International Business Times: How NeuroHope is Transforming Spinal Cord Injury Care
Article Link: How NeuroHope is Transforming Spinal Cord Injury Care
By Daniel Lee, International Business Times
Article Link: How NeuroHope is Transforming Spinal Cord Injury Care
By Daniel Lee, International Business Times
In 2023, we will serve our 500th patient along their road to recovery!
Watch the clip by clicking here, and scroll to the 4:00 mark!
By Shari Rudavsky: Indianapolis Star, December 25, 2022
The abandoned bridge over the river in southern Indiana near Edinburgh beckoned to the group of kayakers in the water below.
Chris Leeuw and his friends secured their boats, scaled the structure, and poised to dive into the cool water below. Flying through the air, Leeuw did not notice the man next to him who had jumped off the bridge nanoseconds after his own feet left the ground. When Leeuw hit the water, the stranger landed atop his head, snapping his neck and instantly changing his life irrevocably. The man, whose name Leeuw does not know to this day, dragged him to shore, saving his life. But Leeuw, who never lost consciousness, could feel nothing.
“It was literally like a light switch,” he said. “I was just totally paralyzed from the neck down.”
After Leeuw was airlifted to IU Health Methodist for emergency surgery, his doctors said he’d never walk again, but he defied those predictions after spending months in a Utah specialty rehabilitation clinic. His success in Utah inspired him to open a mirror of that program here in Indianapolis, helping others with injuries similar to his own.
Unlike conventional rehab that cease when insurance payments stop, Leeuw’s NeuroHope clinic focuses on long-term recovery, stepping in to help patients who have exhausted their physical therapy allotments. To help pay for the costly service, Leeuw fundraises tirelessly to keep his self-pay fees reasonable.
NeuroHope, the rehabilitation center he opened on the northeast side, recently received a $1 million OrthoIndy Foundation grant. The money will allow the 5-year-old center expand further, serve more patients and fill a void of longterm therapy for people with spinal cord or brain injuries or who have suffered strokes.
Leeuw and his program have been on the radar of the OrthoIndy Foundation since 2016 when Leeuw approached the Foundation for assistance. “Blown away” by Leeuw’s accomplishments, the Foundation initially committed $36,000 to the program. When OrthoIndy started thinking about making another major grant along the lines of the $3 million it gave to help build the Pike Township YMCA in 2016, NeuroHope topped the list.
Indiana has no other program like NeuroHope, which is one of just 11 community fitness and wellness centers around the world that belong to the Christopher Reeve Foundation’s Neuro-Recovery Network. Many insurance programs provide physical therapy for only a set amount of time; Leeuw’s own experience as well as those of many of the NeuroHope clients attest to the value of continuing to work on recovery, his fans at OrthoIndy say.
“Chris’s program demonstrates that there are more opportunities for rehabilitation, but you have to stay at it for a long time,” said John Ryan, OrthoIndy CEO. “What it affords our doctors to do … is to offer up that there are solutions that will extend beyond what they might otherwise receive.”
Lydia Miner (right) a PTA, works with Tranicia Hankins at NeuroHope. The center offers long-term physical therapy and a fitness space for people with neurologic injuries. Hankins had a stroke six years ago and is training to walk again. Photo: Jenna Watson/IndyStar
Drop by NeuroHope on any weekday and you’ll see a range of activity. Some patients work one-on-one with physical or occupational therapists, honing their balance or improving their walking skills in other ways. Others work on upper- body strength, building back up muscles that have atrophied.
In one room, NeuroHope’s wellness coordinator Kendal Baker stands in the midst of a circle of men on machines, some on recumbent bikes, others on machines that work out their arms instead of their legs. The class has a spin class feel as Baker exhorts the men to move faster, raise their heart rate and watches the effect on a screen in front.
Outside the class in the main Tranicia Hankins, 41, walks a careful line under the watchful eyes of a staff member. The Noblesville resident, who had a stroke six years ago, came to NeuroHope after rehabbing elsewhere.
