NeuroHope at Inaugural Reeve Summit

When Christopher Reeve became paralyzed 25 years ago, spinal cord injury was launched into the public eye.  Paralysis can happen to anyone anywhere.  There are 18,000 new injuries in the United States every year.  It is a community no one expects to join.  When we become a part of it – the fear, suffering, pain, & emotional despair is more than we think possible to bear.  But, we also discover strength, the capacity to overcome mental and physical adversity, and an appreciation and outlook on life we never knew was possible. We experience a healthcare system in need of change, a research community in need of a road map for collaboration and funding, and a paralysis community fighting for a voice for advocacy.

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.

While still a long way from a cure – the spinal cord injury world is at an exciting time as research and knowledge of both neurorecovery and rehabilitative interventions are advancing. It’s important for scientists and researchers to challenge each other , but also communicate and collaborate for CURE and CARE.  In the meantime, the paralysis community – people recovering from and living with paralysis need to be ready, stay healthy, and ENJOY THIS LIFE!

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.

When the injured “join” this community, we realize there are passionate voices that will not give up on advocacy for cure, care, and rehabilitative access.  Research, healthcare, quality of life, and disability rights are all connected in this world.

Many thanks to the Christopher and Dana Reeve Foundation for being the force that brings these voices together.

NeuroHope Presents at APTA National Conference

The NeuroHope story was presented at the American Physical Therapy Association’s (APTA) Combined Sections Meeting in Denver, Colorado on February 14th!

Dr. Stephanie A. Miller from the Krannert School of Physical Therapy at The University of Indianapolis and NeuroHope’s Director of Therapy, Nora Foster presented preliminary findings of our ongoing research study at the APTA’s annual summit where thousands of physical therapists and researchers from around the globe gather to share the latest developments and practices in the physical therapy world.

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!

Client Spotlight: Alexa Cantwell

Alexa Cantwell, a 27 year old from Indianapolis, didn’t become a wheelchair-user instantaneously like so many others who injure their spinal cords. Instead, when she was just 8 years old, Alexa sustained a spinal stroke which resulted in a gradual decline in her mobility through her teens.

The spinal stroke caused damage from the C2 to T2 vertabrae.  “Because of the nature of the stroke, it took doctors a long time to discover what actually happened,” Alexa says. “I started using AFO leg braces when I was around 10 years old and later used forearm crutches.  I didn’t use a wheelchair full-time until I was seventeen.”

Since a spinal stroke can cause an incomplete injury, Alexa’s entire body is affected in some way.  She still has some sensation throughout her body. “Just a little less in my legs and feet. I can also move my legs a very small amount,” she says.

When Alexa was 12, her family moved into an accessible home as a precautionary step.  By the time she was in her teens she needed to use the elevator and accessible apartment in the basement. “When I was in college, we renovated my bathroom so I could use it independently.  We installed a roll-in shower with a bench, a sink I can roll under, and bars by the toilet. I’m so grateful to have a house that I could easily transition to,” Alexa says.

Since her injury was not traumatic, she did not go through traditional specialized neurological rehabilitation. Instead, she was sent to general physical therapy. “Before being at NeuroHope, I had gone to a facility that specialized in helping patients with neurological injuries and conditions, but it was still pretty traditional in a lot of ways. I wasn’t showing enough improvement after a short time so I was discharged.”

Frustrated with the results of therapy, she wanted more and was introduced to NeuroHope when she saw a post on Instagram.  “I checked out their page not realizing NeuroHope was in Indiana. I was surprised and excited to find out they were so close to where I lived. I wanted to try out a place that offered something different from traditional physical therapy but everything I found was too far away.”

Alexa has now been coming to NeuroHope for more than a year and has seen exciting results. “I’ve always been drawn to alternative methods instead of the traditional route when it comes to my health, so NeuroHope was right up my alley. One of my favorite things is the Xcite machine (Neuromuscular Electrical Stimulation). At my first appointment, I got to use it and stand up with a walker. It felt really good to be on my feet again.”

Now working as a self-employed lifestyle and wellness coach after graduating with writing and business administration degrees, Alexa stays busy with family and friends when she’s not working. “They’re so supportive and I don’t know what I’d do without them,” she says. “I also enjoy serving at church and traveling. I haven’t been out of the country since I’ve been in my chair, but it’s on my bucket list.”

2nd Annual “Swing Fore Hope” Raises $24,000!

