Last August, exactly eight years after waking up in the ICU, I had the honor of speaking at the 2018 Joseph Group Wealth Summit in Columbus, Ohio.
It was the first time I gave a public account of my entire personal story – the moment of the accident, life as a quadriplegic, what happens to the body after spinal cord injury, and a detailed description of early rehabilitation, skilled nursing care, and the roadblocks patients encounter as they navigate through a complex healthcare system.
I also explained traveling to Neuroworx to receive affordable, continued therapy, and the model of patient-centric healthcare that inspired the birth of NeuroHope.
0:00 mark: Waking up in intensive care and the day of the accident
9:20 mark: Spinal Cord Injury 101 and life as a quadriplegic
12:55 mark: Re-thinking healthcare, the journey from the hospital, to a nursing home and the void for continued therapy after neurologic injury
21:20 mark: My journey to Neuroworx and re-learning to walk
25:44 mark: A life changed, creating NeuroHope and finding purpose.
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.
Each member of the Colts cheer squad has picked a charity and a program to support. NeuroHope is honored to have been selected by Vanessa Wahl, a Greenwood native in her second year with team, who shares our passion to provide affordable rehab for people living with and recovering from paralysis.
Vanessa’s campaign will help NeuroHope fund a re-vamped wellness program and will be a MAJOR boost to our services! $10,000 comes down to your VOTES! Just a moment of your time can help change lives at NeuroHope.
Click here to vote! Scroll to the very bottom of the page and select “Vanessa – NeuroHope”, and spread the word!
Vote EARLY AND OFTEN! Polls close on December 16, 2018. The winning project will be announced at the Indianapolis Colts vs New York Giants game on December 23!
It was an AWESOME afternoon at NeuroHope’s inaugural “Swing Fore Hope” charity golf scramble! The rain and thunderstorms held off (somehow), and we had a great turnout. 30 Teams! 26 sponsors! Thank you to all who spent the afternoon with us at The Fort Golf Resort.
A special thanks goes to Hensley Legal Group PC for helping to organize the festivities, Delta Faucet, who featured a faucet and shower head give-away, Andy Mohr Buick GMC, and our headlining sponsors The Incrediplex and Valeo Financial.
Shout out to our generous hole sponsors as well: Goodman Campbell Brain & Spine, Systemax Corporation, Leeuw Oberlies & Campbell PC, Langdon Shaw Associates, Scopelitis Garvin Light Hanson & Feary PC, hc1.com, Heidi Orth, Indie Asset Partners LLC, BATS Wireless, Bright Ideas in Broadripple, Kareo, Restorative Therapies Inc., Community Rehabilitation Hospital, ClaimAid, The National Bank of Indianapolis, Sparenberg Farms, Lannie Thompson: FC Tucker, Rehabilitation Associates of Indiana, Circle City Reporting, Mirazon, Jordan Lemons Construction, National Seating and Mobility, Sunrise Medical, David Bruce: State Farm, NuStep.
We had a fantastic time with a “Longest Drive”, “Closest-to-the-pin”, and “Tournament Champion”, along with raffles and an autographed racing suit courtesy of IndyCar driver Marco Andretti! Together, we raised $15,000! Not to shabby for our first ever outing.
NeuroHope Founder and Executive Director Chris Leeuw was presented with the 2018 “William T. Rosenbaum Friend of Physical Therapy” award by the Indiana chapter of the American Physical Therapy Association (APTA) at Bellarmine University in Louisville, KY on September 22.
From the INAPTA: “The award is presented to honor and recognize the accomplishments of those persons outside our profession who, through their dedicated assistance and support, have promoted our ideals and improved our profession.”
Leeuw was nominated and presented with the award by Donna Peterson, who was recognized as the Schneider PTA of the Year in 2017. Peterson was Leeuw’s primary therapist during his two month inpatient rehabilitation following his 2010 spinal cord injury. Five years later, she joined NeuroHope when Leeuw and physical therapist Nora Foster first launched the clinic to provide long-term, affordable therapy for neurologic injuries.
“Chris Leeuw’s life changed in an instant when a little over 8 years ago, a perfect late summer day and adventure left him paralyzed from the neck down as a result of a C4-C5 SCI. I had the fortunate pleasure of meeting Chris during the early days of this journey as one of his first physical therapists in acute rehabilitation. I knew then that Chris, along with his family, had a special drive that the injury and the status quo of the health care system would not contain.
Fortunately for Chris, he demonstrated early signs that his injury was incomplete and his potential for recovery was great. What he was lacking was time, as insurance was pushing for discharge from acute rehab and the intensive therapy that his injury indicated. Chris and his family, not taking “no” or “that’s how the system works”, as an answer fought for an alternative and found a program in Utah that offered affordable, long term rehabilitation options. Chris thrived in this environment and was able to make huge strides in his recovery. Upon his return to Indiana, Chris vowed to make a difference and began his quest to develop and provide a similar option in Indiana and change the paradigm of rehabilitation and wellness for individuals affected by and living with paralysis in Indiana.
That’s how NeruoHope was born. In the months and years that followed, Chris worked tirelessly to fund and open NeuroHope in February 2015, a non-profit outpatient clinic with a mission to provide affordable, activity-based therapy to people living with and recovering from neurologic injury.
