Monthly Archives: April 2013

Introduction to My Chinese Physical Therapists + Vampire Pop Culture!

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After the last two detail-heavy posts on my surgery, I thought it might be good to lighten up a bit and introduce you to my physical therapy staff, fun people with whom  I will be spending much of my life over the next two years.

The entire Kunming Walking Programme nursing and physical therapy staff is amazingly hard-working and enthusiastic in their dedication to patients … and I’ve discovered they also seem to have a great sense of humor.

As discussed in one of my earlier posts, there is a certain routine that I perform each day, which includes five different exercises along with standing upright while bearing my full weight.

Once I have completed my surgery, I will also start to practice walking down the hallways, but for now I am just conditioning my body to standing up in the standing frame with the help of three therapists.  I stand for two 30 minute sessions each morning.

While I’m standing, I’m looking out from the seventh story of Tongren Hospital onto the beautiful mountains of Yunnan Province (actually these are Himalayan foothills) and out onto Kunming’s rapidly expanding skyline.

Most days I chat with my therapists to learn new vocabulary and more generally to improve my Chinese. Yesterday, our conversation took an entirely wacky but hilarious turn.  One of the therapists began by asking me if I thought a famous actor was sexy or not. I could not understand the translated name, so she typed it out on her phone, and it turned out to be Rob Patterson!  I started laughing so hard that I swung my right hip out to one side and very nearly fell out of the standing frame.

For those (hopefully most) of you who are unfamiliar with Rob Paterson, he’s the lead actor in the “Twilight” series of teeny-bopper vampire movies

My therapists continued on with the conversation about how good-looking this guy is, constantly bringing up pictures of him to show the entire exercise room. Even the male physical therapists decided he was quite a good-looking guy  🙂

The conversation then took another turn in which the therapists took turns naming all the American vampire movies they loved.  I had no idea how obsessed my entire PT staff is with vampires!  🙂

I then started laughing so hard again that blood from my head rushed to my feet, my blood pressure fell quickly, and I had to sit down and have my legs lifted into the air in order for me to regain consciousness. Yes, I literally passed out laughing at the staff’s enthusiasm for American vampire flicks.  Now, mind you, I have passed out from laughing before, but it was at a comedy club in Miami after quite a few glasses of champagne … here it seems I come to work in a comedy club!

Otherwise, I have a quick side story to share with you about costs in the Chinese healthcare system vs. in the United States.

Last week my Mom was rushed to the emergency room with tingling feet and hands and difficulty breathing, eventually to discover that her potassium levels had fallen dangerously low.  Before the Chinese doctors worked this out, they put her through a full EKG, a CT scan as well as an MRI and ran her blood panels and urine panels … finally putting her on an IV drip to boost her potassium.

Now, from experience in Miami, I’d estimate all this high-tech service and lab work would cost at least $5000.  Well, over here we just got the bill for my mother’s stay in the emergency room + all these services.   The total cost turned out to be the RMB equivalent of $250.

Seriously, what?   Yep, that was the cost in a brand new, private Chinese hospital.  No wonder medical tourism is taking off all over the world.   Private hospital rooms here with en suite toilet and shower still go for the equivalent of $14 a day.

All right, I will steer this post back to my therapists and offer you a brief introduction to key members of the team.  You can match the names to the pictures below.

Shen Jie is the head physical therapist and had worked in the spinal cord injury field for the last 13 years with Dr. Zhu Hui over at the Kunming Peoples Liberation Army Hospital.  When Dr. Zhu retired from the PLA last year and joined the new private Kunming Tongren Hospital, she took Shen Jie with her.

Shen Jie is a true fountain of sunshine and always smiling. You can tell she really loves her job, but she is also very focused … not a broad to be messed with!

Niu Feng is the second in command to Shen Jie and is also from the People’s Liberation Army Hospital. She has been working with spinal cord injury patients for the last eight years. Niu Feng has a great sense of humor and was the one who started the vampire conversation.

When new patients start standing balance training, someone has to be sitting on the little box stool in front to hold the knees and feet straight, which prevents knees buckling and a bad fall.  Niu Fang alternates with Shen Jie in this particularly uncomfortable task, but neither one ever complains.  They just perform with a smile whatever needs to be done.

Xiao Kong is one of the newer physical therapists who graduated from a local PT school about two years ago. He is small, but he is very capable.

