Merry Christmas!

Video Update: Standing, No Help and Almost No Hands!

Video Update for December 2018: Standing with no help and almost no hands!  I'm seeing more muscle activity returning all the time, and hope to have more functional changes soon.  More to come.

June 2014 Throwback

The newest video on my YouTube channel is by request.  It’s actually one of my oldest walking videos.  It was taken in June 2014, and shows the original KAFOs I used.  They were molded from heavy plastic with metal drop locks on the knees.  The knee joints dropped into a locked position when they were pulled straight.  There was a large metal loop on the back of each knee to activate the locks. 
This video shows the complete “Up and About” system.  It has a bracket between the tops of the legs, helping with reciprocal gait without allowing too much swing.  The thick belt (which I did not end up using) is for better hip and lower-back control.  The Up and About bracket and belt just attach to the tops of the KAFOs.  In my case, that worked great: we took off the belt and then the bracket, and even removed the metal loops so that the knees would no longer lock.  KAFOs usually have knee locks of some kind, but do not always have the bracket or hip belt; that’s specifically the Up and About.  
Note: If you’re considering KAFOs but have not been on your feet in a while, please be careful to work slowly at first.  Standing after sitting a long time is wonderful for your health and (I think) absolutely worth it, even for short periods.  But it can be dangerous if you aren’t paying attention: e.g., blood pressure changes, possible falls, or osteoporosis  (poor bone density, induced by spinal cord injury, can lead to broken bones).  I support walking when you can, and am happy to talk with anyone interested in using KAFOs or leg braces.

Bride Walks Down the Aisle

Good story!  And a lot of hard work.

New Therapy Techniques

This article on teenager Connor Walker's recovery mentions some interesting new techniques: use of a bionic exoskeleton, low-oxygen therapy, virtual reality, and reaction to music.  The combination looks pretty unique, and may be very promising. 

Video Update and Thank You to Biofit

A video update.  I’m holding my own on the rowing machine now, literally: keeping my legs where I want them and using them to help push backward.  This is a work in progress, but when I began working on a stationary rowing machine, I had to have help steadying my knees and ankles.  Certainly an improvement!

Also, since this is a time that is meant to be dedicated to giving thanks, today I’d like to express particular thanks for the wonderful physical therapists at Biofit.  It isn’t easy to find therapy, much less years after an injury that is thought to be so permanent.  But from the time I walked into Biofit, the therapists and personal trainers there have been up to the challenge of pushing for more.  I’ve been extremely grateful for their skill, experience, creativity, and positivity.  Thank you to Justin, Shannon, Kim, and everyone else who has been part of my ongoing recovery!

Veteran's Day

Thank you, veterans!

Video Update, October 2018

The video I’m posting today shows an interesting difference of “mind over muscle.”  One focus I have right now is dropping to AFO braces only, which means activating knee muscles that have not been strong enough to move out of KAFOs.  In the first half of the video, you can see that I'm working more on distance and movement.  In the second half, there is more concentration on a very specific motion: pushing forward and keeping my left leg in a straighter step pattern, even if it takes more time and effort. 
We don’t usually think about slight differences like this, but I thought this video demonstrates how much they actually matter.  Typically, it's not this easy to see a small change of focus playing out. 

Recovery Story: Nick Aguayo

A quick link to a good story about Nick Aguayo, a high school quarterback who's back on his feet.

A Note from Archaeology

A unique article on a unique topic: "Mummy of Paraplegic Child Shows How Peru's Nasca Culture Treated Disability."

"Cervical Neural Circuits" (i.e., Helping People Breathe)

A discovery that could change many lives for the better: researchers have found a way to stimulate dormant neurons in the cervical spinal cord.  Even though these neural circuits are not necessary for breathing before a neck injury, they can help restore the ability to breathe after they are activated. Breathing is easily lost due a cervical injury, so this study represents a very big deal.  Hopefully a next step can involve helping people with high-level SCIs to breathe without ventilator assistance.

Video Update (Sept. 2018)

Another milestone!

