First Hike in Over Two Years

Very exciting day! I went with my wife and kids (5 and 2) for a hike near our house. It is a trail I had been on countless times in the past and had often also run on. I don’t think I’ve hiked it in at least three years. I had spinal surgery about two years ago (Jan 9th, 2019), and have definitely not done anything like this since then. Feels like a huge accomplishment.

I never saved anything for the swim back.

From Gattaca.
(Not really true, but I was thinking of this on the way up)

In the end we walked for about 80 minutes total with a break in the middle to have a snack up at a bridge that didn’t exist the last time I hiked this trail. About 2.4 miles and 480 foot elevation gain. It was a beautiful day, a bit windy, but nice and sunny. I used my knee braces for the first time in about nine months (used to use them every day), and used my hiking poles on the way down.

It was really great seeing the kids hiking. Connor (2) did quite a bit of walking, but Mekayla also did a lot of carrying. Morgan (5 ½) hiked the whole thing though and kept up really well. On the way down, Mekayla, with Connor on her back, circled around on some other trails to get a couple extra miles in and go back to our house. Morgan kept me company on the way back to the car. It was great and I had a great little hiking buddy.

So now I’m settled in on the couch for the 24-48 hours of nerve pain I am anticipating from so much exercise. I started the day at a two (out of ten), and am now at a five. The big question is if I’ll be able to fall asleep tonight. I had been at a mostly-maximum dosage of my neuro-pain med at night and I finally decreased it last week. So potentially I could boost the dosage tonight to help me sleep. We’ll see.

Exhausted but I think Dreem is Working

It has been about a month since I started using Dreem and I am now 18 nights into the core part of the CBT program. Feels and looks like it is working. I’ve been fairly optimistic for the past week or so.

A big part of it – the toughest part – is the sleep restriction therapy. Essentially it is:

  1. Take the average hours I was asleep (Dreem chose 6.5 hours) and limit myself to never sleep more than that.
  2. Don’t get in bed until after a specific time (12:30AM).
  3. Get up at a specific time (7AM) and never before then.
  4. Never sleep past 7AM.
  5. If I spend more than 20 minutes awake in bed, then get out of bed to go relax somewhere else till I am about to fall asleep.
  6. After my 7-day average sleep efficiency is over 90% go to sleep I get to move up my bed time in 30 min increments.

The goal is to get rid of the ups and downs in my sleeping, increase efficiency, and consistency.

It has been incredibly exhausting. Every night for the past two weeks I have been so tired before my bedtime that I can’t even read anymore. I just sit on the couch trying not to fall asleep. But my sleep is not bouncing all over the place anymore:

The first two weeks my average sleep efficiency (time asleep divided by time trying to sleep) was 70%. It also varied a lot from 0% to 96%. Over the past two weeks it has averaged 89% and varied from 84% to 92%. Due to the sleep restrictions I’m still getting slightly less sleep than I had been on average, but currently I am on a 12AM to 7AM schedule, and hoping I get to shift to 11:30PM to 7AM this week.

The slow increase in hours I can sleep should also help me identify how much sleep I actually need. I’m trying to continue to do my rehab at a consistent level so that I can properly gauge how much sleep my body needs while doing rehab.

Shooting for 90% efficiency leaves surprisingly little time to fall asleep and for any awakenings at night.

A nice thing about going to sleep so late is that I actually have more time in my day. I’m exhausted during that time, but I do get more time for reading. Currently alternating between the second Mistborn book and a history of the fall of the Roman Empire. Books for work seem to do too good of a job keeping me awake unfortunately.

Despite the exhaustion, this is still way less miserable than when I was experimenting with my medication earlier in the year.

Sleep Tracking: Apple Watch vs Dreem

For a bit over three years I’ve been tracking my sleep mostly with a an Apple Watch and great little app called AutoSleep. I’ve been suspecting for quite a while that the tracking was not really sufficient. My legs and muscles twitch a lot, and I wake up a lot. Because the Apple Watch sleep tracking is mostly an accelerometer movement is likely to get misinterpreted.

About two weeks ago I decided to buy a consumer grade brain-wave sleep tracker: Dreem. It is fairly pricey, $500 (you can get 10% off with my code: SOOSEKOIS).

Two weeks of data

I’ve been tracking with both for the past 10 days. Here is a comparison of what each is telling me.

Asleep Hrs
Apple Watch
Asleep Hrs
Awake Min
Apple Watch
Awake Min
Aug 46.74.553105
Aug 55.75.82145
Aug 67.54.81345
Aug 76.65.95660
Aug 86.44.5149225
Aug 97.65.726135
Aug 104.35.09135
Aug 117.75.232180
Aug 122.33.6295270
Aug 130 (*)3.60 (*)75
Aug 148.76.512150
Aug 158.06.010135
Aug 167.56.12775

(*) In too much pain to fall asleep. Eventually fell asleep at 2AM and woke up at 5:30, but pulled off the Dreem headband apparently.