I had a conversation with Dr. Zhu Hui a few weeks ago about assigning one physical therapist to work with me consistently every day so I can teach the team how to handle me properly. I was trying to make the point that when more international patients enroll in rehabilitation here, the program may need to offer more personalized care, because every patient has different needs. So Dr. Zhu assigned Xiao Kong to me personally for the next few months until she hires additional physical therapists, and so the idea is that Xiao Kong will teach the others.

I have taught Xiao Kong how to transfer me safely using a transfer board, which in the past they have not used in China because most of the Chinese are under 120 pounds … J.  He’s my new buddy, goes wherever I go, and he is funny as hell. I am quickly learning how to understand jokes in Chinese.

Xiao Mai is the other male physical therapist who has been with the program for about one year. He is a little bigger and stronger than Xiao Kong, so he spends most of his time in the hallways with patients helping them walk with the standing frames.  He is a little bit more quiet, but always very helpful.

These are the 4 main physical therapists with whom I work every day.  Other new therapists have just been hired, but I do not know them well enough yet. There’s also the entire nursing staff to get to know, as many of them also help out with the Walking Programme when there are too many patients. I will save introduction of the nurses for another blog post.

Finally, I wanted to end by commenting on how hard the Chinese work.  Next week, for example, there is a three-day holiday … there seems to be a holiday for almost everything here.  Anyway, the Chinese have to make up these holiday days-off by working the weekend before or after every holiday!

So, next week the Chinese get Monday- Wednesday off, but they have to work the weekend before and after.  It’s sort of a funny arrangement, because they actually don’t get any more days off for the holiday, rather essentially they just end up re-arranging their weekends.

Try to imagine the comparable situation in the U.S.  If we were in Miami, there would be a full-on riot if people were expected to make up legal holidays by making up the lost time on the prior and subsequent weekend!

So the lesson is that it really pays to keep an open mind about cultural differences and to go with the local flow … “when in Rome … “ 🙂

NuJiu & Shenjie

NuJiu & Shenjie

Taking a nap on Xiao Kong while Niufang is hard at work down below preventing me from falling while standing :-)

Taking a nap on Xiao Kong while Niufang is hard at work down below preventing me from falling while standing 🙂

From the left: Xiao Mai, Shenjie, Xiao Kong, Niufang, (New PT 3rd day on the job, Xiao Liu)

From the left: Xiao Mai, Shenjie, Xiao Kong, Niufang, (New PT 3rd day on the job, Xiao Liu)

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Niu Fang awaiting her next patient

Shenjie ... This picture was very hard to take because she always refused to take a picture. Most of the women in the hospital do not like to have their picture taken because they always tell me they did not have their makeup on, their hair was not pretty that day or had a bad "looking day." Women! :-)

Shenjie … This picture was very hard to take because she always refused to take a picture. Most of the women in the hospital do not like to have their picture taken because they always tell me they did not have their makeup on, their hair was not pretty that day or had a bad “looking day.” Women! 🙂

ShenJie and me riding the bike. Yes, the Peacesign is a universal Chinese thing when taking pictures!

ShenJie and me riding the bike. Yes, the Peacesign is a universal Chinese thing when taking pictures!

Part 2: Details about upcoming Spinal Surgery

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Cervical Vertebrae

Cervical Vertebrae

I’ll do my best to describe my upcoming surgery — finally now scheduled for May 14th.  I hope the illustration here helps a little, as this is pretty complicated to describe without a visual.  In fact, in my Dad’s meeting with our Kunming neurosurgical team and core advisers last week, he had the benefit an actual skeleton that enables a 3-D understanding of the surgical procedure.

Anyway, the objective here is to reach the fluid-filled cyst on the anterior (front) side of my spinal cord in order to cut it open and drain the fluid, thereby decompressing my spinal cord.

My 2010 spinal fusion involved screwing a metal plate between the C-5 vertebra and C-7 vertebra, because my C-6 vertebra burst in the diving accident.  Therefore, access to my anterior cyst is blocked on the ventral (front) side of my spinal column due to the metal plate being in the way.  So Dr. Liu will have to access the cyst from the back side – “dorsal entry.”

To gain access to my spinal cord, the surgeon needs to create as wide an opening as possible.  This surgical procedure is referred to as a “laminectomy” because it involves removal of as much as possible of the lamina (bone) on both sides.  However, because a major artery passes through the articular process on either side of the lamina, there’s a limit to how far the surgeon can go – roughly indicated by the angled green lines shown above.

