Progress Update (Video Series)

It's been quite a while since my last post, and many people have asked about my personal progress.  With SCI, I find that it can be hard to describe small changes that continue to occur over time.  One of the reasons is that the changes that happen often have to reach a threshold where they become functional and noticeable.  I am continuing to have little improvements in sensation and muscle response, and am thankful for them, as well as for my friends and others who keep asking about progress.  God has been good to me.

Another reason for less visible progress is the normal wear and tear that come along with ongoing physical therapy and SCI.  For me, the repercussions of intense musculoskeletal damage aside from SCI are an issue.  Other people experience similar struggles after traumatic physical injuries.  Please remember us in your thoughts and prayers!  SCIs do not stop with an initial injury.  

Because two of the main purposes behind this blog are to encourage and educate others, I'm posting some new videos to illustrate my progression since 2013.  The first video shows May through July of 2014.  This is close to the very beginning of when I started getting back on my feet, and I could only move backward at first.  Please stay tuned for post-2014 videos in the coming days.  As you'll be able to see in the various clips from 2014 to 2021, I've used many different types of devices and bracing.  My hope is that adding these images to my YouTube channel helps viewers understand the world of SCI a little more.  And, as always, thank you to all who have offered your prayers and support!  More to come.

Virtual ConQuesT 52

Thank you to the ConQuesT 52 organizers and members for the opportunity to join the "Writing When Life Rolls Over You" panel this past weekend!  ConQuesT, "Kansas City's Original Science Fiction & Fantasy Convention," takes place every Memorial Day weekend.  The weekend's theme, "The Future Is Now (and Then) . . . ," was a great reminder of science fiction's ability to take us in many directions at the same time.  

Looking in many directions at once was a major aspect of the panel's discussion.  What do you do to keep writing and to stay focused in the face of adversity, daily obstacles, and time constraints?  Since dealing with a spinal cord injury involves a special degree of prayer, innovation, flexibility, and support, I felt right at home with the panel's topic.  Thanks to my fellow panelists Rosemary Williams and Lynette M. Burrows for sharing their tips and strategies!

Exoskeletons Improve Mobility (A Recent Study and A Future Outlook)

Exciting research!  This study set out to learn how many exoskeleton training sessions are necessary to help users "gain adequate exoskeletal assisted walking skills and attain velocity milestones."

Researchers offered participants the opportunity to use the Ekso GT and ReWalk.  Even 12 sessions made a positive difference for about two-thirds of the participants.  After 36 sessions, over 80% of everyone in the study had met the goals originally set by the researchers. 

Importantly, the study again indicates that exoskeletons can improve users' mobility overall.

According to Dr. Gail Forrest of Kessler Foundation:

"Participants showed improvement regardless of level of injury, completeness, or duration of injury . . . indicating that exoskeletons can be used to improve mobility across a broad spectrum of individuals with neurological deficits caused by spinal cord injury."

The United Spinal Association has a free resource with information about several exoskeleton types and availability for users with SCIs.  A 2020 article on The Spinal Cord Injury Zone discusses some of the exoskeletons' designs, limitations, and possible benefits.

From another perspective, outside of the world of spinal cord injuries, exoskeletons may be set to transform life for virtually everyone.  Several of those who have founded related start-ups estimate that the technology will be "commonplace" in ten years.  That's an impressive footprint — literally.

Using KAFOs and a Mobility Scooter (Video)

Today's video is posted in response to a question someone asked about mobility.  When starting to use KAFOs (knee-ankle-foot orthoses) and trying to navigate a college campus, I was blessed to be provided with a mobility scooter.  This video shows how well the KAFOs worked with the scooter, even when I was relatively new to long leg braces.  Between the two, I gained an immense amount of independence.  (This clip is also featured in my video "6 Years in 6 Minutes," where you can see how the scooter works similarly outside on different surfaces.)

Scooters are not always an option if you have a spinal cord injury.  I could not have used one in the first year post-SCI due to the extensive spinal damage caused by the original accident.  As time has passed, a scooter has been a great device for me.  It's especially nice to be able to swivel the seat and not have to avoid a footrest when standing.  The scooter is easier on the wrists and shoulders than a manual wheelchair is, and can go over more terrain without trouble.  Several types of scooters give increased accessibility because they are smaller, as well.  The prices of scooters vary widely and you may find foundations or other groups able to help with the cost.  

A scooter is not an option or best choice for everybody with an injury or neurological condition.  Obviously each user who does try a scooter will find disadvantages and advantages for the individual situation.  But for those who are curious about life with KAFOs and wondering about possibilities, maybe this video will be a help.  