Not surprising given the sensors involved, but Dreem is pretty hands down more accurate. I am certainly not at all normal though since my muscles involuntarily twitch due to the spinal cord damage. But having more accurate tracking certainly feels better since I try and use this data to adjust how I am doing my rehab.


Possibly the more interesting aspect is that Dreem walks you through a cognitive behavioral therapy for insomnia routine for trying to correct sleep problems. I’ve only just started. I am exhausted from it, but I do feel like I have had fewer problems falling asleep and waking up at the right times. So I guess it may be working at resetting my sleep rhythms.

The App

The only real disappointing part is that the app is not particularly good for long term tracking.

AutoSleep long term view. I have minor complaints, but they have put some good thought into it.
Dreem – just a scrolling list of nights. You can click in and compare individual stats to 7 and 30 day averages. Averages are dumb though.

Dreem just doesn’t use the space on the screen well for visualizing the data. There are a few places where you can graph individual results, but it isn’t great for analyzing. They both let me export the data at least.

Anyways, the data from Dreem is too good to not keep going with it, and I currently am fairly hopeful that the CBT-I over the next 6 weeks will pay off. It lines up with some of the things that sleep doctors have had me try also.

A Miserable Four Months of Medication Experimentation

March till early July was filled with experiments for adjusting my medications. It was pretty terrible. I was trying to reduce how much pain I was in. Particularly in the afternoon when I couldn’t focus, and at night when I was trying to sleep but couldn’t. Unfortunately when I talked to doctors about it, the only answer was to experiment. Make a change. Wait three weeks. Evaluate. Then try the next thing. I took a lot of notes that I have spread all over the place. I thought I would rewrite them here since I will likely have to do this again in a year or so.

March 1st – My starting point

  • 3mg Tizanidine at night
    • Prevents leg spasms, twitching, spasticity.
    • Before starting this in 2017 I was almost falling down multiple times a week due to my legs twitching randomly while walking.
    • Makes me super tired, and makes my muscles weaker.
    • Changes to this drug badly screw up my sleep and make my legs twitch. I’ve fallen down in the past soon after making changes.
    • At one point was up to 6mg. Made me so weak that I could hardly walk up a flight of stairs. Couldn’t really stand up on my toes at all.
    • Goal: get off this entirely.
  • 1200mg Gabapentin at night
    • Makes me tired and sleepy.
    • Lots of extra pain and twitching when I change it. Also causes insomnia, dizziness, and depression.
    • Controls nerve pain for a period of time. Somewhat helps spasticity.
    • I’m on the highest dose I’ve been on. Tried stopping in mid-2019 when I hoped I could just use Tizanidine. Did not go well.
    • Goal: just rely on this for pain and spasticity. Spread it out across the day to better manage pain.
  • 30mg Cymbalta in morning
    • anti-depressant and can also help with nerve pain.
    • unlike Gabapentin, it definitely doesn’t make me sleepy.
    • In 2018 when I started it I had two months of terrible stomach problems and muscle problems.
    • Goal: Last resort is to increase this if the Gabapentin makes me too tired during the day.
  • Vitamins: quite a few all at night
  • Melatonin: 6mg slow release at night to try and keep me from waking up.
  • Pain on a 1-10 scale: starts at a 4 every day. Almost always a 6 by 2PM at which point I could hardly focus on anything. Most nights also in pain and it got in the way of falling asleep.
  • Sleep: averaging 5.75 hours a night. Often alternating between 2-3 hrs and 10 hrs.


Ideally, make a small change, wait three weeks to evaluate and then make the next one.

DateChangeResult before next change
March 13Add 300mg Gaba at noon; 1200mg at night; 1500mg total.– Legs very weak. This is too much Gaba.
– Nerve pain reduced
– Initially very tired, but sleepiness did slowly get better
March 23300mg Gaba at noon; 900mg at night.– Legs still weak. Need to reduce weakness.
– Nerve pain ok-ish. Still there at night sometimes.
– Had to back off and stop most PT.
April 10Stop Tizanidine. Try and reduce weakness– So weak, so tired. Especially later in the week.
– Sleeping really poorly. Maybe Tizanidine was helping me sleep more than I thought.
– So confused. Pretty depressed.
May 11Move vitamins to noon. Maybe my vitamin D is causing insomnia? Or some other vitamin waking me up.– Kept getting worse.
– Even more tired in the afternoon.
May 29Move all magnesium vitamin to night, maybe making me sleepy?– Nope, still crazy tired
June 7Move 300mg Gaba from noon to morning. Maybe that is making me sleepy and the Cymbalta will counteract it.– Nope.
– I feel positively sick after I take my vitamins. Tired and nauseous. Getting worse.
June 8Vitamin D toxicity? I increased it in Nov 2019. Stop all vitamins! Gaba 300mg morning; 300mg noon; 600mg night.– Hooray!
– Still tired, still pain though.
June 13Let’s add back in multivitamin– Nope. Terrible idea. Nausea and super tired immediately comes back. Vitamin D was building up in my system over months and slowly making things worse. Will take months to reverse.
June 22Gaba: 300mg 12pm; 300mg 5PM; 600mg PM. Try to target afternoon pain and evening/night pain.– Kinda helped. Still tough to fall asleep.
– Learned: Gaba absorbed in small intestine and has a 5hr half life. So…
– 3-4 hours for Gaba to fully hit me. This is when I am most tired.
– 300mg reduces pain for 5 hrs.
– 600mg reduces pain for 7 hrs.
July 11Gaba:
– 300mg at 12pm => pain reduction 2-7pm
– 600mg at 5PM => pain reduction 7p – 2a
– 300mg just as I am falling asleep => pain reduction hopefully to 6 or 7a.
– This is pretty much working.
– My sleep is still a mess, but not really due to pain anymore.
– Sometimes tired in the afternoon, but I think better than being in pain.
– Able to start up rehab and PT again.
July 21Stop slow release melatonin. Only use fast melatonin to help me fall asleep. See if I can reset my body’s sleep cycle to work correctly.– Seems to be working so far.

