Hope Happens Here: Marissa Kirkling
Life-changer.
The phrase keeps coming up as Marissa Kirkling, a spinal cord injury survivor who was given no hope for recovery at the time of her injury, describes the impact of the epidural stimulator she had implanted in 2018 as part of a clinical trial supported by the Christopher & Dana Reeve Foundation. But it wasn’t for the reason that she had expected.
Marissa has a C4 complete spinal cord injury following a car accident in 2015 that left her quadriplegic. She was 24 at the time, pursuing a nursing degree in Arizona, far away from her hometown of Greensburg, Penn. Everything changed on that day. Her doctor told her mother she would be nothing but a “talking head” for the rest of her life, and advised her to put Marissa in a nursing home. Her mom refused, taking her instead to Craig Hospital, where, Marissa says, “they learned to deal with everyday life.”
It was around that time that Marissa found the Reeve Foundation’s website and signed onto a clinical trial registry. Two years later, she got a call from Frazier Rehab Institute at the University of Louisville, and was subsequently the first to receive the second-generation device in the ongoing clinical trial investigating epidural stimulation for chronic spinal cord injury. Epidural stimulation involves the application of a continuous electrical current — delivered by an implanted device at varying frequencies and intensities — to specific locations on the lower part of the spinal cord. The basic idea is to help the body relearn certain functions with the aid of targeted stimulation to nerves.
‘Like a New World for Me’
Going into it, she didn’t know what to expect. “Everyone wants to walk again or stand again, but I thought it would be easier to make little goals one at a time.” In the trial, she was randomized to join the cardiovascular (CV) group, which focuses on addressing blood pressure dysregulation. Other groups focused on standing and involuntary movement.
“I was kind of bummed at first that I was in the CV group, where you just sit there and measure your blood pressure all the time,” Marissa says. “I was like, wow, this is going to be boring. But after a while I was glad because fixing my blood pressure helped me to do everything else better.”
“I was like a whole new person. I didn’t realize how bad I had actually felt until I felt great. I had more energy. I felt so much more focused. It was like a new world for me.”
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Training the Body to Relearn
The blood pressure issue is more than bothersome; a sudden precipitous rise or fall in blood pressure can be life-threatening. For Marissa, having low blood pressure stifled her activities and degraded her quality of life. “I would try to get up for the day and just pass out. Or it could happen at the store. When you feel sick all the time, you can’t really plan for much. I didn’t want to go to school. I didn’t want to go out because I was afraid something would happen.”
Training with the stimulator enabled Marissa to self-regulate her blood pressure even when the stimulator is off. “By doing that training consistently, my body has learned that this is where my blood pressure is supposed to be. Now that I have trained for so long with the stimulator, I don’t have those episodes anymore. I’m back in school, I go out all the time. I’m in a relationship. It’s literally been a life-changer, just the cardiovascular portion alone.”
“It’s literally been a life-changer, just the cardiovascular portion alone.”
Hard Work, Dedication and Support
It didn’t come easy though. It took two years of intensive training to achieve blood pressure regulation without the stimulation. Standing and regaining voluntary movement are even greater hurdles.
“A lot of people think that you just get this stimulator implanted and you start to move around. That’s not the case at all,” Marissa says. “You really have to try to connect with your body again. You might start by working just the toe, say for an hour a day, then the foot, then eventually the whole leg. It takes practice -- a lot of practice, along with dedication and hard work.”
Community helps also. The rehab team at Frazier became like a big extended family during her two years there, and she and other study participants stay connected through peer support and outreach. Marissa volunteers her time to answer any questions people may have who are considering enrolling.
“The work they’re doing with this whole project is amazing,” she says. “I wish everybody who is quadriplegic or paraplegic could get this stimulator, because it’s just been a life-changer.”
To help support The Big Idea, please visit christopherreeve.org/donate.
Written by Brenda E. Patoine