The focus of today’s post will be physical therapy at the Kunming Walking Program. I’ll approach this challenging subject from two perspectives:

1. Western vs. Chinese physical therapy practices
2. My personal physical therapy experience here in Kunming

Contrasting Physical Therapy Systems

In Western Europe and North America, movement of patient limbs is typically done very slowly, the thinking being that one does not want to move joints, ligaments or muscles too quickly to avoid risk of further injury.

However, here in China the philosophy appears to involve moving limbs very quickly with sharp bursts of motion, whether stretching, massage, or weightlifting. The best explanation for this I have been able to get from the physical therapists here is that they were taught this technique in school, and they think that the faster you move the body the more blood flow rises to the surface resulting in keeping the muscles warm and perhaps faster healing.

While I can understand why with certain massage techniques there might be benefit to improving circulation throughout the body, it has been hard for me to grasp the therapeutic value of repeated abrupt movements.

Anyway, I have taught my assigned physical therapist to stretch me very slowly, but it does concern me to look over toward other patients and see their paralyzed legs being violently thrown forward and backward.

Interestingly, compared to Western countries, the Chinese do not place as much emphasis on upper body weight training. With the few surviving innervated muscles we have, paraplegic and quadriplegics need to maintain upper body strength through weight training. I’m the only patient who has a daily stationary upper body weight routine in my chair.

When I do see other patients pick up the weights, they usually just fling them around in the air and have no idea what they’re doing. While the physical therapists do sometimes come over to try to help them, it is clear that there’s not much understanding here of what is really involved in weight training.

I have learned that the field of physical therapy is a relatively new area of study in China, and students attend newly-commissioned physical therapy schools where there is no real specialization in spinal cord injury. Presently there are 8 full-time therapists working in the Tongren SCI program, and throughout the year we get physical therapy students coming in for an internship for several months at a time. I don’t think many of these students have previously worked with anybody in a wheelchair, let alone understand which muscle groups are not functional when a person suffers a spinal cord injury.

To give you an example, a few months ago several of the physical therapy interns were asking about different muscle groups, and a couple of the most experienced physical therapists had trouble answering these interns’ questions. Honestly, I found this pretty astonishing, since some of the therapists have been with the program for over 10 years. I’m not quite sure they understand the concept of motor function recovery vs. adaptive behavior, basic anatomy or how different muscles are innervated.

My Kunming Experience

As many of my regular readers know, I have been unable to actually participate in the Kunming Walking Program – basically for two reasons. The first is that my leg was broken last summer and never healed correctly. The other is that peripheral nerve damage that resulted from spinal cord surgery last May has still not healed, causing me such severe pain I am unable to support myself in the walking frame. Today I’ll focus only on the broken leg, as that had to do with a physical therapy accident.

Because an SCI patient is mainly confined to a wheelchair, there is already a 60% to 80% increased chance of developing osteoporosis. This is because when you do not stand, you obviously do not bear your own weight, so standing helps prevent osteoporosis by strengthening bones and muscles.

When you are paralyzed and confined to a wheelchair, you do have the option of standing in a supportive frame or a special kind of standing wheelchair. However, in general many SCI patients do not stand, and if they do it is usually only for about an hour a day several times a week.

With the above mind, patients who join the Kunming Walking Program typically have brittle bones to begin with, so when one starts standing or assisted walking the risk of a slight fracture, break or strain are higher than one might think.

When I broke my leg, this might have been due to brittle bones.   However, I had been standing 4-5 days a week for an hour a day for the last 2 1/2 years before moving to Kunming. My point is that accidents do happen. But the pain challenges and frustration I ran into after the injury were largely unnecessary.

The local physical therapy team decided to start me in the walking program only a month after my May 2013 surgery … that is, in the beginning of June 2013.

Initially, I was okay standing stationary, but as the attending therapists pushed my legs forward, suddenly I started to feel very dysreflexic, and I began to sweat on the left side of my neck. As I discussed in earlier posts, dysreflexia is a condition suffered by SCI patients, which basically is your body’s frustrated response to pain when you do not have normal sensory feedback to your brain.

