Walking Yesterday

Had a great workout on Monday. I feel like my posture has improved and my back is straighter. Good stuff!

Therapy Photos and Your Sunday Inspiration

Just hanging around! Doing some tricep dips, coupled with some assisted standing to get my full body weight down through my feet. 

Some posture work. We mix in arm lifts and various other tortures as well. Fun!

This story on ESPN is terrific. An ESPN producer revisits a story she did in 2009 on two Akron, Ohio teenagers, each struggling with their own disability but bonded together as friends because of it. She stayed in touch with them, and to see the transformation and success in their lives since the original piece aired is pretty remarkable. Enjoy!

Shark!

Curious about what it might look like to be at the receiving end of a hungry shark? No? Yeah well, me neither, but this footage of a shark feasting on mostly bait but also an underwater camera will give you an up-close-and-personal glimpse at a Mako shark at dinner time.

Golfers Will Love This

Rory's got a bit more personality than, say, Tiger.

Happy 4th!

Rain on the Stem Cell Parade

This blog post, "China SCI Study: Premature Mid-Trial Speculation", from the Christopher & Dana Reeve Foundation, keeps an instructive point in mind, regarding the encouraging news out of China I posted on recently:

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.

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?
 

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.)

So be encouraged, but remember that there's a still a bumpy, possibly pot-holed (it's Michigan, so definitely) road ahead.

Living with ALS

 I enjoy Peter King's NFL columns in Sports Illustrated and on si.com. Over the summer, he's having several guest writers, one of which was Steve Gleason, a former New Orleans Saint who has been battling ALS for over 2 years. His guest column is funny, tragic, introspective, and above all, a fascinating look at how to live life when you can only move your eyes.
A sample:

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.

He references The Diving Bell and The Butterfly, a terrific movie about a man with locked-in syndrome:

Clinical Trials in China Yielding Promising Results

The China Spinal Cord Injury Network (ChinaSCINet) recently conducted Phase II clinical trials that suggest umbilical cord blood mononuclear cell transplants and lithium can regenerate and improve recovery in people with chronic complete spinal cord injury.

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.
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?

So maybe I will move to China....OK, maybe not, but this progress is exciting.

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.
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 moon!