The Year of Wonder

A lot has been accomplished in 2014. We are so far from where we were at the close of 2013 when we were still picking up the pieces of the accident and building a new life. Over the past year we’ve had some people tell us how good it is to see us “stabilized.” I always find it so odd when someone says that, like we scraped a knee, put a band aid on and are back trucking through life. It’s been such a wild ride, I don’t know if stabilized is something we’ll ever feel. The cycle is more of a “give it all you got, collapse, regroup, and forge forward again,” hoping you’ve gained a little advancement along the way and end up in a better place than where you started.

After going through this pattern many times, I do believe we’ve made progress. Dennis is stronger today than a year ago—and back to doing many things he did pre-accident including driving, overseeing the building of our house, and actively taking part in the kids’ activities spanning everything from swimming, soccer, and even a competitive round of laser tag!

Since this time last year, there have also been many scientific advancements in the paralysis field. From spinal scaffolds, to exoskeletons, and epidural stimulation (check out ReeveBigIdea.org!)—real advancements today and a cure on the horizon are emerging and we are hopeful that they will quickly move from research to clinical phases so they can begin being accessible to Dennis and others who desperately need access to these breakthroughs in the coming years.

Like it was for so many, 2014 was a sprint start to finish for us. It was a year of do more, chase every lead in search of an answer, put in every effort—twice and then some—to try and gain as much ground as possible in hopes it will pay dividends in the years that follow. That was the right focus for a year of exploration, of laying a base of what the next chapter will be, and helping accelerate advancements where we can. But it’s not a sustainable or smart approach long term.

So for 2015, we will pivot. We are dubbing it “The Year of Wonder.” Wonder in all its forms. We will have more fun, more adventures and take part in the wonders that this life brings. Specifically, it will include a family vacation, moving back into our house, and Dennis starting to race again.

We will also be more focused in our efforts, be laser in where and how we spend our time and make this a breakthrough year, a year of wonder, one where leaps versus baby steps forward are achieved.

For each of you we wish the same in 2015. Much joy, much adventure, and many breakthroughs in your challenges and endeavors.

To a wondrous 2015!

Locomotor Training

Dennis is about a month in on locomotor treadmill therapy as part of the Nuerorecovery Network (NRN) run by the Christopher and Dana Reeve Foundation. It’s not a cure, but it is the best rehabilitation therapy out there, often giving better outcomes than other approaches.

It requires a commitment of 90 minutes a day, five days a week. There are only a handful of centers in the country that offer NRN. We’re fortunate that one of those centers is Kessler, which is practically in our backyard, only 25 minutes from our home.

We are also fortunate that Dennis has access to this progressive therapy at all. Taking into account the limited number of NRN locations in the US and the amount of time dedicated to each patient in the program, we estimate about 100 people in the country are a part of the program at any given time. There are 1.28 million people in the US who suffer paralysis from spinal cord injury (with the full paralysis community spanning 6 million people). That translates into less than 1% of the of the spinal cord injury population enrolled in the program at any given moment.

It takes four therapists to provide NRN, one moving each leg, one providing support behind the person receiving the therapy and one person to work the machine to vary the settings and read the inputs during the session.

The first hour of the 90 minutes is spent on the treadmill, with the therapists moving each leg. The session alternates between providing a higher level of support for Dennis to get a more intense bout of repetition and sensory cues, rotations of providing the least amount of support needed to see how much he can do on his own and encourage deeper engagement, and periods of trying to stand with varying levels of support. The idea is to inspire muscle memory and retraining. The last 30 minutes is spent off the treadmill doing assisted stepping, standing, or core exercises to strengthen trunk control and further push potential muscle memory while the nervous system is "excited" by the sensory inputs from the locomotor training.

Whether and how much NRN will work for Dennis is yet to be seen. Any substantial success is uncertain and measured by years versus days or weeks. Regardless of what recovery comes, it is also the best way to stay healthy, offer Dennis exercise, help keep his bones strong and his muscle mass up and for that we are ever grateful.

