Being diagnosed with LBD “hit him like a ton of bricks,” said Bob Rodgers, 71 of New Jersey. He’d already learned a little bit about LBD after a neurologist said he had some parkinsonism, so he understood the implications of his new diagnosis. But it wasn’t long before he was back on his feet and taking the disease head-on. He started reading about LBD and the progress being made in research. And that drove him to join a study at Thomas Jefferson University, one of 9 sites in the US-based DLB Consortium’s LBD Biomarker Study.
Bob recently told LBDA what it was like having a lumbar puncture (LP), one of the required procedures in this study. “I remembered a few old stories from years ago about spinal taps, so I was a little nervous to have one,” Bob recalled. “But I was committed to doing the study, no matter what. I went home and looked up LP’s on the Internet and watched videos of the actual procedure. And then I knew there was nothing to be concerned about.”
The day of the procedure, Bob was met by the study coordinator who personally escorted him to the room where the LP would be done. “The whole team was absolutely great. They walk you through everything,” Bob explained. “It was very straight forward; the doctor told me what he was doing in advance, every step of the way.”
When asked about what pain he experienced, verbally Bob brushed it off. “It was just a little pinch from the shot of lidocaine, not even as painful as a flu shot. As soon as the lidocaine was in, there was no pain at all. It numbed me for the whole procedure. I didn’t feel anything.”
Having sailed through the procedure, Bob went home and continued to feel good after the LP. “Not even a headache, which was the only thing I was concerned about,” reflected Bob. And when asked if he or his wife noticed any extra confusion after the test, he laughed, “No, and she WOULD have noticed. I’m having a bad week this week and she can really tell.”
Being part of the study has been an empowering and positive experience, according to Bob. He’s become more informed about LBD and knows his participation makes a difference. “The more people who enroll, the better the chance we have at finding a biomarker,” Bob emphasized. “And more research means more doctors will learn about LBD. That’s urgently needed.”
Do you want to help advance knowledge about LBD? Click here to find out what’s involved in being part of a clinical study. And then browse through LBD studies that are current enrolling to find one near you.