Note: if you have a spinal cord injury and are considering a mobility scooter, make sure to research the size and padding of the scooter's seat and foot area.

Getting KAFOs/ Long Leg Braces after Spinal Cord Injury

Today I'd like to share information about the process of getting KAFOs (Knee-Ankle-Foot Orthoses).  As usual, nothing here reflects a medical recommendation, professional opinion, or endorsement.  Note also that I receive no money or compensation for any of the products named.  I write about my own experiences and hope that they encourage others to keep moving forward.  Please seek advice from medical professionals and physical therapists. 

With that disclaimer, if you want to know more about KAFOs, where to start?  If you're like me and you have a spinal cord injury or similar neurological condition, or if you know someone who does, you may already have passed time surfing the internet.  I spent hours doing general research about leg braces.  There are a lot different types of bracing to help with therapy and functional walking.  HKAFOs (Hip-Knee-Ankle-Foot Orthoses) extend up around the hips and include a belt or back bracing, KAFOs generally run from mid-thigh down, and AFOs (Ankle-Foot Orthoses) are used for bracing below the knees.  (To learn more about types of leg braces and to see pictures, click here.)  Within these categories, realize that braces provide varying levels of support.  They may be sturdier for users with very little muscle function, or be relatively lightweight, intended to offer supplemental support for toe droop or knee buckling.  Newer models of some of these braces are mechanically assistive with springs, or feature robotic stance control that responds to muscle movement. 

Over time, I've tried HKAFOs, KAFOs, and AFOs of multiple types (thank you, Hanger!), including stance control C-braces, polypropylene plastic and carbon fiber AFOs, thermoplastic heavy-duty KAFOs, modular KAFOs (my name for the Allards Combo brand), and (H)KAFOs with a hip belt and the Up and Go bracket system for gait stabilization.  I consider myself blessed to have had the opportunity to experiment with various kinds of bracing.  Sometimes braces have to be fitted directly for the user and cannot be used on a trial basis, or are too expensive and rare for clinics to have on-hand.

To schedule an appointment with an orthotist, I had to have a doctor's written approval (a scrip).  Insurance wants the document to show that braces are medically necessary or beneficial for your health.  I talked with my insurance provider directly and asking about leg braces as authorized Durable Medical Equipment.  I would suppose that spine centers or specialty clinics devoted to SCI rehab have standard ways of doing all of this. 

The first visit at the orthotics clinic was an assessment of the injury and its specific impact.  This stage was mostly answering questions.  What muscles were functioning?  What was my level of independence at different tasks, such as sitting up or leaning over?  Did I have any walking ability?  I was using a wheelchair for mobility at the time and had a little hip function.  When my knees were blocked or locked straight, I could take small steps.  Information like this helps determine what bracing is viable.

For me, the results were almost a disappointment.  My request for braces was nearly turned down because my walking ability was very poor.  Fortunately, I had a great advocate in my orthotist.  If it hadn't been for him, the braces would never have happened.  (If you know much about SCIs, you know that opportunities can easily be shut down.  Don't be discouraged and don't give up.  Be persistent and pursue all your options.)

Fitting for leg braces was a separate appointment.  All I had to do was show up.  The casting process was fairly straightforward.  It just involved having measurements taken and being still while the clinician created a mold of my legs.

 

The molds were used to fabricate custom braces for use at home.  I picked up the braces  about a month later, approximately two weeks after the one-year anniversary of my accident.  Since we had been able to keep my body used to being upright, I did not have to go through any stages of readjusting, such as worrying about blood pressure problems or potential blood clots.  Getting used to the braces mainly meant wearing them for longer periods of time each day: an hour one day, two hours the next day, four hours the next, and so on.  By July 4, I could walk down the local trail just enough to view fireworks while standing.  It was a long and triumphant way from the hospital bed where I had been exactly a year earlier.  Well worth it!

Obviously that isn't the whole story about long leg braces.  There is much more to say about adjusting to them and using them for daily function, but I hope that these short insights will help others who are looking into leg braces.  Please contact me or leave a comment below if you have any questions!

Sensation and SCI

Sensation after spinal cord injury is complex.  Every SCI is different, and in many ways, feeling and sensation are a testimony to the amazing intricacy of the central nervous system.

What do you physically feel after SCI?  It truly varies from person to person.  Some people have no sensation and no movement or muscle function, others have complete sensation and no movement, and yet others have no sensation and full movement or at least some ability to stand or walk.  Personally, I have a mix of sensation and function.  It's relatively little of what anyone else might call "normal" sensation, and more of what you might call "deep" sensation: noticing pain, the discomfort of a big wrinkle in a pant leg, or pressure on a bony part of the knee, for instance. 