It’s funny to think how different the idea of milestones comes to be with this injury.  Little tasks, once so simple, suddenly seem impossibly big.  I had one of those little milestones this past week, discovering that now I can kick my left foot up against gravity, and can even hold it up a bit (video proof)!  Before you dismiss that exclamation point (!), try lying on your back and holding up your foot without using any of the muscles in your lower body.  It can’t be done — at least not by most of us, although many of us with SCIs have tried it . . .

This is one of those small celebrations that portends a large change for the better.  Five years in, I am very grateful to be seeing these changes.  It is easy to feel worn down by ongoing physical therapy and the demands of spinal cord injury in general.  However, it is easier to forget that many others do not have access to any therapy, or if they do, that they do not see ongoing changes for the better.  Having had a “hopeless” prognosis and then multiple broken bones since the initial accident, I truly sympathize with the feelings that go along with either the lack of good news or the delivery of bad news.  Be thankful for what you can do and what you have!  Someone else has a worse situation than yours or mine. 

More to come.

Stimulator Study in KY

An exciting development out of the Kentucky Spinal Cord Injury Research Center in Louisville, Kentucky, where researchers are seeing success with implanted stimulators.  Some study participants are back on their feet and learning to walk again.  These studies, which involve implanted epidural stimulators together with extensive physical therapy, are aimed at regaining function where there was none.  They're already changing lives.
Complete or incomplete injury, people need to see these stories in the news.  Hope is a healthy habit, especially after a spinal cord injury.

A Short Note on SCI Awareness

September is designated Spinal Cord Injury Awareness month.  With all of the statistics passed around in September, it's startling to see how many lives are affected by SCIs.  However, what's more startling is how much an individual life is changed by a spinal cord injury.  This type of injury is so small, but leaves such a big impact. 
We can all learn a lesson from being aware of SCIs: little things may have huge repercussions!  No matter how the injury happened, a relatively tiny cut or bruise in the spinal cord counts for a lot. 
So too does every step forward in recovery. 

Stairs with KAFOS

Joe Kals, a paraplegic, is using KAFOs to take the stairs (and stairs and stairs):
“Paraplegic man continues to defy odds by climbing 10 floors of Marriott Sand Key Hotel”
He's done the stairs before — when he climbed the Eiffel Tower. 

More Video Exercises (August 2018)

More core exercises!  Pulling cables again. 

Video Update (August 2018)

More core exercises and legwork: pulling cables while standing. 

3D-Printed Neurons

Coming back to 3D printing.  Last year I posted about designs for printed KAFOs (see posts from April 20, 2017 and May 15, 2017).  Now researchers are printing “neuronal stem cells derived from adult human cells on a 3D-printed guide” (quoting from study co-author Michael McAlpine).  That’s a mouthful.  What it means it that 3D-printed cells are put on top of a silicon 3D-printed guide, then the guide is surgically placed in the injured part of the spinal cord.  The guide is a bridge across the injury site.  If nerve cells above and below can connect, there is a good possibility that the living cells will work together for more recovery. 

Competing with Blue M&Ms?

Two notable studies on SCI treatment have been featured in the news lately.

In the first study, scientists looked at how neurons are excited by epidural electrical stimulation (e-stim).  They wanted to find a way to simulate the same motor effects through chemical compounds.  The team tried injecting mice with different compounds for 8-10 weeks.  One particular compound, CLP290, helps to produce a certain protein linked to neuron response.  According to this Newsweek article, 80% of the mice injected with CLP290 “were able to take steps after four to five weeks of treatment.”  It is possible that injecting CLP290 into the bloodstream after a spinal cord injury could have positive effects for humans, as well.

The second study has to do with an enzyme that reduces post-SCI inflammation and scarring.  Injecting the enzyme as soon as possible after the injury may mitigate secondary damage.  Less inflammation (for example) means less tissue damage, meaning more cells can survive — and meaning more potential recovery.  Five days of the treatment “resulted in significant functional recovery” for the mice who were injected, explains researcher Angela Ruban.


Progress on both counts - although if you're invested in the 2009 study on Brilliant Blue G and SCIs (popular with many!), it probably isn't the time to stop eating your blue M&Ms just yet.  

