Video: Denial Letter from Insurance

Last year, with the help of a local production company, we shot the NeuroHope promo video that tells my story and captures what we aim to build in Indianapolis.  (This video is featured on our home page.  You can also view it here.)

One day after we finished taping, I remained in the studio for hours and shared everything I've learned and experienced over the last 5 years, from the day of the accident and life as a quadriplegic to re-learning my first steps and the many intricacies of neurologic injury and recovery.

In the coming months, I'll be breaking down much of this "bonus footage" into short clips about different topics in an effort to keep the conversation going. The first video is below.  In it, I share one of the many denial letters my insurance company sent to me throughout my recovery.   INCREDIBLY, it claims that I wasn't progressing enough to justify extended therapy.

The need for NeuroHope in a nutshell.

Be sure to "Like" NeuroHope on Facebook, and click "Subscribe" on YouTube to receive updates from our channel.

 

NuStep Recumbent Trainer Donated to NeuroHope

We began a crowdfunding campaign in August to help raise start-up costs for NeuroHope. The first equipment piece on our wish list, a piece that Nora and I consider an integral part of any rehabilitation and wellness clinic, was a NuStep recumbent cross trainer. Now, we are thrilled to announce that our first machine has been generously donated by NuStep!

I reached out to NuStep VP of Sales and Marketing Steve Sarns shortly after we launched the campaign and told him my story.  I explained what we are building in Indiana, and let him know the role NuStep had throughout my personal recovery. A NuStep was the first piece of equipment I could power (ever so slightly) on my own after total paralysis. Over the course of two years, from nursing home to rehabilitation clinic, a NuStep remained part of my daily therapy as I recovered movement and built strength and endurance.

Last month Steve welcomed me to NuStep headquarters in Ann Arbor, Michigan to tour the facility. I was blown away. Not just by the campus, factory, and facility (which was much larger and structured than I imagined), but by the entire staff. This is a team that is proud of what they have created and is genuine in their mission.

photo-2Steve’s father Dick Sarns founded NuStep in 1987, but the idea was born in the 1960’s when Dick began to research exercise products for people in cardiac rehabilitation. He wanted to create an easily accessible recumbent bike-style machine that could provide a safe and effective workout for people of all ability levels. The bicycle seat and pedals, however, were a problem; they were transformed to a chair with a stepping motion. Upper and lower body movements were connected to move in a reciprocal pattern, and NuStep was born. Over the last 20 years the machine has evolved and the company has grown. Every machine is made and shipped from their Ann Arbor campus. Sarns says around 40 new machines are built and shipped around the world each day.

photo-1The NuStep is not built specifically for people living with spinal cord injury. But, what makes the machine special is the accessibility it provides for people recovering from and living with varying degrees of disability. In rehabilitation a NuStep can serve as a therapy tool that some patients may benefit from early in their recovery. Incomplete spinal cord injuries need every opportunity to get their bodies moving. They must spend every moment they can sending signals through their healing central nervous system to promote as much neuroplastic gain as possible. One of the most memorable milestones in my recovery, on par with the moment I took my first step, was the first time I used a NuStep.

The first few months of therapy after my accident consisted mostly of range of motion exercises and assisted movement from therapists. That was the extent of my abilities as a quadriplegic with only trace amounts of movement from the neck down. After three months, however, movement had faintly returned to portions of my legs, and my body had finally regained the ability to better regulate blood pressure. I still lacked the ability to sit upright on my own, but my body could finally tolerate being in an upright position without passing out. My arms were still paralyzed but my therapist thought my legs might be strong enough to give the NuStep a try. She transferred me to the seat, put my legs and hands in place, and there I sat – in a machine and on my own for the first since my accident. It took a few seconds, but the pedals budged and soon all four limbs were gliding to the movement my legs provided.

It was the first moment I no longer felt completely paralyzed. I was barely moving the machine at the lowest setting, but I was moving it. It rejuvenated me. It gave me new goals to focus on and served as the impetus to the next level of my rehabilitation.

