Recovering From Paralysis And Embracing Adversity with Janne Kouri

AIH 29 | Embracing Adversity

 

After experiencing a traumatic and life-altering moment when he broke his neck and became paralyzed, Janne Kouri has dedicated his life to bettering the lives of people suffering from paralysis. Janne is a disability activist and an entrepreneur. He shares how he embraced his adversity from paralysis even when doctors told him that there’s no hope for recovery. By experiencing all the hardships of finding a rehab center for paralysis, plus the fact that insurance won’t go any farther to support you on your rehab and therapy, Janne created a plan and offers the best hospital-based rehab center in a community setting. He started NextStep Fitness where people can continue to receive the recovery they need after the coverage from insurance runs out. This March to May, He will be riding his wheelchair from Los Angeles to Washington, DC to raise awareness and funds to support the six million individuals and wounded service members living with paralysis in the US.

 

Listen to the podcast here:

Recovering From Paralysis And Embracing Adversity with Janne Kouri

Taylor, this is an amazing day because we took our podcast to the next level.

We were looking at iTunes in the New and Noteworthy Section and Adventures in Health popped up.

We are moving along. We thought we might hit this within six months or within a year. We have to hit it within a couple of months.

A month and a half, which is pretty incredible. A big shout out to everyone who shared this episode and everyone who’s left a five-star review, because without you, we wouldn’t have made it.

Please keep sharing. Please give us a review. Hopefully, a five-star and talk about us to tell us what you like. Tell us what you don’t like because without you, we’re not going to go anywhere. That’s the truth.

In the spirit of a five-star review, I’m going to read one and this is from one of our guests, Thai Starkovich, who was on an episode of the podcast. He was the Army sniper. He talked about emotional health and PTSD. He’s got a very long review on iTunes, but I will read the first piece of it. He goes, “I need to take a moment to let the audience know how full of gratitude I am for my friend, Sean Entin, and his extremely important podcast, Adventures in Health. It’s all about my health and I love adventure. You can imagine how stoked and honored I am to have been interviewed by Sean for their podcast. Passionate professionals, both know better friends to lean on. Mental health and holistic health in general, both tend to take a back seat in life, work, relationships, pain, those and endless other issues that are seemingly more important than in your face. Life is full. It’s oftentimes daunting. We succeed in many aspects of life button neglect ourselves until an acute health issue manifests and can no longer be ignored.”

Check out his podcast because this is a guy who was a Ranger sniper, served overseas, a tremendous individual. He is by far such a hero of mine because he’s not only a husband, but he’s a father and a community guy. This guy moved into the military. He had the command of a huge platoon, a lot of people around him and now he came back, he’s living a life and fulfilling his dreams.

We’re so excited that we’re starting to get more into the reach that we’re hoping to create with this podcast.

It’s been a whole lot of work and we didn’t know. In the beginning, I was going through my ups and downs and battling my own demons, my own darkness. As we start to interview everybody, it is so cool because I’m shedding light on what we’re doing but everyone else is doing. I look at myself here and go, “I’m paralyzed on my left side, on my left arm and my left leg.” I don’t talk about why me? What’s cool about all of this is that we have a guy who’s coming on the show, Janne Kouri, who how do I have the right to self-pity myself here when Janne is wheelchair-bound and learning to stand for the first time. He was on the Good Morning America show.

Good Morning America did a little spotlight on his story and what he’s created as a result.

The guy is inspiring. Sam and John from our shows immediately texted us and called us, “You’ve got to get this guy on.” He created a movement. It’s called NextStep Fitness. It’s everything that I wanted to do in the beginning with my own nonprofit. He’s giving people a chance to get back out there through rehabilitation. Not many people know, but you only get so many hours after your traumatic event. You’re paralyzed. You’re on the couch. You’re on the bed. You’re in the chair. You’re stuck with a cane. You’re like, “How am I going to do this?”

Most people don’t have the money or the funding to continue on with their journey and to try to get better because insurance will only give you so many hours. Janne has built this worldwide NextStep Fitness where he subsidizes 70% of the rehab through his raising of money and funds. He trains great people, human beings, to come in there and work with you so you can get off your butt and get moving again, climb a hill, climb a rock, walk or run or do whatever you want to do. I’m going down there to see if it’s going to help me, but he’s already helping thousands of people. It’s not about why me? It’s about what’s next. He is the epitome of, “I can, I shall, I will.”