And executing this triple laminectomy is just the “easy part” … 🙂

Next, the chief neurosurgeon, Dr. Liu Yansheng, will have to decide whether to approach the cyst by making his way to the left or right around my spinal cord.  Once a path has been decided, he will have to cut open the Dura mater and then cut ligaments that hold the spinal cord centered, pushing aside my spinal cord very, very gently as he goes.  I hope the following illustration gives you some idea of what’s involved here.

Vertebra Cross Section

Vertebra Cross Section

Now comes the super tricky bit … absolutely no room for error or I’m toast.

Once Dr. Liu has worked his way round to the cyst, which is now relatively much larger than illustrated here, occupying about half my spinal canal, he cannot simply remove it because of the risk of tearing the Pia mater that encloses what remains of my spinal cord.  So he’ll have to cut the cyst longitudinally, sort of like slitting a balloon so it can never again hold water.

Along the way, Dr. Liu will also scrape away and remove scar tissue from my original injury, thereby “untethering” my spinal cord and restoring CSF (“Cerebral Spinal Fluid”) circulation.

Dr. Xu Xiao-Ming, Professor of Neurological Surgery at Indiana University, expresses the strategic surgical concept as follows:  “The key goal here is restoration of spinal morphology.”

Put another way, the goal is to restore my spinal cord as close as possible to its original design and orientation within the spinal canal.  That means my spinal cord will no longer be compressed by the large cyst nor will it be tethered by strands of scar tissue left behind from my original spinal fusion surgery.   Instead, my spinal cord will be floating free again with full CSF circulation — free once again, as Dr. Zhu Hui expresses it more poetically,  to “dance” with the rhythms of my heartbeat and breathing.  🙂

Restoration of free CSF circulation, being no longer impeded by either scar tissue tethering or cyst, together with spinal cord de-compression by draining of the large cyst … these advances are both believed to be critical to achieving the optimal results from the Kunming Walking Programme.  But at this point, frankly, I’d settle simply for cessation of the persistent severe neuropathic pain that makes it pretty much impossible for me to focus on anything else.

Now, of course, cutting away so much bone critically weakens the spine, and in my case the surgeon will have cut away altogether significant parts of three vertebrae … C-5 through C-7.

So once this access “door” has been cut open, there’s an obvious need to build a frame around the opening to reinforce the spine.  This requires the installation of titanium rods and screws – two vertical rods and one horizontal rod to provide lateral rigidity, held in place by six screws.

After the cyst has been cut and tethering scar tissue removed, the Dura mater is sutured back together, and then the titanium rods and screws are installed.  Then my neck muscles will be pulled back over the titanium framework, and finally they’ll suture my skin back in place.

Two or perhaps three days in intensive care are followed by two weeks of bed rest.  After about 15 days, I will be expected to rejoin the Kunming Walking Programme!

My great new friend, Nu Jia, from Guangzhou, underwent pretty much identical surgery with Dr. Liu on February 18, 2012, and she was actively enrolled in Dr. Zhu Hui’s rehabilitation programme by March 8th.  The idea here is that robust rehabilitation is key to rapid recovery and eventual restoration of useful motor function.

The great team of advisers who have helped me make the decision to go ahead with all this include my tireless Dad + Dr. Liu Yansheng  (Kunming Tongren Hospital chief neurosurgeon ) + Dr. Zhu Hui (Kunming Walking Programme founder) + Dr. Wu Wutian, M.D., Ph.D. (Hong Kong University Professor of Neuroscience) + Dr. Xu Xiao-Ming, M.D., Ph.D. (Indiana University Professor of Neurological Surgery).

Frankly, I’m at a loss how to express my gratitude to Dr. Zhu Hui and to these busy men for the work and time they’ve contributed to spell out for me the complexity and risks of this undertaking.  That said, I’m also deeply appreciative of how relaxed Dr. Liu appears to be about a procedure he has performed successfully many hundreds of times!  🙂

On a final note, I would not have been able to write this blog entry without my Dad.  Well, let’s be frank, I would not be in Kunming if it were not for my Dad.  My Dad’s energy is far greater than any young person I’ve ever met and he is simply my hero!

Working Group

Working Group

Hominus Wu

“Hominid Wu” 🙂

Dr, / P.H.D Wu Tian Wu

Lighter side of Dr. Wu

Dr. Liu & Dad

Dr. Liu & Dad

Surgery Dialogue

Surgery Dialogue

Part 1: Details about upcoming Spinal Surgery

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About my upcoming surgery — finally scheduled for May 14th — well, I’m thinking about a two-part narrative on this subject so that these posts don’t get too long.