My unique experience aside, the main benefit of these machines is their role in wellness. They were built to provide people of all ability levels a way to achieve a low impact, full body-work out. It is just as important for people with spinal cord injures to remain healthy through exercise as it is for the able-bodied population. No matter the level of motor return, all spinal cord injuries require an incredible amount of daily maintenance. A NuStep is an elliptical machine or treadmill for the disabled. The motion loosens muscles, alleviates spasticity, improves circulation, prevents pressure sores and promotes overall health. The machine has adaptations that can be easily added for individuals lacking leg or hand function, making a full cardio workout possible for nearly all injury levels.

We plan to have our NuStep available when NeuroHope opens this winter. Whether it be for open-gym wellness purposes, or as a warm-up before a therapy session, we are excited to have the addition. I can’t thank the Sarns family and the NuStep team enough. It is an incredible gesture from a company making a difference in the lives of their clients.

We hope this NuStep will be the first of several for our facility.

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NeuroHope Featured on ‘Inside Indiana Business’

NeuroHope was proud to be featured on Inside Indiana Business with Gerry Dick last week!

A huge thanks goes to IIB's Health reporter Barbara Lewis for having me in the studio to spread the word about our mission of bringing the first extended rehabilitation and wellness center to Indiana.  I was able to briefly share my journey back from total paralysis, explain what we are creating in Indianapolis, and promote our crowdfunding campaign that is currently underway.

Inside In - makin pointThe program aired in Indianapolis on WFYI (PBS) and WTHR (NBC), and on affiliates around the state all weekend.

To watch the segment, click here.  (You will find the NeuroHope thumbnail on the right of the screen)

As SCI Research Advances, Therapy Must Be Accessible

It’s an exciting time for spinal cord injury (SCI) science and research.

The last 12 months have seen breakthroughs in laboratories and therapy gyms around country, and have led to papers published in some of the most reputable publications in the world. SCI foundations and medical organizations are aggressively pursing funds to finance research they hope may bring them closer to the cure for paralysis.  Directly linked to that cure, should it ever come, will be the need for an incredible amount of rehabilitative therapy.   Long-term therapy that, in the current health care system, is nearly impossible to receive.

To be clear, the “cure” for paralysis is not around the corner.  The scientific community is nowhere close.   Strides are being made however, in discovering some of ways the nervous system works.  Scientists and doctors are embracing neuroplasticity, the concept that the nervous system is not necessarily irreparable, but in some cases can “learn” to retrain itself over extended periods of time. 

Right now, scientists are witnessing long-distance axon growth (transmission lines of the nervous system) in SCI models.  They’re studying the transplant of neural stem cells into SCI patients.  They’re even investigating ways to use technology to route signals from the brain past injury levels.

And, in April, researchers from the University of Louisville and UCLA announced the biggest news of all.  In a study that made headlines worldwide, four men who had been paralyzed for years (pictured above) shocked their own scientists when they re-gained bits of voluntary movement as a result of epidural stimulation of the spinal cord.  Each man had a stimulator surgically implanted in his spinal cord, that when turned on, mimics signals from the brain.  Movement was expected.  Electricity stimulates the cord, which stimulates the muscle.  Voluntary movement, however, was what shocked the world.   With the device turned on, all four were able to move muscles in their hips, ankles, and toes on command.

As exciting as these breakthroughs are for the SCI community, they still don’t represent a “cure”.  The four men only experience movement when the stimulation device is turned on, and that movement is minimal.   Much more research is needed, and the study resulted in more questions than answers, but it is without question the start of something exciting in the field.

But, lost in the headlines of the results, is the time, preparation, and access to therapy that the four men needed to be eligible for the procedure and for the procedure to be successful.

These are not four guys plucked out of their chairs 3 years post injury. All four had been participating in unique and aggressive wellness programs at facilities in the Christopher and Dana Reeve Foundation NeuroRecovery Network. 

DustinCrop2Dustin Shillcox is one of them.  I met Dustin shortly after his spinal cord injury, two  years before he was selected to be one of the fortunate four in the study.  Dustin and I were both injured in 2010.  Like myself, he attended Neuroworx in Utah, one of the few places in the country where aggressive, long-term therapy is accessible after injury. Dustin and I rehabbed together at Neuroworx nearly every day for the better part of 2011 and 2012.  And, we both participated in the 2012 Kentucky Derby Mini-Marathon by walking / rolling segments of the race with the Reeve Foundation.

