Over the past few days there has been a worldwide media buzz about the latest advances in spinal cord injury research. Monday’s Washington Post headline is a good example — “Paralyzed people are beginning to walk with a new kind of therapy.”
A majority of the press focuses on Kelly Thomas, who sustained a spinal cord injury in 2014, now walking on her own, using a walker for balance.
When you mention the word “walk” in combination with “paralysis,” the press takes notice. And this is exciting news, albeit more of an update on a combination of two therapies that have been around for quite a while — “activity-based therapy,” which includes things like locomotor training (hanging above a treadmill while therapists move a person’s feet to simulate walking), combined with “epistim” (implanting an electrical stimulation device near the site of the injury).
This combination of therapies made its first big splash on the cover of New Mobility in 2011 when two subjects with electrical implants were able to stand on their own. And I wrote about it in a 2014 story on Jessica Harthcock, a T3 complete para who spent six years doing extensive, full-time activity based therapy and now can walk unassisted, although with no return of sensation or other functions.
How These Therapies Work
Contrary to descriptions in the mainstream press, it is rare for a spinal cord to be severed, as a majority of SCI is caused by trauma that kills the spinal cord circuits. However, the new understanding is that many people with SCI, even complete injuries, still have some functioning nerve pathways — but information can’t get through the mangled injury site. One researcher, who has studied countless high-resolution MRIs of spinal cord injuries, estimates that 70 percent of people with SCI still have 30 percent of their spinal cord connections left intact.
The theory of how these therapies work is that if the spinal cord isn’t making muscles walk on a regular basis, it forgets how, but it has the ability to re-learn. Activity-based rehab retrains the spinal cord how to walk and this excites the nerves — think “turns up the volume.” The more repetitive the activity, the higher the volume. In Harthcock’s case, over a six-year period of five-days-a-week therapy, the volume got loud enough that it was able to travel over the tangled pathway, enabling her to walk independently.
For subjects with electrical stimulation implants to be successful, they first have to go through many months of activity-based rehab, and then the implant seems to act as a hearing aid to pump up that volume. Research shows just adding a stimulator without a great deal of rehab doesn’t do the trick.
It’s Costly, Though
The participants in the 2011 electrical implant trial were able to stand on their own, but weren’t able to take steps. The news reported this week, of being able to stand and then walk, is a huge leap from 2011.
This is cool for sure — we have entered a promising new world of SCI rehab. It also brings up a lot of new questions, and unfortunately the main one is financial. These days insurance has driven the average inpatient stay for a new SCI para down to less than a month. Committing to activity-based therapy is more often than not an out of pocket expense — unless you have “gold plan insurance.” And unfortunately, at this time there is no way to know which, or how many, spinal nerves are intact. Some people regain the ability to stand or walk, others work and work and may only obtain smaller gains like better trunk control.
If/when the stimulator gains FDA approval, it will be very exciting indeed. Although the number of trial subjects is still very small, there are also reports of improved bowel and bladder control, a huge bonus. However, whether insurance will pay for prerequisite rehab as well as the cost of the procedure remains an unknown. When approved, I predict a huge influx of lofty GoFundMe pages.
Worth the Time and Effort
FDA approval of the stimulator will also bring up some serious questions. The main one is, is it worth the time and effort — many months of expensive work in rehab, getting the costly implant, then many more months or years of work in rehab, with an unknown outcome?
In my “survey of one” it would be.
Unfortunately, at 33-years post injury, I have compromised legs from osteoporosis-induced fractures, so that ship has sailed. Otherwise I would be very tempted to start my own GoFundMe project to see what I could regain.
The upside of being able to walk short distance, or even stand — even with no other return like sensation or bowel and bladder — would be huge. And not only from a practical and social point of view, but also for health reasons.
Being able to stand and/or walk would probably reduce or prevent SCI related issues such as osteoporosis, as well as build muscle that could reduce the risk of pressure sores as well as leg edema. And, man, would it ever be cool to be able to stand at a party, concert, or go up and down stairs.
This is an exciting breakthrough for sure!