The other cool thing that Janne is doing and he’ll touch on that in this show, is he’s about to take a motorized wheelchair and ride it across the country from California to Washington DC. He’s planning on doing 60 miles a day to raise awareness and raise money for people in his community and our community so everyone can start to heal.

Let’s bring him on now.

Welcome to the show, Janne. How are you doing?

I’m doing wonderful. Thanks for having me.

Sean, how are you doing over there?

I’m excited. I’m inspired like always, but this guy is incredible. Janne, why don’t you start with telling us about who you are and take us back to your football days, your college days and from there, what happened?

I’m originally from Finland. I grew up in New York City and Connecticut. I ended up going to Georgetown University where I played football. After college, I spent a year ski bombing in Jackson Hole with a bunch of my good buddies and then ended up moving back to DC where I started a mobile gaming company that was headquartered in Finland. I started this company with my cousins. I was running around the US running our business development. Eventually, I ended up living in Manhattan Beach in California.

After we had sold that company, I worked for another Finnish company. We were headquartered in Santa Monica. It’s another digital entertainment company. That’s what I was doing. Several years ago, when I was playing beach volleyball in Manhattan Beach, that was a hot summer day. I ran into the ocean, dove into a wave and behind the wave was a sandbar. I immediately fractured my C5, C6 vertebrae and was paralyzed. That was a busy day. There were lots of people out there. I was extremely fortunate that a gentleman sitting on the beach saw me and run into the ocean and saw me floating out there. He came out and grabbed me and pulled me to safety. That’s when the story started.

Were you knocked out unconscious?

AIH 29 | Embracing Adversity
Embracing Adversity: Every injury situation is very different. It takes time. It’s a marathon, not a sprint.

 

It’s weird because I remember everything. I remember running out there. I remember somehow I ended up on my back so I could breathe, which was very lucky. Obviously, I was taking in a lot of saltwater, which ended up causing bad pneumonia. I was able to take some breaths, which is the reason I survived. The only part I don’t remember is being dragged from the ocean back to the beach. When I was on the beach, I was fully conscious. Soon after, my girlfriend, now wife and my sister-in-law and some other friends found me there. All the lifeguards and fire department came, got me to safety and took me off to the hospital.

Tell us what then happened. You’re going to the hospital and you find out what? I know it’s an interview on Good Morning America. Let’s hear it from you.

Obviously, when suddenly this happens, you don’t know what happens at first. I was completely paralyzed from my neck down. I couldn’t move anything. I’m sitting there praying. It’s like a stinger or something else. I had no idea the severity of it. When I get to the hospital, I don’t know how much later, it was a few hours. I’m in the ICU and that’s when the doctors came in and told me that I had no hope for recovery and I would never walk again and so forth. It was a very traumatic, shocking, life-altering moment. You don’t know how it’s so dramatic that you don’t know how to react. That story begins. It’s how do we fight through this?

Obviously, I took it very hard and it was a rough few days, but I had a very strong girlfriend, strong father and strong friends and family that were there to support me. They kept telling me, “We’re going to get through this and we’re going to fight through this.” My girlfriend said, “Don’t listen to numbers, you’re not a number. You’re stronger than a piece of data. Don’t listen to your doctors. We’re going to fight through this and get through this.” I don’t know how many days later after that I looked at it like, “You can either live a happy life or you could be depressed.” I made a decision at that point that I want to live a happy life and move forward from here. I did it like every day I gave myself a five-minute, ten-minute cry session and the rest of the day we have to stay positive. That’s how we got through it.

The dark days, are you on meds? Are you on antidepressants? What are you doing during those darkest times?

I spent two months in the ICU. I had bad pneumonia. I had 104-degree fever. I was on a respirator. I wasn’t breathing on my own. I was on a feeding tube. I couldn’t eat. I couldn’t drink water. Every now and then I had to get a little cotton dabbed in my mouth.

I remember those. That’s the worst when you’re getting Vaseline on the lips. I’m begging for anything, any kind of water because I couldn’t eat for ten days either. It’s tough.