Experimenting with meds is so non-linear. You can’t really A/B test it because everything is always changing. What I assume was vitamin D toxicity would have hit me hard then either way, but it was very confusing.

Where I’m at

  • I cut out a drug: Tizanidine. Yay!
  • In March I also stopped using knee braces which is a big deal.
  • Completely stopped vitamins. Seems not great
  • I moved around Gabapentin.
  • 8 days in July where my pain started at a 3.
  • 16 days in July where the pain maxed out at a 5 rather than a 6.
  • Definitely super tired, but my sleep schedule is getting a bit better.
  • PT has restarted and is kicking my butt again. So sore. Terrible balance and tough to do my 10 minute walk the past two days because I overdid PT.

Now on to trying to fix my awful sleep patterns. After discussing the efficacy of my watch tracking with my sleep doc, I decided to go crazy and buy one of these. That’s a different blog post though…

PT: Strengthening My Lungs

My spinal cord getting slowly damaged from T5-T8 over the decades means that pretty much every muscle below my armpits are weakened in some way. Lungs rely on a lot of muscles and even getting aerobic exercise won’t necessarily strengthen those muscles.

Starting in September of last year I began exercising them with this simple “respiratory muscle trainer”: The Breather.

When I told my PT I had bought one of these he said I was the first patient who ever actually asked about them. He often recommends these sorts of devices to his patients who are pro athletes who need to work on their breathing. His recommendation of how to use it was pretty different from the directions:

  • 30 breaths – fairly fast – less than one second apart
  • Twice a day
  • Stick with one setting until it is easy and then ramp it up

It takes me less than two minutes a day and it may have been one of the best exercises I started doing. I began on the lowest setting (1 on inhale and 1 on exhale) and couldn’t even do 30 breaths without stopping. It has now been 6 months and just yesterday I cranked it up to the highest setting (6 inhale and 5 exhale). I have no idea how much this will help if and when I get COVID-19, but I can definitely feel the improvement in my lungs when swimming.

There is also a pro version (The Breather Fit) which I guess I may get once this version is too easy. They seem to have raised their prices though and there are a number of other competitors.

Great Recovery Movie: The Martian

I’m currently re-watching The Martian for what must be the 20th time this year. It has become my go to movie when I am in too much pain to focus. Often I don’t even want to watch anything new. So many things feel so unpredictable and take so much thought that I would rather rewatch or reread something rather than try and parse something new or add in the risk that I may really not like it.

One of the top Amazon reviews for The Martian is exclaiming how great a movie it is for watching and re-watching during cancer treatment. I find the same thing for surgery recovery and spinal cord rehab. Beyond it being a well done movie and story, I think there are a number of things that make it great for rehab:

  • First of all, the movie does a great job of conveying the stress and difficulty of slowly dealing with a problem. It takes place over the course of years with moments of excitement mixed in. I’m approaching the end of the second year where I knew something was wrong with my nervous system, and I’m expecting to be working on rehab for another year or two. Every day requires making lots of small steps in the right direction, but there is also a lot of waiting around (in pain) after taking my daily steps. Waiting for the next day to take one more step and trying to not go too fast and slide backwards. Trying to stay on task, but then also needing to re-evaluate and adjust my plan.
  • There are a few points in the movie where the main character has a major setback and kinda gives in to depression and being a wreck for a bit of time. It normalizes that sometimes the right decision is to sit on the couch and give in to doing nothing. Wait for the pain to dissipate. Wait for a point where you can logically process and figure out the next step. Wait another week to gather more data and not immediately second guess everything.
  • Then you get back up again. Start over again. Analyze what went wrong. Look at the data you have about yourself and your situation, and try the next thing. Iterate.
  • Lastly the movie does a great job of portraying loneliness. Even when lots of people are helping you and lots of people care, you are still really alone. In the end it is always your life, and you are always alone with it. You are still needing to figure out the details and second guess your choices. You make the final decisions and live with the consequences.