Today I’ll lay out the background, and tomorrow I’ll spell out details of what is shaping up to be a pretty complex surgery in which my neck will be effectively broken again in order to correct what’s wrong.  How about that!  🙂

For many months I have endured severe neuropathic pain that has been getting steadily worse.  Actually, the pattern became apparent in Miami about a year ago.

The core pain is with me 24/7 … sometimes as low as Level 6 in the mornings on a really “good” day and then getting steadily worse throughout the afternoon.  In the evening the pain often reaches beyond Level 10, with the sensation of knives being stuck in my neck and shoulders, and when it gets this bad I am unable to sleep at all.  (I’ve long ago gotten the hang of why sleep deprivation is considered such an effective form of torture!)

Anyway, the escalating pain levels have now reached the point where I am unable to participate fully in the Kunming Walking Programme, which is the main reason I came here in the first place.  Recently I have only been able to last until midday before having to retreat to my apartment.  As the old saying goes … “something has to give.”

The view of my top medical team here (Dr. Liu Yansheng and Dr. Zhu Hui) is that my pain is caused by a combination of a so-called “tethered” spinal cord + a fluid-filled cyst growing on the anterior (front) side of my spinal cord.  The feeling is that the cyst, which runs from C-5 down to my C-7 vertebra and now occupies more than 50% of my spinal cavity, is likely the major cause of my pain.  Further, sequential MRIs reveal that the cyst is growing, and this may account for why the pain keeps getting worse and lasting for more hours each day.  For example, between December 5, 2012 and April 13, 2013 (about 18 weeks) this cyst grew from 2.7 cm to 3.6 cm, an increase of more than 30%.

Day and night this cyst not only presses hard against my spinal cord, causing neuropathic pain, but there is also MRI evidence that the incessant internal pressure is causing further degeneration of surviving tissue inside my spinal cord.

The surgery being proposed turns out to be seriously tricky because the cyst is on the anterior (front) side of my spinal cord, whereas surgical access is only possible from the back side – so-called dorsal entry.  This means that between the point of surgical entry and lancing this cyst there are not only three intact vertebrae that have to be cut away but also the actual spinal cord itself is in the way.  Some obstacle course!

We have learned that few neurosurgeons anywhere in the world have experience with a procedure this complex — some would say even “daring” – and even fewer apparently would be willing to attempt it.

Fortunately, members of my 5-man team (actually one superwoman, Dr. Zhu Hui) are all Kunming PLA Hospital veterans who have performed this kind of surgery hundreds of times and exude confidence they’ll pull me through this just fine.

Tomorrow I’ll go through details of the surgery that has been proposed as well as how the recovery is expected to play out … and also how resumption of vigorous rehabilitation just 15 days after surgery is anticipated to play a significant role in my recovery.

Fortunately, there is a wonderful Chinese patient, Nu Jia, from Guangzhou who is here alongside me in the program, and she went through pretty much the same surgery for the same reasons in February 2012.  Nu Jia’s car wreck injury (C5/6 ASIA A Complete) appears to have been even worse than my own, suffering a near-complete transection of her spinal cord.  But today she is pain-free and making great progress, not only with walking but has also recently regained bladder control.

So there’s a lot to play for once I get over this hurdle!

 Dr. Xu Xiao-Ming, M.D., PhD. from Indiana University &Dr. Wu Wutian, M.D., PhD. from Hong Kong University / Dr. Zhui & Dad discussing surgery details

Dr. Xu Xiao-Ming, M.D., Ph.D. from Indiana University & Dr. Wu Wutian, M.D., Ph.D. from Hong Kong University with  Dr. Zhu Hui & Dad discussing surgery details.

Dad & NuJia

Dad & my good friend Nu Jia.

Dad & Dr. Wu Tianwu, M.D./P.H.D From Hongkong University

Dad with Dr. Wu Wutian, M.D./Ph.D. Professor of Neuroscience at Hong Kong University

A local MRI – Welcome to the “Twilight Zone”

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I had been thinking that my worst MRI experiences were behind me.  After all, one time a couple of years ago at the University of Miami, I had been very rudely ordered to move myself without assistance from a wheeled hospital bed onto an MRI table  … my repeated “but I’m paralyzed” plea apparently not registering with the professional MRI technicians!

