Inside the frequent flier club

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Mary Gustafson, McKnight's Staff Writer
Mary Gustafson, McKnight's Staff Writer
If you've ever caught yourself swimming in a pool of self-pity but you're not sure how to climb out, I've got one suggestion for you: Try sitting in the waiting room of a jam-packed pain clinic some time. I promise, your problems will pale in comparison.

Having been a participant in a six-year clinical trial for an experimental device for chronic pain, I've found myself in just such a waiting room more than I care to remember. Fortunately, since I'm a trial participant, my waiting room wait times are brief. Trial participants are put in the express lane to see the doctor and even get paid (a very, very small sum) for our trouble. If I'm really lucky, they'll sometimes pay for my parking.

Still, the pain-stricken faces of these patients haunt me long after I've left my appointment. They haunt me because I wish I knew how to help them, and because I worry that my own health could backslide, causing me to become a waiting room frequent flier.

Since my trial site is a major teaching hospital that does a lot of research, the patients who end up there have, like me, often previously heard, “Your case is too complicated. I don't know how to help you.” As a result, I've seen this waiting room turn into a chronic pain support group of sorts, as patients trade war stories after signing an impossibly long sign-in sheet. Healing begins before the patient ever sees a doctor.

I've heard their stories of horrific car accidents, seen their intrathecal morphine pumps, heard about nerve stimulators used for intractable incontinence. When I was there last week, I saw a man about my age. He was very pale and thin and walked very slowly. The trial coordinator, who was sitting next to me, was watching him too. “He must be here for cancer pain,” she noted.

So when I read and write stories about major prescription drug shortages, I think about the people I've met in this waiting room and what shortages mean for them. Sure, there are pharmacologic alternatives to the drugs in short supply, but I know all too well that finding a medication that helps can be something of a crap shoot — especially for those who fear the dreaded “drug seeker” label.

It's heartening to see that some politicians are concerned enough to make some hay over it. And I hope they continue to give the issue some much-needed attention.

Amid visits to the pain clinic and reading about medication shortages this last week, a study about Alzheimer's caught my eye. Researchers determined that “people who reported greater purpose in life exhibited better cognition than those with less purpose in life, even as plaques and tangles accumulated in their brains."

Researchers contend, their finding “is encouraging and suggests that engaging in meaningful and purposeful activities promotes cognitive health in old age."

While this study wasn't investigating chronic pain, the researchers' conclusion has proven true in my own — and I suspect others' — experience with pain.

Attempting to figure out your purpose in life is easier said than done. For me, simply having a job allows me some semblance of normalcy and structure. It's not always easy, but there's something to be said for distraction therapy.

For other people, being a parent or grandparent can fulfill a sense of purpose. Many office drones who find no satisfaction with their day jobs derive purpose from after-hours volunteering (and nursing homes always welcome volunteers!).

It's trickier to root out a purpose in life for nursing home residents, but simply broaching the topic could lead to meaningful and productive conversations. Everyone has a purpose in life, but sometimes identifying it is half the battle.

Daily Editors' Notes

McKnight's Daily Editors' Notes features commentary on the latest in long-term care news and issues. Entries are written by Editorial Director John O'Connor, Editor James M. Berklan, Senior Editor Elizabeth Newman and Staff Writer Marty Stempniak.