Team McGorty's Next Chapter

We've come a long way in the 10 months since the accident and we want to say thank you. The support we received after the accident was incredible, like white blood cells rushing to the site of an injury, you surrounded us, the surge of love and support we received was immediate and truly made an impact. A special thank you also to Holy Trinity Church who has been central to us stabilizing and moving forward.

Today, Dennis continues to surpass expectations of what recovery we were told to even dare hope for. Through continued rehab, he has regained full hip movement (critical for stepping), and the beginnings of knee movement. A long, uncertain road ahead, but big progress. We’re hopeful of more to come.

Also, Dennis is back on the road, driving our car outfitted with hand controls. Up next: a handcycle to get him back out there cycling this summer! He's been training on the stationary handcycle at Kessler. This week he set a new personal record for a 10K and continues to push himself to ride further and faster.

The kids, they are doing great.

While there are still things to figure out, we’ve reached a new phase where we're ready to evolve what Team McGorty is about and are asking for your support in new ways.

Going forward, we'll be donating Team McGorty funds to organizations leading the charge in progressive spinal cord research and rehabilitation. This is the best and biggest impact way to help Dennis and the six million other people in the US living with paralysis. There is real reason for hope, real solutions on the horizon. They just need more support to bring them over the finish line.

Two organizations that Team McGorty will be supporting are the Christopher & Dana Reeve Foundation www.christopherreeve.org and NextStep www.nextstepfitness.org. Both are leading the way in delivering results and hope. Both have been instrumental in helping us navigate this journey and give us infinite optimism for the future.

Some people have said they want to help us directly. Supporting these organizations is the best way to do that--a cure is better than any other type of support we could receive. We also know that people want to help in a way that is transparent; we have set up mechanisms to make this possible. We'll know when someone makes a Team McGorty donation and see the aggregation of support. Also, donations are tax deductible and eligible for corporate matching programs. : )

We are very excited about partnering with Reeve and NextStep. Check out the updated www.teammcgorty.com site with links to both these organizations to learn more or donate.

More good things to come!

No One is Complete

The common way to treat a spinal cord injury and the resulting paralysis is the same way we treat most traumas in life:

1) stabilize
2) drive acceptance of the situation
3) cut your losses, move on and focus on what you do have

A rational and safe approach, but one that will rarely yield exceptional results in patients or life. This tact is designed to shield the patient from disappointment. Recoveries are rare.

The road is long and hard, but there is hope-- you just need to be relentless in your search for it, and then fight for every inch of progress.

With spinal cord injuries, you are given one of two paralysis categorizations--complete and incomplete. Complete loosely means that no spinal cord activity is getting far past the injury, and incomplete has some signals getting thru, just not enough. While the prognosis delivered are often similarly bleak for both complete and incomplete, historically receiving a "complete" designation was especially so. It was just as finite as it sounds.

Dennis is a complete. However, his progress continues. We will continue to fight for more recovery. There is no finite here, just forward.

Over the past months, we have been fortunate to meet with many progressive minds in the field. We are beginning to hear the same phrase over and over: "there is no such thing as a complete."  What was thought for decades to be dead in the spinal cord, is now hypothesized to simply be dormant. It just needs a supercharged wakeup call to get things working again.

What if we had just accepted --step 2 of the clinical process for treating a spinal cord injury-- Dennis' prognosis and went the traditional route of routine therapy, with a focus on cutting our losses and moving on to our "new normal"? Likely Dennis wouldn't have come as far as he has. He continues to get more hip movement, can now flex his quadriceps, and has faint hamstring activity. There is no explanation or blueprint of why or what it means for future progress, but we are grateful.

In this new era of hope, Dennis has just been accepted into a clinical therapy program that is the best technology out there. It is called Neuro Recovery Network (NRN). It is an intensive form of rehab, 90 minutes, five days a week, that uses a harness, a treadmill, and four therapists manipulating muscles to inspire muscle memory. Eighteen months ago this therapy wouldn't have been available to Dennis. Just a year and half ago, the thinking would have been "he is a complete, there is no hope and there is no reason to believe that this therapy would work."