Since Hankins started at NeuroHope, her mother has noticed that she’s more stable when she walks and has more endurance. Now, Hankins hopes that one day she may walk without a cane. Watching Leeuw around the gym has proved an inspiration, Hankins said, “just to see him doing it every day.”
Megan Lashley (left) a neurorecovery exercise specialist, works with a client for balance training at NeuroHope.
Photo: Jenna Watson / IndyStar
But Leeuw cautions that his story of recovery is just that — his own — and that each person travels his or her own recovery path, depending on multiple factors such as the severity of their accident.
Reaching this point, however, was as long a journey for Leeuw as for his clients.
Almost instantly after his accident, which abruptly ended the kayaking excursion with friends, Leeuw knew he was paralyzed. He was airlifted to IU Health Methodist Hospital and rushed into emergency surgery.
Despite what doctors feared, about a week after his accident, Leeuw, who was in peak shape, moved a muscle in his inner thigh.
“That was a little small glimmer of hope,” he said. “But the recovery process is so long. … And the journey is a mental journey just as much as a physical one.”
At the time of the accident, Leeuw worked for ChaCha, the search engine started by multimillionaire Scott Jones. But recovery became a full-time job. He had to learn how to navigate his life, how to feed himself, how to bathe, how to use a power wheelchair.
Statistics suggest that those with spinal cord injuries eventually plateau in their recovery so Leeuw knew that all too soon the intensive therapy to which he had access in those early months after the accident would come to an end. After a stint at the Rehabilitation Hospital of Indiana, Leeuw moved to a nursing home, where he continued to recover ever so slowly.
While in the nursing home, he even achieved the milestone of standing again, putting weight on his legs. Although just a few months earlier, he had thought he might never stand again, this achievement proved only small solace for him.
“It was kind of hard to celebrate some of those early wins because you still wanted more,” he said.
His former boss Jones told him about a clinic near Salt Lake City, opened by a doctor who himself had recovered from a spinal cord injury and learned to walk again. Leeuw fundraised enough to relocate to Utah with his mother.
Housed in a space far smaller than Leeuw’s own current facility, Neuroworx featured state-of-the-art equipment and operated on the philosophy that people like Leeuw need longerterm care than insurance covers to maximize recovery. For three hours a day five days a week, Leeuw said, he concentrated on regaining as many of his abilities as possible.
After about two years Leeuw could walk again and care for himself again, although his left side continues to have some level of paralysis. The final step for him involved being able to drive on his own. After therapy each day, he and his mother would visit a student driving course near their apartment and Leeuw would take the wheel of the car, which was outfitted with a special knob.
“I would always keep trying to get my right arm strong enough to turn the wheel, and I’d fail and fail and fail,” he said. “Then when I finally was able to do that, that was time to go home.”
As Leeuw drove himself back east to Indiana, he brought with him a vision: An Indianapolis clinic in Indianapolis that replicated the one in Utah.
Elliot Cohee, PT, DPT (left) is the Director of Therapy at NeuroHope and oversees clinical operations. Here he works with Brad Spencer in a gait training exercise.
From his own experience, Leeuw knew health insurance often does not cover such care. Most insurance plans only cover 22 to 28 therapy visits a year, far from sufficient for people recovering from catastrophic accidents.
At first Leeuw partnered with the University of Indianapolis, which gave him free space in a small room in Fountain Square. He opened NeuroHope in 2015 with little but a therapy mat and a dream.
Soon, however, Leeuw fundraised about $100,000 to purchase an electrical stimulation machine that improves strength and coordination by using electrical current pulses to stimulate muscle contractions. He secured additional donated equipment, such as a standing frame for those who use wheelchairs to practice standing.