For example, if an able-bodied person broke a leg, that person would feel severe local pain at the site of the injury. In an SCI patient like me, I do not feel pain in my legs, but my injured leg sends garbled signals to my brain, which translates this input into different symptoms for every SCI patient. In my case, neuropathic pain goes skyrocketing, I sweat profusely only on the left side of my neck and my blood pressure rockets up to near-stroke levels.

So, after a few steps of forced “walking” I knew something was seriously wrong, and I asked to sit down immediately. By nightfall, my right knee was seriously swollen. I figured my body had simply not adjusted to the walking program and that I might’ve pulled a ligament or twisted a muscle.

The next day my leg was even worse, and I told the physical therapists that I wanted to get an MRI of my knee to see what was going on, never suspecting for a moment that my leg has actually been broken!

When the MRI came back, I had a meeting with the top physical therapists and program leaders here to discuss the situation, only to have them assure me there was nothing to worry about. I asked them what would have caused the swelling, and they said I most likely just had fluid buildup in my knee because I was not used to standing and walking. At the very end of the meeting, they did mention that they noticed an “old fracture” in my knee but asserted in the same breath this had occurred several years ago.

Initially I was very confused, because if I had previously broken my leg I’m sure I would’ve remembered a severe dysreflexia reaction and lots of other complications. Anyway, weeks passed but the severe dysreflexia and neuropathic pain responses did not abate. Every time I bent my knee, I started sweating profusely, crying, and was just generally a pretty miserable person. No one at Tongren was not quite sure what was going on.

After about a month of this, I’d had enough of the excruciating pain and lying in bed days at a time. And when my caregivers picked up my heel of the right leg, it bowed backward from the knee as if made of rubber!

(Picture of Bowed Leg)

An Independent Second Opinion

So I decided to send my MRI + subsequent X-ray images to several top orthopedic surgeons in the United States to get a second opinion.

To my astonishment, highly-confident and unqualified second opinions from top orthopedic surgeons were that I had very recently suffered a fracture of both my tibia (shinbone) and of my femur (the major upper leg bone) the two biggest bones in my body!

They asked what had been done to set the bones … what kind of cast had been fitted. I replied that no cast had been fitted!

The U.S. surgeons suggested I take another MRI about eight weeks after my leg had been broken, but they told me that unfortunately, there was nothing I could do at this point. The corrective 6-week window was closed. My leg had healed in a permanently deformed and weakened position.

These surgeons did advise that the leg could be re-broken and reset, but with the pain I went through this idea was a non-starter with me. Instead, at their suggestion, I ordered a very well designed knee brace from Germany, which I now use on a regular basis whenever I stand.

Summing up the broken leg fiasco, I would say any patient participating in the Kunming Walking Program risks some level of injury … simply straining a ligament more likely than breaking a leg. But most patients do not experience serious injuries, so far as I can see.

The challenge I had, and continue to have, is that when I did finally offer proof that my leg had actually been broken very recently during the walking program, this conclusion was met with complete denial and still is to this day! They still claim to think my leg was broken several years ago, despite all the orthopedic evidence to the contrary.

😦

A Cautionary Tale

The reason I have gone into so much detail about this whole broken leg fiasco is because I think it is directly related to physical therapy practice here in Kunming. For reference, I worked for a couple years with several top-notch physical therapists in Miami and am myself knowledgeable about anatomy and physical therapy. So, in my frank opinion, a properly trained physical therapist should have easily been able to identify a problem as serious as a broken leg!

My experience here in China is therefore a cautionary tale about physical therapy technique and safety. On the other hand, the Kunming Walking Program does offer a robust, 6-day rehab work-out for those fortunate enough not to have any mishaps in the beginning.