It was pretty brutal. Honestly, I was getting all sorts of meds and drugs. I don’t even remember that two months was pretty hazy. I remember I had these glasses. I was on my back all the time that had mirrors in them. They’d stick a laptop somewhere else. I could look up at the ceiling and watch movies. That’s about all the fun I got to have. I was fortunate because I had hundreds of friends visiting me, constantly somebody there by my side. They kept my spirits up. I coded two times. That was pretty scary. After two months, I started getting healthier. At that time, my girlfriend then started to research where I was going to go do my rehab. She traveled all around the United States.

Make a decision in your life that you want it to be happy and not miserable. Click To Tweet

We soon came to find out that at the time there was no real progressive rehab for people with spinal cord injury in the state of California. We were very fortunate to find a doctor by the name of Dr. Susan Harkema who came up. A friend of mine, John Murray, his mom, she’s the one who worked with Christopher Reeve when he got injured at UCLA. She invented locomotor therapy and some of the best therapies in the world for people with spinal cord injury and paralysis. When Susan went to go visit her, she was the one doctor and the one rehab center that gave us hope. We knew right then and there that that’s where I needed to go.

Quickly before we keep going, can you let everyone know who’s not familiar what locomotor therapy is?

Locomotor therapy, I’ll say it’s an advanced form of gait training. You are in a weight barrel harness over a treadmill and you have certified trainers, one on each leg, one on your hips and then another one running the computer. Basically, they’ve proven that they’re repetitive motion. By proper queuing and through weight bearing, you can retrain your nervous system, what it’s like to walk again. Sometimes you’re not always going to recover and walk again. The odds of your recovery are greatly increased. Also, everybody who does Locomotor is going to get healthier. There are so many health benefits outside of pure recovery from blood pressure to circulation, bone density, increasing your cardiovascular health, strengthen your muscles and so forth.

I was on that device in San Diego. I remember getting on it. I was so high with life because I used to love to run and do all kinds of races. I wanted to do Spartan as working out with the SEALs. When I got on that thing, it took four people to get me to walk. It was like two per leg, one on the laptop, one on the harness and I was sweating. Everybody was sweating. It’s such a team effort. I give it a hand to everybody who gets behind that.

The reason there aren’t that many of them around the country is that you have four trainers per client. That’s extremely expensive. That’s one of the big challenges. I was fortunate, I believe I was, if not the first one, the first inpatient that was ever allowed to do the treadmill because insurance in the past would only allow you to do locomotor therapy once your outpatient. They’ve proven that the odds of recovery are so much higher the sooner you get to participate in Locomotor therapy. I was very fortunate that I got to do it so early after my recovery.

That’s your legs. What are you now doing with your arms?

Pretty soon after getting up on the treadmill, I think it was a couple of months or a few months, I started to wiggle my toe. The function throughout my body started coming back. Obviously, every injury situation is very different. It takes time. It’s a marathon, not a sprint.

I hate it in the beginning, but you’re still right.

AIH 29 | Embracing Adversity
Embracing Adversity: Take the opportunity to make a difference in this world.

 

For me mentally once I accepted that it was much easier because at first, I couldn’t pick up a cotton ball. I couldn’t move anything. Slowly, it started coming back. Once I said to myself, “Be proud of the small things. Something might not happen every day or every week or even every month, but keep at it. It will start coming.” That’s what happened. Within a couple of years, I think probably about a year and a half or two years after my injury, I started being able to drive my car by myself. At two and a half, three years after my injury, I was able to put myself to bed. That’s a huge difference from the independence perspective and also from a financial perspective as well. It slowly kept coming. Even to this day, whenever I see friends I haven’t seen in a few months or a year, they’re amazed at how much I continue to recover. You don’t always notice it.

It’s wonderful that you can keep that attitude and keep that perseverance going. What I caught when you were speaking was you made a decision in your life that you wanted to be happy and not miserable. It sounds like your girlfriend, now wife was instrumental in helping you to cultivate that. I’m wondering what’s your practice for maintaining that internal attitude, fortitude and strength?