The movie ends optimistically with a pretty good summary of the above:

When I was stranded up there, by myself, did I think I was going to
die? Yes, absolutely. And it is going to happen to you. This is space [life]
it does not cooperate. At some point everything is going to go south on
you, and you’re going to say this is it, this is how I end.

Now you can either accept that, or you can get to work. That’s all it
is, you just begin. You do the math, you solve one problem, then you
solve the next one. And then the next.

And if you solve enough problems you get to come home.

I have a list of ten problems that are currently getting in the way of rehabbing my body. Solving things is slow…

Laminectomy for an Arachnoid Web. My Experience and Recovery

It is now about seven weeks since I had surgery to remove my arachnoid web. I thought I would write some thoughts on how recovery has gone since surgery.

I think my big takeaway is that spinal surgery is really damn painful. A lot more painful than I expected. I had brain surgery to remove a tumor when I was about 25 and that hurt a lot less and the recovery was a lot shorter. It is really hard to not use your back.

The surgery itself was pretty fast. Just a few hours asleep and then waking up groggy. The first thing that actually was bothering me was that my head was itching in a few spots and kinda bloody. Turns out they put my head in a clamp and tighten it in place with some screws during surgery. I ended up in the hospital for three days. A bit longer than expected because I got a pretty bad spinal headache due to losing spinal fluid during the surgery.

After the hospital I was in a hotel in Rochester, MN for a week. The pain for my back got pretty bad even though I was taking a fair bit of oxycodone. Pain as high as an 8 (on a 1-10 scale) which is apparently the point at which I screech uncontrollably. Fortunately it really only got that bad when I was moving to stand up. I flew home from Mayo (first class but was still not at all comfortable) about a week after surgery. Couldn’t walk much so I was in a wheelchair through the airports, and a friend gave me a ride from the airport while Mekayla picked up our car and came home separately with Connor (Morgan had returned earlier and was having a great time staying with friends).

Most of the six weeks after surgery was just laying around and watching way too much TV. Mostly couldn’t even stand to watch anything that I hadn’t seen before so it was really a lot less fun than that sounds. At first I just had too much oxycodone in my system. Then I had a week-long spinal headache that was probably my body adjusting to the new dynamics of how spinal fluid flowed in my body without an arachnoid web getting in the way. After about four weeks I had tapered off of the oxycodone and then had another weeklong headache, that peaked at a non-stop 7 in pain, caused by oxycodone withdrawal and autonomic dysreflexia. That headache was really debilitating.

Throughout the first six weeks of recovery I wasn’t supposed to lift more than 10 pounds, so I couldn’t do any physical therapy other than just walking. When I got out of the hospital I could only walk about 100 feet. It was a few weeks before I could walk for more than a few minutes. Currently I’m up to 12 minutes. Irritatingly slow progress, but steadily improving.

Still taking a lot of Tylenol every day to get through the pain, but I have now started PT exercises and have gone for a walk for 10 days in a row. My muscles feel very weak, painful, and sore all the time, but it it is a start at least. I’m expecting a good year or two of rehab to go. Hopefully my body will start to get used to it. I think all the spinal cord nerve problems I was already having – weak leg muscles, bad balance, muscle atrophy, and using muscles incorrectly – are now just resulting in everything complaining as my spinal cord relearns how to transmit signals to my brain. Unfortunately most of the signals are just pain so far.

But pain is kinda one of the exciting signs. For the past year or so my legs have been really numb and getting more numb. I couldn’t really feel much if any pain in my left leg. The other day though, I dropped a small measuring cup on my foot and actually said “ouch”. I am pretty sure I have been having some sensation returning to my legs that was not there before. Not sure if it will keep improving or if it is all entirely real, but for the moment I’m trying to take pain as a good sign.

Arachnoid Web Spinal Surgery

Welp, on January 9th I had a neurosurgeon from the Mayo Clinic crack off a few pieces of my vertebrae (the lamina portion of the vertebrae) from T5-T8, cut through the dura covering my spinal cord, and then remove a 3 cm long arachnoid web that was compressing my spinal cord. They are pretty certain that the arteriovenous fistula that I had previously been diagnosed with and treated for was completely unrelated to the spinal cord issues I’ve been having. Similar to the fistula though, arachnoid webs are also very rare, about 1 in 500k or so. This paper has some good summaries if you really want to read a lot.

As three (and three quarters) year old Morgan has excitedly whispered a few times:

They figured it out!

I’m trying to not get overly optimistic, but it is quite possible that now that my spinal cord is no longer compressed it may just float back to where it is supposed to be and will conduct signals much better. Really only 1-2 years and a lot of rehab will tell though. I’m pretty excited about the idea of rehab where I can actually make progress though.