But yesterday the local MRI team here decided to stretch my experience envelope and took me quickly into a new corner of the MRI “Twilight Zone” … one that that mixed terror with farce.  Here’s what happened.

In the nearly 6 months since my last cervical MRI, my neuropathic pain has gotten steadily worse, and thus in preparation for upcoming surgery it was felt that a fresh MRI would be required.  Basically, our team here wanted to determine whether or not the arachnoid cyst compressing my spinal cord had gotten larger or possibly another cyst might have developed.  The thinking is that my pain results from a combination of the large (2.7 cm x 0.7 cm as of October 2012) cyst compressing my cord as well as so-called cord “tethering” from internal scar tissue.

So I headed down to the MRI department in my power wheelchair, assuming the chair would be handy to elevate me to level with the MRI platform in order for my caregivers to slide me over.  In Miami, with the MRI machine obviously switched off, an SCI patient is generally allowed to drive in with a wheelchair in order to transfer onto the MRI table and then a caregiver removes the wheelchair from the room.

Understandably, in China things are often done quite differently. So I was informed I would not be allowed to drive in my power chair into the MRI room because the chair is made of metal.  Yes, even with the MRI machine NOT switched on!

In these circumstances, I decided to go with the flow and asked the MRI technicians how they proposed to move me at least 50 feet into the MRI room and then get me up onto the 4 ½ foot high MRI table . In a seemingly very relaxed manner, two Chinese technicians looked at each other and said they would carry me. I laughed and replied “how on earth are you two guys going to carry a paralyzed 5’9 gal who’s twice your size?”

Apparently they did not find this amusing and just straight away took my arms, wrapped them around the neck of one of these guys, while the other got his hands under my legs and … well, heave, ho, here we go!

As they lifted, I could tell this would not end well for me.

They managed to haul me over to the MRI bed, and then we ran into quite a big roadblock … or “butt-block” might be more like it.  As I mentioned, the MRI table was about 4 ½ feet tall. I could tell they were losing strength and that they could not lift me high enough to get me onto the MRI table surface.

The three of us started to sink lower to the ground, and I was just trying to imagine how they planned on picking me up off the floor once we all went down together … or how they’d explain to the top neurosurgeon how they managed to drop a me in the MRI room.

Finally, one of them decided to put my feet up on the bed, with my butt and upper body still being held up mid-air and hanging off one side. So, basically I was now perpendicular to the MRI bed. While one of them struggled to hold my upper body, the other literally started pulling my legs. Try to imagine tug-of-war with a quad atop an MRI table!  Seriously, I could not make up this stuff if I tried.

So, while one guy was pulling my legs and the other was trying to push me up onto the MRI bed, we ran into the problem of my butt continuously dropping and hitting the MRI bed, because the guy holding my torso could not lift my butt. At this instant, my adorable caregiver, Xiao Lin, ran into the room to save the day.

The three of them finally got me up on the MRI bed and placed my head into what I can only describe as a type of Chinese (Star Wars) Darth Vader helmet. I know in the United States there’s a type of harness they put over you so you don’t move your head, but this MRI machine literally caged in my entire head like a space alien.

Oh .. but there’s more.  For the two MRI technicians attempted put my hands over my belly to keep them still as they put me in the MRI machine, but my hands kept flopping down. I tried to explain to them that I’m a quadriplegic and my hands will not stay put . They kept asking me to try… yes, they really did … try again!  Finally, they brought in my caregiver to assist and asked her to hold my hands steady over my belly while I was in the MRI machine.  I’m sorry, what?

Yes, indeed, apparently I cannot drive into the room in a wheelchair with the MRI switched off, but I can have another human being in the MRI room with me without any protective gear holding my hands over my belly. Afterward, when I reflected on these events, I felt badly for my caregiver, because I’m pretty sure she didn’t sign up for so much radiation when she took the job.

I look forward to having a chat with the hospital administration about all this, just as I did a couple years back when I was manhandled by the University of Miami MRI team.

Otherwise, I’ve had an interesting couple days getting my head round the many details related to the admittedly complex surgery being proposed for me.

Two brilliant professors, Dr. Xu Xiao-Ming, M.D., PhD. from Indiana University and Dr. Wu Wutian, M.D., PhD. from Hong Kong University, arrived in Kunming on Saturday for in-depth discussion of my surgery with the Kunming surgical team.  Professors Xu and Wu are not only treasured family friends but are also pioneers in development of the Kunming Walking Program.  Fortunately, a global consortium of neurosurgeons, neuroscientists and neurologists are hammering out final details of my surgery, which now looks like will be scheduled May 14th.

