From SCI patient to research participant & staff member: a personal journeyOctober 17, 2011
I’m Lauren Verlizzo and I work in Dr. Aiko Thompson’s Translational Neurological Research lab here at Helen Hayes Hospital where I began not as an employee, but a patient.
In July of 2002, I suffered from a C5-C6 incomplete anterior spinal cord injury. I was given less than a ten percent chance of walking. After six months spent in the spinal cord unit, my rehab continued in Long Island, Miami, and back at Helen Hayes Hospital. Through intense physical therapy and perseverance, I now rely solely on a right side AFO and Lofstrand crutches to walk short distances.
In September 2009, I started reflex training with Dr. Aiko Thompson, where electrodes were placed directly on my leg. I had electrical stimulation prior to this, but never in a consistent manner. I deal with chronic spasticity: my right leg will routinely go into extension or I experience clonus to the point of imbalance. I also have a severe hip hike. When the conditioning part of the study began, I struggled a bit with how to mentally control the H-reflex. Within a month, however, focusing became second nature. It required an intense amount of concentration, but the more success I had in a trial, the more motivated I became.
This motivation paid off. I experienced significant relaxation of my calf, my hips evened out, and I was able to maintain knee flexion during walking. I had more energy as I was able to sustain longer, faster steps. The tension in my arms and shoulders becomes unbearable at times but that too normalized, as I no longer had to put as much pressure on the crutches through my upper body as my legs functioned at a higher level. Six months post-study, I maintained a low reflex response. I only hope I can try this again and experience the same positive results.
In the spring of 2011, I returned for the TMS (transcranial magnetic stimulation) training study, which was an entirely different experience. Instead of electrical stim to my legs, I was getting it to my head. I had no dorsiflexion prior, my ankle and heel was extremely tight, and I was experiencing a significant amount of hip pain. I did not have the outstanding success I did with the reflex training, but I attribute much of that to the above stated conditions. It was far from a failure; on the contrary, I was the only participant to reach 100% success during one block of 75 trials. After another particularly good session, I raised my toes without any assistance. Experiencing even a modicum of success towards the conclusion of my study was enough for me to want to continue trying, and doing so led to better results.
Dr. Thompson is nothing but supportive. While she couldn’t promise me anything would work for certain, she gave me the confidence to want to succeed. Her research is an asset to anyone in the SCI, stroke, or MS population.
I’m in the unique position to observe what’s going in the lab and will report back to you, but I’d like your help as well. I’d like to create a forum where you feel comfortable sharing questions, experiences, feelings, etc. Maybe you or someone you know partakes in research, has in the past, or wants to. Perhaps you have a general interest or insight into the subject. Whatever the situation, research requires participation in all forms to move forward. This is as much a personal journey as it is a scientific one. I hope you will join me.
Enjoy good health,