So now I have about 5 more weeks of recovery where I’m not supposed lift more than 10 pounds. Unfortunately at almost 4 months now, Connor is already bigger than that. I can however do as much walking as I can manage. Right now I can safely do about 300 feet as long as I have hiking poles to help my balance. Still a lot of pain from the surgery, but it is a lot better than it was last week, so seeing some improvements.

Thanks everyone for all the thoughts and notes. The past month or so has been a hectic whirlwind trying to figure out how to get to the bottom of why things were getting worse. Turns out we hadn’t really figured out the right cause in the first place.

Below is a video of a similar surgery, and a few images of my spine.

This is the removal of an arachnoid cyst which is pretty much the same procedure just a slightly different malformation.

Learning is Painful

This is a post about my damaged spinal cord, but I’ve been working at Automattic for seven years now, so I really can’t help but think about the first line of the Creed:

I will never stop learning.

I strongly identify with this line, but damn it is hard sometimes. The past two to three months I have been in physically terrible shape. Every 3-4 weeks I’ve been learning something new about how my body now works, and this learning is both metaphorically and physically painful.

Aristotle – “Learning is not child’s play; we cannot learn without pain.”

Damn Greek philosophers!

Really I think I’ve been learning something new about my body every few weeks for the past 10 months. Currently feeling hopeful that I can put some of the physical discomfort behind me, but a part of me knows that is probably overly optimistic.

Abdominal Muscles

In early June I went to a work meetup in Denver which contributed to me pausing my PT exercises for about two weeks. Then I tried to pick up where I had left off. It turns out though that muscles atrophy faster when you have a damaged spinal cord, so two weeks off is more like 4-6 weeks off for me. On top of that, it turns out I don’t really have much sensation in my abs. So when trying to do my PT, I didn’t realize that I had badly pulled my abs, so I kept going and pushing through as my exercises got harder. And then for the next week I really couldn’t stand up. About a month later, as I was finally getting better I pulled them again, probably due to dehydration.

My lack of sensation in my abs is so bad that my PT can push on them to get the muscles to release and I am perfectly comfortable where he says anyone else would be in agony. Turns out pain is a really useful feedback mechanism.

I now finally understand why every few years since about 2006 I have badly screwed up my abs to the point of having trouble standing. I just didn’t have enough sensation to tell myself when I needed to back off from whatever I was doing. This problem has been there for a long time. At least I understand it now.

Sleep Apnea

I started on an APAP machine in mid-June. It wasn’t until about two weeks ago that I found a mask configuration where I am pretty comfortable and feel like I can sleep well. There was a lot of bad sleep along the way to figuring that out. But I think I can now see some improvements to two of the fatigue metrics that I have been tracking: grip strength and heart rate variability. This is pretty exciting. My grip strength – yes grip strength! – has increased something like 20% on average. Similarly my heart rate variability has increased by 10-20% which is an indication of less fatigue.

Pretty exciting that I am seeing an improvement in the metrics that I had identified as mattering. For some reason my watch has not been showing an increase in deep sleep, but overall I have also been feeling somewhat less fatigued so I’ll take it.

Unfortunately I have actually been feeling more tired which is probably related to how much sleep debt I have. Supposedly that can take months to catch up on. Just in time for kiddo number two to show up! 😉


The other recommendation I got to deal with fatigue was to start taking Cymbalta which is both an anti-depressant and can reduce nerve pain (maybe allowing me to reduce another medication which can also add to fatigue). I started in early July, and the side effects have been pretty terrible: insomnia, nausea, dizziness (especially looking at a screen), and light headedness due to my blood pressure dropping.

The first week was so bad that after days of nausea and insomnia I repulled my abs because I got very dehydrated. Then ended up calling an ambulance at 3AM when I couldn’t stand up without getting dizzy. Every time I stood up my blood pressure would drop about 40 pts. After they put two liters of fluid in me I was a lot better, but ya it was a bit exciting.

Sidebar: when you are laying on the floor unable to stand, alone in the house at 3AM (Mekayla and Morgan had gone camping), but otherwise ok, it is really hard to know when to call an ambulance. Also, it is really nice when you have a watch on your wrist from which you can make a phone call rather than having to go find your phone.

After about five weeks on Cymbalta, I think I am mostly adjusted to the medication. I am not sure it has helped with fatigue, but I am in an amazing mood. Given how rough the past month has been, I have actually been feeling pretty good about everything.

So… um… yay anti-depressants. I don’t actually think my depression was all that bad. It happened occassionally. What I thought of as maybe a few times a year. The reality is that it was always probably there more than I even now want to admit. Wil Wheaton probably explained this better than I can. But I would say that even though I am unsure just how bad it was, that I wish I had tried this years ago. If you are reading this and thinking about it, you should know that there are other meds besides Cymbalta where the side effects are typically not as bad.

Increased Sensation

This one is really just funny.

