instructions.

(Optional: The first 5 can be done on a vibrating platform: precede it with qigong tapping and do a one minute plank after #5.)

1. Vertigo / Balance Exercises

Head turns in 3 planes: up/down, side to side (ear to shoulder), and facing L/R.
Slow head rolls in both directions.

2. Shoulder ROM

Small arm circles front, side, overhead.
Single arm circles, front to back, large.
(Optional: add hand weights)

3. Core ROM 1

Reach overhead L+R.
Lean L+R w/o moving hips, then moving hips.
Stand in place, twist to face the back.
(Optional: add hand weights)

4. Shoulder ROM 1

Air traffic controller arms (elbows out to the side, 90deg to wrists that move fwd/up.
Arms straight out to sides, fists with thumbs rotating up/down.
Cactus arms, bring elbows in/out.
(Optional: add hand weights)

5. Core ROM 2

Hip circles.
Torso circles (head down).
‘Marilyn Monroe’ hip hikes. Says my PT 🙂

6. Shoulder ROM 2

Isometric scapula squeeze.
Doorway pec stretch.

7. Hamstring & Quad ROM

Standing, v legs, lean fwd, L, R.
Squat lunges L and R.

8. Yoga ROM 1

Down dog, up dog.
Yoga bow (not shown).

9. Yoga ROM 2

Each side:
In d-dog, circle each leg with max ROM.
Warrior 1
Warrior 3 (lean back)
Triangle pose
Right angle pose
Crescent, then stretch hamstring
Reverse right angle pose
Something I do that’s not yoga
Pigeon

10. Lower Body Stretches

Figure 4 stretches
Butterfly
Twists
Sitting V stretch
Pike (L/R/both)

11. Low Squat

12. Pelvis + Spine

Yoga plow.
Bridges with ball.
Foot to knee pelvic rotation correction.

13. Swallowing: PT For Dysphagia

Head raises (prone).
Chin tucks at multiple angles.

14. Balance

Left and right:
Balance on one foot: leg straight and forward, rotate wrists and ankles.
Knee to shoulder, ankle and quad stretches.
Yoga dancer pose.
Yoga one-leg poses: straight to front, side, then one-leg chair.
(Optional: add handweights, do these balancing on a half-ball platform.)
Yoga tree pose L + R.

Covid-19 Vaccine (Moderna)

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My day after the first dose experience was a compression of my months of covid. I had fever and body aches that woke me up at 5am. By 11 I had severe nausea and a headache to go along with it. At 5pm I got out of bed and stayed awake for more than an hour. And by 7pm ate dinner, went back to bed, slept 11 hours, and it was done.

Coincidentally, my covid symptoms started exactly one year ago… and I didn’t get out of bed much until May.

I’ll update after the next dose 🙂

Dose 2: NBD.

I had symptoms of about half the intensity and duration.

Exercise (2021)

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I traveled for a lot of 2019 and 2020. I didn’t get much proper exercise, though I kept up with a version of the 2019 routine enough to maintain the ability to do each movement. It’s gotten a little longer and I’ve split it into alternating day routines that, given enough energy, I could complete in about 45 minutes. I’ve rarely been able to make it through without being exhausted. Some days I finish late, doing parts throughout the day. Other days I just get done what I can. Sometimes I spend the entire day trying to get the energy to exercise.

About 7 weeks ago, I started strength training again. An old-lady zoom program I get free with Medicare. I could hardly keep up with my mom. She takes it at her pace, but moves constantly for the entire 45 minute class and then often goes to another one.

WeekConditioning
Circuit		Cardio
Dance		HIIT*MeloxicamDiet*Notes
12x2x2x
22x2x2x
33x2x2x
44x2x2x
54x2x2x15mg/day
64x2x2x15mg/dayDuring the conditioning, I have started to double the bands.
75x2x3+x15mg/dayX2 weeks in, the Meloxicam seems to be working
8 (planned)5+2x3x15mg/dayX

*HIIT: During the cardio part of the circuit classes, I do 50 jumping jacks as fast and hard as I can. It’s about 30 seconds each of high intensity per set. The goal is 4 sets, plus an extra set of jumping rope.

*Diet: Creatine pre workout, BCAA post, high protein (1g/lb) diet, adding casein just before bed.

The schedule has organically increased in frequency. It wasn’t planned. I just got strong enough to do more. And mom is pretty insistent. Or regimented. Or something. I asked why and she had a one-word answer: ‘fear.’ Of? Being bedridden. Not able to move herself. Being in pain.

I’m not sure what I’m afraid of. But I hope I can run again. Even for just a few minutes a day. 🙂

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. 🙂

Diet (2021)

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It’s time for a diet upgrade. I’m not traveling (thanks, covid), I have access to more fresh food. I’m ready to up my exercise game, since I’m experimenting with Meloxicam to see if I can build strength without injury to the entheses. And I’m watching a course on changing body composition.

Here’s the plan:

Vegan when I can (price and environmental impact), some chicken and fish, maybe some egg whites. High protein: 75g+ per day. Low cost (duh). I’m going to supplement pre- and post- exercise with creatine and BCAAs. I’ll be adding a protein shake for an additional 15g protein and 75 kc just before bed.

Here’s an example. It’s NOT vegan, gluten free, high protein, high omega 3 (with fish oil supplements), 6-meal timing optimized, under 1800 kc, and relatively inexpensive.

Six meals listed. 1. Coffee and a veggie burger. 2. Oatmeal with ground flax and cinnamon. 3. Black beans, rice, and brussels sprouts. 4. Chicken and avocado on salad greens. 5. Leftovers from 3: beans, rice, sprouts. 6. A protein shake at bed.

Here are the macros: 20% protein, 21% fat, 59% carbs.

I have a vegan version that is closer to 70% carb, about 10g less protein – substitutes beans and rice and olive oil for avocado/chicken salad.

I’ve been too reliant on fizzy drinks and artificial sweeteners. So I’m reducing to 1 unsweetened fizzy a day, and using only monkfruit/erythritol to sweeten coffee.

So I’ll see how this goes, especially with pricing. The BCAAs, creatine, and protein shake aren’t cheap. I’m exercising 6 days a week, strength training on 2-3, consistently for about the past 2 months. My goal is to see increases in strength and a better body composition with less injury.

A week in: I’m INSANELY hungry all the time, eating prob 800kc more every day. Have gained muscle, to be sure. But I wake up to eat sometimes.