January 29, 2019

More on my "Popcorn Proposition"

By Bob Waterman
RLS Foundation Board Chair Emeritus

One of the big dreams of the Foundation is to act as a catalyst in finding better treatments for the disease. Most of us hope for the magic pill, potion, or even surgery that will stop this horrible feeling that occurs daily for me, and I suspect almost daily for many of you.

Way back in the early 90s, when I started talking with doctors about RLS, the sleep docs I was talking to put me on Sinemet. It did stop my restless legs but changed my personality so much, and in such negative ways, that I was terrified. And I didn’t know how to get off of it. Finally, and with the help of a brilliant psychiatrist and some people at Johns Hopkins, I was able to put Sinemet in my past.

There followed a parade of other pills: Permax, Mirapex, Requip ... all were helpful – at first.

All eventually generated the phenomenon known as augmentation: The drug worked beautifully for a while; then, after a period that might be as long as a couple of years, I started needing a higher and higher dose. The drug itself had started making my RLS worse instead of better. The silver bullet had turned to lead.

So I’ve hoped, as have many of you, that we could find great nondrug therapies for RLS. I’ve dreamed that all of us in the RLS community could somehow collect, and even rank, our nondrug therapies for RLS: What practices make life manageable when drugs aren’t working that well? What can we do when we want to both treat RLS symptoms and limit our drug intake?

Just because it’s fun, I’ll start my own list by revisiting the “popcorn proposition.” (Those of you who have been around a while may remember when I first wrote about this in NightWalkers in 2001.)

I love going to the movies. Trouble is that even if it’s Mission Impossible, I get jumpy and have to stand in the back of the theater, or in the aisle, to get through the movie.

However, if I go to my seat (an aisle seat helps) armed with a bag of popcorn, I can make it through the show. The secret is eating the popcorn s-l-o-w-l-y, one ... kernel ... at ... a ... time. Eating that way, I can get through a whole movie on one small bag of popcorn. Sometimes I go wild and get a medium bag.

What characteristics does my popcorn proposition have in common with other nondrug treatments for RLS? In my mind there are two. First is that I’m doing something physical and mind engaging – in this case, constantly moving my hands. Second, is the knowledge that I can escape my seat if I want to, since I’m sitting in an aisle seat. Knowing that I can easily stand seems to reduce my need to stand.

Another nondrug approach: My wife and I love the symphony, musical comedies, ballet, and – gulp – even the opera. Popcorn isn’t going to work for these occasions. But part of my popcorn approach will.

For example, on our 50th anniversary we watched Don Giovanni in the theater in Prague where this opera was first performed. Several scenes into it I was as jumpy as a kangaroo. My handful of M&M’s wasn’t helping. But I noticed that many of the side boxes were empty, and during a scene change, I commandeered an almost empty box. (A few ushers had noticed the same empty boxes and were sitting in them too.) Relief. I could stand if I needed. Pace if I needed. And because I could, lost the imperative to stand or pace. (Well, I paced a little bit.)

These days we go to the symphony about once every other month. I seldom get jumpy there, and I am convinced that it’s because we are lucky enough to be in a box where I can escape I need to.

All of this makes it sound like RLS is purely mental – not real. Something the brain cooks up. That’s nonsense, as any of us with RLS knows. However, psychological factors can alleviate the symptoms or make them worse.

Take another example: I love to draw and paint. I can sit still for hours if I’m painting, though I cannot start a drawing or painting if I’m in the middle of an RLS attack. To me, the popcorn parallel is obvious. When I’m painting or drawing or eating popcorn, my hands are occupied, and so is the movement part of my brain. Whether I’m painting, or watching a thriller, my mind is occupied.

I’m good at knitting and tying fishing flies. My grandparents taught me. And again, the same themes: Hands occupied. Brain engaged. RLS in check.

One summer I tied 1,000 dry flies for sale at a Colorado dude ranch. You can question my brain on accepting that job, but all I could see was 1,000 times 25 cents. My dad, an ardent fisherman, loved that I could tie salable dry flies. He hated that I could knit.

Other nondrug palliatives for RLS for me involve simply wearing myself out. One of my favorites is hopping on an exercise bike in front of a TV. I use this with great positive effect when I’m jumpy before bedtime and need to settle to get to sleep. I ride for about half an hour, watching both the TV and a small screen on the bike that shows me riding through hill and glen, and even a ski area in the Alps. When the road gets steep, the peddling gets tough. When the road dips, my gadget lets me coast.

I know, I know. You’re not supposed to be looking at screens before bedtime. But the leg relief from my bike is so great compared to the restless legs symptoms in the evening, that sleep seems to come easily.

Hot baths – the hotter the better – are a standby treatment that many of us have used for years. For some reason hot baths are helping me less now, at 81, than when I was younger. The bike is better for me, but a hot bath is still welcome therapy.

A cold bath works also, though you have to be a little nuts to try it if a hot bath is available. I would not have believed this one until my family and I were rafting through the Grand Canyon. I was having great trouble getting to sleep; I was constrained in a tent and tight sleeping bag and feeling jumpy.

So I took a plunge in a quiet, 55-degree pool near our camp site. Darned if I didn’t feel much better. Hot, cold ... it must have something to do with shocking one’s nervous system.

Massage works well for me. The issue is that I can seldom schedule a massage when I need it most. Early afternoon? No problem scheduling. But 9 at night, when I really need a massage, I can seldom find a skilled masseuse available.

Popcorn, painting, knitting, hot baths, cold baths, exercise bike, tying flies – it’s quite a long list of things one can do to mitigate the symptoms of RLS. But I do want to emphasize one crucial point: These activities only help mitigate; they are not the cure. They help, but I would be terrified to face the rest of my restless life without drugs like gabapentin, Horizant and methadone, or a patch that delivers tiny amounts of rotigotine.

My strong belief is that each of us needs a catalog of drug and nondrug approaches for less night walking and better sleeping. Much as I like popcorn, no one bag is going to get me through that movie if I’ve forgotten to take the kind of opioid that works well for me. And no single approach is going to help me much if I don’t have access to my paints and, well ... yes, my bag of popcorn.

_________________________________________________

Bob Waterman has dedicated many years of service to the RLS Foundation. He led the establishment of the RLS Foundation's Research Grant Program in 1997 and currently serves as chair emeritus on the Board of Directors. Waterman is a non-fiction author and expert on business management practices who worked professionally as a physics researcher and economics professor before a 21-year career at the management consulting firm McKinsey and Company. He has authored several books, including the best-seller In Search of Excellence, which he co-authored with Tom Peters. Waterman has served on the board of directors of organizations such as the U.S. Ski Team, the San Francisco Symphony, the National Institute of Neurologic Disorders & Stroke, the Scleroderma Research Foundation, Mindsteps, ASK Computer, McKesson, Boise Cascade, and Armor All. He helped found and direct AES Corporation, a major international power producer. Waterman is also a watercolor artist and teaches painting.