Core Exercises and Video Update (July 2018)

I've been trying new core exercises recently.  One of them is working with an exercise ball.  This helps build abdominal and back control around/ below the injury site, but it also has a good effect on leg muscles.  Exciting to me that there are more leg muscles responding!

Core exercises focus on the area around your spinal column.  They are actually recommended for just about everyone.  These exercise suggestions can fit into many workout routines, but are geared toward people who are in rehabilitation from back injuries.

Developing an exercise regimen can be difficult for anyone.  After a spinal cord injury, there are many extra factors to consider.  Mobility limitations, poor bone density, and improper temperature regulation are a few examples.  But beyond that, how can you build on what you have?  Flexing counts as an exercise.  Staring at a toe and willing it to twitch counts as an exercise.  What big or small abilities will help you reconnect neural pathways?  Do you have equipment at home?  Be creative but cautious (this is not an endorsement, but one of my earliest exercises was standing at the kitchen sink with my knees blocked: see my earlier post entitled "The Benefits of Standing," dated January 26, 2017).

If you are coming back from a spinal cord injury and need more specific ideas, this link leads to a resource on getting back to exercising after a spinal cord injury. 

"Followers" Feature

A development on layout: readers have asked if it is possible to become a follower of my blog.  I have just added a new feature that appears in the upper right-hand corner of the page.  Please consider becoming an official blog follower by clicking the "Followers" button that appears there.  Suggestions and comments are always welcome!

More about HAL

A few weeks ago I posted information on Cyberdine’s device HAL (the Hybrid Assistive Limb), which is being used in Seattle at Swedish Medical Center.  Thank you to Yoshi, who brought to my attention that the Brooks Cybernic Treatment Center in Jacksonville, FL uses HAL technology (click here to watch a short video on HAL in action there), and who also provided a helpful link to a more in-depth article about HAL.  In my mind, one of the greatest points about the device is something also noted by the article’s author, Elliot Gardner: “[T]he end-goal of HAL is that the technology is not needed at all — the aim for treatment is for there to be an increase in patients’ function without wearing the HAL exoskeleton, rather than having to rely on it.”
I'm legitimately excited to learn about this technology as it is developing and am pleased to see that is is becoming more available.  It represents a welcome attitude toward what can be accomplished after SCIs.  We’re not talking about a simple list of outcomes or limitations for what life “will be” post-SCI.  Instead, this is about improvement and challenging expectations.  Gardner’s explanation of the end-goal for HAL shows how the device is particularly geared in this direction. 
And that is indeed a huge stride forward for rehabilitation after spinal cord injuries.

Recovery Story (Julian Susa)

"Medical Miracle: Man Paralyzed in Diving Accident Walks Again."
Great headline to see!  The recovery story of Julian Susa, injured in 2016.

Walking with KAFOs (Lauren Rose)

When I saw this video of Lauren Rose walking with KAFOs, it brought back a lot of memories of starting out with orthotics.  What Lauren is doing three years after her spinal cord injury is supposedly impossible.  SCIs aren't easy, spinal fusions aren't easy, and KAFOs aren't easy.  But if Lauren's progress doesn't speak for itself, here's a quote from her: "Being able to move, exercise, and be healthy is such a blessing.  Love the process and be grateful for every step along the way.  It's a slow process but quitting won't speed it up.  You have to believe in what you pray for." 
Although getting beyond locked-knee long-leg braces has been a difficult journey, it has been well worth it every step of the way.  I'm really glad that Lauren has not given up.  It is great to see that she is truly making progress and encouraging others to push forward, too. 

Ongoing Recovery Story: Tony Davis

An encouraging story about athlete Tony Davis, who suffered a spinal cord injury in 2005.  He's not only walking, but is back to pitching for his baseball team. 

Independence Day

Happy Fourth of July!  Thank a veteran today.

Standing Progress (Video Update)

An update on my progress.  My balance while standing has improved quite a bit (compare this March video).  In the first half of this new video (June 2018), I'm able to move around much more easily - and in the video's second half, trying something new: working on a tilting balance board!
P.S. Thank you to Justin and the rest of the wonderful staff at Biofit!

