Restless Patient Discovers RLS
Restless Patient Discovers RLS
From Nightwalkers Winter 2008 Issue
Robert Yoakum has been a journalist for most of his life so it was natural for him, when diagnosed with restless legs syndrome, to write about the puzzling disease. His first magazine article on RLS, which carried the subtitle “The most common disease you’ve never heard of,” ran in Modern Maturity and generated more than 40,000 letters from readers which flooded the offices at the RLS Foundation. This was, by all accounts, the moment that the RLS Foundation officially entered the national scene. In the piece to follow, Mr. Yoakum reflects back on his early years with RLS and why awareness was such a huge part of what he felt called to do – so that no one else had to live with a disease, and live without help for that disease, again.
The first objective of the Restless Legs Syndrome Foundation is awareness. It was essential to acquaint the public with knowledge of this little known and often misdiagnosed disease.
It won’t go down as a major event in the annals of American medicine, but my encounter with Nurse Blanchard belongs at least as a footnote in any account of attempts to further awareness among doctors, researchers, patients, caretakers, and the public at large.
With one exception, my relations with nurses have been amicable. That exception was with Nurse Blanchard (or at least that’s what we’ll call her) who played a brief but important role in the awareness campaign for RLS. My operation at Johns Hopkins that led to my troubled encounter with Nurse Blanchard involved loss of sleep, that I was to learn later on, was caused by restless legs syndrome. I learned that one of the pills dispensed by Nurse Blanchard permitted sleep – in part because it stopped the creepy-crawly sensations brought on by RLS, but it was certainly a mistake to congratulate Nurse Blanchard for what seemed to me like a medical miracle. She promptly eliminated that magical pill from my nightly medications. She feared that I would become addicted. I took the loss of the helpful pill to the residents who visited my post-op bed, morning and night. Neither the night nurse (Blanchard) nor the residents knew that RLS existed. What Nurse Blanchard was sure of, however, was that I shouldn’t continue to get a pill that actually subdued the sensations in my legs that prevented sleep.
My repeated protests merely irritated Nurse Blanchard, but they intrigued the residents in the spirit of scientific research. The young doctors were trying to identify the source of my torture. One of them said that he had heard about a syndrome that resembled my symptoms. But his curiosity and sense of scientific inquiry did not soften the stance of Nurse Blanchard. Her nighttime embargo of my helpful pill remained in place. However, it wasn’t the interest of the residents or the obstinacy of the nurse that opened the door of knowledge. It was, rather, that the door was opened for me by a startling coincidence.
To quote from my book on the subject:
While still in the hospital I was plagued as never before by both restless legs and another condition known as PLM. Unknown to me, progress on both disorders was being made by neurologists in that very same hospital. Not long after the operation, I received a copy of the Hopkins Medical News and was riveted by an excellent description of my nightly anguish in an article entitled “Rest for the Weary.” I recognized my enemies immediately. They were called RLS and PLM. The article cited Dr. David Buchholz, associate professor of neurology at Johns Hopkins: “People with restless legs syndrome get what Buchholz calls ‘creepy-crawly’ sensations in their legs when they lie in bed and try to fall asleep. The feeling, centered mostly in the calf muscles, is ‘very distressing, and it drives people crazy to try to lie still.’ Moving – pacing, massaging or stretching the muscles, or bicycling the legs in bed – provides temporary relief. But then it comes right back as they try to lie still again. It’s a plague for the people who have it.”
I decided not to share my discovery with the disagreeable Nurse Blanchard, feeling certain that my revelation would be taken as another salvo in our pill dispute. I did, however, share my discovery with the agreeable residents. Years later, I was to learn that traumas, and especially operations, could trigger restless legs syndrome. Even so, I didn’t regret my failure to share this medical finding with Nurse Blanchard. Some readers will think of me as being churlish and, worse, violating scientific protocol that calls on all of us to share new knowledge. It was foolish of me, or course, to leave the nurse in an ignorant state. After all, it would be the other patients of Nurse Blanchard who would suffer. In a sense, I was punishing myself in the unlikely event that Nurse Blanchard is reading this article. I want her to accept my apology.
Her campaign played an unwitting role in my discovery of RLS. A discovery that doesn’t belong in the annals of medicine but did serve as a first step in my own awareness of this now widely recognized disorder.