So my spine has become a bit crooked (not yet the funny part). It turns out that this was because my shoulder and back muscles had become chronically tight to compensate for my bad balance. My PT has been working on this for many months, and it is improving, but I decided to also add in getting a massage from someone who has experience with spinal cord injury clients. In lots of places my body has reduced sensation, but the sides of my torso are extra sensitive. A little bit of pain is just unbearable even when I know the massage is not that strong.

So, the massage reminded me that my sides are extra sensitive, and then solved a long running bout of marital discord. For years, Mekayla would lay on my shoulder, and then I would yelp and ask why she was digging her fist into my side and she we would plead complete innocence. Ignorance even. She would complain that I was being overly sensitive and I would say something about why she has to twist her knuckles into my ribs. This has been going on for years.

Turns out I was being overly sensitive.


Gnōthi Seauton


Relearning to Walk at Forty: Fatigue, Physical Therapy, and Data

I spent most of 2017 trying to diagnose the slow degeneration of my ability to run and then walk. Then the past nine months have been slowly trying to discover how much I can recover from my spinal cord injury. My spinal cord damage is non-traumatic which means that it is a bit different than the typical spinal cord injury – though I’ve rapidly learned that all spinal cord injuries are really pretty unique experiences. In general, for someone who is missing 30% of his spinal cord for a couple of vertebras I am doing really well, but that really doesn’t make it feel any easier most of the time.

My rehab is still a work in progress, but I’ve been wanting to write about the data I’m collecting for a number of reasons:

  1. I learn a lot by writing, and it helps get the details clearer in my head when I write them down.
  2. Hopefully sharing this can give ideas to other people struggling with similar problems. I’ve taken a lot of ideas from folks with multiple sclerosis, chronic fatigue syndrome, and of course spinal cord injury.
  3. Comments on blog posts can often provide a lot of great feedback and other ideas of things to pursue, so hopefully I’ll learn something from you.

So I’m going to cover a good chunk of the data that I am tracking about my day to day symptoms. If you don’t want to know a lot of details about what is going on, you should stop reading now. Also, I should probably warn you that I like data a lot, track a lot of data, and this is going to be a 3,000 word post. 😀

Background on my Symptoms

Probably helps to outline my symptoms around walking/moving:

  • Injury diagnosis: T1 ASIA D – Sensation changes start at Thoracic 1 though most of the visible damage on the MRI is from T5-T7. “D” because I can walk, and don’t need a cane or anything. For comparison “B” would be in a wheelchair but with some sensation/control, and “E” is normal.
  • Walking ability: I was close to falling down a lot (and did once), but the Tizanidine I’m taking has gotten the spasticity under control so that I almost always feel pretty stable on even surfaces. Changing speed is challenging though as is looking around while walking, but both are improving. Otherwise my walking is mostly limited by endurance and how much pain I want to be in. I’m averaging about 4.5k steps a day this month. Typically, less than 5k steps I’ll be fine, and more than that I’ll be in pain later in the day or tomorrow.
  • Muscle control and gait: I have poor control over lots of muscles from my chest down, and it is not symmetric. Certain sides and certain muscles are very hard to activate. For example, my left hip is much harder to control than my right. This resulted in some odd walking problems where I’ve learned (over more than a decade) to balance using my left shoulder which is always really tight, and my right hip which is always sore. Was resulting in a slight limp. Also my ankles have very poor control. Manual manipulation by my PT and lots of focus on being able to activate particular muscles is slowly helping. I have a lot of habits to retrain.
  • Pain: My feet are always numb to some extent. As I get more tired it becomes a burning pain and eventually my legs start twitching which also hurts. Overall pain usually varies from 2 to 6. I haven’t not been in pain for over a year. I’m taking Gabapentin to reduce the nerve pain. Helps a lot, especially with falling asleep. Only take it at night because it was increasing my fatigue during the day though so often in more pain as the day goes on and the drugs wear off. Most of my pain doesn’t happen immediately, it kicks in a few hours after the activity, so it is very hard to have good feedback.
  • Fatigue: My fatigue is delayed by many hours and often builds up over the course of multiple days. This is not muscle fatigue, but more full body fatigue that I now think of as “central nervous system fatigue”. Coping with this is what led me to trying to track my fatigue and various symptoms daily so that I could know when I needed to back off before I ended up just laying on the couch unable to move for hours at a time. This used to happen a lot and at those times, even reading to my three year old was too much.
  • Balance: My balance is pretty bad. I can maybe stand on one foot for 10 seconds. When I have my knee braces on it is a bit better, but still pretty bad.
  • PT recovery: I have trouble recovering from any amount of physical therapy. Especially I think the balance exercises really increases my fatigue. I can do a day or two in a row of my 1.5 hrs of PT, but then I’m very exhausted and in pain for another day or two. Currently I’m getting about two PT sessions a week in, and I’d rather be doing four.
  • Standing: Took me a while to realize that just standing around talking with friends often ends up with a lot of ankle pain later on. I didn’t really understand this until just recently. I think it is a combination of my ankle muscles being weak and my balance being poor which makes me work my ankles more.
  • Running: I can run. Yay! Not far, but mostly because I am out of shape. It hurts at the time though, and it puts me in pain for a few days. The big problem with running is that it increases fatigue and then makes it harder to do my PT exercises. I really want to be running, but it takes so much out of me.
  • Sleep apnea: I was just diagnosed and haven’t really started my machine yet (tonight!), but this is the most exciting diagnosis I’ve ever had because it seems so likely to be solvable. It may also be at the root of a lot of fatigue and recovery problems. 20% of the population has sleep apnea, and a significantly higher percentage of folks with spinal cord injury do (which makes sense given that we have less control of our muscles). Given how easy the test was (basically just take home a device to wear at night) I feel like everyone should get tested.
  • Depression: Ya depression happens a lot. Most of the time it hasn’t been too bad, but sometimes it is completely debilitating. I haven’t started any anti-depressants yet. I’m hoping a lot of this is due to the sleep apnea and lack of sleep (and of course trying to adjust to having paraplegia).

