One day at a time
Hot Springs man doesn’t let multiple sclerosis slow him down
It was a moderately warm July Fourth this summer, and Sean LaFollette was right where he belonged. He was on stage at the River Market Amphitheater in Little Rock playing baritone saxophone with his band The Big Dam Horns. While on the outside, everything about LaFollette seems normal, on the inside, a disease lies in wait to cause trouble.
LaFollette, of Hot Springs, has been living with multiple sclerosis since 2006. At least that’s when his symptoms began.
One day, LaFollette noticed there was something wrong with the vision in his right eye. Everything looked like it was smudged, and he had several blind spots. After visiting the doctor, he was told to wait and see if the symptoms went away. They did, and LaFollette continued his life as a music education major at Henderson State University in Arkadelphia.
Two years later, however, his vision problem came back, only much worse. He couldn’t see anything and had to wear an eye patch to try to make his other eye stronger. He also experienced different sensations on his skin. He said it was like the left side of his body was asleep.
According to the National Multiple Sclerosis Society, MS symptoms vary from person to person, and the disease is more common in women than in men. The cause of the disease, which disrupts the flow of information in the central nervous system, is unknown.
Looking at LaFollette, one would never know he was affected by MS. During the day, he teaches private music lessons, and on the weekends, he plays saxophone with one of several groups, such as the Little Rock Wind Symphony, The Stardust Big Band/Arkansas Jazz Orchestra and The Big Dam Horns.
LaFollette said fatigue is one of the issues that pops up the most with his MS, and with the fatigue comes cognitive issues such as memory, finding the right words to say and remembering what he’s doing. Heat is also a factor for those with MS, and being a redhead, he is extra sensitive to temperature changes.
Sometimes his musical commitments can put a strain on his health. Back in July, The Big Dam Horns played three shows in two days, one of which was at an outdoor amphitheater. Luckily, it wasn’t too hot those days, but the shows took their toll on LaFollette.
“I try to schedule myself where I have one big event at a time, to where I’m not stacking multiple things on top of each other,” he said.
When he does have a situation where he has to play several shows close together, LaFollette said, he tries to find ways to stay cool, either by drinking lots of water, getting in the air conditioning or finding some shade. Getting overheated can wipe him out for days, he said.
Even when he has cool conditions, LaFollette said he still has trouble with muscle tightness, especially in his hand. To deal with the symptoms, LaFollette takes a oncea-day injection that essentially gives his immune system something else to attack instead of his central nervous system. He also takes a few types of medication to combat muscle tightness, fatigue and mood swings.
Having MS also requires that LaFollette plan ahead. For example, if he’s playing a long piece with the wind symphony, he finds places to take mental breaks so he can make it through the performance.
LaFollette said that one of the most important aspects of his life that keeps him positive is his wife, Lia LaFollette. He said she’s always there for him anytime he needs assistance, like when he gets up in the morning. She also helps with driving when he isn’t feeling well. He said she makes independent living doable, and her help is essential to him.
“I would not be able to continue working in music without her help and support,” he said.
Recently, Sean and Lia — who sings and plays recorder solos in The Big Dam Horns — played an MS benefit show with the band. Jointstock, which takes place at The Joint Coffee House and Theater in North Little Rock, is an event that raises money for the Arkansas Chapter of the National MS Society. The event was an afternoon of comedy and music, which culminated in a performance by The Big Dam Horns. This year, the event raised more than $900 for the charity.
“It’s really, really nice to see so many people come out and — regardless of if they know what they are supporting — enjoy the music and learn a little bit about the MS community, the condition and the disease,” Sean LaFollette said.