Sunday, June 22, 2014

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.

Friday, March 21, 2014

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 and NextStep 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 site with links to both these organizations to learn more or donate.

More good things to come!

Wednesday, January 1, 2014

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.