In the next day or two I will post another blog with specific details on the surgery that is being proposed and will be executed by a deeply experienced five-man team who worked together for years at the Kunming PLA (People’s Liberation Army) General Hospital.

My Kunming (Military) Exercise Program

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Many of you may be wondering what it is I do every day, since I’ve been in China almost a month and mostly post funny stories.  So, today I will focus my blog on what it is I actually do every day at Kunming Tongren Hospital.

Presently, I spend about half a day at the SCI rehabilitation center in Tongren Hospital because my neuropathic pain gets pretty bad every afternoon.   After my untethering surgery, I will spend most of my day at the hospital’s SCI rehabiltation center.  Unfortunately, the pain is presently so intense that I am unable to speak with anybody in the afternoons, which will hopefully change after the surgery.  Surgery has been delayed right now as my Dad and I are still working to get a really clear understanding of the risks before anyone opens up my neck again!.

Meanwhile, I wake up at 5 AM every day and get to the 7th floor SCI rehab center each morning by 8:30 sharp!  My “commute” in wheelchair takes about 20 minutes.  Dr. Zhu Hui is a real stickler for patients being on time.

I take turns with several other foreign patients teaching the Chinese staff one English sentence each morning. We then follow the English lesson with what I can only describe as a morning military song — after all Dr. Zhu Hui was an officer in the Peoples Liberation Army for the last 30 years.  During the song we follow a very structured stretching routine.

Once we’re done with our morning song and warm-up ritual, all the patients break off into individual morning routines.  My present routine, which will also continue after the operation, includes six specific exercises. These exercises take me several hours to complete and include:

1。 Lying down on a blue exercise mat where staff therapists string up my legs and hands together like a marionette puppet, as I described in one of my earlier posts. My hands are strapped in, and I am literally pulling my leg weight up and down.  It is actually quite good exercise.

2。 The next exercise on the blue mat requires me to be turned over on my side where the PT’s string up one leg at a time, and I start rotating (swinging) my leg back and forth, which basically promotes hip rotation. This particular exercise loosens all of my joints up to prepare me for walking in the Kunming walking frame that was developed some years ago at the PLA hospital.

3。The third exercise on the mat involves my sitting up and balancing with my own head and shoulders.  While I am sitting up, I’m having a ball thrown at me for a punching exercise.  This is one of the best core balance exercise routines I can think of.

4。For the final exercise on the mat, I lie down on my back and two PT’s grab my wrists for good old-fashioned pull-ups. We do about 100 pull-ups, which, needless-to-say, I find pretty exhausting by the time we are finished.

5。 After I am done with the mat, I get back into my wheelchair and strapped into a bicycle for 20 minutes. The bike offers me a great opportunity to learn new physical therapy exercise terms in Chinese, as I can talk to everybody while they walk by.  I am like chatty Cathy at the gym, as I’m trying constantly to improve my Mandarin wherever I can.  Dr. Zhu is strict about the Chinese language, too … no Yunnan dialect allowed in her presence!

6。The sixth and final exercise (I’ve saved the best for last) is getting me up in the standing frame for 30 minutes at a time. I’m working up to standing in the frame twice a day for 30 minutes with three therapists holding me straight up as you may have seen in some of my previous photos.  Standing Balance … that’s my Level One “core” objective.

Once I master Standing Balance,  I will start walking down the hospital hallways and even eventually perhaps also outdoors … while probably being pushed to do more pull-ups 🙂

As the title of this post suggests, the Kunming Walking Programme is built on military discipline, for only by thousands upon thousands of repetitions of arduous exercices does the Central Nervous System “learn” how to re-program some of its brain neurons to use surviving axons to recruit muscles once thought to be paralyzed.  This takes time … lots of time … and, frankly, a disposition to put in the hard work.  For me right now, given my pain levels, this is a pretty tall order, but I’m hanging in there and making progress.

“Chinese’ism’s”

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The last few days have been a little slow because it has been  Chinese “Tomb Sweeping” holiday, where people take time off to tidy up family graves.  I do have a few stories and some “Chinese’ism ” photos below for you.