The physical act of standing and assisted walking provides 100% weight bearing, improves balance, especially for paraplegics, and is an overall general great form of exercise for somebody in a wheelchair. On the other hand, as I discussed at considerable length in my previous blog post, the benefit of the actual walking with respect to motor function is, in my view, no more than speculation.

The last point I want to make today is that I still have not observed any direct evidence that walking is preferred over simply standing. Weight-bearing is weight-bearing. Both activities allow you to bear weight for long periods of time, which is beneficial for every SCI patient.

In my next post I will dive into the world of spinal surgery here in Kunming.

I have participated in the Kunming SCI Program at Tongren Hospital for a little over one year now, and regular readers have asked me to review my experience here, as other international families are considering coming to Kunming for the SCI program.

This seems a reasonable request, and maybe even overdue on my part.

So here goes.

I’ve decided to offer a multi-segment blog review over the next few weeks, covering my own experience with topics ranging from the physical therapy program to potential for motor function recovery, to pain management and finally spinal cord surgery available here in Kunming.

I have been hesitant to sum up my experience in Kunming until I had a full year under my belt, but today I feel I can speak effectively to the pros and cons of the program.

First An Important Disclaimer

Before getting started with my review, I would like to emphasize strongly to those thinking about attending the Kunming program what many of you may already know:

Spinal cord injuries are vascular in nature, and therefore every injury is unique. This makes it especially challenging to generalize about what you might or might not gain from participating in any rehab program anywhere in the world.

When you break your back (or in my case, my neck) the damage to spinal cord neurons occurs from inflammation inside and around the spinal cord that kills off many neurons. This internal bruising chokes off nutrients to the spinal neurons, as a result of which many die. But unlike with the Peripheral Nervous System, these Central Nervous System neurons cannot grow back, as a result of which signal transmission up and down the spinal cord is seriously disrupted.

You might want to think of spinal cord injury as leaving survivors with a permanent internal bruise (actually scar tissue) that can have occurred in a 360 arc around the cord and running higher or lower that the named broken vertebra.

The bottom line simply is that no two spinal cord injuries are alike, and therefore how many neurons + their associated axons survive the injury is unique to each individual. That’s fundamentally what makes generalization about any physical therapy program or even subsequent spinal surgery so tricky to express in a helpful way.

Okay … So What’s Going on in Kunming?

I receive e-mails every week from SCI patients around the world, each asking pretty much the same question:

“Are you or the other patients in Kunming gaining strength and improved function?”

This is a particularly tricky question to answer, but I am going to tackle it head-on, as I have developed clear views on the underlying issue here.

Adaptive Behavior vs. Motor Function Recovery

A spinal cord injury survivor generally spends 1-to-3 months in hospital + a local rehab center, using either a back brace or some form of a neck brace. As a result, during the first few months after an accident many SCI patients are mostly bedbound.

Other than some light stretching, most SCI survivors do not initially engage in intensive rehabilitation, allowing time for their spinal fusion surgery to heal.

When your body remains immobile, you lose approximately 7-10% of your muscle mass per week according to the NIH.  Have you ever heard the saying that it takes about six weeks to lose muscle memory and muscle mass? Well, this is what happens when you’re laid up in bed for 6 to 12 weeks. You lose most of your muscle mass.

When the typical SCI patient begins intensive rehabilitation, he or she has already lost much of their muscle mass, even in the muscles that are not paralyzed. And these atrophied muscles can be very deceiving, because they mask themselves as paralyzed after not having done any real work for so many months.

 
Therefore, when you start SCI rehabilitation, it can be very hard to determine whether a muscle is actually paralyzed … that is, whether there is loss of motor function or just simply muscle atrophy from lack of exercise.

Consequently, after intensive physical therapy begins and has progressed a few months, experienced clinicians and patients alike regularly confuse what is known as “adaptive behavior” with real motor function recovery.

And, indeed, it’s often hard to tell what’s going on, as the patient gets stronger and stronger and still-working muscles take on new assignments … like how I can today raise my arms over my head with no triceps!