Dustin, and the other three individuals selected, had to meet specific criteria (injury level, motor complete, time after injury, etc.) to be eligible for the study.  Once selected, they were also required to participate in 80 Locomotor Training sessions before the procedure.   Eighty sessions! Just to prepare.

After the devices were implanted in their spinal cords, 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

When the results hit the media last spring, most spinal cord injured people had the same thought: “How do I get that implant?!”

But, in spite of what it may sound like, this 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 take part 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.   Therein lies the problem. 

Even if epidural stimulation, or any other neurologic breakthrough, advances to a point it becomes commonplace, a complete change in the policy of outpatient therapy needs to take effect.

Maybe advances in stem cell research will continue, and methods to safely re-grow neurons will be discovered.  Maybe technology will advance to the point signals from the brain can be routed straight to the extremities. 

Even if a magic wand made a cure available tomorrow, long-term rehabilitation programs would need to be available for there to be a benefit.

Right now those programs do not exist in most communities.   

Fortunately, a paradigm shift is coming.  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 is creating one in Indiana. 

Not only so programs are in place for discoveries in the future, but so programs are in place for those that need it now. That’s our mission.  With your help we will get there.

Learn more about epidural stimulation, and other SCI research here.

Photo courtesy: Christopher & Dana Reeve Foundation, Esquire.com

 

 

 

 

 

 

 

 

NeuroHope Shadowing Neuroworx this Week!

NeuroHope's DPT Nora Foster and I are visting Neuroworx in South Jordan, Utah this week. Be sure to "like" NeuroHope on Facebook, and follow us on twitter for pictures and updates! (link on the homepage)

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Neuroworx co-founders Dr. Dale Hull and DPT Jan Black were kind enough to let Nora shadow their operations this week. It is an awesome opportunity to learn from the best. Neuroworx has been the inspiration for creating NeuroHope. I came to Neuroworx 6 months after my injury, still wheelchair bound, and spent a year and a half in therapy there. I left my wheelchair behind when I came home in 2012.

Visit their website at: www.neuroworx.org to see what they have created in Utah. I view Neuroworx as the gold standard in SCI recovery. They are changing the paradigm in outpatient rehabilitation through aggressive, activity-based therapy, and long term access.

 

You can't recover from spinal cord injury in 8 weeks. They get it. We get it. Let's bring this quality of care to Indiana as well.

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We have a long way to go in our fundraising campaign, please help to spread the word. All donations help!

Whether it is a $10 contribution and a retweet to help our viral campaign, or a connection to a major donor or corporate sponsor – Everything helps!

We'll get there – Visit our campaign below!

 

 

One Summer Sunday: A Sister’s Perspective

Chris and Allison

My sister Allison has been by my side since day one after the accident 4 years ago. 

At the Rehabilitation hospital, she stayed well past the "allowed" visiting hours each night.  At the nursing home,  she kept me company, fed me, and did her best to keep my spirits up during the darkest times.  She spent hours fighting and writing hospital and insurance company administrators in an effort to grant more rehabilitation time.  She was my biggest cheerleader every step of the way as I slowly gained back my mobility and independence.  She even walked with me as I struggled through a mile at a fundraiser for the Reeve Foundation at the Kentucky Derby Marathon in 2012. 

Now, she is playing an instrumental role in helping to create NeuroHope.

Allison recently posted the update below on her facebook page.  It's both chilling and moving, and a reminder that entire families are changed by spinal cord injury – not just the person thrown into paralysis.

Essentially 4 years ago – August 8, 2010.

It was a sunny afternoon. I was enjoying a typically beautiful summer day at Lake Wawasee with close friends and family. I remember going on boat rides and trying to take kiddo’s on the jet-skis.  We were “borrowing” Chris’s two SeaDoos, and I remember calling my "little" brother to ask his advice about some issue we were having.

Carefree and oblivious.

