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
NeuroHope’s Director of Therapy Elliot Cohee, and Executive Director Chris Leeuw joined the set of IndyNow! to discuss the need for extended care programs for neurologic injuries, and NeuroHope’s growth over the last several years.
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.”
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.”
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.
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.”
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.
LAWRENCE, Ind. — A local nonprofit rehab center now seeks to reduce barriers to long-term care after receiving a $1 million grant.
The OrthoIndy Foundation awarded the grant to NeuroHope in Lawrence, a physical therapy rehab center.
NeuroHope founder Chris Leeuw is no stranger to the long road of recovery. Leeuw opened the rehab center in 2015 after spending years recovering from his very own accident. He was paralyzed after a swimming accident when he was 28 years old.
Years later, Leeuw now strives to expand access to long-term physical care and rehabilitation.
“When you deal through a catastrophic injury like that, you’re thrown into an entirely different world,” Leeuw said. “Recovery, mentally, physically emotionally, it’s a journey that affects you, your family and there’s a void in healthcare.”
He said he now aims to fill that void.
“We have awesome healthcare here,” Leeuw said. “We are very fortunate that we have great healthcare facilities and great hospitals, but long-term there is a big void in care. A lot of patients fall through the cracks.”
Healthcare costs can be expensive and overwhelming for many recovering from serious injuries, Leeuw said.
“Our mission revolves around making it affordable for people so they can actually have access to physical therapists, have access to some really state of the art interventions to help some neurological injury, spinal cord injury, stroke,” he said.
NeuroHope has been a life-changer for many local patients. No step is ever too small.
“You got to have faith,” said NeuroHope patient Juan Beamon. “You know, faith without works is dead. You just got to keep pushing on.”
Beaman, like many other NeuroHope patients, is learning to walk again after a traumatic incident. He was injured in a car wreck back in 2018, but then became paralyzed after a brain surgery soon after.
His time at NeuroHope serves a motivator.
“It kind of makes me think of a child being born that doesn’t know how to walk,” Beaman said. “It has to learn. [NeuroHope] is really home to me, like, I’ve come in and been accepted by so many people.”
The same holds true for other patients like Mark Bradley.
“May 18, I fell, blacked out at an airport, fell and broke my neck,” Bradley said.
There is not a task too challenging for the 65-year-old.
“I can do a lot more now than I could when I got here,” he said. “It’s been a nice, what, for five months now.”
Thanks to the new grant, Leeuw said his rehab center now awaits hundreds of new stories of triumph and success.
“This is an amazing opportunity for us to be able to help more people,” he said.
NueroHope has expanded its gym. It will also now be able to hire more staff, see more patients and help buy new equipment to help care for patients. Meanwhile, there is one goal in mind – reducing any barriers to care.
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.”
INDIANAPOLIS — It wasn’t freezing that night, but it was chilly. Perfect weather for a little horseplay.
Ryan Bardellini and his friends opened the back of the SUV and Ryan hopped up for a ride. He felt the crisp wind blowing in his face on a 39-degree night last November. He saw the cement road racing beneath him.
It felt good to be hanging with his friends.
Bardellini, a nationally-ranked fencer from Zionsville and senior at the International School of Indiana, had spent most of Thanksgiving break with family.
When he asked his mom to go out that Saturday night, she said yes. He deserved it.
But as Ryan laughed and joked with his friends, something horrific happened inside that SUV. He lost his grip. He flew out of the back of the car.
NeuroHope is making big strives in the rehabilitation arena. The Indianapolis therapy clinic, started by a quadriplegic, has landed a nearly $1 million grant and is now one of 11 worldwide affiliates of the Christopher and Dana Reeve Foundation NeuroRecovery Network. NeroHope’s executive director and founder talks about expanding services.
Chris Leeuw joins the “Edge of Indy” podcast to discuss NeuroHope’s $90,000 “Brackets For Good” Win!
NeuroHope is the newest affiliate of the Christopher and Dana Reeve Foundation NeuroRecovery Network (NRN), and has been featured as a spotlight program on their website / newsletter! Read the original article here!
Full text copied below:
“There is no preparation for a spinal cord injury,” says Chris Leeuw. “You wake up one morning a physically fit, able-bodied person and in the blink of an eye your life is completely transformed. When you are looking at paralysis and the potential permanence of that, that’s a situation that’s almost impossible to describe.”
Leeuw is the Founder and Executive Director of NeuroHope, the newest Christopher & Dana Reeve Foundation NeuroRecovery Network® (NRN) Community Fitness and Wellness Facility in Indianapolis, IN. In August 2010, he sustained a level C4 spinal cord injury in a swimming accident that initially left the then 28-year-old paralyzed from the neck down. Like many, Leeuw was given a poor outlook.
“After a few weeks, I began to see some signs of hope,” said Leeuw. “Early recovery in my fingers and right leg gave me the inspiration I needed to do more. My time in outpatient therapy was up and I was still mostly paralyzed. I knew that with more rehab, I had a good chance of recovery.”
In 2011, he travelled to Neuroworx in South Jordan, UT, a NRN Community Fitness and Wellness Facility at the time.
“Neuroworx understood neurological recovery and had the resources and experience to help me get my life back,” said Leeuw. “It took two years to get where I am today, walking and independent. Recovery is slow and different for everyone, but much of the journey is similar for all who are hurt.”
Although Leeuw has had a good deal of recovery, his injury is still a big part of his everyday life.
“I wanted to bring the cutting-edge interventions I’d experienced at Neuroworx back to Indianapolis,” said Leeuw. “Living with a spinal cord injury is not just about recovery, it is about long-term maintenance. Every movement is a conscious effort. These recoveries are a lot more than neurologic return, a lot of it is maintaining your body afterward.”
“Right now in traditional healthcare, people get discharged from inpatient and insurance will reimburse only for a limited number of outpatient visits. Then they go home,” said Leeuw. “These individuals need more time to maximize their recovery. They need time to learn some of the skills to deal with their new life, and in most communities, there is no place for them to go. There is a void in long-term rehab options.”
Leeuw reached out for community support. Working with the Indiana state legislature, Leeuw received a nearly $1 million grant from the Indiana Spinal Cord and Brain Research Fund which allowed NeuroHope to expand. The facility moved into a larger space, bought new equipment and now sees 50 participants a year, with a hope to double that number by 2019.
“My main goals were to create a clinic where people could come for continued, affordable care and we wanted to join the NRN,” said Leeuw. “I saw first-hand the value of the NRN interventions and I wanted badly to bring that to Indiana.”
In 2017, NeuroHope’s staff was invited to begin training to become a NRN Community Fitness and Wellness facility.
“We are thrilled to be part of the NRN. It gives us a chance to reach more people and bring that level of care to Indiana for affordable private pay rates,” said Leeuw. “Healthcare is great here but we want to go beyond that so people can continue their care. This is about providing a wellness center in addition to therapy where disabled individuals, wounded veterans, stroke survivors, brain injury survivors can go to exercise to live a long, happy and healthy life.”
Leeuw continues, “An injury changes you, changes your family, and changes your character. Every family needs more help when they leave the hospital. Our hope is to be there for them as they navigate their new path, and put them in the best position to maximize their recovery and quality of life.”
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