I’ve been a pretty positive person throughout my life. When this happened, obviously not right away, but soon after I also consider myself a strong person. My father and my family who raised me well and taught me to be strong, I didn’t want to disappoint them. I wanted to show them that they raised a strong, tough kid. I didn’t want to let anybody down. Honestly a big part of it is ego. I want to show people that I’m strong and tough. I can fight through this. For quite sometime before my injury, I was talking with Susan that I want to figure out a way to start getting back. I’ve loosely been involved with charities here and there helping up and never get my hands dirty and doing anything to help others. I know I could.

When this whole thing started, I didn’t know what I was going to do. I knew this was my opportunity to make a difference in this world. With that idea of showing people that I was strong and tough and I didn’t want to let my family down. It’s also like you don’t want to be a burden to other people. If I’m miserable and depressed and not fighting to get stronger and more independent, I feel like a burden. Even though people want to take care of you and help you out, I would feel like a burden. I wanted to do everything I could not to be a burden and do everything I could to show people that I was going to fight so much as I can, be independent as possible and help others as much as possible.

You played football in college. Was it a D-II, D-I?

It’s a 1-AA.

Do you even get to that peak in your life? Now to start to walk again and to give back? You obviously had it inside of you, “I’m not going to sit still.” That’s similar to what I do and with people I speak to all the time. It’s the audience. What people are listening to right now is that what you’re saying is that all it takes is one small movement, even in that toe, the brain will relearn how to connect everything. That’s what happened with me. It’s taking that first step, then taking that second step. The small movements are huge gains. People are asking me, “When can I drive again? When can I do this? When can I do that?” I say pace yourself because at the same time you’re going also have to rest. I’m sure that’s a big thing with you is sleep and letting the body heal on its own.

I wish I could sleep better. I’m not much of a sleeper. I never have been my entire life.

Be independent as possible and help others as much as possible. Click To Tweet

Are you able to have kids? Is that working or not?

We thought about it. I went through the test and I was able to do so. I’m 43 now. We made the conscious decision this past year we’re not going to do it. To be honest, Susan loves her nieces and nephews. For us, at this point in our life, it’s better for us not to do it.

I’ve got two daughters. I love them at times but as they get older, it becomes tough. Taylor knows them well too. I’ll say to that, it’s funny you said you don’t have kids, but every person who comes into your next step is your own child if you got to look at it like that. You have a huge family of these people you put into therapy all the time.

I have my passion in life now. My whole life, I was wondering if I’d have kids, what if I don’t, I’ll be just as happy. It would’ve been great to be a parent. I’m loving what I’m doing now. I’m very passionate about it. It’s tough. I see my friends have families. It takes a lot of time.

On that note, talking about NextStep and what you do, where along on your road to recovery did you come up with the idea and how did you first start getting rolling with it?

It was when I was in the Frazier Rehab in Louisville, probably within five or six months after my injury. We were very close with Dr. Harkema. We got to know the folks at the Christopher and Dana Reeve Foundation very well. We learned a lot about the health care system and the challenges that people are facing and the millions of people that are living with paralysis in the US and around the world and the jobs they are facing. We knew we wanted to move back home to California but there’s nowhere in California that offers what they offer at Frazier Rehab. That’s where the idea for NextStep came.

My wife, Susan, my sister, Tracy and Dr. Harkema were the pivotal ones in writing the business plan. The idea was simple. Why don’t we take what you offer at the best hospital-based rehab center out of the hospital and put it into a community setting? When your insurance drops you, you can still have access to the best rehab and fitness for the rest of your life. That’s what we did. Susan, Tracy and Dr. Harkema put together the plan and we approached the Reeve Foundation. We raised the money. Tracy moved back to LA before we left Louisville and started looking for space and started the hiring process. We opened in June. It was under two years after my injury, we opened the NextStep in Los Angeles.

Where about is the NextStep? I’m coming down.

AIH 29 | Embracing Adversity
Embracing Adversity: You shouldn’t have to move to another state or even in another city or drive three hours just to get rehab and fitness.

 

It’s at south in LAX off the 405 on Redondo Beach Boulevard. That’s Lawndale, Torrance, Redondo Beach.

Christopher & Dana Reeve Foundation are sponsoring you. You’re always looking for more money. You’re raising money constantly because it’s an ongoing process. How many therapists are there? How many clients will come in at any certain time?