Major thanks to the 100+ golfers and all sponsors that made the “2019 Swing Fore Hope” charity golf scramble a success! We had a blast at Ironwood Golf Club and raised $24,000 for NeuroHope, which provides long-term rehabilitation and wellness programs for people recovering from neurologic injury.

We have new “Champions of the Cup”: Brad Matthews, Steve Vance, Kevin Vance, and Jon Rolfsen who have 12 months to reign supreme! A special thanks goes to our event sponsors  Hensley Legal Group, PCIncrediplexDelta Faucet Company, and Langdon Shaw Associates.

It was a fantastic day made possible by the volunteers that secured our auction items, and the hole sponsors that made the day a success:

The National Bank of Indianapolis, Goodman Campbell Brain and Spine, Sunrise Medical, Circle City Reporting, Bright Ideas of Broadripple, F.C. Tucker (Lannie Thompson), hc1 .com, Indie Asset Partners, Systemax Corporation, BATS Wireless, Rehabilitation Associates of Indiana, Patterson Horth General Contractors, tsAllen Photos, Lynch Harrison & Brumleve Inc., Burger King of Kokomo and Muncie, The George Insurance Agency, Sparenberg Farms, Ben Franklin, The Spickelmier Family, and The Phil and Karen Thomas Family.

 

 

 

 

 

 

 

 

 

NeuroHope Wins $23,000 as Impact 100 Finalist

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!

Contact us us here for more information!

CLIENT SPOTLIGHT: Evan Faucett

On July 9, 2018,  Evan Faucett’s life changed in the blink of an eye.   Only a few months after he received his professional motocross license, he crashed during jump at a competition in Kokomo.  The spinal cord and brain injury Evan sustained have taken him along a grueling road to recovery.   After being discharged from inpatient rehabilitation 17 days after his injury, Evan came to NeuroHope to continue his journey.
He arrives each day with grit in his soul, and a smile on and his face.  Watch his story and be inspired!

VIDEO: Overcoming Paralysis, Changing Healthcare, and Finding Your Passion

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.

 

Full talk:

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.

VIDEO: Dustin Shillcox Explains Epidural Stimulation that Restores Movement after SCI

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.

DustinLiftingLeg

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.

Vote NeuroHope for Indianapolis Colts Cheerleader’s $10,000 Community Challenge!

The Indianapolis Colts Cheerleaders have launched a “Community Impact Challenge” and NeuroHope needs YOUR VOTE to win a $10,000 grant!

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!

Epidural Stimulation Study Allows Three More Paralyzed People to Take Steps

In September, a breakthough in epidural stimulation research made global headlines.  The New England Journal of Medicine published work from The Spinal Cord Injury Research Center at the University of Louisville, which announced that four paralyzed people regained the ability to walk after being implanted with a stimulation device and undergoing months of physical training.
Now, a new study published in Nature and Nature Neuroscience has revealed similar results in three more spinal cord injured subjects.
Epidural stimulation involves surgery that implants a set of electrodes directly on to a person’s injured spinal cord.  A power pack is also implanted underneath the person’s skin.  When the device is turned on, the spinal cord is stimulated and messages are sent to the body that bypass the injury.  (Above photo credit: The Guardian)
Dr. Susan Harkema, Director of the Christopher and Dana Reeve Foundation NeuroRecovery Network (NRN), was first behind epidural stimulation 8 years ago that restored function in multiple people with motor complete spinal cord injury.   Over the last several years her research has expanded and major milestones have been met.  First, epidural stimulation provided the ability to stand.  Then, bits of voluntary and task-specific movement were discovered.   Finally, unassisted STEPS took place.
All of these successes were performed in labs, and were combined with an incredible amount of time and repetition, but the results are fascinating, and the knowledge is still in its infancy.
NeuroHope joined the Reeve Foundation NRN earlier this year.  As a result, we are now one of a select number of sites in the world that is using what has been discovered about the unique electrical parameters in the implants, and investigating if it can be translated to Neuromuscular Electrical Stimulation (NMES) over the skin.  NMES is similar to Functional Electrical Stimulation (FES), but uses pre-programmed, task specific activities set at exclusive FDA-approved parameters that are aimed at targeting both the muscle and the circuitry of the spinal cord itself.
It is not yet known if NMES has the ability to promote neurorecovery, but we are proud to begin data collection for the NRN and thankful for the opportunity to offer it in a plan of care for our clients.