Here’s an example:

I am a so-called “C6 complete” quadriplegic. This means I am paralyzed from the chest down, my triceps are paralyzed and my hands are paralyzed. I also have no feeling below the level of my chest. However, the muscles on the front of my arms including my shoulders, biceps, forearms and scapula muscles on my back are fully functioning.

I was laid up in the ICU in Miami for about four weeks before I was sent down to the rehabilitation center to start my rehab.

When I first arrived in rehab I could barely lift my arms up at all, which I’m fully capable of doing today. As the weeks went by, I started slowly lifting weights and doing various training exercises, and my arms started to get stronger above my level of injury.

Remember, everything below my level of injury (anything from my chest down, including triceps and hands) did not regain motor function. However, I was getting stronger and stronger and was able to shift my body on my own when I was on the mat, and I began to lift heavier and heavier weights.

This is where it becomes very easy to confuse adaptive behavior with motor function recovery. As I was gaining strength in my muscles that were not paralyzed and building muscle tone, I was also learning to adapt these muscles for practical functions they’d never handled before — like picking up my phone by twisting my wrist or lifting my arms over my head.

To a casual onlooker, it appeared as though I was starting to recover hand function, but really I just learned how to manipulate the muscles that were not paralyzed to perform new and useful functions.

After a year in Miami working out regularly 4 to 6 times a week for several hours a day, my muscles that were not paralyzed were again in tip-top shape.

However, I did NOT actually regain any motor function below my level of injury. It just looked that way.

Essentially, no muscles started firing in my hands or my stomach or my legs. This is very typical of a so-called “complete” injury, and many people do not recover any motor function below the level of injury. If you are a labeled “incomplete,” and there are more surviving axon tracks in your spinal cord, then the likelihood of improving and reconnecting workable nerve-muscle relationships is greater.

The Complete vs. Incomplete Game

A note of caution with the terms “complete” and “incomplete” —

Most doctors strike me as throwing around the term “complete” in an almost judgmental way and do their patients a consequent disservice.

So I want to make clear my view that the term “complete” does not mean what it seems to mean – as in, end-of-the-road.

Unless your spinal cord has been sliced right through by a knife or gunshot wound (in which case you’re not likely to have survived) there are surviving connections even to your lower most limbs … just not enough to get local muscles to recruit and do useful work.

Surprised to learn this?

Well, researcher Christa Moss, working in Dr. Hunter Peckham’s lab in the Department of Biomedical Engineering at world-class Case Western Reserve University in Cleveland, undertook in 2011 a study of 12 long-term “ASIA A Complete” quadriplegics and here’s what she discovered:

http://www.ncbi.nlm.nih.gov/pubmed/21693772

This discovery has potentially a lot to do with each chronic SCI patient’s potential for eventual recovery.

Right … so coming back to adaptive behavior and motor function recovery.

What I’ve Observed in Kunming

When we were researching the Kunming SCI Program back in 2012, the program’s founder and leader, Dr. Zhu Hui, explained to us that compelling the body to support itself vertically, bearing 100% of body weight, induces the brain to force new neural connections as well as to wake up dormant connections to ‘speak’ to the body’s core and eventually also to the limbs.

While this theory may have merit, I have not personally observed this to work out in practice — either for myself or for other patients I’ve met over the past year.

Nonetheless, the Kunming program offers patients the opportunity to “walk” several hours a day at least five days week, which can definitely improve adaptive behavior and even potentially improve their chances of motor function recovery from surviving axon tracks.

From my personal experience, I believe adaptive behavior is still frequently confused with motor function recovery. Many of the patients who have joined this program in the past year have been injured from several months to several years, during which time many of them have never engaged in structured rehabilitation or even meaningful exercise of any kind.

So, when new patients enroll in the program here in Kunming, many of them are de-conditioned and very weak. But after just several weeks one can notice great improvement in their balance, ability to use their upper body, etc.

I have observed closely many SCI patients here in Kunming over the course of the past year, and as I speak Chinese I’ve interviewed them as well.