I feel like I keep learning about my symptoms and my body, and I seem to learn something new every few weeks.

Docs, PTs, and Specialization

I am fortunate enough to live near Craig Hospital which is one of the top spinal cord rehab centers in the world. The difference between my docs/PTs at Kaiser (even the ones who know a lot about spinal cord injuries) and Craig has been night and day. I ended up also finding a PT near me who used to work at Craig to go to weekly as well.

Tools and Devices

I’ve been using a bunch of different technologies for tracking and walking.

  • DeRoyal Knee Braces: I’m using these all day long to prevent my knees from hyperextending backwards. Starting with these immediately doubled how far I could walk without ending up in pain. There is a pretty common refrain from folks using wheelchairs that their wheelchair gives them freedom and though my own paraplegia is nowhere near the same, putting on these knee braces gives me an incredible feeling of freedom. I’ve also been doing some of my own modifications to my braces to make them easier and work better for me.
    • Knee sleeves: I found that wearing the braces was causing me a bit of discomfort by the end of the day. Putting on some knee compression bands under them gets rid of that problem almost completely. At first I also tried using Rolyan Cotton Stockinette, but it starts falling apart after about a week so I would constantly need to be making new ones.
    • Marking with silver sharpie where on the straps I am velcroing the cross over straps so I don’t have to spend time trying to figure out how to adjust them each time. I started marking with just some tape and moved to sharpie once I was sure of the location. Simply writing a big L and R on the inside makes getting them on so much faster also.
    • I’m tying a small shoestring from the top flap to the plastic buckle loop to reduce how much the top strap slides down throughout the day. You can see this at the top of my right brace in the picture below.
    • I found that the straps that came with them were not quite the right length so I bought some shorter replacement straps (and then put tape over the logo).

2018-06-15 11.53.31.jpg

  • New Balance 990v4 Running Shoes: I ended up with New Balance running shoes in order to get better stability when walking. They also were wider than the shoes I had been wearing that makes them work better with my orthotics.
  • Orthotics: custom made by my PT at Craig. It was kinda like LEGOs for orthotics, pretty cool.
  • Polar H10 chest strap heart rate monitor: My watch also has a heart rate monitor, but to get good monitoring of heart rate variability (see below) you need a chest strap.
  • Apple Watch: I’m using a bunch of different apps for tracking and building habits. There are a lot of different watches out there, but the breadth of Apple Watch apps is what really helps me:
    • AutoSleep: My only complaint is that I feel like it could have told me six months ago that I should get a sleep apnea test. 🙂
    • Streaks: I’m big into habit building, and this is mostly what I use right now. It is always right in front of my face (on my watch), so lots of reminders throughout the day about what I am trying to work on.
    • Meditate: really nice meditation app that I can start from my watch and is not overly distracting.
    • Apple health for step and distance tracking (also swimming when I can). The HRV data from this is not accurate though.
  • Grip strength tester: I use this as a proxy for how tired my nervous system is (see below).
  • Ankle Stabilizer Brace: Just recently got these. I’m not wearing them all of the time, but if I know I may be standing around a lot or my ankles are in a lot of pain then I’m wearing these. I’m also thinking to try running, hiking, and biking in them to see how much that helps reduce pain. So many experiments…
  • Airex Balance Pad: I use this for a lot of my balance exercises. Makes balancing just a bit harder.
  • BOSU: I haven’t been using this for balance exercises as much recently because it is mostly too hard for me. Need to master things on the Airex first, but expect I will get back to using this too.
  • Other iPhone Apps:
    • Symple: I use this to track symptoms daily and throughout the day
    • EliteHRV: I use this with the chest strap above to measure my heart rate variability
    • YouAte: taking pictures of food
    • MetroTimer: a metronome to help retrain myself to take even steps.