Story 1:   Yesterday my Dad was sitting on the porch working and called for me to come outside, because a delightful elderly Chinese man had wandered over from across the street and was trying to speak with him, but Dad could not understand what he was saying.  I rolled outside and also had no idea what this man was trying to tell me.  I had to bring out my new caregiver, Xiao Lin, to actually translate local Yunnan dialect into Mandarin Chinese for me.  So here we had a three-way translation, where our neighbor had to speak to my caregiver and then my caregiver have to translate the local Yunnan dialect into Mandarin Chinese for me, which I then could translate to my Dad!  In the end, he just wanted to say “welcome to our neighborhood.”

Story 2:  I went to lunch yesterday with my sister Tiffany, with David Wishart (David is also a patient in the Kunming Walking Programme) and with David’s sister Rusty.  So, there were two wheelchairs and four foreighers … and we had a little band of curious local people following us on our trek, apparently curious to discover where on earth we could be going.  In the event, we went to this tiny Sichuan sidewalk restaurant that has become a favorite of mine.  Sometimes I wish I could peer into the minds of the many intensely curious local people, as I wonder what they are thinking when looking us over so closely.  On second thought, I think we’d actually best leave that a mystery!

Story 3: I was at the large Carrefour shopping Plaza yesterday with my Dad, my Mom, my sister Tiffany and neighbor Sandra, after which we decided to have an early dinner  at the Wyndam Hotel that is across the street.  I don’t think I’ve ever seen such fancy five-star hotel in Asia before … this one actually billed a being “platinum 5-star” … lots and lots of polished marble like a Hollywood movie set.  We had a scrumptious, multi-course Thai meal for about $20 a person, high for China but for what we ordered a bargain pretty much anywhere else.  China is a great place to live, but there are some days when you just need a break from everything Chinese, and a Thai feast at an Amercian hotel definitely lets you escape for a few hours into a parallel universe!

So, enjoy the pictures below… I think the captions pretty much speak for themselves.

In the next post, I’ll be updating you on my specific workout program at the Tongren SCI rehab center … this to give you a better idea at about what it is I do every day.

You have to love a Chinese man wearing a cowboy hat at a five-star Thai restaurant at the Wyndam Hotel in Kunming

You have to love a Chinese man wearing a cowboy hat at a five-star Thai restaurant at the Wyndam Hotel in Kunming

Mom and dad in the lobby of the Wyndam Hotel

Mom and dad in the Wyndham Grand  lobby

Yes, you see right… A mobile police station with full glass windows you can "watch a cop"

Here we have a mobile police station with full glass windows so you can “watch a cop”

Hmmm... at least they're kissing condoms.

Hmmm … at least they’re kissing condoms.

First shopping trip out with Dad

First shopping trip out with Dad

Sisterly love while out shopping at Carrefour

Sisterly love while out shopping at Carrefour

I'm not sure what to say on this one… Asians love their white skin?

German company selling “Whitening Repair” for Chinese!

A perfect example of Starbucks global reach ... Yes, I did buy one at Starbucks too at last week

How about this for Starbucks global reach … and, yes, I did buy one!

In Chinese car garages they have little red and green lights over the parking spots just in case you can't see if there's a car in that spot

In Chinese car garages they have little red and green lights over the parking spots, just in case you can’t see if there’s a car in that spot.

Tiffany and I were out on a walk and because it is China we had to double check that there was not a baby left in the stroller :-)

Tiffany and I had to double check there was no baby left in the stroller … Great public safety over here!

We live next to a dairy factory, and no… Apparently refrigeration is not the standard for yogurt in China.

We live next to a dairy distributor and have learned that refrigeration is not standard for yogurt in China!

Lunch at the Sichuan Restaurant

Lunch with David and Rusty @ Sichuan Restaurant

Technology at its best... Brothers and sisters Skype being from across the world together

Technology at its best … Skype video connecting brothers and sisters on opposite sides of the globe!

“Zuinan” Week: a step beyond a “Mafan” Day

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There are those days when so many things go wrong, when Murphy comes in to strike you when you are down.  But as my sister Tiffany always says:  “O’Toole’s Law states Murphy was an optimist.”

Probably O’Toole’s Law best explains what has been going on this week.  In Chinese, “Zuinan” means “disaster” … unlike “Mafan,” which just means trouble.  Maybe the past couple days have been somewhere between the two.

On Monday I was working out at the Kunming Walkng Programme SCI rehab center when one of my caregivers told me out of the blue that she had to leave immediately, as in right now,  because someone from her family was ill, saying also that she did not know when she would be back.