An interesting aspect of sensation is how much you notice it when it's gone.  I have a much harder time walking without seeing my feet.  This is because the body subconsciously relies so heavily on feeling.  (Proprioception is the term for your body's awareness of where it is and how it is positioned.)  But if you have ever heard people say that they knew what had happened as soon as they suffered a traumatic spinal cord injury, it's true that you can tell the difference before and after injury, and it can be in an instant. 

Questions or suggestions?  Please comment below!

Video: About KAFOs

If you'd like to know more about what knee-ankle-foot orthotics are, how they work, and how they are worn, this video is for you.  More to come about both KAFOs and AFOs.  Questions or suggestions?  Please comment below!

Carrying the Rosetta Stone . . . and Other Exercise-at-Home Adventures

Health and fitness are always huge topics, but with the COVID-19 situation, a lot of people are asking questions about staying fit while staying put.  For some with disabilities and injuries, being out of physical therapy is not only mentally trying, but also physically difficult.  It can really set you back.  Today, I thought it might be helpful to talk about ideas for therapy at home.  Please remember that none of this information is intended to serve as medical advice.  It's based on personal experience and/ or research, and has nothing to do with a professional capacity or recommendation.  (I'm a doctor, but not that kind of doctor; please, consult with your medical professional and/ or physical therapist for their suggestions and ideas.)

Today's post touches on information for exercising both the upper and lower parts of the body, especially fingers, hands, and toes.  My past videos and posts have primarily focused on exercises for the lower body, and mostly for larger muscle groups.  This is because my spinal cord injury occurred at the thoracic level.  While it was catastrophic, there was no cervical spinal cord trauma or lasting neurological damage to my arms, hands, or fingers.  It was a close call.  In the accident that caused the SCI, I sustained very serious upper-body injuries, including a broken neck, broken ribs, and collapsed lungs.  After being in Intensive Care and Critical Care, I had to relearn how to breathe and move again.  Again, thankfully, the nervous system was intact to at least T10 despite many broken bones in the cervical area, so for me, respiratory therapy mainly involved using a spirometer (a topic for another post).  Physical and occupational therapy had to wait.  It never occurred to me how much muscle mass had vanished from my arms and hands until about the first day of being allowed to eat again.  Wow, was that an eye-opener.  I could hardly lift a small half-glass of water.  Before then, I wouldn't have begun to be in any shape to think about maintaining muscle tone.

That was where Occupational Therapy came in.  The routine with OT involved everything from stretching Therabands and lifting one-pound weights to measuring pinch strength of the thumb and index finger.  By the time I left in-patient therapy, I could lift two-pound weights.  Still, when I returned to school in August 2014 and was handed an iPad, that device alone felt impossibly heavy.  My backpack was a supported pack with lumbar straps, and all I could tolerate in it was that iPad.  Glasses of water were easier to lift than they had been, but books?  I could barely lift a paperback, much less a typical textbook.  Daily living became the best therapy.  Without help for tasks during the day, I learned how to do small dishes, carry lightweight bags with a walker, and sit while transferring books between locations.  By 2015, I was picking up huge books from the library and carrying them against a walker.  (The triumph came on the day I hauled a Demotic Egyptian reference book back home and unfolded its life-size replica of the Rosetta Stone.  I call that "The Day I carried the Rosetta Stone.")

Fortunately, with the exercises here, you don't have to be able to lift the Rosetta Stone (which is great, because even if you had access to it, the real thing weighs over 1600 pounds).  And I've tried to do some of the "heavy lifting" for you with these links by giving some extra information.

Questions or suggestions?  Please comment below!  You can also learn more by subscribing to my YouTube channel.

FlintRehab: Clever ideas for building hand strength after spinal cord injury: flipping light switches, sorting small items like candy, popping bubble wrap, turning the pages of a book, etc.  Using a yo-yo or scissors makes this list, and so do painting and sculpting.

CareFirstRehab: A resource for stretching and strengthening your hands after injuries, this page has ideas that don't require many props.

VeryWellFit: With everyday items like hand towels, rubber bands, and Silly Putty, you can find some pretty useful exercises here.

BeachBodyOnDemand: This link includes photos of foot, hand, and arm exercises, plus lower-body workout suggestions.

Athletico: A lot of interesting ideas here.  I haven't tried working with laundry detergent bottles, but in a pinch, being caught at home under the coronavirus conditions . . .

WholeBodyHealthPT: Including a nice list of items with approximate weight values (e.g., 5 pounds = 1 bag of rice).