Today I feel confident in reporting that the Kunming program is inexpensive compared to many Western rehabilitation programs, and a SCI survivor can work out several hours a day to get strong again as well as to stay healthy and fit.

However, apparent improvements in motor function appear to me to be for the most part attributable to adaptive behavior, especially for chronic SCI patients.

Working out daily alongside dozens of the “complete” quadriplegic and paraplegic patients over the last year, I have NOT observed improvement in motor function in chronic SCI patients. This is not to say that SCI motor function recovery is not possible, but just that I have not observed this outcome.

Better Outcomes for Acute Patients

On the other hand, I have observed several “acute” SCI patients (with so-called incomplete injuries from one month to one year old) gain meaningful motor function recovery. As I said earlier, every patient is unique, and the outcome depends on a combination of how many axon tracks survived the injury and how hard the patient works at rehab.

Being “incomplete” and only recently injured makes a big difference in the outcomes here in Kunming, as it does anywhere else in the world.

Further, I have noticed that the program here seems to benefit chronic paraplegic patients slightly more than quadriplegics patients. Paraplegics are able to hold themselves up on the Kunming walking frame and really work on improving their adaptive behavior and balance. It is a little more challenging for quadriplegics with no upper body strength, because we cannot hold ourselves safely up in the Kunming walker without substantial assistance.

Summing Up

Summing up this first installment on my Kunming experience … I recommend the Kunming SCI Program as a general all-around SCI rehab program for many SCI patients because it is really hard to find an affordable, dedicated SCI rehab program in the North America or Europe where one can work out vigorously in a dedicated facility multiple hours a day up to six days a week for months on end.

With respect to attending the Kunming program to regain motor function, from my observations I cannot in good faith encourage fellow SCI survivors to come here with high expectations for motor function recovery.
That being said, perhaps some combination of an as-yet-unproven regenerative medicine therapy combined with rigorous Kunming-style rehabilitation may turn out to be the ideal combination for meaningful motor function improvement.

In my next blog post, I will dive into the topic of actual physical therapy practices at Tongren Hospital as well as the difference between in physical therapy in China versus in Western countries.

The last few weeks have been pretty much nonstop, the highlight of which has been a treasured visit from our dear friend Ted Hearne, who took three days out of his week-long Asian business trip to come see Dad and me in Kunming.

With Ted at Kunming Intercontinental

In recent years, and especially since I broke my neck, Ted has been such an inspiration and mentor to me. This past week we spent several days in conversation ranging from Drummond Geometry technical trading to hypnosis to meditation … and even to how the ancient Chinese “I Ching” and “Tao De Ching” might help me get a better handle on my persistent, severe pain levels.

Ted + Dad on Kunming Walking Tour

Working With Ted at Home

Spending several days in the company of Ted Hearne and my Dad was like sitting through multiple days of the most fascinating college lectures. Getting the two of them together somehow made me feel smarter by the end of Ted’s visit.

Discussing the I Ching

Garden Lunch for Ted at Home

 

Party Time for Suzanne

The following weekend we also celebrated Suzanne Edwards’ 27th birthday with a fabulous Chinese brunch at the Intercontinental hotel. The wonderful thing about this hotel is that it is completely handicap friendly, has gorgeous gardens and lovely restaurants to choose from. I have to say I did play hooky for a few days over the last two weeks … well worth it!

Suzanne’s Birthday Cheesecake!

 

On Wednesday afternoon my mother finally arrived back from the United States after an eight week trip to Miami and The Bahamas as well as to Atlanta, where my brothers and their families live.

While Mom was away I decided to take up the challenge of becoming a gourmet chef for my gluten-free, sugar-free, vegetarian Dad.

🙂

I worked out how to create menus, and then I would verbally direct my adorable Kunming caregivers on how to cook all kinds of dishes they’d never heard of before, never mind actually tasted, so they had no frame of reference.

