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.
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.
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.
I’m constantly in the process of creating an exercise routine that works best for me. A lot of practices claim they’re a fountain of youth: qigong, yoga, 20th century fitness, and 21st century ‘movement culture’. My goal is slowing the progression of HD. My quest is for something similar, even if I’m reluctant to admit it. I don’t want to live forever, I just want to live with the best quality of life.
Learning to Juggle. And Hackeysack.
My body isn’t the same from year to year (or day to day), so it needs to have a core set of goals that can be approached with flexibility.
Differences in anatomy and physiology (visible or not) aren’t built into any system I’ve studied so far. The tall, lanky basketball body versus the sprinter versus the gymnast. Differences in fast/slow twitch muscle fiber ratios. Tendencies to build muscle or not. It’s also super-important to consider pre-existing injuries and tendencies to re-injury. Most systems work for one or two body types better than others. None work for me unmodified.
Incorporating Multiple Movement Systems
I’m ignoring systems designed to achieve some spiritual purpose (Kundalini yoga, Gurdjieff movements) unless they have integrated movement and fitness goals. Great stuff, but incorporated into other daily practices. Here’s a summary of my sources.
Hatha Yoga / Pranayama
The standard Ashtanga flavors of yoga have a lot of variation to offer, but I have to modify in a couple of ways. Long-held static postures are a no-go. It makes my joints and tendons stiff. My body doesn’t care if it’s sitting on the couch, cross-legged for meditation, in corpse pose, or in an active balance. If it’s too long, it causes pain and seems to be counterproductive. This rules out Bikram and Iyengar. Forward folds have to be limited: I have two torn tendons in my hip, one being a hamstring. All it takes for me to be out for weeks is to get serious in a folding-intensive class. Once.
Qigong
I’m looking at Yi Jin Jing for specific movements and combining energy work with the exercises, from qigong or other sources. “You can do vital breath through everything” – my instructor. The stimulation from tapping seems to increase proprioception. People with HD misperceive where their bodies are in space. They won’t be aware that a hand is waving like it’s trying to flag a taxi. They often have injuries they don’t even notice.
20th Century Exercise Routines – J.P. Muller
In the 20th century, pre-physiologists like J.P. Muller and Eugen Sandow created daily exercise routines. Muller’s goal was lifetime fitness, Sandow focused on building muscle and strength. What they have in common with qigong, tai chi, and yoga is an emphasis on how to breathe while moving. Muller even wrote a 2nd book on his breathing exercises and focuses on fluidity in the movements. Muller created something that could be done daily, in 15-20 minutes.
21st Century Fitness: ‘Movement Culture’
Ido Portal took notes from Claude Victoria and capoeira. He stripped movement from context and created a philosophy of physicality based on play. Actions are given degrees of freedom and spontaneity that linear, proscribed fitness routines and physio training lack. That reduces the repetitive motion issues quite a lot. I’m not into the extreme sport aspect of it: the one-handed handstands and flagpoles. I am one of the “people who weren’t willing to train many hours a day, six or seven days a week”. I met a movement guru who is more interested in the physiology and adaptability, and incorporating philosophy and health rather than competing like a bro.
Sport and Physical Therapy
I’m excluding sports generally and endurance sports in particular. They’re out mostly because I don’t have the coordination (HD), but some were off the table earlier. This is not a humblebrag, I’m more of an experimenter than an athlete: I stopped triathlon training, HIIT sprints, and roller derby when I tore a hamstring in the 2000s. In the early 2010s, I took classes in trapeze, silk arts, parkour, crossfit, and gymnastics. I started climbing and capoeira. The repetition of sport-specific training was too intense. Hand-intensive and impact-heavy sports were dropped because of the joint issues and tendinopathies: crack climbing, silks, parkour, gymnastics. I tried surfing (because I was terrified of being alone in deep water) and got surfer’s neck and flared a shoulder tendinosis from paddling out. What playing with sports gave me was a range of training styles, exercises, and intensities.
Physical Therapy
After spine, hip, and knee injuries I went through several rounds of physical therapy and realized I didn’t need to spend 3 hours at the gym every other day to make a difference in how I move and feel. I’m taking anything from PT and sports that hits a sweet spot: particularly efficient movement that exercises an otherwise overlooked area of my body. Rolling the IT band, wall squats, vibration therapies, superman (dorsal core, good for HD dystonia and ruptured disks).
Capoeira
The Afro-Brazilian (martial) art capoeira, is evolving proscribed movement (like a sport) and a philosophical worldview. What it has that other paradigms lack are the focus on inversions and balance in motion. Using the arms as much as the legs for stability on the floor adds a lot of fall resilience. Since I’m given the ok to modify in class as much as I need, it’s the only sport I’m (occasionally) continuing.
Thanks, Mom
Later than anyone would have expected her to be exercising, and long after she couldn’t drive, mom was at the gym. She was in much better shape than her family members at the same age with HD. She “went to the Y for a yoga class.” Not mentioning the 20-odd minutes of cardio on the bike she did before walking (with her cane) to each of the weight machines. Before yoga class. Mom’s the reason I’m including the strength training, too. HD increases bone loss as well as muscle loss.
