Monthly Archives: November 2013

Shifting Focus (Part 2)

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I mentioned in my last blog post (Shifting Fcous – Part 1) that this month I have come to a major turning point in my life — one where I have decided that I’m going to elevate to top priority reducing my pain levels in order to create a “life space” where I can function productively.

Short of resorting to long-term use of drugs, which I am not prepared to do, this will mean working out how to re-draw the “brain map” that is keeping me in severe pain, as such maps do, for example, in what is known as phantom pain syndrome.

Readers interested in the science and clinical relevance of neuroplasticity might like to know about “Soft-Wired” … a new, non-technical book from field leader, Dr. Michael Merzenich.

http://www.soft-wired.com/

Thus I will now be using the Kunming rehab program as a platform for staying fit for the next couple years and devote the few good hours I have each day to study.

When not at the hospital rehab center, I have been constantly studying a subject known as “technical trading” of financial assets.  My ambition is to create out-sized wealth in support of neuroscience research.

Presently, I trade government bond futures, large cap equities and the foreign exchange cash market.  The methodology I use is based on complex geometry that reflects graphically what might be called the “animal spirits” of financial markets.

Used correctly, technical trading enables accurate anticipation of oncoming price changes without reference to news or fundamentals of any kind.

Focus on technical trading when I’m not at the gym is about the only activity that enables me to avoid thinking constantly about the pain.  Indeed, I view trading financial assets through a sort of libertarian prism, as being an activity that allows a skilled and disciplined individual more life flexibility that any other endeavor I’d discovered even before my accident.

Notwithstanding the complexity of the geometric patterns formed by price and time data, most successful traders consider consistent success to be 90% psychological.  Consequently, not only do I strive daily to refine the technical aspects of my work, but I’m also constantly striving to secure peace of mind and reducing the anger I often feel about the accident.

Many of the great traders, who’ve earned literally billions in a single career, say that their trading performance greatly improved after they learned to accept and understand a wide spectrum of their own emotions.

I’ve also come to the conclusion that once you can accept the reality of a bad experience (like breaking your neck!) and learn to detach specific negatively charged emotions from certain beliefs, then you can push those emotions into a neutral place and think more clearly about a lot of things … like anticipating accurately today tomorrow’s Treasury Bond price!   I reckon that if I can get that down cold, I’ll be able to fund an awful lot of research.

I know from talking with many of my new handicapped friends that it is quite common to hold onto the past and never truly find a “happy” place after the accident.

Frankly, I woke up one day this month and decided that it is just too exhausting being unhappy all the time.  I realized that if I spent more time working towards accepting my situation, then I could make a lot of progress in the coming year.

I realize this is an ongoing and, indeed, lifetime challenge that most spinal cord injury survivors go through on a daily basis. Of course, I also appreciate the fact that less than 100 years ago most of us would not have survived the accident in the first place!

On paper, this adjustment process reads a lot easier than it is actually accomplished in real life.  So I’ll need to keep beavering away for quite some time at resolving all my issues, but I have to accept that I will never be as I was before the accident, and so I am determined to find a new identity that squares with my new reality.

I have been reading a lot of books and studying different methodologies to get to grips with these psychological issues, so if some readers are interested in any of the systems I am pursuing, please feel free to e-mail me.

Finally, I’ve observed that a good many spinal cord injury survivors I have met seem to be constantly trying to prove themselves physically via extreme sports, such as quadriplegic rugby, basketball, etc.

While I admire greatly their courage and determination, I also think a lot about the effects of likely further injuries from these rough sports for handicapped people.  Maybe that’s because successful traders are cagey about assessing risk.

Meanwhile, I haven’t met too many handicapped people who want to prove themselves competitively with their uninjured brains — be that financially, educationally, psychologically, etc.

So I’m working on a career approach that takes advantage of my uninjured brain, which first I have to re-program to ditch the pain!

Shifting Focus (Part 1)

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My new neighbor and friend, Suzanne Edwards, who arrived from England only two weeks ago, just underwent a successful spinal cord surgery to remove a large arachnoid cyst that was pressing on her spinal cord.  She’s been a great patient and is recovering quickly.

During Suzanne’s surgery, chief neurosurgeon Dr. Liu also discovered multiple bone fragments left alongside spinal cord by her original surgical team in England.  So this surgery turned out to be more important for Suzanne than she may have imagined.  Indeed, Dr. Zhu reported that the pressure inside Suzanne’s cyst was even greater than my own very high pressure in May.

It is unfortunate that in the United States and many other countries so many neurosurgeons are reluctant to operate inside a spinal cord, perhaps due to lack of experience with this admittedly tricky procedure.  The problem with cysts in or near the spinal cord is that often they continue to grow by filling up with fluid and building up pressure that results in reducing a person’s functionality as well as causing severe pain.  In my case, for example, an ascending cyst in my cervical spinal cord had already started to affect my breathing, not to mention causing intractable neuropathic pain.