Although NeuroHope had only parttime hours, patients flocked to the doors, through word of mouth. Two years ago the Indiana Spinal Cord and Brain Injury Research Fund gave the clinic a two-year grant of close to $1 million, opening the door for the clinic to expand. In 2017 NeuroHope moved to its current home adjoining the fitness center of what was then Incrediplex. The new space allowed Leeuw to realize his dream of a hybrid facility that’s part physical therapy clinic, part fitness center.
“That’s what we do that’s so unique … We see people in different, different places in their recovery,” Leeuw said. “We merge the two because we recognize these injuries take a long time to recover from.”
Brittanie Howe (right) a physical therapist, leads Olivia Garrison in a core-strengthening exercise at NeuroHope
About 30% of people with spinal cord injuries are sedentary, never leaving their wheelchairs and about 30% are hospitalized every year for issues like skin breakdown, pressure sores, or cardiovascular trouble, Leeuw said. Keeping this population healthy, then, not only improves individual health but can also saves on hospital costs.
For some, insurance covers their physical therapy; others pay out of pocket for services. To help defray costs and make it possible to offer patients in need care, Leeuw fundraises full time, which sets his facility apart from others that rely on insurers for payment.
At the time of the move, the clinic had about half a dozen employees and served about 25 people. Today the staff has nearly tripled in size for about 95 clients, Leeuw said. While most of the patients come from central Indiana, some travel from out of state. Although some may not have had exposure to some of the machines that NeuroHope offers, for most the clinic’s philosophy rather than its technology proves the draw.
“A majority of the time people have gotten the care they needed. It’s just they need more of it,” said Elliot Cohee, director of therapy. “A lot of our philosophy is just getting people out of their chair … and just trying to get them to use as much as their strength and their body that they can to help with the recovery.”
While Leeuw realizes that his own story may serve as a beacon to others that they, too, can come back from devastating injuries, he also stresses that as he see it, his success lies not in the fact he tried harder or did more therapy. Instead, he said, his injury was not as severe as those others have endured — and he did two years of intense work to relearn how to walk and use his arms.
Leeuw and his staff shy away from answering the question so many clients ask, When will I walk again? Each person, they know, is different; each injury poses its own challenges.
After a motorcycle accident in 2018, Binh Dennis, 52, eventually found his way to NeuroHope, looking for a place that would help him continue to regain as much of his past life as possible from his wheelchair.
Formerly a Fishers police officer, when Dennis was discharged from the hospital, he could only transfer himself from his wheelchair to a hospital bed. Now he can go from his chair to any sitting surface, shower independently, dress himself.
Three times a week, Dennis comes to NeuroHope, where he takes cardio classes, strength training classes, and works on increasing his abilities.
“I have come to accept the fact that my injury is permanent. What I look forward to is continuing maintaining my independence,” Dennis said. “The biggest thing I have gained is mental strength. Nothing is impossible.”
Contact IndyStar reporter Shari Rudavsky on email at [email protected]. Follow her on Twitter @srudavsky.
NeuroHope Executive Director Chris Leeuw was one of seven speakers at the 2018 Indiana Traumatic Spinal Cord and Brain Injury Research Conference, held April 18th at the IU Health Neuroscience Center in downtown Indianapolis.
The annual conference is sponsored by the Indiana Department of Health to showcase projects that have been made possible thanks to support from the Indiana Spinal Cord and Brain Injury Research Fund.
Leeuw’s talk focused on NeuroHope’s expansion and the mission to provide affordable, activity-based therapy to people living with and recovering from neurologic injury. He also discussed NeuroHope’s recent invitation to join the Christopher and Dana Reeve Foundation NeuroRecovery Network (NRN), and the research that is collected at NRN sites across the U.S.
“Good afternoon! My name is Chris Leeuw, Director of NeuroHope.
