By Mia Barone
One in 100,000. Those are the odds of being affected by Guillain-Barré Syndrome, a rare disorder in which the immune system attacks the nervous system, causing paralysis. The syndrome, GBS for short, is characterized by rapid onset muscle weakness.
In my case, this meant that in two days, I went from being a typical, active college student attending a Texas A&M football game with my friends to being a quadriplegic patient in the Intensive Care Unit (ICU).
I awoke on the morning of Sept. 17 with tingling in my left hand and face. Initially worried I was having a stroke, I called my friend to take me to the emergency room in College Station. I was diagnosed with carpal tunnel and discharged but couldn’t shake the sense that something was seriously wrong. I returned to the ER and was examined and sent home again, but I continued to become weaker and began to lose control of my muscles. Later, on the way to dinner with my mom, I lost feeling in my legs and collapsed in the restaurant parking lot. We went straight back to the hospital, where I was carried in and admitted to the ICU. My paralysis ascended from my legs, immobilizing and numbing my arms and even my face. By nightfall, I had also lost control of my eyes and had severe double vision.
I had a lumbar puncture and was examined by a neurologist, who diagnosed me with probable Guillain-Barré Syndrome. I was also diagnosed with the Miller Fisher variant of the syndrome, which was why my eyes were affected. The team explained to my parents and me that most patients with Miller Fisher also lose respiratory function, so they recommended that I transfer quickly to a hospital in Houston. They also started me on IV immunoglobulin to try and stop the rapid effects of the disease.
Transferring to Houston was the right choice.
On the fourth day after the onset of my disease, I was intubated and put on full mechanical ventilation. Ultimately, I lost all ability to move. I was unable to open my eyes and could only communicate by using my eyebrows! I had excellent care, but many scary experiences, from pneumonia and a collapsed lung to severely low blood pressure and a Code Blue due to my tracheostomy being accidentally pulled out. Although my weeks in the neuro ICU were the hardest of my life, I kept up hope that I would recover one day. My family stayed right by my side and the medical team worked around the clock to keep me alive.
After two weeks of intubation, I received a tracheostomy and was soon able to wean off of ventilation. With the trach, I was able to breathe more freely and even talk a little bit. My team at the hospital began to recommend a transfer to TIRR Memorial Hermann. On Friday, Oct. 12, after nearly a month in intensive care, I was moved to TIRR Memorial Hermann.
Beginning my recovery at TIRR Memorial Hermann
When I first got to TIRR Memorial Hermann, I could barely lift my head off the pillow. Everything else was completely paralyzed. I still had a trach and a feeding tube. I had to be transferred by sling to move anywhere. I remember crying on my first day because it was so painful and nauseating to even try and sit up! Despite this, I set a goal to walk out of the hospital.
Luckily, I had an incredible doctor, Dr. P. Jacob Joseph, and therapy team at TIRR Memorial Hermann. Day One, they got my spirits up and pushed me to get better. I was able to see big improvements in my mobility every 12 hours and regained a sense of agency in my own life, which was so rewarding.
Even though each day was a challenge, I continually had breakthroughs. On Oct. 19, one week after arriving at TIRR Memorial Hermann, I stood up for the first time. I worked on and achieved my other goals, from learning to groom myself again to feeding myself.
I spent the next three weeks in daily speech, physical and occupational therapy with a great therapy team, who encouraged me every day. In therapy we focused on a variety of things to increase my strength, balance and fine motor skills. I graduated from being able to stand on my own for long periods of time to being able to walk short distances in the TIRR Memorial Hermann gym using a walker. One thing I loved about my experience at TIRR Memorial Hermann was being able to use the different and advanced technologies in the gym to work on my recovery. Tools like the Vector really helped me get back on my feet!
Today, I’m walking entirely on my own.
Three weeks after I arrived, I walked 1,200 feet by myself with no equipment.
The next day, I was discharged and walked out of the hospital on my own, which was my goal.
The progress that I made at TIRR Memorial Hermann was incredible. I was initially told that I had a 50 percent chance of walking at six months. Today, two months since the onset of my illness, I am walking entirely on my own and have regained function and feeling in all of my joints. During my time at TIRR Memorial Hermann, I felt very happy, despite going through an incredibly challenging illness. (The same was true of my fellow patients.) The staff encouraged me to find the fun in each day and push through the obstacles ahead of me. In large part, I attribute my recovery to this attitude.
When I look back at my time at TIRR Memorial Hermann, I think of a quote from Morgan Harper Nichols. “Cling to joy: audacious and unbridled joy, that looks for light in everything, even in your waiting.” TIRR Memorial Hermann’s unique mindset allowed me to recover faster than I ever expected, and for that I will always be grateful.
Learn more about what sets TIRR Memorial Hermann apart from other rehabilitation hospitals.