“So Chris, what kind of oil do they take?” We spoke so briefly. Just a random chat. It's funny how the random details stick with you.

I remember our dear friends packed up early to go home and to work/school the next day. I think the first day of school that year was the upcoming Monday.  I stayed behind at the cottage. I was vacuuming, cleaning, and enjoying one last summer sunset with a plan to drive back to Indianapolis in the morning.

I didn't hear from anyone else that evening and I crashed early.  It still shatters my soul to think what was going on back home.

I woke up the next morning to strange and somber voicemails on my phone. From cousin Julie: “Allison, I heard about Chris’s accident, call me, let me know what we can do, we love you.”

That was how I heard the news.  Through all the drama of the day, a helicopter trip to the ICU and a night spent in the Emergency Room, Mom and Dad hadn’t called me. They knew I was three hours north and feared me driving back on my own. They were caught up in a nightmare.

Somethings are a blur now. We felt like zombies for months. Tears and Panic. Hope and Fear.

"Fight fight fight" , became the mantra.  I will never forget the strength of Chris’s attitude. I still try to live each day with gratitude and purpose.

Today, we have a renewed purpose.

Four years after a C4/5 spinal cord injury left him paralyzed from the neck down, we have created a public charity that will offer the extended rehabilitation services he struggled so hard to obtain.

We need your support.  We need help to spread the word.

If you haven’t already, please watch and share the inspirational video that Chris put together with help from the Christopher and Dana Reeve Foundation and his close friends.  It is too easy to take the simple things for granted in life. Mobility. Freedom. Health.

Take a moment and breathe in your life and your blessings.  Life can change in an instant and yet we all have the power to change lives.

Ask yourself, "What change will I make today?"

Visit our campaign through the link below!

 

 

Crowdfunding and Video now Live!

It is official!  Fundraising for NeuroHope has begun!

We unveiled our promotional video and launched our capital campaign yesterday with great results: $3,000 of our initial $125,000 was raised on Day 1.  Thanks to all who showed support right out of the gate.  Early momentum is critically important in crowdfunding. 

We have a long way to go.  Let's get this going and spread the word!  Please copy and paste the crowdfunding link in your Facebook status updates, tweets, LinkedIn feeds, and email everyone you know!

I'm extremely proud of the way the video turned out.  This was 10 months in the making.  Frazier Rehabilitation Institute in Louisville was kind enough to let us take cameras into their facility to show Locomotor Training, FES access, individual workouts and more.  Soon, we will have the same tools in Indianapolis.

A special thanks goes to Dr. Susan Harkema of the Reeve Foundation NeuroRecovery Network for taking the time to chat during our visit, and the awesome traniers and clients that were willing to be featured in the video.  Additionally, a HUGE thank-you to Invention Pictures in Indianapolis, and the outstanding post-production work of my good friends Mike Sparks and Jeremy Weinstein.

Watch the video and learn about our crowdfunding campaign below.

 

 

 

NeuroHope to Open in Fountain Square

Happy to announce that NeuroHope will have a future home at the Sutphin Center located in the Fountain Square neighborhood!

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This is an exciting development as we begin to lay the foundation for the first extended neuro-rehabilitation facility in Indiana, and we are thrilled at the opportunity to begin at the Sutphin Center for Clinical Care, which is operated by the University of Indianapolis.  This space will help facilitate a collaboration with UIndy faculty at the prestigious Krannert School of Physical Therapy.  NeuroHope will be launching a capital fundraising campaign next week to gather the resources needed to open doors and begin operation by January 2015.

This is a huge step for NeuroHope.  We now have a wellness room, a location to begin individual workouts with our Physical Therapist Nora Foster, and a place to provide access to Functional Electrical Stimulation, a standing frame, and more.  It’s a perfect jumping off point as we build our services and funding.

Official campaign details and promotional video – coming next week!

Help us open our doors! Stay tuned.

Nora Foster Becomes NeuroHope’s Director of Therapy

When we unveiled NeuroHope last March our top priority was finding the right physical therapist.

The vision and the inspiration discussed on this website can only take us so far. The right clinician drives everything we hope to accomplish.  We knew finding that person would not be an easy task.