After Many Miles of Walking . . .

Well, there goes another pair of shoes!  

Five Years Today

Today marks five years of fighting a spinal cord injury. Always a step further.  Thank you to everyone who has helped along the way!

Video Update: Porch Swing

A new first this month: back to moving a porch swing without help.  It’s hard not to let your body compensate with other muscles, but this is definite progress.

It is also another reminder that almost anything can be used for careful and creative physical therapy.  I sometimes think that I have used just about every type of home device or activity for rehabilitation - including the kitchen sink (literally).  Trying the porch swing was inevitable.

About the Spinal Cord

Most people have a basic idea of what the spinal cord is, but it is not uncommon for them to ask more about it.  Your spinal cord is about a foot and a half long and runs down the center of your backbone.  Protected by bone and tissue, it carries nerve signals for reflexes and movement.  Injuries to the spinal cord occur in any of the four main regions of the spine: cervical, thoracic, lumbar, and sacral.

Cervical segments of the spine control your head through your hands.  The thoracic region covers the bulk of the upper body, ranging from the upper to lower back.  Chest and abdominal muscles are included in this area.  Lumbar nerves control hip flexors, quadriceps, and other key muscles of the lower back and legs, extending all the way down into the toes.  Sacral nerves reach down the back of your legs into your heels and feet.

In short, the spinal cord is an integral part of your nervous system.  When it is damaged, bruised, or disconnected, there are serious consequences for your body.  Injuries can affect or impair the performance of any nervous function at or below the injury site.  Enabling mobility is only one task of the spinal cord.  Your body relies on your spinal cord for healthy internal functions and responses. 
Still curious?  See more on spinal cord anatomy here.

HAL in 2018

Assistive devices have been gaining a lot of ground recently - literally, in some cases.  HAL, a “hybrid assistive limb” developed by the Japanese company Cyberdyne, is one of the latest of these devices.  However, HAL is a bit different from most robotic legs.  Instead of walking for you, it relies on your brain to do the work.  HAL is designed to respond to the wearer’s intended motion.  This means that when you think about wanting to walk, sensors connected to HAL detect signals sent from your brain to the muscles that are trying to help you take steps.  When the robotic legs walk with you as your brain sends the signals, the correct signals for your own walking are reinforced (see a visual at Cyberdyne's website here).

This is a way of taking bio-feedback to a practical level.  Part of the challenge in recovering from spinal cord injuries is retracing neural pathways.  The brain needs to be guided back to finding the correct responses.  In other words, when you see your limb moving as you are commanding it to move, your brain comes closer to detecting what signals actually make that movement happen.   

HAL has just recently been tested in the United States.  It was approved for use by the FDA in December 2017.  Swedish Medical Center in Seattle is the first place to try HAL, and users there have seen good results so far.  The trend is likely to continue.  The more this type of technology becomes available, the more potential for neurological improvement and recovery after SCIs. 

Graduation Note

A short note of congratulations to graduates Ty Williams and Greg Murphy!  Each one has a spinal cord injury but used leg braces to walk across the stage for his diploma.  Much harder than it looks. 

Video Update

A video update (May 2018): walking outside

April 2014 vs. April 2018

The road to recovery after a spinal cord injury can seem very long and arduous.  Time may fly when you’re having fun, but it can also fly when you’re frustrated.  It is not always easy for others to understand that the injury has not gone away, even though time has passed.  Likewise, it is not always easy for someone with an injury to remember that others do not live the daily details of spinal cord injury.

What about living with a spinal cord injury?  For most people, a SCI affects everything.  I am very grateful to see returns coming more than four years after the initial accident.  Still, even with such return, functional changes do not necessarily come quickly.  In the meantime, there are many unseen issues to be dealt with - for instance, temperature regulation, especially as the weather grows warmer; skin protection, since blood does not circulate properly and tiny scratches can become problematic; or osteoporosis, when lack of weight-bearing or body function/ awareness causes bones to become weak.  Temperature problems mean being careful to avoid heatstroke or frostbite in the most unlikeliest settings.  Skin care involves being aware of bunched clothing in the day and getting up every few hours to move around in the night.  Osteoporosis potentially leads to broken bones.  (Unfortunately, I have more to say about that: another post and another time.)  Temperature, skin, and bone concerns are only three of those that come with a spinal cord injury.  Others are much more personal and require time, energy, and attention to scheduling.  In other words, mobility is one challenge among many.