In the last few years, not only has Chris opened NeuroHope, but he has been instrumental in changing legislation that allows funding for long term rehabilitation and wellness, promoted awareness of the needs of those with neurological injuries, been a mentor, inspiration and friend to patients and supporters of Neurohope, facilitated the strategic affiliation with the Christopher & Dana Reeve Foundation NeuroRecovery Network as a one of only 7 Community Fitness and Wellness Centers in the U.S., and lead multiple fundraising efforts which have allowed Neurohope to expand to offset the costs in providing services to countless individuals. On top of that, his most outstanding achievement was hiring me.
In all seriousness, I have been honored to have the unique opportunity to watch Chris battle his personal physical challenges with SCI, but take an idea and turn it into reality that benefits countless individuals. I knew early on, that Chris would always look for a new road, a new way, and never stop striving to be the best version of himself. Chris, through his relentless pursuit of his vision, has provided others with the opportunity to become the best version of themselves and allow them every possible chance for maximum recovery and the best quality of life possible.
I am honored to present Chris Leeuw, my former patient, current boss and long-time friend with the 2018 Bill Rosenbaum Friend of PT Award.”
Less than one year ago, Ryan Bardellini was enjoying his senior year at the International School of Indiana. A standout fencer and student, Ryan’s future plans involved looking at colleges and planning his future. Ryan’s life changed in November of 2017. He was involved in a serious accident and sustained a traumatic brain injury. Ryan was in the hospital for three months, and at an inpatient rehabilitation facility for a few weeks. After his insurance coverage ran out, however, Ryan was discharged, and his recovery slowed.
“He went from having intensive therapy five days a week to being limited to 2 or 3 weekly visits,” says Ryan’s mother Kimberly. “He wasn’t ready to be discharged [from daily therapy], he needed much more.”
Through their own research for resources available to people with brain or spinal cord injuries, the Bardellini’s found NeuroHope to supplement the outpatient visits he was receiving at the Rehabilitation Hospital of Indiana (RHI).
Ryan began coming to NeuroHope on days he did not have sessions at RHI so he could receive the most therapy and exercise he could during the critical first year after his injury. In March of 2018, Ryan was still significantly paralyzed on his right side and was just re-learning to take small steps with a walker. NeuroHope’s therapists and trainers have paid particular attention to his weaknesses and fragile gait pattern over the last 6 months, and have pushed him through vibration plate balancing, electrical stimulation, treadmill training, and core exercises.
By May of 2018, Ryan had gained significant return on his right side and had become strong enough to walk on his own across the stage at his high school graduation. Ryan’s journey, attitude, and hard work have been nothing short of inspiring. He has come far in his life-changing journey, but he is not finished yet. Today, he continues to work with NeuroHope’s trainers, who push him to continue to improve his balance, coordination, and overall strength. And college plans are right around the corner! He’s been accepted to Purdue University and is taking his first class this semester with an eye on returning as a full-time student soon.
As an accomplished fencer – his next goal is get back back on the strip!
Mark your calendars for Monday, September 24!
We are thrilled to announce our 1st Annual “Swing Fore Hope” Golf Scramble to benefit NeuroHope, sponsored by Hensley Legal Group, PC. The action starts at noon at The Fort Golf Resort at Fort Harrison State Park!
Enjoy an end-of-summer Monday hitting the links, enjoy a free lunch, and take a run at some prizes – all to benefit NeuroHope! Scramble rules apply, which means each team plays their best stroke every shot. No matter your golfing skills, you are guaranteed a good time!
– Individual player: $65
– Foursome: $250
Learn more about the outing and register online by clicking here!
Or, download an entry form and mail in your registration by clicking here!
Can’t make it, but would LOVE to show your support?! Donate here!
Impact 100 is a charitable women’s giving circle that awards high impact grants to Indianapolis nonprofits in five specialized areas: Arts & Culture, Education, Environment, Family, and Health & Wellness.
In a highly competitive selection process, one charity from each area emerges as a finalist eligible for a grand prize of $100,000.
Although we didn’t take home the top prize, NeuroHope is honored to be named the 2018 finalist in “Health & Wellness”! At a presentation at the Ritz Charles we were awarded $5,000 to help continue our mission of affordable rehabilitation following neurologic injury!
It’s all thanks to a fantastic giving circle that is truly IMPACTING our entire community. Learn more about Impact 100 by clicking here.
6002 Sunnyside Rd.
Indianapolis, IN 46236
NeuroHope is located on the east wing of the Incrediplex in Lawrence on the northeast side of Indianapolis.
Hours of Operation
Monday – Friday: 9:00 am – 5:00 pm
- CLIENT SPOTLIGHT: Evan FaucettApril 11, 2019 - 1:36 pm
- VIDEO: Overcoming Paralysis, Changing Healthcare, and Finding Your PassionFebruary 20, 2019 - 11:56 am
- VIDEO: Dustin Shillcox Explains Epidural Stimulation that Restores Movement after SCIDecember 20, 2018 - 5:16 pm
- Vote NeuroHope for Indianapolis Colts Cheerleader’s $10,000 Community Challenge!December 3, 2018 - 9:35 am