I have been lucky enough to witness the progress of another complete on the NRN over the past months. The other day he kicked a soccer ball. That he could do this would have been beyond reason not long ago--but with determination, technology, and hard work - he did it. There are more good things to come.

As Dennis starts his new rehab regime in the new year, it makes me think about the other situations in life we are told are "complete," "finite," "absolute." What if they haven't run their conclusion? What if what we thought was dead is just dormant?

In 2014, my hope is that more people ignore the barriers that other people--and ourselves--put around us. None of us are complete. We will only know how far we can take the possibilities if we set to find out.

4 to 500+

People who know us well know that long before Dennis’ accident, there was a Team McGorty. It was a term we used with the kids to help them understand that sometimes it’s about them, and sometimes it’s about the team—the family. This came into play in situations like Saturday mornings when going to Home Depot or the supermarket didn’t seem like the most exciting outing, so we’d explain, we need to do these things now for Team McGorty, and then this afternoon we’ll go to the playground, pool, etc.

A few weeks ago Declan, our five-year old was having a rough day. We had moved, there were lots of things to get done, lots of change, and it was a hard day for him. I reminded him that we needed to do the things we were doing because it was important for our family, Team McGorty, and reminded him of what a special role he plays in that team. I went on to share with him how lucky we are, our original Team McGorty—mommy, daddy, Declan and Lorelei—had grown from 4 to almost 500. His mood instantly turned around. He was all smiles. It makes me, Dennis and Lorelei smile too.

Throughout our journey since the accident, people have commented that we are strong, but the truth is that it’s our team, all of you, who give us the strength to not just focus on the day to day, but the big picture—to defy expectations for Dennis’ recovery and treat it as a mountain to climb versus a life sentence.

We are grateful and want to say thank you. Our journey is just beginning and we are honored to have you on it with us.

The World Isn’t Flat

Dennis has been home from Kessler rehab for a few weeks now. We were warned by many that the hardest days after being paralyzed aren’t when you get the diagnosis, it’s those first days home. This rang true. It’s when you are ejected from the bubble of people caring and catering to you, and returned to a world that you once walked through with ease, that you realize that you are now living in world that is not built for you. There are band aids here and there to try and make things a bit easier, but overall you are now an outsider, an instant minority, you need to find your own workarounds for almost everything, because no one else is going to do it for you.

The good news is that it does get better. It’s not the “every day will get a little bit easier” that people like to tell you, but everyday we do get more acclimated, a little smarter on how to do things, and a little stronger. The thing that would break you the day before becomes a more natural fiber of your day the next.

We’ve learned and experienced much in the last few weeks. A few of the biggest eye openers:

The world isn’t flat. When Thomas Friedman wrote the “World Is Flat,” he definitely wasn’t sitting in wheelchair. If he was, it would have likely been retitled “The World Is Riddled with Potholes, Uneven Sidewalks and Unusable Ramps.” For any daredevils out there, forget skydiving. If you want to get your heart racing, trying navigating the sidewalks of Cranford or Westfield in a wheelchair. It’s not for the faint of heart.

Paralysis isn’t misunderstood. It’s not understood at all. I think this partially fuels the first problem. People don’t understand the issues—medical, tactical, emotional which makes it hard to help solve them.

A few of the many myths:

Being paralyzed means you can’t feel anything. While it’s true you often can’t feel touch, heat, etc., you can feel pain, not phantom pain (as people often quickly conclude as soon as they hear this), real pain coming from nerve damage, spasms, etc. Your body has been short circuited. It flares up trying to make a connection that it can’t make and the result is searing pain when the body can’t satisfy the signal.

Paralysis simply means you can’t move. That is just one symptom—the one that people see. There are many and they are serious. They are lumped into a classification of “secondary complications.” For anyone paralyzed these secondary complications are anything but secondary. Managing them becomes the focus of your day because they are serious, and only through never-ending vigilance throughout every hour can they be managed. These secondary complications, not the inability to move, are what will land you in the hospital and take a psychological toll often exceeding that of not being able to walk down the street.