I’ll take one step back to explain more about the NextStep and our model. The Christopher & Dana Reeve Foundation and Dr. Harkema back when I was at Frazier formed what’s called the NeuroRecovery Network. Initially, it’s a consortium of the five-top hospital-based rehab centers of the country. The idea was simple. It’s let’s come together and work together on research, work together on figuring out what are the best interventions for people with paralysis, what are the best therapies and also the best practices in terms of running these facilities.

When we started NextStep, we approached them and said, “Why don’t we start a community arm to this?” When people leave the hospital, it’s a seamless transition into a community-based center. NextStep LA became the first community-based center to be a part of this NeuroRecovery Network. That’s the core of our relationship with the Reeve Foundation. We also take data for every one of our clients. We put that into one master Christopher Reeve Foundation database so that we can take that data and show it to the insurance companies. To show them that it would save billions of dollars a year if they supported the services that we offer because we’re proving that our clients had less doctor’s visits, less pressure sores, less cases of diabetes and heart disease and so forth.

Obviously, without access to rehab and fitness, the likelihood of getting life-threatening secondary complications drastically increases for people with paralysis. That’s how this whole thing started. We’ve got always around 50 clients. We work with individuals with all types of different neurological conditions; spinal cord, MS, stroke, traumatic brain injury, Parkinson’s, CP, you name it. We’ve got about 50 clients. We have ten trainers and they all go through the NeuroRecovery Network education and training program. We also train them on site constantly. It’s a very comprehensive training program that all of our trainers have to go through.

Once the insurance was gone and I couldn’t work, it costs me probably to walk again over $1 million with cash and insurance money. Once it’s so hard because if I didn’t have insurance or money, I would end up in a nursing home, getting one-hour a week of therapy where I got thousands of hours to help me take those first steps because what people don’t realize is the cost to walk again, it’s priceless. To be able to be independent, it’s so important for people like ourselves. That’s amazing that you had this organization because I started something called the Move2Improve Foundation, which was similar to what you’re doing, but I never took it that far. I want to help people rehabilitate post their hospital stays because the insurance is going to give you so many of visits, so many hours and it all sucks, the whole healthcare system. The suicide rate for people with stroke is very tough as well too on that level.

On average, insurance covers 36 days of a hospital-based rehab. If you have a spinal cord injury, on average it’s 36 days. You’re kicked out. You’re sent home. You have nowhere to go for the rest of your life. You’re sitting at home, you can’t exercise. You have no access to rehab. It’s extremely difficult to go back to work. Now you’re probably living on disability. The disability is only a couple of $1,000 a month. You have to pay for nursing care, medicine, all your equipment and rent. You’re pretty much screwed.

That’s what happens. The veterans I’ve seen too who have come back post-war, who have complications as well. The VA only gives them so much. They’re stuck being homeless. It’s a vicious cycle. I commend you both for what you do. It’s beyond awesome. It’s extraordinary.

Behind a good man is a stronger and extraordinary woman. Click To Tweet

You are seeing a problem in the world and attacking it by building a solution. You started out in LA, but if you want to let the readers know how many facilities you now have so they can get a sense. This isn’t just one facility that you are going national with what you’re doing.

We have facilities in Los Angeles, Atlanta, Orlando, Kansas City, Raleigh, Phoenix and Las Vegas. We’re about to open our first international facility in Kiev in Ukraine. We’re working on something another international facility that I don’t want to announce yet. It’s been a pretty amazing journey. We have some amazing partnerships across the country. Our goal is to continue to expand. You shouldn’t have to move to another state or even in another city or drive three hours to get rehab and fitness.

If there are able-bodied people reading this, you obviously think about how many options are out there for you. In LA alone, you probably have 20,000 or 30,000 gyms whether it’s your regular gym or Pilates or yoga or whatever it might be. When I first moved back, I didn’t have access to anything. It’s a huge problem when there are six million people in the United States living with paralysis, that’s a significant number of people that don’t have access to these types of resources.

Is that based from birth or is that from a statistic that injury happened one like yours or car accidents?

That’s any type or any form of paralysis such as spinal cord, stroke, MS, TBI, Parkinson’s, all the above.

