Judy Rummler rarely takes even a Tylenol, so it was hard for her at first to understand the "electric-shock-like" pain her son, Steve, endured for most of his adult life.
Now Judy understands all too well. And she's working overtime to ensure that we understand, too.
Steve Rummler died in 2011 of an accidental drug overdose, after a long, frantic battle to manage chronic pain from a back injury. His death at age 43 ended the life of a popular Edina athlete and musician who was planning to marry his high school sweetheart.
Life is a whirlwind for Judy, with luncheon speaking engagements at Rotary clubs, visits to local churches and colleges and, on Thursday and Friday, a presentation at a Food and Drug Administration public hearing in Bethesda, Md., regarding drug labeling.
Judy and her husband, Bill, have formed the Steve Rummler Hope Foundation (www.steverummlerhopefoundation.org) to raise awareness about chronic pain and addiction, advocate for labeling changes and educate doctors about the dangers of liberal dispensing of prescription opioids.
"This can happen to anyone," said Judy, 71. "It happens to educated, successful people -- people of all walks of life."
Judy is not opposed to opioids used appropriately and responsibly. For end-of-life issues, palliative care and, even in some acute situations, they can be a godsend. But she refers to a note Steve left, which has become the tragic sound-bite for their foundation: A lifeline, he wrote, became "a noose around my neck."
The Rummlers moved to the Twin Cities with their two little boys in 1974, when Steve was 6. His brother, Jeff, an attorney, lives with his family near Boston.
Steve was an all-conference soccer player at Edina High School and a gifted musician. In the 1980s and 1990s, he was part of a popular Minneapolis band, the GooneyBirds. He was on the dean's list at the University of Minnesota, where he earned an economics degree before becoming a financial adviser.
In 1996, Steve suffered a severe back injury, "and life was never the same again for him," Bill, 72, said. "I don't know if he ever had a good night's sleep after that."
Steve sought help immediately but never got a treatable diagnosis. Depressed, he started taking antidepressants. "He reached the critical fork in the road," Bill said. "The antidepressants gave him a little relief, so, gee, let's keep going down this road."
In 2005, Steve was prescribed narcotic painkillers and the anti-anxiety drug clonazepam. His family watched their gregarious son and brother start slipping away. In 2010, he checked into the Pain Rehabilitation Center at the Mayo Clinic in Rochester for three weeks, where he was weaned off his medications.
He reconnected with Lexi Reed Holtum, whom he had dated in high school and college. He and Holtum, who has a 10-year-old daughter, were engaged in August of 2010.
He began having fun again, Holtum said, but soon he was slipping. "I felt that I could somehow save him, give him the strength to overcome the struggles," said Holtum, a massage therapist who still wears her engagement ring. "He was full of incredible potential for joy."
Knowing that he might lose Holtum, Steve completed 28 days of treatment at Hazelden in May of 2011. He relapsed shortly afterward. In unbearable pain one desperate night, he sought out illegal drugs. He died on July 1, 2011.
The Rummlers, who split their time between Edina and Bonita Springs, Fla., began sharing their story soon after, winning respect from many physicians. "They're really helping with awareness," said New York-based psychiatrist Andrew Kolodny, president of Physicians for Responsible Opioid Prescribing (PROP).
"Just a few years ago, colleagues would say that it was cruel or extreme" to suggest limiting pain medications, Kolodny said. "Almost overnight, the medical community is waking up."
Charles Reznikoff, an addiction medicine specialist at Hennepin County Medical Center, praised the Rummlers as "warm, thoughtful, amazing people who have turned a tragedy into something that can be good for the community. You can be a compassionate doctor," he said, "and say 'No' sometimes."
Judy is heartened by changes already afoot. Holtum testified Jan. 25 in front of an FDA Drug Safety Advisory Committee in Silver Spring, Md. The committee is considering shifting Vicodin (the most prescribed drug in America) and other hydrocodone-combination products from Class III to Class II status. That change would mean tighter regulation of prescription opioids.
The committee voted 19 to 10 in support of the recommendation, which now moves to the FDA.
"They're really going to be pressured this time to change it," Judy said, noting that 15,000 people die annually from prescription drug overdoses.
"We know so much more now," Bill said. "This is the hope we offer. It makes us feel really good, and really helps with our grief."
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