2019 Letter To My Friends About HD

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)

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.