At 62, David Barella was as active as he’d ever been all his life.
“Only a couple of years ago, I was just like you, as far as speaking correctly, walking correctly and driving correctly,” Barella said.
“I was a surfer, a skier, a tennis player, a golfer,” he said. “I played baseball, football. I loved playing softball. I could score from first base on a double, guaranteed.”
So when he was approached about joining a coed softball team, he said "yes." It was at one of the games, where he was playing right field, that he realized something was wrong.
“Someone hit one down the right field line, and I ran after it,” he recalled recently. “My legs just wouldn’t move. They felt like they were in quicksand. I knew something was not right.”
That opinion was reinforced when he went up to bat, got a hit and started for first base. Instead of running, he fell flat in the batter’s box.
“I couldn’t even run down the first base line,” he said. “I could hear some of the infielders snickering, ‘Go home, old man.’”
Fearing he had suffered a stroke, he went to see a succession of doctors, all of whom said he hadn’t had a stroke but none of whom could tell him what was wrong. That was until he went to the UCLA Medical Center, where Dr. Susan Pearlman diagnosed the problem within about 15 minutes.
Barella has spinocerebellar ataxia, a hereditary, progressive, degenerative disease that is often fatal. There is no known cure and no treatment other than medication to alleviate some of the symptoms.
“It’s a movement disorder,” Barella explained. “The cerebellum is here at the back of the brain, and it controls fine motor skills. My cerebellum is actually shrinking. It’s atrophying.”
Today, at 65, he must use a walker, he can no longer drive, and his speech is slightly slurred. One thing he hasn’t lost, though, is his sense of humor, which subtly creeps into his conversations.
“I fought the walker and the cane for the longest time,” he said. “Nobody wants to see somebody coming at them in a walker. But it’s kind of like the song, ‘I fought the law and the law won.’ I fought the concrete and the concrete won. I fell a lot of times.
“It doesn’t affect my thinking,” he added. “I just can’t speak. I can’t write. I can’t drive. I used to give PowerPoint presentations. I specialized in it. Now I’m just fumbling and bumbling around.”
Rare and unknown
Barella grew up in Florida and attended Florida State University, pursuing a high-tech medical profession. He was working in Pittsburgh, Pennsylvania, when he was told he would be transferred to Santa Barbara.
“I said, ‘Let me think about that a little bit,’” he joked.
He ended up the vice president of worldwide sales and marketing for a company that made breast implants.
“People snicker about that, but they’re not just for strippers,” he said. “The lion’s share of our customers were ordinary women — and men.”
Yet even with his background in high-tech medical devices, Barella said, he had never heard of SCA, and neither had most of the doctors in the area, probably because it’s so rare.
Although Barella said several other people in the Santa Barbara area have the disease, it only affects about 150,000 people in the United States at any given time.
“There’s no rhyme or reason to who gets it,” he said, noting it can come on late in life, like his did, or strike someone in high school.
Most people don’t even know they have the disease until they begin exhibiting symptoms.
Caused by either a recessive or dominant gene, SCA actually encompasses at least 29 types of disorders, and the severity and symptoms vary, ranging from involuntary oscillating eye movements, instability, vertigo and lack of coordination to head and hand tremors, sudden muscle twitches, loss of reflexes, macular degeneration, gastrointestinal pain, vomiting and seizures.
“As it turns out, I have one of the worst forms of SCA,” he said. “I have MSA — multiple systems atrophy. It means one day I’m going to be in a bed, I won’t be able to breathe, my heart won’t be able to beat.”
And while many who have the disease are dead within two or three years of diagnosis, Barella seems to have amazed his doctors by doing so well, especially because he’s still walking.
In fact, since moving to the Santa Ynez Valley about a year and a half ago, Barella said he seems to have slowed the progression of the disease to a near stop.
Active at the Y
“They told me, ‘Use it or lose it,’” Barella said, so that’s what he’s done.
He credits exercising regularly at the Stuart C. Gildred Family YMCA in Santa Ynez for keeping his disease at bay.
Barella said he used to exercise five days a week, but now he’s down to twice a week, starting out with a 45-minute spinning class and ending up with a 45-minute water aerobics class.
“It’s a beginner’s cycling class, so they don’t push me,” he said. “And they play oldies, so it’s great for old guys like me. I like to sing along with the words, which make sense and have meaning, not like the rap songs of today.”
In the pool, he lifts weights underwater, then walks the length of the pool.
“Everyone here is so helpful and friendly,” Barella said, noting that when they saw how heavy the pack he carried on his walker, they gave him a locker to leave his things in.
Because of his medical bills, the YMCA also provides him with a scholarship that covers part of his membership cost.
Barella is such a fan of the YMCA and the programs it offers, he was asked to speak at the recent kickoff event for the Y’s annual fundraising campaign by Greg Hughes, director of aquatics.
“He’s the nicest guy you’d ever want to meet,” Hughes said of Barella, noting his speech was “very inspiring, very motivating.”
Maybe that’s due to Barella’s attitude.
“To go from a life that was so active to a life that’s so inactive is amazing to me,” Barella said. “But I’m just thankful to be alive. I try to keep a sense of humor. You have to have a sense of humor with something like this. And I keep living every day the best I can.”