“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.

🙂

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.