AANEM Foundation News Express

AANEM Foundation News Express

Connection Is Key: How One GBS Survivor Is Making a Difference Online

10/19/2020
 
pic-(1).JPGConnection Is Key: How One GBS Survivor Is Making a Difference Online
 
When Dalton Floyd was 12 years old, he created a Facebook page. While this page could’ve been dedicated to his favorite professional wrestler or everything esports, he picked something a bit heavier, and a bit closer to his heart: Guillain-Barré syndrome (GBS). 
 
The 7-day long hospital stay that led to his own diagnosis 6 years earlier left Dalton’s parents in a state of confusion and worry — they had never even heard of GBS before, and the internet certainly wasn’t the goldmine of information that it is today. 
 
“Facebook hadn’t even dethroned Myspace yet!” Dalton jokes. 
 
But now, as he approaches his college graduation, the highly-celebrated Facebook page has connected thousands of GBS survivors across the globe, offering a slice of comfort and camaraderie following an oftentimes terrifying experience. 
 
Everyone with GBS faces a drastically different situation, as it can affect people of any age or gender and gradually runs throughout one’s body. In Dalton’s case, pain traveled from his feet through his waist, and the doctors were luckily able to reach a diagnosis before his upper body became paralyzed. 
 
“The thing that my mom can remember [most] from the entire process was how much I complained about my legs aching, and eventually my ankles. When we arrived at the emergency room, I could not move my ankles at all and it hurt for anyone to touch them,” said Dalton. “It was definitely a scary moment for all of us.”
 
While Dalton is older and largely recovered now, the occasional symptoms of tremors and weakness remain alongside the daily reminder of being paralyzed from the waist down as a child. What began as pain in his shoulders and ankles quickly progressed to paralysis within 2 weeks, landing the 6-year-old in the University of Virginia hospital for test after test. A spinal tap ended up revealing Dalton’s diagnosis, but the road to recovery wasn’t be easy.
 
“I just wanted to walk again… that was my main goal before I got out of the hospital,” he recalls in a YouTube video retelling his hospital stay. “[I have] the faintest memory of me walking down the hallway, holding one of my parent’s hands and holding my IV, getting great encouragement from the nurses. It was really uplifting.”
 
Around 50% of people with GBS return to normal health within a year of diagnosis, but physical therapy is integral to this success. If you ask Dalton about it now, he reflects on loving to meet other patients, but dreading the extra attention he was given at school, throughout physical therapy and during the recovery process. 
 
“My recovery process was a struggle — not only physically, but also mentally for me. I became very stubborn when I had to use a walker for a few months because I absolutely hated the attention that came with it,” said Dalton. “Something as simple as someone holding the door open for me would mess with me, and I would lose it. So, that year of physical therapy that I went through definitely felt much longer at the time.”
 
But regardless, he was determined to be more than just a statistic; more than just another story about a sick kid. So, with his minimal social media experience, tenacious work ethic and a desire to meet other GBS survivors, the Guillain-Barré Syndrome Survivors page was created — and rapidly grew. 
 
“The page itself was actually 9 years old on June 22, [2020]...This is always such a great milestone to reach year after year,” said Dalton. “I have tried my best to build a community around answering each other’s concerns and assisting newer patients who have recently been diagnosed.”
 
Over the years as the likes and followers grew, the content has changed to adapt to a mission of spreading awareness, but the love for Dalton is clearly there. Comments wishing him well on his exams or thanking him for sharing his story flood the page’s wall — he sometimes even hops on live streams to video chat with his followers. 
 
“Although I have done [other] things that immensely improved my self-esteem such as making the basketball team or winning ‘Best Sports Broadcaster’ for the campus radio station,” said Dalton, “nothing in my life has compared to what I have been able to do with this page.” 
 
So, between his video production courses at Longwood University, job at the radio station and juggling being a typical 21-year-old, Dalton responds to as many messages and comments as he can to show some love back. GBS has not only given him a hobby and the opportunity to travel the country meeting those he connected with online, but a newfound purpose too. 
 
“I am very, very grateful for the life that I am living right now,” said Dalton. “At the worst of GBS, there is a massive support group waiting on Facebook and other social media platforms, and it is so rewarding to have people that can relate to what you are going through. We would have given so much to talk to other survivors during that time.”
 
Dalton may not know for certain what is waiting for him after he finishes his degree, but he isn’t planning to stop making videos and telling his story anytime soon. 
 
“The most significant advice that I could give anyone recently diagnosed with GBS is to create content — record, write journals, write blogs, do anything you can to document your experience,” said Dalton. “I ask that you please do not lose hope… You are not down for the count. Our life is all about this crazy journey.” 
 
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