Karaoke in China!

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Thankfully “March Murphy Madness” is over!

Suzanne Edwards, who came up with this catchy turn of phrase, and I are looking forward to having an “Awesome April.”

Do you ever have one of those months where everything just seems to go completely  wrong?

Well, March pretty much did me in. I managed to not only to develop a pressure sore, my first in 3 years, but I also sustained a tissue shredding injury less than an inch away from the pressure lesion due to being handled too roughly on the hard mat at the gym.

Update on the Pain Front:

We are still waiting for the right protocol for the hyperbaric pressure chamber. However, my sister Tiffany, who is a professional SCUBA dive instructor, did some research and advised me to be very, very careful about breathing 100% oxygen under high atmospheric pressure because this can lead to numerous complications, notably including oxygen toxicity.

Otherwise, I obviously had to postpone proceeding with the hyperbaric chamber for the last few weeks due to the gym injury, but I should be up and running in the next few weeks with the pressure chamber, and I’ll keep you posted on how it goes.

My skin is pretty well healed up now, I am dealing with what I would say is the usual amount of neuropathic pain, no worse, no less, and have really been focusing on trading as of late, which also helps get my mind off the pain.

Otherwise, Dad and I have independently been investigating neurostimulator implants for neuropathic pain. This is an effective measure of last resort for some people who suffer from severe, chronic neuropathic pain.

A neurostimulator is a surgically placed device about the size of a stopwatch. It delivers mild electrical signals to the epidural space near your spine through one or more thin wires, called leads. For patients for whom this technology works, the intermittent delivery of electrical simulations serves to dampen chronic neuropathic pain.

International clinical trials of this new pain management technology are ongoing. In the Asian region, Singapore is a leading center, where some SCI survivors have had good results with implanted neurostimulators.

How It Works

Neurostimulation is believed to provide pain relief by blocking the pain messages before they reach the brain, although in fairness the ground breaking research of Drs. Ronald Melzack and Patrick Wall suggest pain transmission and brain registry of pain is more complex than a one-way street of pain signal transmission.

Anyway, the theory is that the neurostimulator sends out mild electrical impulses that reach the brain faster than the pain signal can arrive. In other words, it outsmarts your pain. Instead of pain, you feel a tingling sensation. You can adjust the strength and location of stimulation using a handheld programmer.

Wherever or not I ever have a neurotransmitter implanted, at least we now have this technology on our drawing board and are looking into the various ways this strategy might be implemented.

One neat thing about neurostimulation is that you can test it out for a week to see if you are a viable candidate for the procedure. The doctors essentially place the leads in the epidural space but don’t implant the battery box under your skin until they know you are a responder to the treatment. You can see a picture below of the different components of neural stimulation how it works.

NS

Implanted NeuroStim Device

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Neurostimulation Leads, which are inserted into the spinal column

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Neurostimulator Battery pack

On a completely separate note, I wanted to share with you a fun cultural activity here in China with which many readers may not be familiar.

On the weekends, people all over the developed world often get together and go to the movies, go to a bar, have a drink, etc.  What the Chinese enjoy best is going to a karaoke bar.

There is a national karaoke bar chain called KTV that has thousands of locations throughout the country. This is no normal karaoke bar, as there are private rooms you book with your friends to have drinks and sing karaoke. Many of these rooms are even themed with cartoon characters, superhero themes, movie themes, etc.

When I lived in Beijing about 15 years ago, I used to go karaoke all the time and wish I still had the pictures to show you. Nonetheless, one of my Kunming friends, Emma, who works at Tongren Hospital, recently went to a karaoke birthday party for a three-year-old. This three-year-old sure must have been very special because the parents rented out an entire room for the child and their friends to sing karaoke.

As you can see from the video below (apologies that the sound is not that great) karaoke is learned from a very young age and is part of a child’s upbringing. This video was too funny to pass up and so I share it with you! I have also included photos of some typical karaoke theme room pictures for you :-)

or click: http://youtu.be/QDh-BKtsUrM to view video on YouTube

ktv

ktv.

KTV..

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Neuropathic Pain Updates … and around we go!

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I woke up yesterday and realized it has been about two weeks since my last post. Sorry about this and apologies for the delay.

Last week my Dad went on a scouting mission throughout the sprawling metropolis of Kunming to investigate what the local medical community knew about hyperbaric oxygen therapies.