No, the point of this particular post is not to a) frighten, b) discourage, or c) disappoint.  It is d) none of the above.  I hope that this blog offers realistic information and practical insight about these challenges.  Awareness goes a long way.  I always intend each post and every part of this blog to be a source of evidence-based encouragement.  Toward that end: it has been a while since a compare-and-contrast post.  Exactly four years ago, I was learning to take small steps backward (on carpet) using ACL leg supports and a rolling walker.  Backward movement was easier and my hip muscles were only beginning to respond again.  Today I walk at least a mile each day, and am on the cusp of switching from long knee brace and ankle brace to AFO/ ankle bracing only.  Every day is another step in the right direction.

Boston Marathon Afterthought

Thomas Smith (paralyzed three times and walking again; see previous post) finished the Boston Marathon as planned!  26.2 miles. 

Standing Exercises (Video Update)

Another recent video.  While my knees and lower body in general are coming back, progressing out of leg braces to standing without support has been very tricky.  What this video shows, I think, is that I'm edging closer to the goal of standing hands-free - and ever closer to dropping the braces.  I do have some lower leg support here, but it is a) at the shins, and no longer above the knees; and b) more minimal than it has been. 

Ty-Juan Preer, Taking More Steps to Recovery

Last year I linked to the story of Ty-Juan Preer, learning to walk again after a spinal cord injury.  As a follow-up, Ty-Juan is now 11 years old and making good progress. 

Video Updates

Two video updates from this last week.  My proprioception (sense of awareness, as described in an earlier post) and strength keep improving, making for smoother and more confident movement.  These videos show that clearly with ongoing progress from earlier updates: first, with hands-and-knees activity like crawling; second, with the ability to get down onto my stomach and then back up to hands and knees without help.  More to come!

Three Injuries and Up Again

Three spinal injuries and battles with paralysis?  Recovery is a pretty good reason for Thomas Smith to go back to the Boston Marathon. 

Amit Goffer's ReWalk

This Newsweek article is actually an excerpt from a recent book.  Here, author Avi Jorisch tells the story of Amit Goffer, who was paralyzed in an ATV accident in 1996.  Eighteen years later Goffer completed the first ReWalk.  In simplest terms, the ReWalk is an exoskeleton which allows users to stand and walk with crutches.  It offers mobility and potential health benefits to many people with spinal cord injuries or other types of paralysis.  Although a higher-level injury prevents him from using the ReWalk, Goffer continues to invent technology that will help others stand and walk.  It is good to hear that he himself has finally been able to stand again using his recently-invented UpNRide device.

Court-ing Recovery

My latest link to a recovery story: Anthony Hodges, paralyzed two years ago and back to playing college basketball!

Crawling (Video Update)

Crawling, forward and backward. 

Using Leg Braces to Cross the U.S.

Having used KAFOs (long leg braces) in everyday life for many hours and for many miles, I truly appreciate this article.  Joe Kals has used leg braces for many things, including climbing the Eiffel Tower and completing a seven-month walk across France.  He's now asking for support to accomplish a walk from New York to Los Angeles.

Still Valentine's Day

A Valentine's Day surprise for Sara Conchieri, who was injured in December 2017 and has been in recovery since then.  Her friend spread the word that she would like some encouraging cards - and the results are still coming!  This was a nice story to see.  Please don't forget to think of Sara as February moves on.

Hands and Knees (Video Update)

As mentioned a while ago, I recently came back to official physical therapy after a four-year gap.  With a spinal cord injury, it is all too common to be released from therapy and told to expect no more progress.  (On that note, another thank you to everyone who is helping with my uncommon return to active therapy!)