Theraband Hand Exerciser: A product and not really an exercise website, this link includes a guide to hand exercises using the Theraband hand exerciser.  Take a look at the PDF image for suggestions like pinching, compressing, and finger-walking.  Note: I haven't used this product.

Cordical Release: AccessiRep 1.1!

Cordical Announces AccessiRep 1.1

Video Update (April 2020)

At long last, a video update of walking forward with the Lifeglider!  This recording dates to earlier this year (February). 

As a general note, it's inevitable that the COVID-19 situation is affecting people's opportunities for physical therapy and recovery.  Unfortunately, some with spinal cord injuries are also having even more serious problems finding help with everyday tasks and maintaining routines essential to daily health.  Due to coronavirus, they may have caregivers who are ill or unable to come, for instance, and they have to take extra precautions from the contagion.  Many of the same people already suffer in silence from ongoing isolation.  Please keep them in your thoughts and prayers!

COVID-19 and SCIs

With COVID-19 going around, it's an especially good idea to practice good hygiene and to be cautious about where you go and what you do.  But in the meantime, since people with spinal cord injuries are technically included in the "higher risk" groups for contracting Coronavirus, today's links lead to some resources specifically geared toward SCIs and COVID-19. 

Have you found other sites with really helpful information about SCI and COVID-19?
Please contact me or comment below!

https://news.shepherd.org/qa-coronavirus-disease-2019-covid-19/
https://www.christopherreeve.org/blog/life-after-paralysis/the-flu
https://www.spinal.co.uk/news/coronavirus-and-spinal-cord-injury/

Video: Truck Transfer with Unlocked KAFOs

Getting in and out of a truck with KAFOs.  This is an older video with classic braces which I don't use anymore, but since there aren't many videos about everyday life with KAFOs/ long leg braces, I hope this upload will help others who are figuring out vehicle transfers.

At release from rehab, before leg braces and still in recovery from extensive upper body damage, I was told that it would take 4-5 people, a slideboard, and a bedsheet for me to get in and out of a truck.  Much healing and many steps later, what a major difference from the initial prognosis.

(Note: This video is from almost two years post-injury, with both KAFOs completely unlocked at the knees.)

SCI Awareness Month

September is official "Spinal Cord Injury Awareness Month."  If you're looking for statistics or other information related to SCIs, you can follow this link to learn more.

I don't have any particularly profound insights to add in commemoration of the month, except to quote the reported axiom of Benjamin Franklin: "An ounce of prevention is worth a pound of cure."

While an ounce of prevention cannot guarantee against injury (if it could, a lot of us would have a lot of ounces), and while a pound of SCI cure is not necessarily available (if it were, a lot of us would also be availing ourselves of a lot of pounds), doing your best to prevent a spinal cord injury is smart when you can do it.   

The EpiPen is Mightier than the Spinal Cord Trauma?

I've posted on some fascinating technology and treatments in the past, but this development is an eye-catcher.  Scientists at the University of Michigan discovered that an injection of non-pharmaceutical nanoparticles after a spinal cord injury can redirect the natural immune response and support nervous system repair.  This "EpiPen" for the SCI would minimize or possibly even prevent dangerous inflammation and promote regeneration at a critical time, maybe inhibiting the growth of scar tissue that could (literally) stand in the way of nerve regeneration.
Nanotechnology in medicine sounds like science fiction, but it isn't.  It's part of a much larger conversation about safe, responsible application of nanoparticles in contexts ranging from spaceflight and bioethics to car manufacture and food production.  SCI EpiPens are an incredible entry into the debate.  Practically speaking, they could change a lot of lives.  Order yours today?

Video Link: Summer SCIs

Just an informative little video about spinal cord injuries caused by summer activities. 

6 Years Later: SCI, PhD, and Video Montage: 6 Years in 6 Minutes

Today is the sixth anniversary of the car accident that caused my spinal cord injury, and therefore marks six years since the beginning of my recovery story.  This spring also marks a happier milestone: in May, I had the privilege and blessing of graduating with my PhD in Classics from Yale University.  I began the PhD program the year before the accident and was visiting family over the summer when a distracted driver rear-ended our car.  Thank you to everyone who has helped along the way to graduation — most especially to those at Yale University, Yale Classics, and BiofitKC.  I'm excited about the next stage of my journey: working with Cordical LC; continuing recovery along with research, writing, and speaking; and hoping to encourage others.  The best is yet to come!