Together with Wenjun Liao (“Jenny”) who is our translator and now very good family friend, Dad visited several major hospitals and was able to find a particular barometric oxygen pressure chamber that I would be able to slide right into.

Medical School

Chamber 1

Chamber 2

Now that we’ve successfully found a workable hyperbaric chamber in Kunming, I am waiting to hear back from my brother Mattias, who is touch with doctors in the U.S. seeking to devise a treatment protocol that would be safe and possibly effective for me. For example, we need to understand how deep I will go down, how long I will stay under and at what pressure, how many times a week to enter the chamber, how much oxygen should be administered, etc.

While barometric chambers of many sizes and designs are manufactured in China and are seemingly in pretty wide use, the concept of using such a device for neuropathic pain associated with spinal cord injury is a new idea over here.

In this regard, the particular experiments that caught our attention were carried out by a professor working at Johns Hopkins University in Baltimore, Maryland.

While I wait for the protocol details, I’m still taking the Alpha Linoic Acid (“ALA”) supplement at 600 mg daily, and I think this might be working at some level. In the last 2 to 3 weeks, for example, I would say my neuropathic pain levels have been reduced by about one or two levels from when they had been stubbornly for many months.

Now when I wake up in the morning I generally start with a neuropathic pain level of about 6 to 7 (1 = slight pain and 10 = practically unbearable pain) and generally by late afternoon the pain levels creeps back up to between an 8 to 10 depending on if there’s something irritating my body that day.

During my lithium therapy, to give you an idea, I was at a constant 9 to 10 level 24 hours a day for weeks on end. So, level 7 pain on a consistent basis over the last two weeks, while still really uncomfortable, is nonetheless a welcome reduction.

On the other hand, I cannot be sure if the very recent pain reduction is due to the ALA supplement, because I have recently also made some pretty significant changes to my diet. This is a classic example of the experimental risk of changing more than one variable at a time, but in effect that’s what I’ve done.

Here’s what’s up.

I recently finished reading a book that I highly recommend to literally anyone who can read and has the least interest in their own health. The book is titled “Grain Brain” and was written by an exceptionally experienced Florida neurologist named David Perlmutter. I have the Kindle edition, which makes reading for me really handy.

I’d already been eating pretty sensibly, being a vegetarian/vegan and staying away from any and all processed foods/refined sugars. So now I’ve decided to go gluten free and cut from my diet most sugars, even including most fruit.

Since gluten has an outsized neurological impact of which I’d been unaware before reading Dr. Perlmutter’s book, I would like to see if eliminating gluten and greatly reducing even fructose sugar has any effect on my sleep patterns, which are just terrible.

In addition, I’m interested to see if I am in fact sensitive to gluten, which may or may not affect neuropathic pain.

Interestingly, it turns most people have measurable gluten sensitivities even if they do not show immediate intestinal symptoms. Instead, the risk is longer-term neurological impact, culminating in dementia or Alzheimer’s disease. Again, I HIGHLY recommend this remarkable book.

Finally, I have just re-launched myself with Dr. Les Fehmi’s Open-Focus meditation technique. I’d gotten knocked off track during January and February on account of my horrific experience with lithium carbonate. Will keep you posted.

All-in-all, then, I’ve undertaken a number of new experiments this spring as we stay focused on trying to find workable solutions to my persistently high, and frequently debilitating, neuropathic pain.

Otherwise, things are all pretty quiet here on the China front, where recent spring weather has been summer-like. Presently I’m holding down the fort in Kunming with just my two loyal my caregivers and, of course, our much-appreciated and loved Jenny. My dad is presently in Hong Kong having a busted tooth repaired while my Mom is back in North America for some R&R.

Pain Management Attempt # ?: Yellow Submarine

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As unfortunate as it is that the Lithium protocol did not work out as anticipated, I have wasted no time moving on with several new approaches to pain management.

Alpha Lipoic Acid

The first new approach involves a supplement called Alpha Lipoic Acid, which is an antioxidant component of many foods and is also naturally made in our bodies. In recent studies, Alpha Lipoic Acid supplements have also been known to reduce pain in various kinds of neuropathy, such as often associated with Type 2 diabetes.  This includes reducing tingling and prickling throughout the body … symptoms common to my neuropathic pain. So I have just started taking 600 mg a day and will continue to do so for at least a month to see if there is benefit.

Hyperbaric Oxygen Therapy

My next neuropathic pain treatment plan is more complex.  I plan to use a medical hyperbaric oxygen chamber to simultaneously raise both atmospheric pressure on my body and oxygen saturation of my tissues.