PT Exercises

I’ve gone through a lot of different PT exercises and as I said I’ve worked with a number of different PTs. My current set is focused on getting the exercises really good and solid before moving on to the next set. That was probably one of the biggest mistakes early on with things like balance exercises, I didn’t really have them completely solid before I worked on making them harder.

I’m not going to describe all my exercises, but I will describe how I am rating my ability to do them:

  • Level – I abbreviate this to be something like L1, L2, L3. The levels are arbitrary and a bit dependent on the exercise. For balancing on one foot for 30 seconds for instance the levels are:
    • L1 – eyes open, looking at one point
    • L2 – looking around constantly
    • L3 – eyes closed
    • L4 – eyes on one point, but standing on my Airex
    • L5 – looking around constantly, but standing on my Airex
    • L6 – eyes closed, but standing on my Airex
  • Repetitions – for exercises where I am doing repetitions, this is how many I am doing. Squats for instance.
  • Ability (1, 2, or 3):
    • 1: means that I can’t do something non-stop. For 20 repetitions, I need to stop. For a balance exercise, I fall over.
    • 2: I can do it, but not easily. For balance this means my arms are waving around or that I feel I need to use my shoulders or other muscles I shouldn’t be using.
    • 3: It feels pretty good. Maybe not perfect enough to move on to the next level, but probably will be able to move on in a week or two.
  • Sometimes color coding also – yellow, none, green. Currently I am only using this for balance exercises to indicate whether I am wearing my knee braces and shoes or not.

Ability to do PT exercises doesn’t change very often, so I only record these once a week, and I’m really only looking for improvements over the course of 3-4 weeks at a time. Having some metrics to use and slowly seeing improvement helps with a feeling of having some accomplishment. It will probably also tell me when I have maxed out what I will be able to improve.

Here are 6 weeks of recent tracking.


Daily Fatigue Tracking

I’ve experimented with a number of methods for daily tracking of my fatigue so I would know when to take it easy. I print out spreadsheets for this and tape them to the wall so I can fill them out during the day, and then every week or two transfer it to a spreadsheet on my computer. Here is what I am currently tracking and why:

  • Resting heart rate. Usually goes up above 57 when I am more tired or sick.
  • Hours of sleep (from AutoSleep): varies a lot. Below 4 is bad.
  • Hours of deep sleep (from AutoSleep): if I am not getting deep sleep then my body is not entering the sleep stage where my muscles actually recover
  • Grip Strength: This is used by some elite athletes to track “Central Nervous System Fatigue”. Not great scientific evidence, but for me I find that when my score is low (below 47) then I need to back way off.
  • Heel Raise. 5 point scale: 1 – can’t do it, 2 – very hard, 3 – doable, 4 – have a little bounce, 5 – ready and raring to go
  • Pain on the usual 1-10 scale. At 5 the pain is pretty hard to ignore. If I wake up already at 4, then it is going to be a rough day because my pain almost always increases. This is tricky though because sometimes the pain is due to things unrelated to walking, mostly bowels (that’s a different post).
  • Heart Rate Variability: from the EliteHRV app. Below 47 is usually not very good.
  • Steps (at the end of the day): In general more steps puts me in more pain.
  • Some things I just track in notes, and then summarize later:
    • Fatigue (Y/N)
    • Bad (Y/N)
    • Autonomic Dysreflexia (Y/N) – for me this is triggered by bowel problems

Most of these I record in the morning, except grip strength, pain, and hell raise I do both morning and night. No single metric is enough to say that I am fatigued, but they do give me a sense of whether I need to back off or not. I also track whether I did any PT, walking, running, and notes about my day.

Some recent data:


I’m a pretty big fan of conditional formatting in a spreadsheet to pull out patterns.

Monthly Fatigue/Sensation Tracking

Because my spinal damage is non-traumatic it is possible that it hasn’t fully been fixed and unfortunately the only way to know is if my symptoms start getting worse (at which point they probably won’t get better). So I am doing a bunch of monthly tracking to see if I can find any signals that would indicate that things are getting worse. Most of these are based off of various standard medical questionnaires.

  • Fatigue: I am using the Modified Fatigue Impact Scale (MFIS).
  • Depression: I am also using the PHQ-9 for tracking depression.
  • Sensation changes: I have print outs of the ASIA scale that I am trying to self rate myself with. I basically use a pen cap (perfectly calibrated of course) to poke and rub parts of my body and recored where I am extra sensitive (X), triggers twitching (T), no sensation (O), and numbness (N). Especially looking for differences between each side and changes

I’m also tracking a bunch of bowel and bladder data from month to month, but I’ll leave that for a separate post since I could probably write 3,000 words on that topic too.

Your Turn

OK, so there is everything I am tracking around sensation and movement so far. I’d be really interested in anything others have found useful. This is already a lot, but since I keep learning new things, I assume there is a lot more to think about that I am missing.