We are honored and thankful to share the NeuroHope story with everyone. This presentation will be different than others today, because the support we received from the Spinal Cord and Brain Injury Research Fund was not STRICTLY to fund research. Data collection is a part of what we do, but the primary purpose of the two-year grant we received has been to help our charity NeuroHope expand its very specific mission: to make long-term therapy and exercise programs available for people recovering from traumatic injury after insurance expires, and to do so in a way that is affordable and accessible for the patients that need it.
NeuroHope openedn in 2015 in a part-time gym with the help of the University of Indianapolis Krannert School of Physical Therapy. We understood first-hand that it takes a long time to recover from most neurologic injuries. And, we understood that since healthcare is dictated by insurance reimbursement, patients are discharged from inpatient rehab too soon. Sometimes, discharge is within a matter of weeks, after which, patients are given a limited amount of outpatient PT/OT visits to continue their recovery, which is simply not enough. It is not enough time. It is not enough access.
I lived through the process as a patient. In 2010 I suffered an incomplete C4 spinal cord injury that initially left me a total quadriplegic, paralyzed from the neck down. I’m standing here today because my injury turned out to be less severe than many. I was very fortunate in my recovery. But, even in my situation it to took two years of daily, aggressive therapy to maximize my recovery. I was at the Rehabilitation Hospital of Indiana for my inpatient stay, where I had outstanding care. I did not want to leave. I stayed there for 8 weeks, which is much LONGER than most patients, because I was showing slow signs of progress. But, when my time there expired I was still was mostly paralyzed, and I had to leave continue my rehab out of state.
Within the first year of a spinal cord injury (SCI), medical costs can approach 1 million dollars. Healthcare costs continue to rise, and as a result, inpatient days have become more limited. In the 1970’s the average stay following SCI was 98 days. Today, that number has shrunk to just 35 days.
In year two, and every year after, medical costs may reach $100,000 per year. One in four discharged patients are admitted back into the healthcare system because they sit at home and secondary complications that come hand-in-hand with neurologic injury (pressure sores, contracture, bone-density, etc.) kick in. Outpatient therapy allowances are shrinking as well. Insurance companies allow an average of 21.5 visits per year for outpatient physical and occupational therapy. So, we’re faced with a great irony. At a time when rehabilitative advances are happening faster and faster, adequate access to the best resources is more difficult to come by.
At NeuroHope, we have a different, 4-stage vision.
We do everything we can to complete the continuum of care. After a patient is discharged, instead of a two-stage process, we add a third stage. By providing care at affordable, private-pay-rates, the third stage involves a comprehensive approach to extended rehabilitation so patients can maximize their recovery in the critical first two years after injury. Then we add a 4th stage for chronic injuries that can blend personal training and wellness programs to help patients maintain a healthy quality of life.
This has been our goal. Thanks to support from the ISCBIR Fund, we have been able to increase staff, move to a new gym in the Incrediplex, and increase hours. Most importantly, we have been able to tap into our waitlist and help more people living with paralysis. We are currently seeing about 50 clients, with varying diagnosis, the majority being SCI, TBI.
The expansion has also secured an invitation from the Christopher and Dana Reeve Foundation to join their NeuroRecovery Network (NRN). The NRN is a network of sites that share a similar vision centered around activity-based therapy (ABT). ABT specifically focuses on weaknesses and activating the neuromuscular system below the injury level.
NRN sites collaborate with each other and collect data. Most NRN sites are clinical sites tied to leading rehabilitation hospitals. Other NRN sites, including NeuroHope, are focused more on community fitness and wellness – with an emphasis on making activity-based therapy more widely available in more of a gym setting.
Some of the research collected exclusively at NRN sites involves Neuromuscular Electrical Stimulation (NMES). This looks like normal Electrical Stimulation (E-stim) or FES, but it is much different. NMES is centered around the success of epidural stimulation research. NMES uses different parameters than typical E-stim. The main differences are higher pulse width and frequency, and longer amplitude. NMES tries to trigger beyond the muscle into the nervous system.
We’re proud to be a part of the NRN, although it is a very small part of what we do.