Together we prepared a crustless (no wheat) quiche, quinoa stir fries, Italian buckwheat pasta with Parmesan cheese, homemade hummus, homemade guacamole, etc.

Salmon + Quinoa

Buckwheat Noodles + Parmesan

Dad’s All-in Veggie Salad

Every night and day it was a new dish. I feel like it would be fun to create a cookbook called “Quad Friendly Cooking.” I always knew I was able to cook, but for most of my life I pretty much convinced myself I couldn’t cook, perhaps because other people were too willing to cook for me!

Anyway, I’m off the culinary hook for a little while now until my mother heads back to the United States or Dad goes on his next pain research trip.

I have to say it was kind of fun trying to translate how to make and bake a crustless quiche with my caregivers, who before meeting us had no experience with foreign foods, let alone having the slightest idea how to cook anything non-Chinese.

Oh, and let’s not forget having to direct all this in both Mandarin and the local Kunming dialect … what fun!

For example, Xiao-Lin and Xiao-Yin had never heard of cranberries, so we had to go in the dictionary and agree upon the word we would both understand for the use of cranberries. When we were cooking I would I maneuver my chair in such a way that I could get up close to the stove and sometimes actually cook with one hand myself.

Funny thing is … seems after injury most quadriplegic people want to learn to put on their clothes, their makeup, learn to cook, etc.  But I spent the last three years trying to get proficient at using my computer and working to develop my powers of concentration and focus on trading … so now I’m taking some new steps to become a slightly more domesticated quad. 🙂

 

On the Pain Front …

Well, unfortunately not too much good news yet on this score.  None at all, in fact.

The hyperbaric chamber protocol is still on my mind, but we are getting mixed signals on what protocol would actually be safe.

On a separate note, by the end of this month my Dad will headed back to the Netherlands and then to the United States on another major tour focused exclusively on pain.

This time he’ll also be visiting with Ted Hearne in Chicago to interview highly experienced hypnotherapists who might work with me. I am still wholly convinced that the only way my pain is can be reduced on a sustained basis without debilitating drugs is through reprogramming my brain!

Meanwhile, at Ted’s urging, I’ve taken up in earnest the “I Ching” … even finding a website — http://www.random.org – that can flip three coins at once for me!

On a completely separate note … I managed to accidentally poison myself again the other night. The evening started out, as many do, with my having a splitting headache, and my neck surgical injury was just killing me.

So I asked one of my caregivers to please hand me three white pills from a white bottle … to take the edge off meaning to ask for just ibuprophen, with which both the girls are familiar.

For some unknown reason, I had an orange bottle with white pills next to the ibuprofen as well. This bottle contained 50 mg tablets of the heavy-duty painkiller Tramadol. You pretty much take Tramadol after surgery for severe acute pain, not neuropathic pain. I’m not sure why I did not have the bottle in the painkiller medicine cabinet, as is our custom, but I didn’t.

Anyway, Xiao-Yin mistakenly grabbed three Tramadol … OMG!

Yes, 150 mg of Tramadol instead of 600 mg of ibuprofen.

This was on Friday night. About an hour and a half after taking the pills I started to feel extremely nauseous, very dizzy, slurring my words, and I couldn’t figure out what the hell was going on.

Struggling to focus, I looked over to my medicine table and realized what must’ve happened. As for my caregiver, it was not her fault because everything was in English, but I just lay back down on the bed shouted out to myself “You idiot, you are in for one hell of a ride tonight!”

My problem with conventional painkillers is that I become extremely nauseous, and Tramadol is a strong synthetic opiate that I would take only on those nights when the pain is so exceedingly severe that sleep is impossible.

To sum it all up, it has taken about 24 hours to get this stuff out of my system, which pretty much put me out of commission the entire day on Saturday, gazing blankly at my computer screen as if I was a 16-year-old who had just smoked marijuana for the first time. 🙂

So now I have managed to poison myself twice in 2014 — first with lithium carbonate and now a second time with Tramadol. At least this time the effects were gone within 24 hours, and I have no one to blame but myself!