To follow my journey so far, see this montage uploaded today to YouTube:
6 Years in 6 Minutes: Spinal Cord Injury and Path to PhD

Cordical's AccessiRep: Working to Solve a Repeated Problem

Ever since my injury, I have worked hard to get back on my feet.  But unfortunately, regular pedometers and trackers don’t measure much of my activity, if they register any of it at all.  When I was first beginning to walk regularly, charting progress became more and more important.  I counted steps to judge distance and improvements, but with a spinal cord injury, it’s difficult enough simply to focus on taking steps, much less count them at the same time! 

Fixing that situation has been one of the goals of Cordical, a technological start-up founded by me and an extremely talented computer scientist, who happens to be my brother.  Together, we designed AccessiRep, a step counter and activity repetition tracker.  I can launch the application on my phone and put it on a walker, and the app will track my motion and count my steps for me.  It registers activity on a chart and will count aloud if desired.  We are excited to release AccessiRep on Apple’s App Store for $2, and hope that others will see the app’s potential for use in many settings, with disabilities or not.  Since this is our initial release, we also would like feedback on user experiences as we look forward to improving AccessiRep and making it even more personalized and adaptable.

AccessiRep is not a therapy device so much as it is a fitness tool.  Its present features include calibrating for different levels of sensitivity to support multiple types of activity detection, a graph showing movement duration and intensity, private access to past results, and an optional audio counter that will count your exercise repetitions out loud as you work.  Basically, AccessiRep can be put to work for many creative purposes and programs.  In many ways, it’s been a game-changer for me personally.

To learn more about Cordical, follow this link to our website, and to see more on AccessiRep or to purchase the app, follow this link to the App Store. 

A Note on Locomotor Training

This study on locomotor training (LT) caught my eye because I was able to have a few sessions of this type of training soon after my injury, but was released due to lack of improvement.  LT involves being supported in a harness (often above a treadmill) and having manual assistance at standing and stepping, among other things.  My limited experience with it was before I began walking with a walker and braces all of the time.  (That was not possible at the time I was released from LT, but you can see videos on my YouTube channel.  Hopefully they will encourage others not to give up.)
But back to this study.  Eight centers gave 120 sessions of this training apiece to people with SCIs — and saw positive changes.  As the study concludes, "Delivering at least 120 sessions . . . improves recovery from incomplete chronic SCI."  The hope is that if insurance permits more LT early on, then there will be fewer hospitalizations and complications later. 
Even better is to see what the results actually were.  I came across a write-up published by Kate Willette, wife of one of the participants.  Apparently many of the people in the study did not have "significant improvement" until at least 60 visits, with some seeing nothing until after 80 visits.  She explains that the study involved 69 people with ASIA C or D injuries, meaning that they have some muscle function below the site of injury (the ASIA scale is best left for another post, but can be used as a common shorthand for how much function or ability someone has after a spinal cord injury).  Of those 69 people, 42 could not walk at all at the beginning; at the end, 20 of the 42 were able to manage with rolling or standard walkers, crutches, or canes. 
All of this is pretty amazing.  More than that, although it again shows how slow and tedious recovery can be after an injury like this — and frequently needing external help or equipment — it is not necessarily impossible.  The people who took part in the study had incomplete injuries and were at different stages in their recovery, but many of them did see improvements.  More to come!

iPS cell trial

A big topic in the news this week: Japan has approved trial stem cell therapy/ treatments for humans with spinal cord injuries.  The cells are "induced pluripotents" stem (iPS) cells.  A Nature.com article explains that "IPS cells are created by inducing cells from body tissue to revert to an embryonic-like state, from which they can develop into other cell types" (David Cyranoski, "'Reprogrammed' stem cells to treat spinal-cord injuries for the first time").  This means that your own cells are used in the procedure.  Researchers from Keio University will conduct the trial with four people who have recent spinal cord injuries. 
This is the first clinical trial of its kind for spinal cord injuries (not for iPS cells).  One worth watching!

Video Update, Feb. 2019: Assisted Heel Slides

This video shows a new sort of exercise for me: assisted heel slides from a sitting position.  Position makes a big difference in muscle response.  That's why it is so important to vary exercises while standing, sitting, or lying down.  That's also why it is important (I think) to have as much active physical therapy as possible.  Your brain and body adjust to static situations, and your nervous system easily adapts to doing less work.  Hence therapists say "use it or lose it."  If the muscles are working, if the nerves are trying to trace new pathways, then it's time to find innovative ways to encourage more improvement. 
Easier said than done.  It isn't easy for anyone with a spinal cord injury to go through this process alone.  Not everyone has returns to encourage, and certainly not everyone has a way to follow up with therapy or exercise.  Thank you to all those who are helping me take advantage of the good changes!