General Blog Posts – Page 8

Small-Town Company Making Global Impact for Paralysis Community

December 23, 2014/in General Blog Posts/by Chris Leeuw

One hundred miles southwest of the bustling suburbs of the Twin cities is the town of Morton, Minnesota.

A 2-hour drive down a series of two-lane highways through a mix of farmland, tundra, and open space, takes you to the tiny burg of less than 500 people. Morton boasts just a handful of intersections and corner stores, but a block off Main Street, in a gravel driveway at the foot of a small hill, sits a modest size building with aluminum siding. It’s the headquarters of Altimate Medical Inc., which does business under the more familiar name EasyStand.

Nestled alongside a grain elevator and a seemingly abandoned railroad track, it’s not exactly the kind of place you expect to find a company making a global impact in the medical field. But, inside, EasyStand’s team of 40 employees design, develop, manufacture, and ship state-of-the-art standing frames to medical facilities and to people living with paralysis around the world. “I don’t think many people in this area even know what we do here,” said Kyle Smith, EasyStand Marketing Manager. “I’m from the area and didn’t fully realize the impact we had until I started working here.”

Every day 30-40 EasyStand standing frames are built from scratch, assembled, tested, disassembled and shipped from Morton to rehabilitation hospitals, physical therapy clinics, skilled nursing centers, and individual buyers around the world. Not bad for a small-town company started in the 1980s by Alan Tholkes, a C6-7 quadriplegic. Tholkes began tinkering with contraptions in a garage in order to create a device that could help him spend time out of his wheelchair.

“Many people don’t understand the toll that being confined to a wheelchair can have on the body," Smith said. “Paralyzed individuals must spend time out of a seated position on a regular basis. Being upright puts weight through the body, which maintains bone density, prevents muscle contracture, helps with circulation, and much more.”

Paralysis is more than losing motor function.

A large part of living with paralysis is learning to maintain a body that is no longer in full communication with the brain. Paralyzed limbs don’t simply become useless dangling appendages. Muscles become tight and spastic. They need to be stretched and re-positioned regularly to avoid locking up. Skin breakdown and pressure sores are a constant threat when too much time is spent in the same position, and bodily functions like digestion and circulation are all affected when the body remains sedentary.

EasyStand products provide sit-to-stand support.

Their frames feature an adjustable seat bottom that rises vertically to brace the waist as the unit lifts the body to standing position. Knee and hip supports lock to stabilize the lower body. Their most versatile unit, the EasyStand Evolv, is also EasyStand’s best seller. According to Smith, the Evolv is often the best option for individual home use. A large chest level tray lets users work on a computer, read, or browse the internet while standing. More advanced features include a mobile unit that users with hand and arm function can push and maneuver around their home while standing.

The EasyStand Glider is another popular model. The Glider enables active standing by providing arm handles and lower body range of motion. This lets users move the arm handles to create reciprocal movement in the legs, which makes a cardio workout possible while in position.

Standing frames have proven to benefit people that use them in their homes, and have become an important part of the rehabilitation process as well. Spinal cord injuries above the T1 level may have extreme blood pressure changes. Orthostatic Hypotension (dropping blood pressure) can hit when the body is upright. Standing frames are used to slowly re-acclimate the body to being upright again.

Following my C4 injury in 2010, I was first placed in a standing frame one month after my accident. I could only remain upright for a few seconds, but it marked a significant point in the recovery process. Over time, tolerance builds as the body adjusts.

Standing frames are, however, relatively expensive. A price range of $2,200-$6,000 limits the number of people that can afford them for in-home use. EasyStand is often able to work with insurance companies to secure financing for some people, but like most insurance appeals, the pleading can be difficult.

Unfortunately, in the same way that long-term rehabilitation is limited for those recovering from neurologic injury, so too are access to many of the resources like standing frames that are needed after “rehabilitation” is over.

Living with paralysis is a battle. It's an ongoing process that requires life-long maintenance.

A major flaw in most communities is the lack of specialized health and wellness centers for the disabled, where equipment like an EasyStand can be accessed by those not fortunate enough to have a unit in there home.

As difficult as it may seem for the able-bodied population to maintain a healthy and active lifestyle, the struggle is multiplied 10-fold for the disabled. This is the crux of the NeuroHope vision: Long-term rehabilitation and accessible wellness for all of us living with neurologic injury.

An EasyStand is one of the three core equipment pieces needed for NeuroHope before we begin operation in early 2015.

We need your help to make it happen:

Video: Denial Letter from Insurance

November 8, 2014/in General Blog Posts/by Chris Leeuw

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

October 20, 2014/in Annoucements, General Blog Posts/by Chris Leeuw

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.

Steve’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.

The 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.

NeuroHope Featured on ‘Inside Indiana Business’

September 21, 2014/in Annoucements, General Blog Posts/by Chris Leeuw

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.

The 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)

One Summer Sunday: A Sister’s Perspective

August 15, 2014/in General Blog Posts, Success Story/by Chris Leeuw

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?”

4 Ways Outpatient Physical Therapy Must Change

March 22, 2014/in General Blog Posts/by Chris Leeuw

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.

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.

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

There 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.