Now, whether or not someone in her family was actually ill, or she took another job, or she suddenly did not want to work anymore … whatever,  I guess I will never know.  That’s because my neighbor and now good friend, Sandra Lindberg, tracked down the AWOL and forced her to acknowledge she was returning to her home in the countryside and would not, after all, ever be returning.  So much for notice!

So, now I was left with my other caregiver, who suddenly became visibly disgruntled, alledgedly because she could not understand why her teammate left without notice.

Moving on to Tuesday … Tiffany, Sandra and Jo Zhang (good family friend and Dad’s translator) went off on a mission to recruit a replacement caregiver. In China, we’ve learned recently that you can readily find free-agent caregivers hanging around outside major hospitals, where local families hire them to assist with family members who are ill.

While Tiffany, Jo and Sandra were off to recruit a new caregiver,  I was at the Tongren Hospital having a meeting with Dad and a Chinese endocrinologist regarding the results of my recent thyroid tests.   After this meeting, I  am pretty sure Dad and I are better versed on thyroid endocrinology than this particular doctor appeared to be .  My experience with endocrinologists, whether in China or the United States, is that in general they appear to be pretty linear thinkers.  That is,  they do not generally seem to be able to discuss endocrine issues in a holistic way that takes into account the inter-connectedness and biofeedback loops that are characteristic of the endocrine system.

In any event, my thyroid function appears to have been out of whack simply because neuropathic pain induces stress levels that raise cortisol output from my adrenals that, in turn, suppresses thyroid function.  Bottom line is that my local endocrinologist here said  I am okay for surgery.

However, I am still not scheduled for surgery for another few weeks, as there are a lot of moving components and numerous people involved with this decision.  My Dad is working with neurosurgeons in Kunming, Hong Kong and the United States to make sure we have critically assessed the many risks involved before proceeding to cut open my spinal cord.

Now, back to the Caregiver Funny Farm …

Tiffany, Jo and Sandra returned to report that they had found a excellent caregiver candidate, who would stop by the next day for an interview. They also told me that they got chased out of one recuriting area because a “nutcase” Chinese lady was accusing Sandra and Tiffany of selling Chinese children!  Yes, you heard that right.  I am guessing two obviously foreigh ladies walking around an entirely Chinese hospital might have raised some eyebrows …  🙂

Unhappily, I woke up on Wednesday in severe neuropathic pain, so I was unable to go to the Kunming Walking Programme rehab center … obviously not a brilliant start for me.  However, I managed to get up and dressed by midday, when the remaining caregiver I had decided that she would try to take advantage of my situation and started (for 4th time in just two weeks) to renegotiate her contract … this time looking for yet another raise to compensate her for the risk that the just-hired replacement caregiver might not work hard enough!  Yep, that was her line!  And the just-hired woman (Xiao-Lin) had not even started work!

I’m beginning to think caregivers in all countries are pretty much a pain in the ass, but generally most seem to get on with their jobs rather than focus continuously on how take advantage of the disabled.

In the event, after about an hour and a half of an entirely circular, Chinese conversation with this disgruntled woman,  I simply decided that I had had enough.  After all, we have learned that we have a deep pool of free-agent caregivers here to chose from.  So, I fired her on the spot and ordered her out of the house immediately before she could poison my relationship with Xiao-Lin, who arrrived on time just one hour later.  So, here I am, once again, breaking in a new caregiver, who I must admit makes a good first impression.

Maybe the break-through insight here is that we understand now that we need to control the “agency” function … that is, we cannot afford to allow self-serving intermediaries to operate between us and those individuals who want work with us.  In future, this will be a logical service for the Tongren Hospital itself to offer to international patients.

So Xiao-Lin started full-time this morning, Thursday in Kunming, and thus far things have been going pretty darn well.  But because of the Chinese concept of “quiet diplomacy” it is sometimes really hard to tell what local poeple are actually thinking.  Indeed, some days it seems to me that living in China is kind of like playing three-dimensional chess. We still need to find a second caregiver, but one day at a time right now.

For sure, I will be going out for a drink with Tiffany and Sandra this Saturday evening at Salvador’s Coffee House in Kunming center city … http://www.salvadors.cn/

And to at least close on a funny side note:  I was just finishing this blog when suddenly I heard a delightful Christmas tune … in fact, Jingle Bells!   Seems that when our Haier (China brand) clothes washer stops, instead of a beep, Chinese washers play some sort of Christmas jingle.  It’s hilarious the first time!