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.
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.
*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. 🙂
I’ve actually had it before – the previous rheumatologist prescribed it at half my current dose (15mg/day). I didn’t realize I needed to take it daily. Also the enthesopathies weren’t as numerous or frequent as they are now, so I can’t say whether it made much of a difference.
Here’s the thing: I have “inflammatory polyarthritis.” Like “pneumonia” it’s a synonym for a symptom, not a cause.
The pcp refers me to a specialist. I’ve been to 3 rheumatologists in 15 years. They send me to orthopedists and physical therapy. I see a different doc for every joint: shoulder, ankle, knee, hip, back. The ones who make a connection? “See a rheumatologist.” The rheum says “see an ortho.” Go ask your dad. Go ask your mom.
It’s not my job, man, phrased as, “we don’t handle that here.”
I’m not hellbent on any particular diagnosis. Or any particular drug. DMARDS, biologics, or even industrial strength NSAIDs like Meloxicam. But even though enthesopathies aren’t taken as seriously as arthritic joints, (or even red, warm, inflamed enthesitis-es), there can be just as much damage. The connective tissue can calcify. And some of these drugs prevent or slow damage in enthesopathies.
I’ve been looking for answers for 15 years. I really don’t want to wait to see if the calcification in my hips gets worse. If the tendons in my left hip – that feel like they’re going to rupture like the ones in my right – finally give way.
I’ve actually put in writing to my providers that I am “already on disability, not looking for pain meds, and am not here for attention.” That I need collaboration; help in solving this problem.
So this is where I’m starting, and I’ll see what happens 🙂
Update:
5 weeks after increasing my conditioning exercise, I started taking the Meloxicam. I had been taking it pretty easy, and feeling a little stronger about 3-4 weeks in. I was trying not to inflame any enthesitis. Still had pain in the entheses of the hip (upper hamstring and obturator internus and hip pointer), just below the knees, and several places in the elbows and shoulders.
In the last few days have I been able to intensify exercises to the point of muscle soreness. Without bothering the entheses. This is huge. If I can do this, I might be able to return to running. The limiter on it has always been the upper hamstring insertion (ruptured).
3 months in, I’m running again. Sort of. About 5 one-minute sessions, 3 times a week. But this is as far as I’ve ever gotten. The limiters are my knees (increased weight doesn’t help) and asthma (it’s just that season).
I’m going to gradually increase running and also start some new movement goals over the next few months. As with all meds, I’ll re-evaluate. But so far it’s been fucking great 🙂
At least it’s not 2020. But here I am, talking about poop, in gory, gory detail. You were warned.
I ditched the Mg supplement prior to the PCP appointment. The serum levels were normal. So…
I am not constipated. I poop all the time. Like every time I pee. I poop hard rocklike pellets. I’m guessing it takes about 4 days at least for food to make it through. For me. For most people, it takes 2-5 days, says the Mayo clinic (found with a cursory google search “average time it takes food to exit the body as poop.”)
My insurance company sent a colon cancer screening kit. All I had to do was get some of this granite poop onto a toothpick with bristles and into a tiny plastic case with an even tinier hole in the top.
Attempt #1: my rock-hard poop would not stick to the toothpick no matter what I did. I got a couple of dark brown sand-sized grains onto it, sent it off, and got a new kit in the mail. With the letter saying they couldn’t process the first one. I’m guessing because it didn’t have poop in it.
Attempt #2: I took 1/8 cup of miralax and a little laxative pill. Nothing happened. Tried it again 8 hours later. Again, not even a stomach rumble. The next day, I took 2g (that’s grams, my friend) of Mg in the span of 12 hours. Four 500mg supplements. It took 2 additional days of this dosage to get poop soft enough to put in the apparatus.
Balancing my elbows on the counter and my wrists against a prop, I was able to get some poop in (and some poop out) of the container. Awaiting word of my success.
Meanwhile, nothing else in my life seemed to change with the magnesium. I stopped it, and within a couple of days, rock poop again.
Most of the advice for people in the early stages of HD is the usual, generic advice for good nutrition. Later, losing weight is a thing. So is swallowing. “There is also some evidence that maintaining a body weight slightly above ‘desirable’ weight will facilitate control of the disease.” There’s no verified causal link between particular foods/groups and HD symptoms (for better or worse). But there are recommendations, sometimes for specific supplements, like calcium. I’ve experimented enough with dieting content and timing (fasting, keto, low carb, FODMAP, diabetic restrictions) to know what my body is comfortable with.
My goals:
stable diet, so that I can monitor changes in supplements as I experiment
log diet info, so that I can supplement nutrients as needed
shop with a super low budget
eat mostly whole, single ingredient foods
eat mostly foods that don’t bother me for any reason
Macros and Supplements
I was craving carbs, hungry all the time. I’ve tried everything I could find online to mitigate this, promise. I feel ok with keto, and even better fasting, for a day or so. But it’s not something I could maintain long-term. For me, the trick was counting carbs so that the total is about 150, but only about 50 at any one time. I’m notoriously bad at sticking to a recipe (ok, following instructions in general), but I’ve started measuring food. And I’m good with averaging: I eat 2300 kc one day and 1500 the next. I don’t pay much attention to the other macros. I was getting most of the official RDA for everything but vitamins D and E, so I added them to the daily mix. I also like to tweak the recommendations to include the AREDS2 list. Following that, I was also low on a couple of minerals. I have a few bottles of multivitamins, so I’ve been taking 1/3 of one every day, to add some extra minerals and Bs. My serum Mg was low. I poop normally when I am taking the Mg supplement. So I take it. And it’s recommended to take Calcium if you’re supplementing Mg, so I take that, too. Theglucosamineis a definite plus, I’m still experimenting with the collagen.
