In about 1998, my eight-year-old granddaughter and I were camping in New Hampshire. It was cold and rainy, so we spent quite a bit of the time huddled in our pop-up camper. I just wanted to bundle up in my sleeping bag and take a nap. But there was no rest for me! My granddaughter said, “I’m sorry, Mimmi,” as she witnessed my struggle for rest. I knew then that I needed to visit my doctor.

Thank goodness my doctor told me I had restless legs syndrome (now called Willis-Ekbom disease, or WED/RLS) and not some psychiatric problem. However, he prescribed Sinemet. Oh, that first night’s sleep was “delicious!” But before long, I found that I could not sit through a meeting at work without swinging my legs under the table. My daughter began searching the Internet, and found that Sinemet, as we all now know, has the serious side effect of augmentation. I educated my doctor about this and he prescribed Requip, which worked well for several years. When Requip no longer controlled my symptoms, my doctor changed my prescription to Mirapex.

Meanwhile, both my daughters began to experience the symptoms of restless legs syndrome. My son is still fighting for sleep without benefit of medications. They all say, “Thanks, Ma,” for my role in their inheriting this life-changing problem.

In 2003, I became a support group leader for the RLS Foundation (now the WED Foundation) and have been active with creating awareness, offering support and educating others in my area ever since. Understanding and coping with WED/RLS has been a journey of a lifetime for me, for my communities of friends and church, and for my family.

The hospital experience
In the fall of 2011, my doctor diagnosed me with rectal carcinoma with neuroendocrine features, an extremely rare form of cancer. Even at the University of Texas MD Anderson Cancer Center, a
premier cancer institute, they had a difficult time with the specific diagnosis. When the doctor talked to us about it, he said there is so little known about it that the treatment would be for ordinary rectal cancer. Isn’t that a scary thought?

The story about my initial hospitalization on February 15, 2011, at MD Anderson is still fresh in my mind. Before the surgery, I had a detailed discussion with my anesthesiologist and provided him with the Foundation’s Surgery and RLS brochure. After the surgery, I was on pain meds, so my WED/RLS seemed to be under control. However, when the pain meds were reduced, suddenly there were those creepy-crawly feelings in my legs. The hospital stocked Mirapex, but they refused to give me any extra to “get ahead” of those familiar feelings. I asked to walk so many times that the nurses began to tell me, “No more walking. You’ve got to stay in bed and stay still.” If they’d only known the extent of my anguish! Finally, I asked to be given Sinemet (carbidopa/levodopa) at about 2:00 p.m. along with my Mirapex at night. Only then did I get some rest.

Unfortunately, that’s not the end of the story. When I returned to our little “cottage in the woods” in Maine, I soon developed a blocked bowel, which called for another big surgery. Again, I had a long discussion with this anesthesiologist and provided him the Surgery and RLS brochure. This surgery resulted in a near shutdown of my kidneys – a real nightmare. This time, the hospital stocked Mirapex in the pharmacy, but not Sinemet. My husband brought my Sinemet and gave it to the nursing staff, and they freely gave me a dose every day at 2:00 p.m.

The lessons learned are: 1) Take your WED/RLS prescriptions from your doctor to the hospital before the date for your surgery. 2) To help educate hospital staff, bring related WED/RLS brochures with you on the date you are admitted.

Recording your stories
One of my passions is writing stories that record memories of my family. This began many years ago when my most beloved father-inlaw began to tell me wonderful stories of his childhood growing up in a small farming community in central Texas. I wrote them down on scraps of paper, backs of envelopes, etc. When I was requested to submit my stories to a new history book for the county that included his community, I gathered all my notes and pictures for the submission, carefully noting that the stories were told to me by my
father-in-law. Now those stories and pictures are included in the big red history book for Grimes County, Texas. I read them to my grandchildren so they will know a little about their heritage.

With cancer threatening to shorten my life, I feel a real urge to complete all my stories. An important part of telling my stories is to write about living with restless legs syndrome so future generations can read about my journey of coping with a disease that is still underdiagnosed and misunderstood. I have given my stories as gifts to my children, my grandchildren and my sisters. These stories are my legacy.

Sally Breen was born in Brownsville, Texas, spent time in Colorado Springs, Colorado, returned to Texas in 1979, and now lives in Windham, Maine. She has happy memories of raising her three children, of her work towards a nuclear-weapons-free-world, and a life full of adventure traveling in Central America.