Here is a short paper on Hyperbaric Oxygen Therapy For Neuropathy.

Hyperbaric Oxygen Chamber

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The basic concept goes something like this:

Driving oxygen under pressure deep into tissues reduces pain symptoms.  Hyperbaric oxygen also stimulates the growth of new blood vessels, enabling the body to increase effective oxygen and nutrient delivery.

The patient breathes 100%  oxygen inside a so-called hyperbaric chamber at a pressure greater than sea level.  This device looks something like a miniature submarine.

The air we normally breathe contains 21% oxygen at sea level.  When breathing pure oxygen at pressures higher than normal, additional oxygen dissolves into the blood plasma. This results in increasing the quantity of oxygen transfer to any tissue in the body.

This past week, my parents and brother Mattias went out to dinner in Kunming with Dr. Zhu and Dr. Liu from the Tongren Hospital.  My Dad was trying to explain what we had in mind, but apparently something got lost in translation, as I learned the next day during my workout in the SCI rehab center at the hospital.

First thing in the morning I was approached by Dr. Zhu, walking unusually quickly towards me, hands waving in the air with excitement. She exclaimed that four hours south of Kunming she had just discovered very nice resort on a very deep lake that would be able to take me down several hundred feet in a submarine in order to achieve the pressure I was looking for.  Seems a lot of Chinese submarine research is conducted inland out of concerns for military secrecy.  Also, Yunnan Province is home to by far the deepest lake in China.

Anyway, I was seriously perplexed by her offer and asked why I would need to go for a submarine ride, hastening nonetheless to say how much I appreciated her effort to arrange such an adventure!

So she went on to explain in some detail how she could arrange for me to be hoisted down into the submarine and that the family would enjoy staying at the very nice resort while I went cruising with Chinese submariners.

Seriously!

I did my best to hold a straight face, and finally I worked out that she actually had not understood that I was simply looking for a medical hyperbaric oxygen chamber capable of increasing the pressure on my body as if I were SCUBA diving.

Once I worked out the correct Chinese expression for “hyperbaric oxygen chamber” she immediately started laughing and said “Oh, dear, that is much easier … several Kunming hospitals have these hyperbaric chambers. I thought you needed a submarine specifically!”

I have to admit it would have been pretty cool to have my own personal “Yellow Submarine” to take me down to the depths of a Yunnan lake.

So, next Tuesday my Dad and his Kunming assistant, Wenjun Liao (“Jenny”) are scheduled to go inspect one such facility.  If it looks okay, we’ll start trying to figure out what protocol we need to follow, and then I’m hoping to give this a try.

Meanwhile, starting this weekend I’m resuming my work with Les Fehmi’s “Open Focus” and will report back on how this is working out as I get more experience with the methodology.

On a separate note, my brother Mattias departed yesterday for Hong Kong and the United States after a wonderful visit here in Kunming.  We actually share the same birthday, March 1st, and so we had a joint birthday celebration with a Chinese banquet featuring Peking Duck.

And my two caregivers, Xiao Lin and Xiao Yin, surprised me with a beautiful birthday cake, as you can see below.  I must say, Chinese cakes are amazing, being sweeter than typical Western cakes (hard to imagine, right?) and are typically very elaborately decorated.

Home Party

Xiao Yin, My Mom, Xiao Lin & Jenny

Birthday Kids

Birthday Kids

Cake

Lithium A Bust For Me

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“Murphy” has decided recently to move in with me.  I’m trying to be as hospitable as possible, but he has a cruel sense of humor.

:(

After another five weeks on the China SCI Network Lithium protocol, I have decided to stop the therapy due to numerous side effects that were getting increasingly severe while gaining no therapeutic benefit whatsoever.

I have gone from poisoning myself with the initially-recommended (750 mg/daily) dosing to having consistent urinary tract infections, intensely sensitive skin, nausea, severely elevated neuropathic pain levels and bouts of dysreflexia shock.

If the Lithium was going to have any positive effect on my neuropathic pain, I had been told I would’ve felt it within the first 2 to 3 weeks.  This did not happen.

Perhaps the most disconcerting side effect of Lithium has been the recently extreme sensitivity of my skin, which is breaking down.

The worst challenge is that I woke up about two weeks ago with a Stage II pressure sore on my backside.  While this is a known risk for SCI survivors, I had been extremely careful not to develop such an injury and successful as well, having avoided even one incident since my November 2010 hospital discharge.