Our primary focus centers on the basic mission of getting people active, out of their chairs, and promoting as much recovery and wellness as possible to improve long-term quality of life. Over the next two years, NeuroHope staff will be working with researchers from the University of Indianapolis to track patient outcome measures, and patient satisfaction. We have also developed a logic model to help track the overall goals of our program.
This strategic plan is important, because our program must remain sustainable. A substantial part of what we do relies on fundraising to help offset the true cost of the care we provide. It’s critical for us to work with providers and healthcare leaders to help complete this continuum of care. And, it’s our hope we can be back a year from now and share our continued success.
Thank you very much.”
We are proud to announce that NeuroHope is the recipent of a new $150,000 grant from the Indiana Department of Health, by way of the Indiana Clinical and Translational Sciences Institute (CTSI) and the Spinal Cord and Brain Injury Research Fund!
Indianapolis is fortunate to have excellent rehabilitation hospitals for people recovering from catastrophic events. Unfortunately, due to the rising costs of healthcare, the time patients are able to spend in them is often limited to a matter of weeks of insurance covered therapy visits.
This grant will be an important part of our model and we look forward to the coming year!
There are many people to thank who made this year’s ONLY fundraiser such a success:
Every golfer that came out to support our patients, the auction item donors, the NeuroHope events committee led by Justin Davis, who planned the outing for months, Indy Biplanes for an exciting tee-off flyover, Ironwood Golf Club for being such great hosts, all of our pizza donors, Jack’s Donuts, Fuzzy’s Vodka, Four Day Ray Brewing, and Havana Cigar Lounge for the presence and product donations all afternoon!
A special thanks also goes out to all of our hole sponsors:
Ameripak, Aero Industries, Axiom HR, Brenda Bowman – FC Tucker, Bright Ideas of Broadripple, Burger King of Kokomo & Muncie, David Bruce – State Farm, Greg George Insurance Agency, Justus Real Estate, Kimball Electronics, KSM Consulting, The Laviolette Group, Lynch, Harrison, & Brumleve, Lannie Thompson – FC Tucker, National Bank of Indianapolis, Patterson Horth General Contractors, Rehabiliation Associates of Indiana, Sparenberg Farms, The Spickelmier Family, Systemmax Corporation, Tim Allen Photo.
Congratulations to all of our contest winners who took home Delta Faucet merhandise (Longest Drive, closet to the pin). And, cheers to the new “Swing Fore Hope” Champions: Austin Bowman, Josh Martin, Craig Costello, and Drew Schroeder!
Don’t forget – you can support NeuroHope year-round by choosing “NeuroHope of Indiana” as your Amazon Smile charity. You can also set up easy, monthly recurring contributions by clicking here. Just $25 per month from 100 people would be an extra $30,000 per year for our patients!!
Thank you all! We’ll see you next year!
The Christopher and Dana Reeve Foundation has been the primary force behind advocacy for these issues ever since its creation, and it will continue to be the guiding light in the ongoing effort for both cure and care for years to come. The inaugural Reeve Summit brought researchers, physicians, rehabilitation centers, spinal cord injury survivors, and advocates together for three days in Washington D.C. to discuss cure, care, and the future of spinal cord injury research and awareness. Keynote addresses were made by Christopher Reeve’s daughter, and Vice-Chair of the Board of Directors Alexandra Reeve Givens, Chief Scientific Officer Ethan Pearlstein, and Good Morning America’s Robin Roberts.
The healthcare system must build an infrastructure for a proper continuum of care to improve lives, and provide adequate access to interventions NOW! That is part of the small role we are proud to play at NeuroHope.
Many thanks to the Christopher and Dana Reeve Foundation for being the force that brings these voices together.
The NeuroHope story was presented at the American Physical Therapy Association’s (APTA) Combined Sections Meeting in Denver, Colorado on February 14th!