In America, every 45 seconds someone gets a stroke and it’s growing. I was 39 at the time when this happened. I’m 47 now. It hurts me every time I look down or I look across or I get tagged by somebody in my community and hear about what’s happened to them. They’d go, “What do I do now?” I have an option to tell them what to do. If somebody wanted to come to your NextStep, how do they apply? Obviously, most of these people I talked to don’t have those funds to afford a facility like yours. How does it work?

For example, in our Los Angeles facility, we subsidize 70% of our memberships through fundraising. We only charge our clients 30% of what it costs us to have them in there. It’s a horrible business model from that perspective. We want to make it as affordable as possible for people of all socioeconomic classes. We have all sorts of different membership rates depending if you are doing locomotor therapy or if you’re doing neuromuscular electrical stimulation or you want to come and use the facility on your own and workout. We try to make it as affordable as possible for everybody. You can visit the website. Give us a call. That’s NextStepFitness.org or come into the facility. Typically, we’ll do a tour with the individual, show them all we offer. We’ll schedule an evaluation. We do a 90-minute evaluation with every client. They need to get a doctor’s consent form filled out. The doctor writes off they’re healthy and strong enough to come workout. We will sit down with them after the eval. We’ll present what we think would be the best type of program for them.

The hard facts, 30%, what are we looking at? Let’s say someone like myself suffered a stroke and the left arm is weak, the left leg is weak. What am I looking at out of pocket roughly? Is it $1,000? Is it tens of thousands?

AIH 29 | Embracing Adversity
Embracing Adversity: We want to make rehab as affordable as possible for people of all socio-economic classes.

 

Our most basic membership is $85 a month. We come and do the eval. We do the eval every 90 days for the first year then every six months. You have full access to the facility. We help you get on and off equipment, change weights, do all that type of stuff. You’re about 80% working out on your own. We have our activity-based therapy programs. Depending on your level of injury, we don’t charge more for having more trainers. We offer extra additional trainers if somebody’s injury is more severe. You might be working out with one or two trainers. Depending on if you come once a week, twice a week, three times a week for an hour at a time will depend on what that rate is.

I believe right now if you’re coming in three times a week, it’s around $500. If you’re coming twice a week, it’s $375. That also gives you access to two or three hours of functional electric stimulation and full access to the facility. You could be there for 40 hours a week if you wanted to for that rate. Obviously, locomotor training is more expensive. Our highest level of membership is three hours of Locomotor. That includes three hours of activity-based therapy as well and three hours of FES and full access of the facility. That I believe is $1,475 a month. That is astronomically cheaper than other facilities.

I can say to you too on that level because I’ve been through all of it. Normally evals sometimes are $200 to $250 out of pocket. The fact that you’re charging what you’re charging is incredible. I wish I would have found you years ago because I’m walking now. I still walk with a limp and there’s some pain, but it’s awesome of what you’re providing. I’ve got to tell everyone about this because it’s incredible. You’re based in Manhattan Beach. Are you in San Diego too or in Manhattan right now?

Our facility is actually in Lawndale right off the 405 on Redondo Beach Boulevard.

Janne, do you have any stories of people coming through your facility that you’re able to share with us? I know sometimes people don’t want their stories shared. If you have any stories, it would be incredible for our readers.

There are so many of those stories that have put me on the spots to think. There’s one that always comes to mind is that young girl by the name of Amanda Tim, who came down from Canada. They literally told her to get used to playing board games for the rest of her life. After being at NextStep for about three months, she was bungee jumping. She spent about a year and a half at NextStep. Now she’s back at home in Canada. She’s on the Canadian sailing team. She is skiing for five days a week. She is snowmobiling. She is doing everything under the sun you could imagine and a true champion. We see those types of stories all the time.

A lot of it so much mental because until you are around individuals on a day-to-day basis that are taking their life to the next level and that level, not letting this bring them down. You coming in NextStep, it’s just as much mental as it is physical, the benefit you gain from it. Even though our focus isn’t mental and psychological, when you see the other folks, they are going back to work and starting families and going back to school and having careers and go skiing. Doing all those types of things, you realize that it is possible and I can do this too. That’s what’s motivating when you go in there.

You’re showing people everything that they’re capable of and you’re creating a community. What we’ve found talking to many of the guests that have been on our show is that community can be as impactful as any of the training that you’re doing. Having that support system and that support structure to mentally inspire you on a regular basis.

