The epidemic of grief-stricken parents

http://www.startribune.com/rosenblum-parents-pain-helps-shift-prescription-drug-awareness/189749261/

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 [Steve’s mother] 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 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.” …

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…

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)…

Click to access Spoke2015_05_13Int.pdf

Bill and Judy Rummler spoke to us about this growing problem…. Their son Steve died in 2011 from an overdose. Steve had become addicted to opioid painkillers as the result of a chronic back pain problem that could not be solved by doctors. The Rummlers were determined that Steve’s death would not be in vain. They formed a foundation with the mission “to heighten awareness of the dilemma of chronic pain and the disease of addiction and to improve the associated care process”. The motto is, “Providing HOPE for those with Chronic Pain and Addiction.” 

Rotary clubs in Minnesota have provided support for the organization…

http://creatingnewnormal.com/2011/12/01/the-myth-of-the-five-stages-of-grief/

Judy Rummler
December 4, 2011 at 5:48 pm
Hi Emily,
I sponke with your Dad again today at church… We lost our 43-year old son Steve in July to a drug overdose. He had suffered with chronic pain for 15 years and had been prescribed narcotic pain killers to which he became addicted. Our ministry is to make a difference for others with these same struggles…

http://blog.illumen.org/healthways/?p=77038

The FDA’s decision to more tightly control prescription pain medications surely will save lives… “Wow!” said Judy Rummler who, with husband, Bill, was back east visiting family when she learned of the FDA’s long-awaited decision. “This is the most exciting news we’ve had since we started this effort.”

The Rummlers, of Edina, can be credited with influencing the dramatic policy shift. Judy and Bill are founders of the Steve Rummler Hope Foundation, named for their son, a gifted musician and financial adviser…

She also had no idea how reluctant the FDA would be to recommend stricter controls on popular pain medicines, despite support for tighter oversight from the Drug Enforcement Administration and Centers for Disease Control and Prevention…

So Rummler, joining leaders of other similarly focused organizations, has been pushing back, testifying before congressional committees, speaking to Rotary clubs and attending drug summits. Earlier this year, she met with FDA Commissioner Margaret Hamburg…

The turning point, Rummler believes, occurred on Oct. 1, when 600 people from several states protested on Capitol Hill during their “Fed-Up Rally.” The rally, chaired by Rummler, demanded a federal response to the opioid epidemic…

Steve’s parents are very selective in how they choose to remember their son and what details about his story they choose to tell. But even with the small amount of information available on this 43-year old pain patient — who had been suffering from chronic pain for 15 years — it doesn’t sound like he died from an “unintentional” overdose. Was it suicide?

I’d say the first thing that led to his death was unmanageable and under-treated chronic pain. It was the unrelenting pain that killed him, not the drugs. Unfortunately, even though the antidepressants appeared to help him initially, they didn’t work for long. And in the end, he was only being treated for addiction, not depression or chronic pain.

The other thing that contributed to Steve’s death were his efforts at abstinence. These kinds of abstinence-related deaths — closely following a stint in rehab (or a visit to the doctor) — are seen in both chronic pain patients and those suffering from drug addiction. You can’t stop treating either pain or addiction with drugs and replace that treatment with essentially nothing, which is how I describe all these “alternative” treatments that everyone is forcing on pain patients (especially veterans). As we have seen with injections, the available non-opioid treatments are doing more harm than good, creating even more pain. And all the other alternative treatments only help a small percentage of patients.

As a chronic pain patient, I can understand Steve’s feeling of the drugs being a noose around his neck, especially considering all the expense, regulation, and shame involved in being treated with opioids. But he was wrong — the drugs are not the noose. It’s the unmanageable pain that strangles the life out of you. I’d say it’s possible that the drugs kept him alive longer than if he didn’t have access to them, which is what his parents now want for all pain patients.

I don’t know how Steve’s parents expected him to treat his chronic pain — with religion? His parents have no comprehension of what their son’s life in pain was like, so their advocacy efforts in his name are very misguided (a familiar story). They have based their opinions on feelings of grief, not facts or science. And these grieving parents have a lot of money to support themselves while they travel and talk to universities, rotary clubs, and agencies like PFROP and the FDA.

As every American knows, money equals speech in this country. The voices of pain patients are not being heard, but the voices of well-to-do and middle-class grieving parents have been heard loud and clear. The voices of the drug war have always been those of the privileged and powerful, and I don’t know any pain patients who are a part of that exclusive group.

Steve didn’t start taking painkillers until 9 years after his pain started, so it’s not like he didn’t try to do it mostly on his own. Unable to manage the pain, he slid into a depression, although I can’t say he was adequately treated for either. Seems like he tried to get help, but eventually the only advice he got was to stop the treatment for pain, only focusing on treating his addiction with abstinence.

I think Steve gave up on the hope of achieving any real pain relief. He knew his pain would just continue to get worse, but with abstinence, he had no way to manage it. I know exactly how he felt. After my last pain doctor abandoned me, I couldn’t come up with any way to manage my pain except suicide. Steve had the courage to do it, but I didn’t. Now he’s at peace — and I’m envious of a dead man.

The foundation’s motto is:  “Providing HOPE for those with Chronic Pain and Addiction.”

Hey Judy, you and your anti-drug advocacy groups are actually doing the very opposite of what your motto claims to be. You and yours are causing pain patients to lose hope that their voices will ever be heard. In fact, I hold you and your groups partially responsible for the death of every pain patient who overdoses — including your adult son.