Foods
I’m losing weight (very slowly) but at this stage in my HD progress, that’s fine. I need to lose a little for my knees and hips. Here’s what I ate one day:
What I Ate One Day
coffee + cream, 3 eggs and some spinach sauteed in olive oil
a half cup of lentils and a half cup of collards (some olive oil in both)
a sweet potato and a boiled egg
a cup of lentils and a boiled egg
.8 cup of rice and a boiled egg and half a cup of collards
Plus some water, tea, and diet drinks. I didn’t feel hungry, it was about 2,000 kc. I cooked the lentils and rice from dry; sweet potato, collards, and spinach from fresh. Most days I don’t eat so many eggs and have some tuna with yellow mustard and sugar free sweet pickle relish. I usually have some frozen berries (cherries or blueberries). And popcorn in olive oil. I use salt and fresh pepper in everything, ginger in green tea. I prefer fresh, will make do with frozen. I’ll sub any greens for collards, chick peas for lentils. On the road I’ll get canned veggies, fresh fruit, and precooked eggs. I try to eat to reduce inflammation. I add hot spices (ginger, peppers), especially to inflammatory foods like meat. I eat yellow mustard for turmeric, pickles and an occasional beer for gut health. (I hate yogurt, sorry, mom.)
What I Do Eat (90%): It’s easier to concentrate on what to eat, since it’s a shorter list and it makes shopping and decisions quick.
Rice and corn without anything added and stuff made from it (tortillas, rice cakes, popcorn)
Green and yellow vegetables (greens, salad greens, cucumbers, asparagus, cactus, artichokes, squash, yam/sweet potato, carrot, pumpkin), avocado, olives, pickles
Berries (all of them) and cherries
Eggs, fish, and occasionally chicken
Coffee, tea, water, fizzy no sugar drinks (prefer stevia, then splenda)
Rarely: sunflower seeds, walnuts
What I Don’t Eat Much Of (10%): the anti-list (why it’s off limits for me):
Restaurant food (too many surprises)
Sauces and anything in a packet (ditto)
Sugars – honey, agave, corn syrup, all of it (inflammation and blood sugar regulation)
Fruit that is not berries, large quantities of tomatoes, and any fruit juice (ditto)
Red meat (expensive, sustainability issues, often has surprise additives like sugar in jerky)
Nuts (expensive)
Pretty much anything not on the other list
Budgeting $55-$65/Week + The 10%
$15/week for the veggies, beans, and rice
$7 for eggs/tuna
$7-12 for frozen fruit
$15 for carbonated flavored water or sugar free sodas*.
In hot weather I try to drink an electrolyte powder every day, another $3.
Every month or so it’s another $10-15 for yellow mustard, olive oil, spices, green tea, coffee, etc.
Tools
I log all the supplements, food, drink and exercise. I don’t check it much, now that I got the carb and nutrient targets where I wanted.
I’ve been using Cronometer. It’s free, and the app is super quick to use.
I set it up by adding the food I ate everyday (it does a lookup on a partial text). I added all the supplements. Now I just copy the previous day and edit individual values. It auto-calculates the nutrients for everything. You can choose which are highlighted, and you can set the range of acceptable values.
Week Averages
Making It Interesting vs Making It Work
I love food and eating. I’m a creature of habit but also sometimes bored. So I’ve tried things like making jello from plain gelatin and electrolyte powder and adding frozen blueberries at the end. I take peach fizzy water and mix it with stevia and matcha and sprinkle ginger on top. It helps that I love the taste of olive oil + salt + pepper + any vegetable. That I love eggs. And olives. That I tolerate fish pretty well with olive oil and heat or cool and pickles, sweet or not. That I love salad and avocado and olive oil. I like to saute jalapenos and then add the eggs or veggies. That I use curry powder and cumin in the lentils. And/or the greens. I use chai spices on the squash and yams. And did I mention olive oil? So this works for me because I already like the food on the list. I imagine it would be harder to transition if I didn’t like veggies so much.
And when I stick close to it, I feel noticeably less fatigued during the day. So this is what works for me, for now.
I stopped taking glucosamine at the start of this experiment. It took a week or so, but gradually joint pain increased. Things that hadn’t hurt started to hurt again, others that always hurt were worse.
I don’t have typical Rheumatoid Arthritis joint pain, with redness and swelling. My joint issues are soft tissue disorders, the worst being enthesopathies. I was playing soccer, landed on one foot and twisted, and heard a pop. The obturator internus separated from the hip bone. So did a third of my hamstring.
I’ve been diagnosed with everything highlighted above. Below is a pelvis. It’s not my pelvis. But I did have imaging of all kinds, revealing, the avulsion injuries, calcification on both ‘sit bones’ (where this image is pointing), and tendinosis on the upper outer hip.
When I’m at the gym, if I increase weight or reps to reach muscle fatigue, the limiter is a joint: knee, shoulder, elbow, wrist, or hip. If I push through the pain, I’ll end up with a tendinopathy that will keep me sidelined for weeks until it’s healed.
Not My Pelvis
Legendarily bad hips run in the family, in the very same people that had HD. My grandmother, who didn’t walk for the last 20 years, blamed the hips on her father. My aunt died from HD after 2 hip and 2 knee replacements.
“Depleting rheumatoid arthritis cells of HIP1 decreased their invasion capacities by nearly half, a property required by these cells to properly recover after cartilage and joint damage.”
Result?
I still have no answers for the joint/tendon issues. I suspect that since both skeletal muscle and bone density are affected, there will be further information on other connective tissue. Someday. Until then, I’m back on the glucosamine. Within a week I was feeling better, exercising longer.
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.
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.
Mastering The Decline 