Meet People with RLS: Helen, Kristin and Katy
Helen
Hello. I’m Helen, and I just turned 89 in May. I live in Bellevue, Washington where I settled after my husband, Duane, and I raised our five daughters. Restless legs syndrome – or RLS – runs in my family. Now that I have knowledge and words to put to it, I know that my mother had RLS. She would walk the floor every night because she had what she called “the jitters.”
I can actually remember my own experiences with “the jitters” when I was a young adult, but it wasn’t until I was 41 and pregnant with my youngest daughter that my symptoms became unbearable. My doctor had no idea what I was talking about and offered little help. For the next 20 years, I visited many doctors who were baffled by my complaints. I spent most nights hopping in and out of bed. About 15 years ago I found an article in the paper on RLS. Finally, I had a name for my “jitters.”
After many years and various remedies, my RLS is now well-managed. I no longer have to play bridge standing up, and I can stay in bed at night.
Unfortunately, I passed RLS on to my daughters, and many of them passed it along to their children. My one granddaughter, Katy, had RLS quite severely during her recent pregnancy. I feel so badly that I passed the RLS gene on to her and my other family members.
Even though my RLS is managed, I am very interested in RLS. With all of my daughters struggling with RLS to various degrees and some of my grandchildren showing symptoms, I want to do all I can to bring awareness to this condition. My family and I are doing everything we can to help researchers better understand RLS. We participated in a genetics study, and are also all planning to donate our brains to Harvard University for research after death. As I tell my daughters, “I’m dying to get into Harvard.”
Kristin
Hi. I’m Helen’s fourth daughter, Kristin. My husband Chuck and I live in Grove City, Minnesota. I am 55 and, like my mother said, my sisters and I suffer from RLS. RLS has always been a part of my life. I can remember my mom and my grandmother “walking the floors” at night when I was growing up. As I became an adult, I began to experience the same symptoms periodically and then more significantly when I was pregnant with my children.
Since then, my symptoms are at times mild and at other times extreme. Sometimes, when I go to the movies I have to sit in the back so I can get up and walk around when the ”jitters” come on. I hardly sit on airplane flights; instead I walk up and down the aisles to calm the creepy crawly sensations in my legs. I often joke that I walk all the way to Seattle each time I visit my mom.
As I get older, my symptoms get worse and worse. For me, the most troubling part is knowing that I’ve passed RLS onto my daughter, Katy. I hate to see her suffering, and along with the rest of my family, will do all I can to bring awareness to this frustrating and often misunderstood condition.
Katy
Hey. So I’m Kristin’s daughter and Helen’s granddaughter, Katy and I am 30. I am a new mom. My husband, Brad, and I had a baby boy earlier this year. We live in Montana. As far as I know, I am a fourth-generation sufferer of RLS, but I suppose it’s possible my great-great grandparents also had RLS, though they probably didn’t know what they were experiencing!
I have always known about RLS, as I watched my grandmother and aunts suffering while I grew up. I experienced symptoms intermittently in my 20s, but they came on with a vengeance while I was pregnant with my son. My pregnancy was almost unbearable; the symptoms were so severe. I would walk around a lot to relieve the symptoms, because the more I walked the better I felt. Sometimes, I would sit on an exercise ball while my husband and I watched TV. Somehow, the contraction of my muscles to hold me on the ball helped relieve the symptoms. And when that didn’t work, I paced--back and forth, night after night.
Since my son was born, I still suffer from RLS symptoms, but they seem to be less severe. Then again, with a new baby in the house I get very little sleep as it is. I am worried about what my future will be like with RLS. I have seen my mother’s and aunts’ and even my grandmother’s symptoms get worse as they got older, and I know what my future holds. As a family we are dedicated to gaining a better understanding of RLS, so that one day my son and his children will not have to suffer as we have.
To hear us tell more about our RLS story, click here.