One secondary complication is skin breakdown. Normally the body fidgets, even minutely, constantly. This shifts weight and pressure points on your skin. When you are paralyzed, these ongoing micro-movements don’t happen. The skin on your pressure points breaks down—quickly—and once broken it is very difficult and a long road to heal. A great irony is that paralysis lands you in a wheelchair—and that is the absolute worst place for you to be if you want to avoid skin breakdown. Unfortunately, you need the chair to get out in the world and live your life.

The ultimate end game is to be walk again. While yes, walking again is what any paralyzed person hopes for, it’s still just a means to another end of gaining what has been lost—all the life experiences that have been taken from you. The intrinsic human experiences that most of take for granted. For some this might be holding their child. For others it might be the ability to stand at the stove and cook a meal for their family. The experiences lost aren’t a handful, they are many.

Last week we took the kids to the pool. They wanted daddy to come and we are grateful he was able to. When we got there, they waved to daddy and show them how much better their swimming had gotten this summer. But it was still bittersweet. Past years it was Dennis in the pool teaching them to swim. This summer he can’t. If given the choice between being able to be hands on teach the kids how to swim, ride a bike, play soccer, etc. versus simply walk again, Dennis would unequivocally jump at the first. There are experiences that each person misses that far exceed the actual walking—it’s what that ability affords for in life moments.

Lastly, I spend a lot of time playing charades—actual charades—trying to have people visualize why something they are suggesting to me as solution for one of the challenges we face isn’t feasible. When I try to explain to someone why an “accessibility solution” they are offering to make something work for Dennis and our family won’t actually work, they tend to look at me like they are trying to patient with me because they are thinking what they are offering should work. The reality is that what looks okay on paper often doesn’t works in practice. People are especially surprised when they are following “accessibility guidelines.” Another myth to debunk –these guidelines are band aids at best and often don’t accommodate someone in a wheelchair.

For example, we moved into a handicap accessible building as we prepare to renovate our home. Last week I realized that I had been with Dennis each time we left or returned to our building and that I had always opened the door for him. It dawned on me that the way the door was designed, there would be no way he would be able to open it on his own—the angle would be too awkward for him to be able to lean forward, try and pull or push it open.

I made the request to the building to adjust the door, explaining why the current door wouldn’t work. They were confused. It should work. They did what they were supposed to. They had followed accessibility specs. They tried to show me (standing up) “how Dennis could open the door.” I began doing charades of why that thinking was flawed.  “Well, Dennis will be opening it from about this height. You are directly next to the door, he will have a few feet of himself and the chair between him and the door so it’s harder to get leverage the weight of the door…” They were still confused.

When I start recounting this exchange, people start getting upset. “How dare they! They should know better! Aren’t there laws in place to make sure things like this don’t happen!?” But the truth is that the people that run our building really do care. They thought they had done the right thing and followed the design that they needed to. They truly were just dumbfounded that it hadn’t been enough.

It was only later that day when they asked Dennis to come downstairs so a team (!) of people could watch him try to open the door that they understood the flaw in their design and their thinking –and understood it immediately. They are putting in a button to automatically open the door in our building—and future buildings they are constructing. They thanked us for pointing this out to them. They didn’t comprehend that there was shortcoming until they saw someone in a wheelchair trying to use what on paper was handicap accessible.

This episode had a happy ending, but it still makes me sad. I have a lifetime of experience being, ahem, persistent to get what I want. The building management was eager to help us. And it still was so hard—just to put in place a way that my husband could come and go from the building where we live. Most people don’t have these two sides of the equation working for them, which means vast majority of the time the outcome will be less successful.

When I pray it’s always for hope, strength and healing. But understanding needs to be added to that list. I do believe that people want to do the right thing. They want to assure the best quality of life possible not only for Dennis, but other people also suffering from paralysis and other handicaps. They just don’t understand the full extent of the challenges and the solutions needed to make this possible.

Team McGorty

"It doesn't matter where you are in life, it's who you have beside you." - Anonymous