Meet People with RLS: Marge and her husband Doug
Hi. I’m Marge and this is my husband, Doug. We are both in our early 70s and live in Boulder, Colorado. I have suffered from restless legs syndrome – or RLS – since childhood.
Ironically, our first collective memory of my life with RLS was during one of our first dates. We were teenagers and Doug was taking me to the Iowa State Fair. We were driving along a nearly deserted road with fields of corn on either side of us for miles. All of a sudden, I demanded that Doug pull over. I opened the door, got out and ran around the car twice, got back in and said, “Okay, we can go now.” I’m sure Doug was wondering what was wrong with me, but the sensations in my legs were unbearable and I just had to do something to make them go away. I guess he was smitten anyway, since we’ve been married now for over 50 years!
The truth is, if he had asked me what was wrong, I wouldn’t have been able to tell him. At the time it was the early 1950’s, and no one really knew what RLS was. In retrospect, we realize that my mother also suffered from RLS. But, for my family, it just was a normal, frustrating part of life. Though at least a dozen people in my family, on both my mother’s and father’s sides, have suffered from the symptoms of RLS, I didn’t actually know that RLS was a real medical condition until our son was in medical school. He read medical literature online to see if he could find out what had plagued me for so long. We were so excited when he called to tell us that there was a name for the symptoms we had always called the “twitch” or “frantic muscles.”
For years, our family learned to cope with the attacks of tingling, aching, creeping sensations in my legs. The only thing to do was for me to get up and move. And if I was in bed, I would kick and kick. It broke my heart, but Doug and I had to give up our King-sized bed so that he could at least get some decent sleep. We now sleep in twin beds side-by-side. We’ve also had to change our vacation plans, because I have trouble flying and riding in the car. I would always get “attacks” of RLS in the car; sometimes it was so severe that I’d be jumping out of my skin. As Doug has said, from what he observed my symptoms would go from agitation to agony. The same thing happened when we went to the theatre. I have been a performer all my life and was a soprano soloist for a long time. We love going to the theatre. But I would always have to sit on the aisle. And, poor Doug; I would stand in the back trying to work out the tingling in my legs and, as he says, he would be left in his seat watching the show amongst strangers. I feel terrible that we were unable to do simple things like enjoy a performance together.
Though I have now been officially diagnosed with RLS and my doctor and I have found a way to manage my condition, I do still suffer from symptoms. And as I get older, my symptoms are getting gradually and steadily worse. I can remember when my grandchildren were babies how frustrating it was to me that I couldn’t hold them on my lap to read to them. Such a simple, but memorable experience that I wasn’t able to do.
Doug and I are both dedicated to helping bring awareness to RLS. We have both served as members of the RLS Foundation Board of Directors. I am also an RLS support group leader in Denver and am a member of the RLS Foundation Support Group Advisory Board. We want to do all we can to make sure people don’t have to suffer without knowing why like we did for so long.
To hear us tell more about our RLS story, you can click here.