Stage I pressure sores mean that the skin is not broken but you have a red mark, which will not turn white when you push it, indicating that there is no blood flow to the skin in that area.  Stage I pressure sores usually take a few days to heal.

Unfortunately, overnight I developed a pressure sore that was already an open wound, classifying it as Stage II.

When you are paralyzed and constantly sitting on a wound, the only treatment is to get off your butt and out of your wheelchair and into bed, being turned back and forth by caregivers every few hours to reduce the pressure.

For the first week I tried to just treat the injury with ointment and rotate back and forth in my chair, but that did not cut it.  So, last Thursday I decided that I would spend at most four hours a day in my wheelchair and the rest of the time in bed shifting back and forth until this pressure sore heals up.

So I have been off my bum 20 out of the 24 hours a day for the past four days, and the sore does not seem to be getting worse, but not a whole lot better yet either.

The injury is only the size of a pencil eraser, and those inexperienced with this risk might think not to worry about such a small wound.  However, as I am sure every single one of my SCI friends knows, a tiny pressure sore can spiral out of control very quickly within one week into a life-threatening injury like the one that killed Christopher Reeve.

That’s why I’m spending 20 hours a day now in bed … will keep you updated.

Now, onto the next course of action for neuropathic pain.

Unfortunately, for me Lithium had so many serious adverse effects that I was not able to continue with my Open-Focus work to change the way my brain interprets pain signals from the rest of my body.  Now I will renew my focus on Les Fehmi’s Open-Focus therapy and see if I can get myself back on track with pain reduction.

http://www.openfocus.com/

Secondly, my Dad and I are looking into different types of neural stimulation devices that might be implanted nearby my spinal cord. These stimulation devices, for some patients, allow them to press a button, which sends a shock up their spinal cord and essentially dims down the pain signals.  In the next blog I will try to explain neural stimulation in detail.

In the meantime, my brother Mattias arrives from the United States on Tuesday.  We share a March 1st birthday, and so we plan to celebrate together.

Unfortunately, I’ll likely still be bed-ridden, so it looks like we’ll watching a lot of movies together in bed.

:-)

Lithium Round 2 – Update

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Happy Valentine’s Day!

I tried to explain the concept of Valentine’s Day to the local Chinese … but, well, no comprehension of the concept.

:-)

Now onto the Lithium update …

After initially poisoning myself with Lithium, I took a week off to clear my system  and then restarted at a lower dose … 450 mg per day rather than the 750 mg specified by the protocol.  I have been back on Lithium (carbonate) for two weeks now.

So far, the results have been acceptable. My blood serum Lithium levels have averaged above the 0.6 nmol/L minimum called for in the protocol, and the nausea I am experiencing is tolerable.

Unfortunately, my neuropathic pain has actually been worse over the last two weeks. I’m not quite sure what that is all about, but I intend to continue with the Lithium for six weeks as specified in Wise Young’s clinical trial paper that I posted a few ago.  In case readers want a fresh look, here’s the link to the paper:

China2011_Lithium_Trial

If we do not have any success with Lithium, my Dad and I are now strategizing Plans B, C and D.

I keep reading about patients all over the world dealing with from neuropathic pain, but every individual is unique, so I may have to keep trying new things until we find a solution.

Otherwise, things are pretty slow here in Kunming right now. So it will be great to have Suzanne Edwards coming back from England in the next few days to rejoin the program.

As Chinese cities are not generally very handicap accessible, I tend to spend most my time at the gym or at home, either reading or working at my PC.  There are days when I think I may be going crazy, but I just remind myself that for the next year in China I’m attempting to put myself through a PhD trading program.  Every PhD candidate I have ever known spends a year or two locked in their office or lab working continuously.

For diversion, I’m enjoying a series of online video courses on particle physics and quantum mechanics.  I’ve always had a general interest in physics, but recently I’ve developed a keen fascination with how the universe works, from the smallest unit of matter to the mystery of black holes and dark matter.

In this regard, there is a terrific company called The Great Courses where you can purchase audio or video courses on a wide range of subjects.  Each session is about 30 minutes,  which makes the information absorbable. This is where I started for learning the basics on particle physics and concepts of quantum mechanics.  The professors who teach these courses are carefully selected from major universities and are really top-notch, both as academics and as presenters.

I’ll keep you updated with the Lithium experiment as I progress.

Kung Hei Fat Choy!

