This month we are excited to share an article written by our very own Dana Guest for Biohackers Magazine’s Lifespanning Edition. Lifespanning is a disciplined approach combining different methods to help balance one’s environment that contributes to a healthy and fulfilling life. It’s not just about adding a quantity of moments, but also improving quality of life. When asked to share her story, Dana realized that her time as a client at CORE has been all about lifespanning.
Challenging Paralysis and Changing Lives
Dana Lyn Guest
It was June, the summer before my senior year of high school, when a Mack truck going 55 mph collided with my stopped car at a red light in Tampa, Florida. The force of being hit by something so large, so fast caused the vertebrae in my spine to explode, sending shards of bone into my spinal cord at the C6 level, severing it. It also severed my life into a “before” and an “after.” The “after” felt insurmountable, but with the unwavering support of my family and friends, I rallied. The next few years were spent rehabilitating my body and my life. I graduated from college, met my husband, built an adapted home, had a daughter, and tried to just get on with it. Yet, I still remembered the words said to me in those early days and carried a sense of impending doom through all of the highs and lows, masking my thoughts from everyone around me.
At the age of 26, a regular checkup showed I had early stage osteoporosis. Secondary medical conditions like this are extremely common with a spinal cord injury (SCI), but it still was a startling discovery. My daughter was barely in kindergarten and every motherly instinct in my body screamed at the unfairness of my years with her possibly being cut short due to additional complications related to my SCI. I went straight home and started scouring the internet for any information that would help.
Fighting Back.
My search led me to a website for a facility called Project Walk in Carlsbad, California, which highlighted numerous stories of paralyzed people who were fighting to recover through exercise-based programs. I was intrigued. There is no cure for SCI, but maybe there was a better way to manage it. I booked a two week visit, kissed my daughter goodbye, and flew to California where I threw myself into a rigorous training program for six hours per day. After my accident, I had completed physical therapy, occupational therapy, and recreational therapy at some of the best neuro-rehabilitation hospitals in the country, but traditional therapies for SCI focused on gaining strength in the muscles you preserved post injury and relearning daily living skills. Traditional medicine also teaches new SCI patients that survivors have a two year window of recovery and after that, nothing would likely change.
Exercise-based programs, like Project Walk, challenged the medical field and essentially questioned, “Why?” All of the sessions were done completely out of the wheelchair environment and very quickly I realized there was so much more I could move, feel, and accomplish physically than I ever imagined. I felt better with less nerve pain, less spasms, and less fatigue. The two weeks flew by and I went home with a mission. I had to find somewhere or someone who was doing this type of program. For the first time since my accident, I felt like I was truly fighting back against the permanent war SCI had waged on my body.
And, I was not the only one. Back home in Florida, I connected with my fellow SCI community, many of whom were in similar situations. We had all survived, but surviving was not enough; we wanted better options for living with paralysis. Through this network I discovered that a like-minded center was starting two hours from my home. This was a pivotal moment and changed the trajectory of my life in fundamental ways.
Changing the Game.
Over the decade since that moment, as the field of neurorecovery has evolved and grown, research has demonstrated that neuroplasticity allows the brain and spinal cord to adapt and recover functions affected by injury. The spinal cord can reassign affected functions through spared neural pathways. However, individuals must repetitively stimulate the spinal cord by practicing weakened movements. This is the basis for what is now known as Activity Based Training. The Center of Recovery and Exercise, known as CORE, is embarking on our thirteen year anniversary as one of the leading neurorecovery centers (there are only 40 overall in the United States), providing Activity Based Training to hundreds of paralysis survivors from around the world. I say “our,” because I have had the privilege of working alongside the founding team since day one in multiple roles, both as a client and an advocate for others.
At first glance, CORE looks like a mainstream gym, with mirrors and exercise equipment lining every wall, the music pumping and the energy thrumming. However, on closer inspection the equipment happens to be some of the most high tech in the field of rehabilitation and the training team to be the most comprehensive and highly skilled in terms of exercise science and applying it to paralysis populations. Often, being paralyzed is the least troublesome aspect of life with a SCI. It is the secondary medical complications that ravage the body and over time, the mind. Along with osteoporosis, survivors face chronic bladder and bowel complications, weight gain and/or loss, low blood pressure, cardiovascular disease, pressure ulcers, increased risk of infection, spasticity, pain, depression, and anxiety to name a few. Activity Based Training modalities at CORE designed to combat this encompass the principles of weight bearing activities, electrical stimulation, core strengthening, locomotor training and massed practice, all of which are completed outside of the wheelchair environment. CORE also offers indoor aquatic training, as well as coach-led adaptive fitness classes that focus on strength and conditioning.
The other significant difference from traditional physical rehabilitation is time. The length of hospital stays for spinal cord injury patients is declining with the average stay in hospital acute care at 11 days, down from 24 in the 1970’s, and rehabilitation stays at 31 days, down from 98 days in the 1970’s. As a quadriplegic, I was nowhere near ready for re-entry to the world at 31 days so, for me, these numbers are shocking. With individualized goals built around participant’s evolving needs, Activity Based Training offers clients the time necessary for true recovery. It often becomes a lifestyle change for those with lifelong diagnoses and strives to bridge the gap in the continuum of care. The most exciting, albeit gradual development, in the medical field has been the education, perception, and understanding of what Activity Based Training can mean for patients with paralysis. Research finally has time on its side with multiple published benefits ranging from improvements in mobility, upper limb function, neurological status, body composition, bowel and bladder function and mental health improvements, along with a reduction in cardiovascular and metabolic risk factors. Activity Based Training is still not a cure, but it is a game changer for people living with paralysis.Those who trust the process are achieving goals once thought impossible, as well as improving their health and overall quality of life. While there have not been longevity studies done yet related to SCI and the effects of Activity Based Training, a study published in the journal Circulation found a substantially lower risk of mortality was observed among able-bodied individuals who had adequate levels of both long-term moderate and vigorous physical activity. If we stop treating “disabled” bodies differently in terms of activity level, could we see an improvement in mortality rates for this population? Hopefully further research will support a similar conclusion for this population.