Runner stays ahead of disease
Sunday run raises funds for Huntington’s research
Jim Christus knows he sometimes looks strange when he runs, veering right and left a bit but always making it to the finish line.
“We tease him,” his wife and biggest fan, Barb, says, “that he’s running more than a 5K because he’s not running in a straight line.”
Jim has Huntington’s disease, a neurological disorder that runs in families, but wasn’t discovered until he and his sister were diagnosed eight years ago. Their father was the carrier, they learned, though never showed signs that he was affected.
This is a genetic illness that’s not messing around. It’s sometimes described as combining the symptoms of three heavy hitters: Parkinson’s, ALS and Alzheimer’s.
A progressive breakdown of nerve cells in the brain deteriorates a person’s physical and mental abilities. About 30,000 Americans are symptomatic. Folk legend Woody Guthrie died of Huntington’s.
Jim’s sister, Mary, has it worse and needs a wheelchair to get around. Jim is more fortunate and he plans to keep racing the wind and the disease as long as he can. He logs a few training miles at least twice a week in the couple’s Pewaukee subdivision.
“When you start running, it’s like everything is off your mind,” Jim told me. “I’m so lucky with what I’ve got here. I’m not supposed to be even walking.”
Now 70 and retired from selling concrete, Jim began running about age 40, inspired by watching his three sons competing in track and soccer. He started by trotting just a block, then two blocks and so forth until he reached three miles.
Then he began signing up for races, one or two a month, summer and winter. He doesn’t see them as fun runs. “When I take off, I’m looking for someone who I think I can beat,” he said.
On Sunday, Jim once again will don his Team Hope T-shirt and compete in the 5K run to benefit the Huntington’s Disease Society of America. It starts at 10 a.m. at Fox Brook Park in Brookfield.
The goal is $30,000, and Jim’s team, the Christus Clan, hopes to raise a sizable chunk of that. Just for fun, he took a pie to the face for every $500 raised last year, and this year it will be water balloons flying in his direction.
Slender and built like a runner, he sometimes finishes first in his age category in the races he enters. His time for 5 kilometers, or 3.1 miles, has crept upward with his age and now stands at about 32 minutes.
Jim has involuntary muscle movement that makes it hard to sit still and to coordinate his actions. His speech can falter and is likely to get worse over time. He sometimes struggles to find the next word, which is part of the cognitive disruption caused by Huntington’s.
You can better understand how important running is to him when you realize what he has been forced to give up. With his reflexes slowed, he stopped driving last year. His lack of coordination took away bowling, golf and pool, though he still plays bocce ball. He also enjoys water aerobics and poker, and he and Barb travel while they still can.
People sometimes mistake his symptoms for drunkenness, so that’s irritating. Jim and Barb do what they can to raise awareness of the disease, including speaking at schools and to other groups.
Jim’s sons have a 50-50 chance of carrying the faulty gene. They have chosen so far not to be tested, a difficult but personal choice every child of someone with Huntington’s must make.
Sunday’s run is raising money for research. Barb said an effective drug is on the horizon. “They call Huntington’s the more curable incurable disease because they know where it’s from. They have the gene pinpointed,” she said.
Until that day, Jim just keeps on running.