We needed an ambitious Doctor of Physical Therapy with experience in neurologic recovery.  Someone who has worked with spinal cord injuries and the intricacies and complications, from spasticity to blood pressure variances, that come with it.

We needed someone passionate about activity based recovery, with an understanding that aggressive exercise after injury promotes neuroplasticity and long-term health.

We needed someone that recognized the need for continued rehabilitation, and who was willing to take a chance with a start-up non-profit with a vision.

We found her!

I’m thrilled to announce Physical Therapist Nora Foster has joined us to become NeuroHope’s Director of Therapy

I have rehabbed with more therapists than I can count throughout my recovery. Some have different areas of expertise than others, and some have better skill sets than others.  There is nothing more important than a clinician’s quality of care and we are thrilled to have Nora leading the way for NeuroHope as we begin raising funds to open our doors!

You can read here bio below:

Nora shares the NeuroHope vision of creating Indiana’s first extended rehabilitative and wellness facility, and she is excited to provide future clients with the aggressive, activity based therapy and exercise they need.

Nora is a graduate of Bethel College (IN) and earned her Doctorate degree (DPT) from the Krannert School of Physical Therapy at the University of Indianapolis.

During her graduate studies, Nora became passionate about working with the neurologic population.  She began her clinical career working at an inpatient rehabilitation facility specializing in Spinal Cord Injury (SCI), and has also spent time at both skilled nursing facilities and outpatient clinics, and has attended courses in SCI, clinical education and wheelchair positioning.

She is an active member of the American Physical Therapy Association (APTA), a certified Clinical Instructor, and has helped create a SCI support group in the Indianapolis area.  Her research activities include a published study in the NeuroRehabilitation journal on community-based group exercise for persons with Parkinson’s disease.

Nora married her husband Brent in 2013. They enjoy traveling, the outdoors, and are active campers and kayakers.

 

4 Ways Outpatient Physical Therapy Must Change

The average stay at a rehabilitation hospital after a spinal cord injury is 37 days.

Much of that time revolves around a grueling 3-4 hour per day routine of physical and occupational therapy that is integral to the recovery process, as messages from the brain attempt to re-communicate with the body.  Unfortunately, when patients are discharged, therapy comes to a swift and premature halt.  The injured move home and graduate to outpatient care.  This “graduation” means therapy visits are slashed.  Depending on insurance coverage, time is limited to two or three hours per week, which are then capped at a small total annually.

It’s clear to both patients and clinicians that the limited number of outpatient visits, (and the incredibly high costs of those visits) are a huge problem for the injured.  Therapists spend hours each day documenting progress that begs insurance for more time.

That’s a different topic, for a different day.

What’s not as clear, and what took me three years visiting clinics around the country to understand, is that the approach of outpatient therapy at many facilities needs to change at a fundamental level.  

1.  Shift focus from traditional therapy to activity-based therapy

It’s time for neurologic rehab to move beyond “traditional” physical therapy that focuses on compensatory techniques (methods that show patients how to compensate for what they’ve lost by using what they have).  The underlying goal of traditional therapy is to teach patients how to adapt to their injury, so they can move on with their lives as soon as possible.LT Treadmill fn

Traditional therapy certainly has its value.  There is tremendous importance in learning how to adapt to injury, and find ways to gain back independence.

But, a new paradigm of neuro recovery is gaining traction at some of the elite rehab facilities around the country.  It’s a shift toward activity-based therapy that focuses on strengthening the weaker muscles and nerve connections through intense functional exercise.  This may include a number of different techniques: weight bearing, assisted treadmill and cycling, or aqua therapy – anything to help promote activity both below and above the injury level.

This more recent approach is based on research indicating that the nervous system has, to a certain extent, the ability to “re-train” itself through neuroplasticity.  Which, simply put, is the idea that the central nervous system is not completely irrepairable.  Neurons that relay information through the spinal cord try hard to repair and re-organize themselves after injury.  Activity, and a blend of therapy, exercise, and repetition can help promote this.

