Employer Honors DMRF Member: From the Dystonia Dialogue

In December, the DMRF was contacted by Marketing Coordinator Nikki Mueller of Club Scrap, Inc. to reveal that the Wisconsin-based organization had raised over $6,200 for the DMRF in honor of employee Mary Laehn who has dystonia. Club Scrap honored Mary by hosting a silent auction to raise funds. Nikki wrote, "None of us are able to truly share in Mary's daily struggles with dystonia, so we decided to show out admiration by making a donation to the foundation that is searching for a cure for her pain."

Mary Laehn wrote an essay about her experience with dystonia for Club Scrap members. Below is the letter that inspired her employer to honor her so thoughtfully.

My name is Mary Laehn. I have generalized dystonia. It has had an impact on my whole life. First, though, dystonia affected one of my five older brothers, Gary. He had severe dystonia. As a young boy he dragged his right foot. When he was 12 his head and neck started jerking to his left. He went to Madison to see specialists and in a matter of months he was in a wheelchair, then bedridden. His back arched, protruding his stomach outward like a 'C.' He had three brain surgeries, but they didn't really help. When I was 14 and he was 19, he died as a result of errors made with his medication.

Growing up I was always afraid I would get dystonia. At about age 11 at night when I went to bed my head would twitch, and I would tell myself it was just my imagination. In high school kids would ask me if there was something wrong with my neck. I would tell them no and ignore it. However when I started college, my speech started to get bad. My tongue would not move where I wanted it to in order to speak clearly. The first neurologist I saw told me it was all in my head. At that time, my mother was seeing an oncologist at Froedtert & The Medical College of Wisconsin in Milwaukee, and she mentioned it to him. He recommended I see a doctor there. So I did lots of tests and saw several doctors. They all agreed that with my family history it was probably dystonia. I tried every kind of drug they had and all I got were side effects. They used video footage of me to help teach doctors about dystonia.

My left arm began to have tremors. By then I was a senior at the University of Wisconsin-Oshkosh in the nursing program. My advisor told me to quit, that I could never be a nurse. I told her I was going to finish. My brother Gary inspired my dream to be a nurse, and I wasn't going to let dystonia stop me. I graduated in May of 1983 with highest honors.

I got married and worked for several years in nursing homes. It was getting harder to give shots and write reports, so I decided to give it up and stay home with my daughter Angela while running a day care. By 2003 it was getting hard to find clients. People were afraid that their children wouldn't learn to speak properly because my speech was getting worse. My right arm started shaking, and I began to worry about accidentally injuring a child in my care because of the shaking. It was time to look for something else. A friend of my daughter's had a job at Club Scrap. I saw the ad in the paper, and I decided to write a nice cover letter about myself and give it a shot. I am sure glad I did.

Most people who do not know me think I am either retarded or deaf. I have very few friends left. Of the friends I've lost I think they find it too difficult to try to understand me, or they just feel uncomfortable. It can be very lonely when you have so much you would like to say, only you can't get it out. I can't make a phone call to any business because they think it's a crank call or just keeping saying I can't understand you. Right now my husband makes all the phone calls. I can barely write anymore. Once sentence and my wrist gets tired and cramps up. Most of my muscles are like that. They more I use them the quicker they get tired and start shaking. I have to rest a lot more than I used to.

Cooking has become more adventurous. I shake so much now that I can't accurately measure anything, so I don't bother to. Nothing ever tastes the same twice. My children marvel at how I can still pour a glass of milk and seldom spill. I just shake it from one edge of the glass to the other. My husband teases me and says I can make the perfect martini, shaken not stirred. Cutting vegetables is another trial. I have to be very careful with sharp knives so I don't cut my finger off. I often peel my knuckles with a peeler.

Zippers and buttons can get difficult. It now takes about 20 minutes to put on a pair of earrings or a necklace. Make-up is a thing of the past. I would probably poke my eyes out.

I can no longer read for very long because my neck muscles get stiff and sore if I sit in one position too long. My head and neck twist toward the left, often causing severe pain. My shoulders are no longer the same height duet to contortions of the muscles. I have been getting botulinum toxin injections in my neck and shoulders. It's about 15 to 20 small shots throughout that area to relax the muscles. The problem is when I get the shots I can't swallow properly for a time. I already have trouble chewing and swallowing, but the botulinum toxin makes it worse. I have to go on a liquid and soft food diet for about two months after the shots. They do take away the severe pain and make my head and neck stop twisting so much for about four to five months.

I am thankful I have as much mobility as I do. Many people with dystonia do not. I know I may gradually get worse and I pray every day that it takes a very long time.

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