Westport woman shares recovery from rare Guillain-Barre Syndrome that left her paralyzed
A Westport woman's life "went from 60 to zero in a heartbeat" when she became unable to move.
Jess Branson, of Westport, had a busy career and an active social life. But in the spring of 2021, Branson's life "went from 60 to zero in a heartbeat" when she became unable to move.
It all began with a stomach bug. "Over time, I started to get numbness and tingling in my hands and my feet," Branson told News 12. She felt weak and lost sensation in her limbs, but despite numerous doctor and emergency room visits, Branson said she couldn't get any answers until she became paralyzed from the shoulders down.
"It felt surreal. I would look at my feet and say, 'Move,' and try and step and I could not move them or advance them forward. I had no sense or awareness or where my body was," Branson explained. "So unlike shooting pain or 'I feel nauseous,' it was like an out of body experience."
Branson was finally diagnosed with Guillain-Barre Syndrome, a rare and serious neurological disorder.
"GBS or Guillain-Barre Syndrome is when the immune system releases these antibodies, which instead of attacking viruses and bacteria, they actually attack your nerves," said Dr. Imran Ali, of Gaylord Hospital. "Basically, the nerves that talk to your muscles are affected, so your muscles are not able to contract properly and sometimes it can be very frightening for patients."
It's estimated there is one to two cases of GBS for every 100,000 people, according to Ali, who explained GBS is caused by another infection triggering the immune system.
"It could be a viral infection or most commonly a gastroenteritis, and the thought is the immune system is activated to fight the bacteria, but it's over activated," he said. The first step is an IV treatment to wipe out the harmful antibodies, but that's just the beginning of the recovery process.
"Once the antibodies are gone, the hurricane is done. Now it's time to clean up and pick up the damage, and that means aggressive therapy," Ali told News 12.
So, in August of 2021, Branson began intensive rehabilitation at Gaylord Hospital where she had to relearn the basics.
"It's almost like another home away from home because that's really where I had to put my trust in the teams that really brought me back to life," Branson said.
After three months, she left the hospital, now able to use a wheelchair. Her rehab journey continued at home as therapists and nurses helped her get back to doing everyday things.
"Taking steps, putting on socks, brushing your hair, holding a toothbrush. Things that you take for granted, that you never ever think about," Branson recalled. "It was truly like being a baby again and learning how again, to do the simplest things in life. Forget running a marathon, forget getting back to the gym, forget living the busy, robust social and professional Iife that I had been living."
It was almost a year before Branson no longer needed her wheelchair.
"It was tricky, but I have to say my grit, my determination, my perseverance, my faith—I live in compete gratitude—kept me going. My mantra was, 'We go forward. We don't go back,'" she said.
Inspirational quotes and sayings cover the window by Branson's desk. One in particular explains why she decided to talk with News 12: "One day you will tell your story about how you overcame what you went through, and it'll be someone else's survival guide."
"I really feel like my job is to help others and to listen and to be an empath and to say, 'We're all in this together and we can heal together,'" Branson stated.
She said she wanted to educate people about GBS but also share what she's learned in this journey to mobility, which continues today.
"Being your own self advocate and listening to your body is probably the number one thing I want to say because it's so easy not to," Branson said. "For me, I sort of ignored the symptoms and pushed them to the side thinking the numbness is I slept on a foot wrong, or I'm having an off day, or I worked out too much, or I'm really stressed. So, I probably ignored the symptoms more than I should have. At the same time, I was going to doctors who were not picking up on it."
Her recovery is still underway because her case was so severe.
"I am still not physically where I want to be, but it is an exercise in patience, and working on someone else's timeline—which I'm not used to, and that's OK—and I will get there," Branson said.
On average, recovery can take up to a year, with some people having residual effects going into year two like pain, fatigue, and less endurance, according to Ali.
"Recovery is excellent with the proper treatment and the proper therapy," he explained, adding that risk factors include older age and already have an auto-immune disease.
May is Guillain-Barre Syndrome Awareness Month.
You can learn more about GBS here.
