Ex-IndyCar driver battling Huntington’s
The 54-year-old Muncie, Ind., native with seven Indianapolis 500 starts is battling Huntington's disease, a cruel, inherited genetic disorder similar to Parkinson's in that it decimates muscle coordination. Today, Paul struggles to walk and talk, but three hours spent with him recently showed his mind to be sharp, his fight true.
Paul exercises three days a week with an at-home trainer and regularly folds his 6-3 frame into what he jokingly calls a mini-van — a BMW X6 — for the short ride to UCLA for testing and therapy.
Paul's every movement is a challenge, and like an IndyCar engine he needs time to warm up; his best hours are in the afternoon. Three cats and a cane are his constant companions.
For now, the goal is to develop medication to block the negative effects of the mutated gene and raise awareness for the research being done by Dr. Susan Perlman at UCLA's Department of Neurology.
Members of Perlman's group said Paul's efforts, including donations in his honor, have tripled the number of clinical trials. Donations can be made online atgiving.ucla.edu/JohnPaulJrHD or JohnPaulJrHD.com.
"He's doing it for his (adult) kids, who might carry the gene," caregiver Darlene Gray said. "He thinks they'll find a cure for this in his lifetime, and he wants to be the face of this."
Paul's mother and grandmother died of the disease that mostly attacks men and women mid-life. He began noticing symptoms after turning 40 and retired from racing soon after.
"It was starting to invade my racing," he said in a UCLA video produced in 2010, before his symptoms increased. "I was having to actually talk my way around the track in segments, basically. I was having to tell myself to turn, accelerate (and) brake instead of it just flowing." More a USA Today