Preliminary findings of our ongoing research study were shared at the APTA’s annual summit where thousands of physical therapists and researchers from around the globe gather to share the latest developme
It was an exciting opportunity to showcase our unique mission and program. NeuroHope was created with a model that defies traditional healthcare. Instead of relying solely on insurance reimbursement and billable hours – we focus on patient access and affordability above everything else. Maximal recovery from catastrophic injuries depend on this standard of care, but adequate access to therapy, exercise, and expensive rehabilitative technology is difficult for healthcare systems to provide. The irony: knowledge, science, and rehabilitative technology is advancing, but patient access is declining.
Most people recovering from life-changing spinal cord and brain injuries stop therapy when insurance coverage is depleted, which may only be a few months following injury. The severity of neurologic injuries, the length of time needed to recover from them, and the lack of long-term quality of life programs in most communities leaves a void in care that NeuroHope was created to address.
Thanks to support from the Indiana Spinal Cord and Brain Injury Research Fund, NeuroHope has partnered with a research team from the University of Indianapolis to track the long-term outcome measures of patients that have access to NeuroHope’s model of ongoing care. Since January 2018, patients attending NeuroHope have been evaluated extensively to monitor their motor fuction, physical activities and health-related quality of life during participation in our program. Patients with varying degrees of injuries, ages, and length of time since the injury, all participate in a rigorous 2-hour evaluation that consists of tests that measure neurologic function, balance, range of motion, reach, endurance, and walking, in addition to surveys to monitor their satisfaction and quality of life. Tests are repeated every 3 to 6 months to evaluate progress.
Patients are being tracked through the summer of 2020 in order to capture the clearest picture we can, but even now, preliminary results have shown improvements across most outcomes. In the coming months, we look forward to sharing complete results over a three-year period to gauge the effect that continued therapy and aggressive exercise may have for both recent and chronically injured patients recovering from neurologic injury.
Thanks to our supporters and partners, we are making affordable rehabilitation a reality!
For the second year in a row NeuroHope is proud to be named the “Health & Wellness” finalist by Impact 100 of Greater Indianapolis! This year our team was honored with a $23,000 check from the women’s giving circle which will directly help fund the services we provide for people living paralysis!
Impact 100 is one of the most competitive grants in the state. Each year five finalists in five categories advance past hundreds of other charities to be recognized as the “Change Maker of the Year” with a $100,000 grant. This year, the grand prize was presented to the Kennedy King Memorial Initiative in the “Arts & Culture” category for their effort to create a new National Monument commemorating Robert F. Kennedy’s famous speech in Indianapolis the night Dr. Martin Luther King Jr. was shot.
There are so many worthwhile charities in our community! It is an honor to be named among them by such a prestigious group that makes an impact across central Indiana each year.
Meanwhile – our fundraising continues! It’s fueled by the inspiring stories we have the privilege to witness at NeuroHope every day. If you missed our recent spotlight video that shows Alex Taylor’s progress over the last 18 months, CHECK IT OUT BELOW! He had a goal to WALK all the way to the arcade at the Incrediplex for a surprise!
We have launched a 12-MONTH goal to raise $100,000 in private fundraising (from donors like YOU) to help offset the cost of the affordable care we provide our patients. Out-of-pocket rates for physical therapy at most healthcare clinics cost $300 – $400 per hour. At NeuroHope we charge $50 to work with therapists / trainers, and rely on fundraising, grants, and corporate / community partnerships to bridge the funding gap. It is a TRUE model of care that puts patients and their families FIRST.
YOU CAN HELP NOW – Donate here!
Through the link above you can quickly make a one-time donation OR be a part of our recurring giving circle, which is a cornerstone of our grassroots campaign. At the site above, just enter your monthly contribution and CLICK the recurring button at checkout. If just 200 of our supporters pledge $25 per month ($300 per year) we are already more than halfway to our goal!
You can also be a part of one of our exciting fundraising events later this year!