In much of the developed world, neurosurgeons pretty much despair of helping spinal cord injury patients, especially those that are labeled “complete” injuries. These surgeons seem to conclude up front that most SCI patients will not regain motor function after surgery, and, therefore, the so-called standard-of-care is only to secure the broken vertebrae in what is known as a “spinal fusion” — which is essentially an orthopedic procedure that mechanically reinforces the spinal column.

In contrast, experienced Chinese neurosurgeons not only deal with mechanical stabilization but also open the spinal cord in newly injured patients to reduce as soon as possible the build-up of inflammatory pressure from the injury. This strategy results in much less secondary injury and consequent sparing of axons that would otherwise die off.  And this decompression strategy apparently explains why many Chinese SCI patients are able to benefit so much from rigorous rehabilitation, as I have repeatedly witnessed here in Kunming.

Unfortunately, in Miami I did not have the benefit of such progressive surgery, and thus I suffered typical secondary injury that killed off axons that might otherwise have lived.  Consequently, I have not so far benefitted from the Kunming “walking” rehab program.

Thus my primary goal now is to somehow reduce my persistent, severe pain levels.

A few days ago I was speaking by telephone with my Dad, who was in the Netherlands attending an international pain research conference spnsored by the IASP.

http://www.iasp-pain.org/am/template.cfm?Section=Home

Dad is presently on his second round-the-world “pain tour” as dealing with my incapacitating pain, and no longer physical rehabilitation, has become our top priority.

I mentioned to Dad that even if I regain no motor function during my time in China, as seems probable at this point, it will still have been worth coming over here, because my surgery was pretty much a life or death situation.  Before surgery the cyst had grown 30% in the prior 18 weeks and had started to impair my breathing.  So, a few months more and who knows what would have happened.

When you live with a major spinal cord injury and suffer every single day from a combination of severe neuropathic pain + allodynia … well, as I’m sure many of my readers can relate, walking no longer seems as important anymore as reducing systemic pain to a level where you could visualise having a meaningful life.

Maybe the best way to explain how long-term pain affects your brain is to consider having insomnia for a long period of time, say getting by on just 2 to 3 hours of sleep a night.  After a while, you start to hallucinate, can barely form sentences and feel like you’re going crazy. Long-term neuropathic pain kind of works the same way. It deprives you of sleep and over time just wears you down to the point where you can barely function.

With respect to the neuropathic pain, we are getting that much closer to finding a solution to importing the reagents needed to test lithium blood serum levels. The challenge is that the lithium reagents need to be refrigerated, and we do not want them to get stuck in customs. It has been a longer process than we anticipated, but are hopeful we can start in the next month or so.

As an alternative to drugs, I will be spending the next six weeks attempting to remap my brain so that my brain interprets pain signals in a less hostile and debilitating way. In the next week or so, I will dedicate an entire blog to how I’m going about remapping my brain to down-regulate its perception of pain.

Otherwise, I believe we have narrowed down the issues I’m having with intense shoulder and neck pain radiating pain down my right arm. It looks like I may have several pinched nerves in the C5-C7  area where I had my surgery this past May.

What I am experiencing feels like a radiating hot pain from my neck down to my shoulder blade and then over to my right shoulder and down my right arm. Throughout that area,  it feels like  somebody’s taking a knife and cutting open my muscles.

When there are pinched nerves involved, these damaged nerves can actually alos weaken the muscles they control, and it feels like multiple pulled muscles at the gym. I’m working with several doctors in the United States to get to the bottom of this post-surgical injury, and if we find a solution I will follow up with e fuller account.  In the meantime, I’m still working with Ericko here in Kunming on electro-acupuncture and massage to ease the shoulder injury.

Ali Neck & Shoulder pain (1) 11-10-2013 10-40-16 PM Muscles2

I will post the Part II blog in the next few days and get into a little bit more detail about how I’m planning to shift my life focus in the months just ahead.

“Cat Poop Coffee” Welcoming Ceremony

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Welcome Suzanne Edwards and family!

Suzanne arrived last week with her mom, Liz, and her dad, Jeremy.  They arrived late Wednesday night and showed up on the 2nd floor of the Tongren Hospital bright and early Thursday morning.

Now that is what I call dedication 🙂

Suzanne and her lovely parents made their entrance into the 2nd floor rehab room accompanied by a swarm of doctors, PT’s and, naturally, Dr. Zhu Hui. The English translator who has been hired to help Suzanne and her family was not yet on the scene, so they all came directly over to me and asked that I serve as translator for the day.

All the Chinese patients’ eyes were glued on the exotic new foreign patient.  If you have not gathered from my previous blogs, foreigners in Kunming, and especially South Kunming where we live, are a pretty rare sight.  Not to mention a pretty foreign patient like Suzanne in a wheelchair!   There are now three foreigners in the Kunming walking program.

I was showing Suzanne and her family around the rehab facility when Dr. Zhu asked me to help Suzanne with medical translation for her “ASIA” exam, which is a standardised test to determine one’s level of spinal cord injury. I have to say I was pretty relieved to have brushed up on my medical Chinese the prior week.