We talked about our families and this impacts everybody. It’s your families. It’s your friend. It’s your coworkers. When something like this happens to someone, it affects everybody around them. Whenever I’ve seen that at NextStep even the hospital centers, it provides the opportunity for even the family members to talk with one another and learn how to deal with this situation. Also in many cases, it’s great for a mother to drop off their son at NextStep for two hours and go have two hours to be independent. To go do something on their own because a lot of times, they’re caretaking for their loved one for the rest of the day. If you have that opportunity to have some freedom, we’ve seen that to be wonderful as well.

It is so hard on families because I tell the families, when I first meet them, I go to the hospitals a lot. I go to cottages in Santa Barbara, which has the Christopher Reeve Foundation up there. They’re predominant. They deal with spinal cord and stroke. The first days for everybody it’s hard because they’re sitting from the hospital. They feel helpless. They don’t know what to do. We’re running a book right now called the Stroke Hacker, which explains to the family what to do when their loved one is injured. I tell all of them to go see a movie or go do yoga, go for a run because there’s nothing that they can do in the beginning. Their job is going to come in time. When that job comes, it’s painful. I’ve watched my parents go through it. I’ve watched my ex-wife go through it. The number of people who’ve touched my body to help me walk again and to be independent is in the thousands. The fact that you’re able to drop somebody off and say, “Go do what you want to do. You go shopping. You go for a hike. Go get a massage because it tears apart the families.” It does because everyone becomes a caregiver partner and they lose themselves in the process of all of it.

That’s totally understandable.

You look at your wife. Look what she’s gone through and your father and your friends. I’m proud to you, Janne. I’m in awe. I’m so excited to be on this podcast with you because this is exactly what I had been looking for several years now because I knew coming out of this, I had to give back. I want to talk to people about their journey back and their road to recovery because as you know it’s not easy. You played football, two days every day for the rest of your life almost until you can find that time and peace.

It’s definitely not easy. I’ve been extremely fortunate because I’ve had support along the way. Now I have access to this type of facility in my backyard. I can’t imagine not having that. I don’t know where I’d be if I didn’t have the friends and the family support that I did and had access to the top doctors in the world. I was blessed and fortunate and lucky. I want to make sure that I can do whatever I can to make sure that other people have access to that as well. The Christopher & Dana Reeve Foundation has a great resource center based on case managers to people to help you through the process. What you’re doing with this podcast is helping a lot of people. I encourage anybody who’s going through anything, pick up the phone and call us too. We don’t only help you do the training and the facilities, but we act as a resource and help out in any ways we can because I think that’s the other challenging thing. When something happens, you get bombarded with information from a million people and sifting through that information is challenging. We try to help people out in that way as well.

Thank you for offering too, Janne. I want everyone to know what you’re up to next. You’re about to go on a pretty epic adventure?

I am leaving from Manhattan Beach Pier. I got injured by there so there’s some meaning on that. I’m riding my mobile power wheelchair. They call it a biker chair by Bowhead Corp. That’s like off road bike built by this quad that’s amazing. My power mobile, a boat called Cork Chair from Manhattan Beach Pier to Washington DC to Georgetown University. It will definitely be an epic adventure.

We want to talk to you again on the podcast after you do that because I want to hear about that. How many hours is that? If you looked at it, I’m sure you broke it down.

We’re doing approximately 60 miles a day, depending on the uphill, downhill. The goal is 60 miles a day. We will be visiting and doing a bunch of different charity events along the way and visiting rehab centers. We’ll be meeting with individuals, doing impactful things in this community and also learn about some of the challenges people are facing and some of the smaller communities that we visit. My buddy, Nick Moose, we’re filming a documentary about the whole trip. We’ll be posting daily videos and weekly diaries and so forth. I’m excited and looking forward to checking it out this country from a totally different perspective.

What’s your big goal by doing this whole movement?