Lately I’ve had opportunity to work on balancing on my knees.  This week with therapists spotting I was able to go from hands and knees to elbows and knees to my stomach, and them from my stomach all the way to kneeling on my knees against a chair - without assistance.  If all of that sounds small, imagine what it means to accomplish it when you once had no motion or response below the waist, a spinal fusion, and doctors’ certainty that you would never have any movement in your legs again.

So to quote Sir Winston Churchill again:
“[N]ever give in, never give in, never, never, never, never - in nothing, great or small, large or petty - never give in except to convictions of honour and good sense.”

Brain-to-Toe Connectivity

A headline worthy of more attention: "Half of spinal cord injury patients may still have some connectivity, Australian study finds."

Proprioception - Finding Yourself?

In recent years I have put a lot of thought into the intricate connections between the brain and neural receptors.  In particular, when sensation (feeling) is limited or lacking, it can take quite a bit of effort to find the different parts of the body.  Movement is very challenging when your brain is not sure where it can even locate your limbs.
For this reason, at least for me, learning to walk again has involved visual coordination.  It is not uncommon to see people with spinal cord injuries using mirrors when they exercise or undergo therapy; this is to help them see what is where, so that they can try to connect what they are seeing with what they are doing.
The body’s ability to find or detect itself is referred to as proprioception (proprio- from the Latin proprius, “own;” -ception from the Latin capio, capere, “to take”).  If you can tell where your feet or arms are without looking, then your body’s sense of self-awareness is probably just fine.  With poor proprioception, you may have to help your limbs along by watching where everything is.  Keeping a light on or using a mirror can be important for regaining proprioception and retraining the brain.
Why is proprioception on my mind (pun intended)?  Because I’ve recently been watching as my brain and body really begin to reconnect.  The process has not been easy and certainly has not been intuitive.  Besides looking in the mirror or staring at your feet, there are other ideas for carefully encouraging proprioception or testing brain-body awareness: using textures to try to realign sensations (e.g., rubbing a cloth against your face and then your foot, or beginning at a place where you have functional sensation and working downward/ outward into those where you do not in order to create a continuous sensory pathway), gently putting warm or cool water against different areas on the skin, deliberately thinking through certain movements to remember and “feel” them, and researching muscle groups and mentally “mapping” them, to name a few.
Maybe proprioception is simply a new word for your vocabulary.  Whatever the case, it’s more important than we usually realize, and has more impact than the impression it can make on your Scrabble score!

Recovery Story, In Progress

This is one of the best types of story to post.  Casey Henderson suffered a neck injury while playing football, but it looks like he is now on his way to recovery.  He was able to surprise his team by standing and walking at their state title game.

Recovery Doesn't Have an Expiration Date

Six years after Andrew Meas was left with a spinal cord injury, training with spinal cord epidural stimulation (scES) has helped him to stand and flex his knees.  Most encouraging is the fact that he is now able to stand without use of the stimulator.  This research is being conducted by Susan Harkema at the University of Louisville (Kentucky) and demonstrates that there can be returns of function long after the two-year window often cited for recovery.

NeoMano Robotic Glove

Here is an invention that could help many people with limited hand mobility.  The NeoMano, a robotic glove, is designed to be worn over the thumb, index, and middle fingers.  Through a two-setting controller, the wearer can use the glove to either grip or release.  NeoMano’s designers apparently hope to have the glove on the market sometime in 2018.
See more on the device below:
CNET: "NeoMano robotic glove helps paralyzed hands grip again"
MoneyControl: "CES 2018: A robotic glove to bring functionality back for paralysed patients"

FES Bicycles and IPG

Whatever the level of SCI, it is always difficult to find ways to exercise after a spinal cord injury.  A popular idea for promoting lower-body activity is the use of an electrical-stimulation bicycle (FES bike, specifically).  Speaking from personal experience, this does not work for everybody.  If the injury affects or impairs response to e-stim, then FES is not a feasible or readily workable option.  This article follows up on a 2016 overground race that involved "implantable pulse generators" (IPG) to help participants power FES bikes.