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| Doing a new exercise last Wednesday! |
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| Spoiler alert! |
So here’s something I know to be true, although it’s a little corny, and I don’t quite know what to do with it: What I regret most in my life are failures of kindness.
Those moments when another human being was there, in front of me, suffering, and I responded…sensibly. Reservedly. Mildly.
Or, to look at it from the other end of the telescope: Who, in your life, do you remember most fondly, with the most undeniable feelings of warmth? Those who were kindest to you, I bet.
It’s a little facile, maybe, and certainly hard to implement, but I’d say, as a goal in life, you could do worse than: Try to be kinder.
Now, the million-dollar question: What’s our problem? Why aren’t we kinder?
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The trial we are talking about, from ChinaSCINet, is, as they say in Texas, big hat, no cattle. I know – 15 out of 20 completely injured folks with SCI for at least a year were reportedly able to walk using rolling walkers and “minimal assistance.” Sounds pretty cool, and indeed it may be so. But at this point – it’s a Phase II trail, and still pretty early in the process of evaluating a therapy – the work is a promise, based on unblinded, expectant anecdote; once it gets peer-reviewed and therefore validated by publication in a medical journal, and perhaps even duplicated by others, then we can take it seriously.Maybe a little cynical, but necessary and crucial to keep in mind. It's easy to rush to judgment and jubilation, but didn't The Beatles sing about "The Long and Winding Road"? (I'd sing, but no one wants to hear that.)
The China trial wasn’t reported by me or the mainstream science press because there was nothing else to go on but a press release. Less than an inch away from the web link to the release is a “donate now” button. Might the two be related?
So, how does this technology work?
I have a tablet PC attached to my power wheelchair. This tablet, my command center, sits about 18 inches from my face. At the base of my tablet, I have a black bar that houses infrared cameras that track my pupils. From there, I have a toolbar on the right side of my tablet screen that has mouse commands: left click, right click, double click, etc. So, I look at my on-screen commands for half a second, and those commands select. Then I look wherever I want to click on screen. For example, if I want to minimize my Spotify application, I look at the "left click" command, then gaze at the app's minimize button. If I want to read today's MMQB column, I select the scroll button from my on-screen commands, then gaze at an area in the column. The technology senses where my eyes are as I read, and automatically scrolls down the page accordingly.
Sweet, right?!
It works the same way with my keyboard. This is how I speak: I type whatever nonsense comes to mind, click "speak," and a synthetic voice that sounds hauntingly like my old voice belts out the nonsense for all to hear.
I can crank out about 20 words per minute. For 4,500 words, that's almost four hours to finish this column.
The team based in Kunming have completed a clinical trial assessing effects of umbilical cord blood mononuclear cell transplants in 20 subjects who averaged 7 years after complete spinal cord injury. The subjects received intensive walking training for 3-6 months. At 6-12 months, 15 of the 20 subjects (75%) could walk in a rolling device with minimal assistance. Another 2 subjects could walk without any assistance using a four-point walker. These results are much better than expected.This obviously is encouraging news. I personally fit right into that description, and the therapy I currently do lines up very closely with the exercise-based intensive walking training the trial participants are doing. Just gimme some baby blood and I'll be good to go!
The following caveats should be kept in mind. First, these are preliminary results from Phase II clinical trials that must be confirmed in Phase III randomized controlled trials. Second, it is not clear whether intensive locomotor training, “untethering” surgery, cell transplant, or a combination of the three therapies are responsible for the observed walking recovery. Third, while the subjects showed improved walking and descent of sensory levels, they did not show much improvement in their motor scores.Of course, caveats. Bunch of party poopers. With so many variables involved in the therapy, though, it difficult to tell exactly what is working and what is not. So what's next?
ChinaSCINet proposes to carry out a multicenter Phase III clinical trial in China. This trial will test 120 subjects with chronic complete spinal cord injury, randomized to four groups with different therapies: untethering surgery only, surgery plus lithium, surgery plus transplant, and surgery, transplant plus lithium. All subjects will undergo 3-6 months of intensive locomotor training and then assessed for 2 years.So maybe I will move to China....OK, maybe not, but this progress is exciting.
This trial (called CN103) will be the first surgically controlled clinical trial to assess a cell transplant therapy. It will provide definitive answers to three questions. First, does transplantation of umbilical cord blood mononuclear cells improve walking recovery compared to surgery alone? Second, does surgery and lithium improve walking recovery compared to surgery alone? Third, does lithium improve the effects of the cell transplants on walking recovery?
This trial should have a very substantial impact. If umbilical cord blood mononuclear cell transplants improve walking recovery, China will be the first in the world and in history to show a therapy that restores function in chronic complete spinal cord injury. The trial may show that intensive walking training and “untethering” surgery improve walking in people with chronic complete spinal cord injury. This would also be very worthwhile.The moon!
Many people are waiting for therapies to restore function. Some have died while working for the cure, including Christopher Reeve and Bun Tsai. The trial provides hope to millions of people worldwide who have been told by their doctors that they should not expect to walk again after spinal cord injury. Restoring walking on earth is a greater achievement than walking on the moon.
The DOD awarded the two-year, peer-reviewed grant to the Reeve Foundation’s North American Clinical Trials Network (NACTN), a consortium of university hospital neuro-surgical and neuro-rehabilitation teams to bring promising therapies into clinical trials. Led by Dr. Robert G. Grossman, professor of neurosurgery at The Methodist Hospital Neurological Institute in Houston, NACTN gathers and documents patient medical information in a data registry to better understand the body’s natural course of recovery after injury; uses standardized patient assessment protocols and develops new ones; and conducts new trials of therapy for spinal cord injury.It's clear some combination of public and private financing and cooperation will be necessary to make spinal cord injury recovery a reality - the $$$ just isn't there without the help of the federal government. Glad to hear they'll take a break from reading our emails and do something helpful :)!
My studio practice has, for sometime, centred around finding ways to understand and represent my embodied experience as a wheelchair user, opening up profound issues about methods of self-representation and the power of self-narration in challenging the nexus of power and control that created the ‘disabled’ as other.Taking the power back! A worthy mission indeed, but um...couldn't you have chosen something a little less death-defying?
Most talented amateur boxers turn pro with dreams of fame, fortune and title belts. New Yorker Boyd Melson's aspirations are slightly different. The 31-year-old boxes for his "soul mate," Christan Zaccagnino, who was paralyzed from the neck down in a diving accident at age ten. Melson donates every dollar he earns in the ring to spinal cord research with the hope that modern medicine will discover a way for Zaccagnino to walk again. A West Point graduate, he maintains a grueling schedule to train while working a typical nine-to-five office job. REAL SPORTS correspondent Frank Deford visits with Melson and Zaccagnino to learn more about this amazing tale of love and devotion. To contribute to Boyd and Christa's cause, please go to http://www.justadollarplease.org.Some more cool news: U of M is starting a clinical trial using human neural stem cells injected straight into the spinal cord to attempt to halt the effects of Lou Gehrig's Disease, or ALS. This is huge! As a U of M Phi Delt, this is even more special - Lou Gehrig was a Phi Delt in his day and the U of M chapter raises money every year to benefit ALS of Michigan.
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| I think we've found the sizzle. |