Rehab facilities like Shepherd Center's Beyond Therapy, Craig Hospital’s PEAK Center, Magee Rehab, and others are already focusing on activity-based therapy.  More facilities need to follow suit.

 2.  Develop wellness programs at the facility for patient off-days

Access, repetition, and more access. 

That, above all else is what needs to change most about outpatient therapy.vitaglidejpg fn

I’ve lost count of the number of physical and occupational therapists I’ve met and worked with since my spinal cord injury.  I’ve never met one who disagrees with the mantra of access and repetition. They fight a constant battle for more outpatient visits and more time to work with patients. 

A combination outpatient clinic / wellness center makes too much sense not be more common.

Two physical therapy visits per week are not enough rehab for spinal cord injury.  Increasing that time through exercise programs with aides and trainers on off days or after therapy visits can make up for it.

Patients should be able to come to the facility and use what they have learned from their therapists to continue their rehab.  They should have access to the tools, and assistance from aides to develop a workout plan on par with their “official” outpatient visit.  This access can provide the injured more rehab, AND can ensure the limited time they have with a therapist is better spent.   

A therapist knows how to properly support and guide a subluxed shoulder through PNF patterns or serratus presses.  A therapist can pinpoint irregular gait patterns and suggest how to fix it.  A therapist’s time is best used for that.  Save time on an armbike, recumbent bike, or time practicing fine motor skills for when the “official” therapy is over.  Aides or personal trainers can help with that, and supervise routines the therapist may prescribe.

Neuroworx and Frazier Rehab focus on a similar style of rehab and wellness.  Their model needs to be replicated.

 3. Blend methods of technology and exercise

Lokomat 1 fnThere is no singular “magic” method of physical therapy for patients with neurologic injury.  Robotic therapy may be very beneficial to one person; old fashioned assisted exercise with a therapist may be the best course of treatment for another person.  Neurologic recovery is far more complex than rehabbing a torn ACL or rotator cuff that has a standard protocol of care and expectation of results.

So, having access to the latest and greatest technological resources like robotics, a body-weight supported treadmill system, or electrical stimulation is fantastic, but any of these methods alone is not enough.  Just like an outpatient visit simply to perform squats is not enough.

“Should we work on hip-flexors today?”  isn’t going to cut it.  Just like harnessing someone up in a Lokomat twice a week isn’t going to cut it.

It takes a comprehensive approach.  A treatment plan that includes time spent using cutting edge equipment, and 1-on-1 exercise with experienced therapists. 

For many outpatient clinics it is often one or the other. 

4.  Create a gym-like atmosphere, not a doctor’s office

The best and most effective physical therapy sessions are WORKOUTS.  They are intense and rigorous routines that get the heart pumping and muscles stretched and fatigued.  Regardless of the injury level, the wheelchair-bound must get out of their chairs and moving, not just for the sake of recovery, but for overall physical and mental health as well.

Therapists need to take a page out of a personal trainer’s playbook and combine their expertise with fitness and exercise routines.

This goes for the atmosphere in the clinic as well. The injured spend a great deal of time in doctor’s offices.  Outpatient therapy should not seem like another doctor visit, sitting in a waiting room until a therapist comes to work on a few isolated muscle movements.  Patients need time to loosen up on a machine like a Nu-Step, or an armbike, and get stretched by an aide before therapy begins.  Muscles affected by paralysis need time to iron out spasticity and prep themselves for use.  Warming up is important for an able-bodied person before a workout, and much more so for people with paralysis.

So, turn on music, open the area, and create a community.  Turn physical therapy into a gym environment, not a doctor’s office.

I’ve seen this approach first-hand at Neuroworx, NextStep Fitness, Project Walk, Journey Forward, Courage Kenny, and more.

Throughout my recovery I’ve been fortunate enough to experience the practices at some of the most forward-thinking facilities in the country.  Every year, when my insurance refreshes and I return to the more traditional programs in Indiana, I see the void, but I also see the potential. 

Many of the resources are present.  All that is missing is the catalyst for change.

For a rehab facility to truly consider itself a beacon in neurologic care, it’s not a question of if it evolves a standard of care – it’s a question of when.