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Welcome Year of the Horse!

As I write, it is New Year’s Eve here in China, and what a massive national celebration it is.

The Lunar New Year, sometimes referred to as Spring Festival, is sort of like the Western world’s New Year + Christmas + Easter all rolled into one.

Mostly like Easter, I think, as this is a holiday of renewal + fresh starts for many.  Indeed, I’m really hoping the Lithium therapy brings me a fresh start this year without incessant pain.

In the largest annual human migration on earth, literally hundreds of millions of Chinese are all traveling at once today to visit family and friends.

So here in Kunming this afternoon we had a little celebration of our own at Tongren Hospital.

The weather is just beautiful right now … lovely spring days all this week, and even the trees here get dressed up for China’s Spring Festival!

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Trees Dress Up in Our Neighborhood

Our hospital celebration featured a homemade dumpling competition organised by Dr. Zhu and her staff.   Only in China!

Hey!  You think a quad cannot roll dumplings?  Feast at least your eyes on these puppies … I made 24 altogether!

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My Dumpling Production Line

Dr. Zhu was in great form today, even bringing along an entire case of excellent French wine for everyone to enjoy.

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Dumplings à la Française

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Mom Working Alongside Dr. Zhu

All the spinal cord patients + hospital nursing staff + senior rehab team members attended and pitched right in, rolling dumplings, cooking sweet sticky rice … and eating and eating … truly China’s favorite national pastime!

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Cooking in the SCI Rehab Center

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Yummy … Traditional Duck! (although I am a vegetarian)

Everyone had a really good time, and on my way out I was loaded down by Dr. Zhu with a weekend’s supply of extra dumplings … a lapful, actually!

And then I was back out into the sunshine with booming fireworks even so early in the day, with individual citizens setting miniature bonfires on public sidewalks, burning documents from the old year to usher in good fortune for the New Year.

So I wish my readers one and all great good health and prosperity in the Year of the Horse … Kung Hei Fat Choy!

Lithium – Round 2!

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This past weekend the effects of Lithium Toxicity seemed to be virtually gone, and Friday’s serum Lithium test results came back at 0.2 nmol/L.  That is apparently a sort of baseline for 95% of the population, because there is some Lithium in the food we eat and the water we drink.

Unfortunately, once the Lithium had cleared for me, my neuropathic pain flared with a vengeance, and I was frustrated that we hadn’t yet been able to give the China SCI Lithium protocol a fair try.

So on Sunday I decided to have another go!

This time, however, I followed my friend Dr. Susan Solman’s advice and started up with much smaller dosing.

Not that Susan has a view one way or the other on this protocol … but, if one is going to take Lithium Carbonate for whatever reason, she advocates serious caution and starting out with small doses until the balance between blood serum level vs. how you feel can be evaluated.

Indeed, Dr Zhu Hui has herself been intrigued by what happened to me and therefore investigated further within China.  Interestingly, Dr. Zhu found a study from Qiqihar Medical University that offers the same advice as did Susan Solman a couple weeks back.

Qiqihar Medical University

The actual China SCI Network protocol calls for starting off at 250mg three times daily, which obviously proved a disaster for me.  So on Sunday I started again with just 150mg three times daily.

And guess what?

Today, 72 hours later, my lab results came back at 0.7 nmol/L … nicely inside the bottom end of the therapeutic range of 0.6 – 1.2 nmol/L.

:)

I am experiencing mild but tolerable nausea + occasional dizziness … but nothing I couldn’t handle for the 6 weeks of the protocol.

So we’ll see how this works out …

Meanwhile, on account of Lunar New Year holiday here in China that begins on January 31st this year, the Kunming Medical School lab will be closed until next week, but I’ll get another test just as soon as possible, perhaps as soon as next Monday.

Meanwhile, for readers who are not familiar with Chinese New Year, here’s a link to some information about this amazing holiday … which is a MUCH bigger deal than is New Year in Western countries.

 http://www.chinatravel.com/focus/chinese-new-year/traditional-customs.htm

Yesterday we had a surprise visit at our apartment, where Dr. Zhu arrived mid-afternoon with a five-strong delegation from the hospital to decorate both outdoors as well as inside!

Dr Who

Dr. Who?  Must be Dr. Zhu!

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Chief Neurosurgeon Dr. Liu

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How about this?  You like it?

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Mom pitched right in …

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Tongren Hospital Decorating Team

Sure can’t top Chinese hospitality!

:) :) :)