After the ASIA test and helping Suzanne get through her medical history for Dr. Zhu’s records, the foreigners in the program were invited to a very special coffee welcoming celebration. Now, what I’m about to describe to you is completely true and definitely one of the strangest welcoming parties I’ve ever attended.

Dr. Zhu invited us over to the kitchen area on the second floor rehabilitation room for a welcoming ceremony. It is pretty much understood in China that most Westerners love coffee so, whenever Yunnan locals have the chance to serve coffee produced right here in China, naturally the opportunity is not easily passed up.

Dr. Zhu explained to us that the celebration coffee on offer for us was “made right here in Yunnan province” …. by cats!

We turned to one another other with puzzled expressions, wondering what a cat has to do with making coffee?

Dr. Zhu then went on to explain that there are very special Asian Palm Civets (essentially they look like Asian rodents but are related to the cat species) who are fed locally-grown coffee beans. Once again, we looked at each other but now with  unsettled feelings in our stomachs, perhaps sensing what might come next.

… Wait for it … yes, the coffee beans are eaten by the cats and then excreted, because these cats cannot digest the coffee beans properly.  The undigested and excreted coffee beans are then put through some kind of “purification process” before being ground up to make coffee.  Producers of such coffee beans argue that the process improves the coffee through two mechanisms — selection and digestion. Go figure!   Digestive juices of cats may improve the flavor of coffee beans for some people … but not for me!

Maybe no surprise then that the actual labeling on the package of this coffee, in Chinese and English, is “Cat Poop Coffee.”

I have to say the Edwards family were great sports, and we  dutifully drank our cat poop coffee! I could only think to myself … Wow, this is a first!  And as I do not have many “firsts” these days, well … Welcome to Kunming, Suzanne, Liz and Jeremy.

Civet1 Civet2 Civet3

I case you might think I’m making any of this up, check out this Wikipedia page and can see for yourself!

http://en.wikipedia.org/wiki/Kopi_Luwak

Now here’s a real kicker … one would think that this type of coffee would be rather inexpensive, but no, it is actually the most expensive coffee in the whole world. Cat Poop Coffee retails for US$700 per kilogram!!!

Indeed, this “coffee” has become so popular in China that there are now specialised coffee shops opening up all over Shanghai and now moving down south that devote their shops solely to “cat poop coffee.”

Care for a caramel cat poop machiato?

11-6-2013 3-15-05 AM

On an unrelated note … my dad left for Holland today to attend an international post-surgical pain research conference.  Kunming – Beijing – Amsterdam.  Good thing he’s not bothered by jet lag!

http://www.brainandpainnijmegen2013.nl/

My neck pain and shoulder pain have been getting progressively worse over the last few weeks, to the point where my productive at-screen day has been reduced to just two or three hours. My Japanaese electro-acupuncturist/masseuse, Eriko, can feel hard little balls on the left and right side of my recent surgical scar, which are presumably hardened scar tissue from the surgery. When she presses on these spots, I get a violent shooting pain down my right neck over to my right shoulder and into my scapula followed by shooting pains down my right arm. We hypothesize that several muscles must have healed incorrectly after the surgery and are now pushing on major peripheral nerves.

So my Dad has temporarily set aside regenerative medicine as he main research focus in favor of the neuroscience of pain, which is, of course, a major life quality issue for a large percentage of the SCI population, not to mention for cancer therapy survivors and millions of others.  Indeed, chronic pain is reported to affect as many as 25% of the American population.  So pain is a global issue, but the neuroscience of pain is a field of its own.  Thus my Dad has his work cut out for him!

Meanwhile, I’m working several times a week with my acupuncturist, Ericko, and I think we’re making slow progress, but I will be very excited to see what my Dad brings back from the IASP conference Holland.

For blog readers interested in pain for any reason, you might like ot have a look at the IASP website …

http://www.iasp-pain.org/am/template.cfm?Section=Home

I posted about a month and a half ago that I was about to start the China SCI lithium protocol for neuropathic pain. We are still working with the Kunming Medical School to obtain the reagents needed to test my blood serum lithium levels. However, the reagents still have not arrived!  So, when my Dad completes his second pain tour in Europe at the end of this week, he’s going to bring the lithium reagents back with him so that we can get on with this protocol in December.

Unfortunately, the severe neck pain + the persistent neuropathic pain + cripplng allodynia pretty much knock me on my butt most days, so right now I am only able to go to the gym 3 (or at most 4) days a week. Also, I’m not walking yet even though my new German knee brace works wonderfully.  The reason is that when I’m standing in the walking frame and attempt to walk, I have to push down with my elbows and shoulders in order to support and balance my upper body.  But pushing down with my elbows naturally forces all the pressure into my neck, and the shooting pain immediately forces me to sit down right away.

With that said, every day we are working on new solutions to chronic pain.

I remain confident that one day something we try will work!

🙂