Goals
The ultimate goal is a short, easy to remember, daily routine that incorporates everything in this checklist.
Breath and Energy (Pranayama/Qigong)
Complete ROM, All Joints (Fluid/Non-Impact)
Core Fitness
Neck and Spine Flexibility
Extremities Strength and Flexibility
Inversions (Lungs and Spine)
Tapping, Vibration (Proprioception)
Balance
Non-Impact Cardio (Heart and Lungs)
Oh, and under 40 minutes.
Routine Cheatsheet, 2019
Details of the new 2020 routine (and an explanation of the 2019 cheatsheet) in a later post. I’m planning to post a breakdown of each of the movements, its purpose and effects.
Hopefully what you’d take from my process is not my routine – but how to create yours, starting with your goals and listening to your body. Experimenting and noticing reactions, short and long term.
My thing is really old human-made things (big and small), other languages and countries, and sometimes people. My plan is to jettison from the comfort zone for months at a time over the next few years. On a budget.
It Always Sucks The First Few Days
I feel like I’m on carnival rides for the first time. I don’t know which way to lean or where the handholds are. I can’t speak the language. The big, impersonal city hates me. I am in tech hell trying to figure out new carriers and wifi. I don’t know how to ride the bus or pay for groceries. I may eat peanuts and fake pringles the first day because I landed on a holiday when all the stores are closed except that one gas station.
It always feels like wtf have I done? Why am I here? It gets existential pretty quick. This time I’m also on the edge of depression. It’s rainy and cool.
I thought I was traveling because I wanted to see things I hadn’t. Before I can’t. But it’s really become an exercise in dependence/independence, acceptance/rejection. How much help will I need? Will be offered? Will I ask for? How will people react? It definitely felt like I was crashing a party once or twice. Overall it feels good.
Upside
It’s in line with the philosophy: if HD makes it harder, do more of it. So the cognitive struggle is real. It’s often gorgeous, this planet, no matter the weather or location. Even if I hate the rain and grey and cold. I have met some incredible people who ‘get’ me, HD or not.
Traveling Checklists for Me
Timing. Every other day is a rest day. Especially each side of a travel day. This means minor issues can be worked in and you don’t feel like you’re rushed to visit something.
Organize. When you’re having a particularly clear day, figure out the packing list and pack in advance. See if you can manage the luggage 🙂 Put everything in a backpack and a carry-on size suitcase (with wheels) to check. More than this is not manageable.
Research. Search attractions, neighborhoods, and transit in that order. Then book them in reverse. Shared rooms should have at least a private bath.
Apps. Maps with transit, banking, and safety apps like vpns, emergency numbers list, and safe-neighborhood lookup (traveling solo). Screenshot a description of HD in the local languages.
Downsize. If I own 2 pair of scissors, I can’t find either of them.
Redundancy. Personalized things like glasses, retainers. Physical copies of docs and also encrypted versions both cloud and device. Bring an old and new phone but don’t worry too much about extra cables or converters.
Emergency. Masks, minor first aid stuff, solar/crank chargers, water purifiers. Brita bottle (which I need in Alabama, too). Bring OTC meds, they differ by locale. Anti-diarrheal is Rx in Brazil, for instance.
How Huntington Disease Is Affecting Touch, Satiety, and GI Sensations
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.
Hack the diet. I can’t really change all these other variables if my diet is wildly swinging from oreos to broccoli. I’m doing a modified low carb thing that takes less thought than actively trying to measure keto. Or cook. I have enough to think about already.
limiting carbs
veg – and greens every day for leutein
eggs or tuna, but usually not meat (both for the world and my wallet)
no weird oils, avoid processed food except..
some protein powder?
fiber if needed
Exercise and Movement
I have a routine I try to get through every day. I suck at both repetitive exercise and schedules, so I’ve come up with something that is under half an hour and incorporates most of the list below:
Zyrtec/Cetirizine (seasonal allergies + asthma) Over 10 years of experience with this. After a decade, I finally remembered to start taking it *before* I am dead-ass tired every single day of allergy season.
Experiment with these supplements – do a trial of each while keeping relatively stable diet/exercise/other routines.
CoQ10 (Improves my HD symptoms a bit on high dosages.)
BCAAs (Allowed me to workout longer and harder.)
GABA (in progress)
Probiotics
Leutein (Are increasing vision problems related to the corresponding reduction as I havn’t been able to access my source (diet:greens) in traveling)
Thymus and possibly other organ supplements
Maybe nicotine, but I was addicted to it for 15 years. So maybe.
Other nootropics?
(FYI, I found in doing research for experiments that benadryl may not be a good choice if you have cognitive issues.)
Some of the list items presumably help with cognition and HD symptoms. Others reduce pain, mitigate joint problems, or correct known imbalances in my body that aren’t (directly) related to Huntington Disease.
Your body will have its own things to say about these.
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.
Mastering The Decline 