Number one, raise awareness. I don’t know if you find that as the paralysis problem, but the vast majority of folks in this country still don’t know these issues exist within our healthcare system. Not to blame them, I didn’t know either. I had no idea. I’d assume if you get spinal cord injury, there’s going to be a great rehab center in your town. There will be places for you to go for the rest of your life but that doesn’t exist. To continue to raise awareness about that and bring together the local communities that I visit and tell them about NextStep and some of these programs that we offer. Hopefully and eventually, they will bring those services into their communities as well. Explain to them how needed it is. Also obviously, to raise money to help us continue to expand across the country. We’ll also be giving away the different quality of life grants and so forth to another deserving individual along the way.

Our channel is Stroke Hacker Adventures in Health. I’d love to be able to share your daily journey or your weekly with my communities. If you have anything you want to stick out there, put out there, give it to me and we’ll post all day long for you.

Our #RideForParalysis and you could follow us at @NextStepLA. If you go to NextStepFitness.org, you can find all the information there as well.

Janne, thank you so much for being here. I got one more question and this is one that we ask everyone who comes on. What’s your inspiration?

Obviously, I’m inspired every day. I go into the gym. I have such an incredible staff of trainers. We’re not making millionaires at NextStep and everybody’s there only because they are dedicated and passionate about helping people. My staff and my clients that come to NextStep and their family members are seeing how dedicated they are to getting better and all the amazing things they’re doing with their lives because they’re so motivational. My loving wife, Susan Moffat, she inspires me every day to keep working hard. She works her tail off. She’s brilliant and beautiful. To have her in my life, it keeps me going. I have amazing friends and I want to give back to them and show them that I’m grateful for all their support through the years.

I’m want to have her on the show. If there’s any way we can speak to her because her point of view of what she’s been through to help you. I’ve always said behind a good man is a stronger woman, extraordinary woman. I’d love to talk to her.

I probably give her enough credit. I wouldn’t be here without her. Thank you so much.

Thank you, Janne. We’ll chat soon.

I love to come down before you start your journey and give you a huge hug and thank you.

Thank you. I appreciate this.

I love to do that. Thank you so much.

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About Janne Kouri

AIH 29 | Embracing AdversityFounder & President of NextStep, Disability Activist, Entrepreneur

Janne Kouri is an accomplished entrepreneur, business development leader, philanthropist, investor, and active speaker.

On August 5, 2006, Janne’s life changed in an instant when he broke his neck diving into the ocean in Manhattan Beach, CA. Janne was left paralyzed from the neck down and doctors told him that he had no hope for recovery and that he would never walk again. Since his injury, Janne has dedicated his life to bettering the lives of people suffering from paralysis.

Janne Kouri is the President and Founder of NextStep. NextStep is an internationally recognized non-profit that makes life-changing rehab and fitness accessible and affordable to individuals living with paralysis. Today, most of these individuals are deprived of the resources they desperately need to live long, healthy and happy lives. NextStep’s goal is to open NextStep paralysis recovery centers across the country and abroad to ensure an improved quality-of-life and a continuum of care for this underserved population. By offering standardized activity-based therapy programs and interventions, based on research; our centers provide the best chance for recovery, independence, and health. NextStep’s paralysis recovery centers are located in Los Angeles (HQ), Atlanta, Orlando, Kansas City, Raleigh, Phoenix, Las Vegas, and the Ukraine.

Janne has always had an entrepreneurial spirit. Prior to NextStep, Janne was the North American Director for Sulake Corporation, a world-leading online community entertainment and media company. Janne was also the co-founder of Orchimedia LLC, a groundbreaking Interactive TV and mobile gaming pioneer.

Janne was the recipient of Brunswick School’s 2013 Distinguished Alumni Award. In 1997 he graduated from the Georgetown University Business School with a degree in Marketing. In February 2018, Janne was inducted into the Georgetown University Athletic Hall of Fame. He was the Captain of the Georgetown University Football Team, the MAAC Defensive Player of the Year, Team MVP, two-time 1st Team All-Conference, and an All-American. Janne still holds the Hoya All-Time Sack Record with 31.5 career sacks.

Represented by the Guild Agency, Janne has spoken at numerous universities, conferences, and corporations including TEDx, Nexus Youth Summit, The Abilities Expo, Georgetown University, UCLA, USC, Rutgers University, Stony Brook University and many more. Janne has appeared on ABC’s “Good Morning America,” CBS’ “The Doctors,” CNN, the Discovery Channel, and other nationally televised programs.

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