MARK YOUR CALENDARS:
-“Swing Fore Hope” Golf Scramble : Monday September 24. We are signing up individual players, foursomes, and are looking for hole & event sponsors!
-Indy Monumental Marathon : Saturday November 9. Join team NeuroHope for the 5K, half-marathon, or full marathon!
In 2013, Dustin Shillcox became 1 of the first 4 people in the world to be a part of groundbreaking epidural stimulation research at the University of Louisville. A set of electrodes was surgically implanted onto his spinal cord below the level of his injury and a small power pack was implanted into his abdomen. When the pack is turned on, an electric current is sent to the electrodes, which stimulates his spinal cord into action.
To help them better understand the circuitry of the spinal cord, researchers hoped the stimulation would translate to activity through the nervous system. Incredibly, for Dustin and the three other spinal cord injured patients in the study, the results went well beyond what researchers imagined. In all four patients, bits of voluntary movement were restored, sending shockwaves (no pun intended) through the spinal cord injury community.
Building on the developments over the last several years, epidural stimulation research has expanded and major milestones have been met. The most recent study published earlier this year in Nature and Nature Neuroscience announced unassisted steps took place following the procedure for the first time. These findings have dominated the conversations of people living with spinal cord injuries who yearn for the ability to walk again with stimulators of their own.
Epidural stimulation is still in its infancy, and in any event, its benefits are about much more than walking. It’s also about addressing the secondary complications of spinal cord injury, such as blood pressure issues and skin breakdown, and about staying healthy after injury. And, it involves months of preparation, rehabilitation, and a lifetime of maintenance.
Dustin visited NeuroHope recently to talk about the research, what it means to have the stimulator (which he uses every day), and what it is like to be one of a select few people in the world to have the device embedded into his nervous system. Watch the video below:
I met Dustin in 2011, shortly after his spinal cord injury, and two years before he was selected to be one of the fortunate four in the 2013 study. We were both injured in 2010, and we rehabbed together at Neuroworx in Utah for the better part of 2011 and 2012.
As he mentions in the video above, Dustin and the three participants in the original study had to meet specific criteria to be eligible. Once selected, they were required to participate in 80 Locomotor Training sessions (stepping over a body-weight-support treadmill) before the procedure. Eighty sessions! Just to prepare.
After the devices were implanted, therapy ramped up. For more than a year, daily sessions lasting for hours were underway. Different areas of their legs and core were alternately stimulated. Voltage and intensity changed. Controlled movement and standing was practiced. A myriad of tests and exercises were repeated over and over again. In time, with the stimulation turned on, movement and endurance improved.
But, in spite of what it may sound like, the study and the results were never about a “cure”. It was, and continues to be, experimental research exploring how the nervous system works. It won’t be anytime soon, but maybe someday implanting electrodes into the spinal cord will be a part of the rehabilitation process. That sounds promising – but there’s a glaring problem.
Remember that Dustin had to participate in 80 intense therapy sessions before the procedure, and continued daily visits after the procedure for more than a year. To put it in perspective, most SCI patients receive a grand total of 30 outpatient physical therapy visits per year – if they’re lucky enough to have a good insurance plan.
Even if epidural stimulation, stem cell research, or any other neurologic breakthrough advances to a point it becomes commonplace, a change in the policy of outpatient therapy needs to take effect.
If a magic wand made a cure available tomorrow, long-term rehabilitation programs will need to be available for there to be a benefit.
Right now those programs do not exist in most communities. Hopefully, a paradigm shift is beginning. There are a handful of facilities around the country that understand the need for long-term rehabilitation and wellness for individuals with neurologic injury. NeuroHope has created one in Indiana. Not only so programs are in place for discoveries in the future, but so programs are in place for those who need it now.
Learn more about epidural stimulation, and other SCI research here.
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NeuroHope is a 501(c)3 non-profit that provides long-term physical rehabilitation and wellness following neurologic injury. TIN: 46-1842276
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