My Life With Parkinson's
Five years ago, while rehearsing a speech for my job as executive director of the American Society of Magazine Editors, I stood at the podium and started feeling like a bobble-head doll. I couldnt keep my head steady or get the words out the way I had done countless times before. At the time, I thought I might have had a stroke. Looking back, I realize that these were some symptoms of Parkinsons disease, the same debilitating illness that dramatically changed the lives of actor Michael J. Fox and boxing icon Muhammad Ali.
My life hasnt been the same since that day in 2003. Even with my medications, I still have tremors at least two to three times daily. When that happens, I cant talk on the phone or type because my arms get so tight that I lose strength. The tremors knock me off balance and make me feel exhausted.
Through it all, though, Ive discovered an altruistic side of myself that I never knew before. Helping others with Parkinsons—an incurable chronic degenerative disease—has become my mission. Since my diagnosis, Ive raised nearly $200,000 for the cause, and Im working on new ways to help. My hope is to inspire others to join me.
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A total shock
Heres something you probably dont know about Parkinsons disease: Theres no definitive blood test or CT scan that reveals you have it. Instead, a doctor takes a careful medical history and performs a neurological exam, looking for symptoms. When I saw the neurologist, I had to fill out a 15-page questionnaire asking about daily habits. Then the doctor checked my joint and arm movements and asked, “Can you button your buttons? Do you drool? Can you turn over in bed?” When the testing was over the doc said, “Theres no easy way to say this, but you have Parkinsons.”
By the time I heard that, I had been doing a little reading about the disease. A year had passed since the symptoms started—tremors in my legs, tightness and weakness on my left side, “the mask,” where you lose the expression on your face, and those head bobs—so I sensed something was wrong. Still, I wasnt prepared for the diagnosis. It felt like a death sentence to me, at age 51.
The doctor gave me a prescription for a monoamine oxidase (MAO) inhibitor, a type of antidepressant that often helps improve motor symptoms, but I hardly heard what he had to say. When I left his office and returned to mine, I was in total shock. I closed my door and sat at my desk, sobbing.
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Treating Parkinsons isnt easy. The disease progresses differently in everyone, and the symptoms arent always the same. As with all illnesses, having a good doctor is important. Unfortunately, my experience with doctors has been trying. When I first complained to my internist about my symptoms, he sent me to a neurologist who used the word “tremors” but never mentioned Parkinsons. That doctor gave me a medication designed to stop the tremors by lowering my blood pressure. When that didnt work, I went to see the world-renowned doc who finally diagnosed me. Soon after that, he conceded he was too busy to see me regularly.
I finally found the right neurologist for me in July 2004. I liked the forthright way she talked, and I didnt feel she was rushing me. During our first appointment, she reconfirmed my diagnosis and had great recommendations for other medications that could stop me from feeling so off-balance and weak. I tried a few before settling on the two I take today—Stalevo, which helps replace the chemical dopamine missing in the brains of Parkinsons patients, and Mirapex. The latter is usually used for restless legs syndrome, but it works for me because my leg tremors are very intense. I can be fine, and then five minutes later feel like Im being shaken out of my chair.
Down the road, I may consider deep brain stimulation, used for advanced Parkinsons. Its a miracle: Electrodes are placed in the brain and a pacemaker is implanted to stop tremors. Right now, Id rather have tremors—and appointments where Im asked about drooling and losing my balance—than surgery.
To help my body deal with the disease, I hired a personal trainer because I know there is a correlation between exercise, symptom improvement, and stopping Parkinsons progression. The training, which includes balance work, weights, and cardio, has made me feel stronger. I take frequent bike rides, and I can still outdance anyone in the room.
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Staying upbeat about my future definitely helps me cope with this disease. What helps even more is when Im working hard to raise money for a cure that will alleviate suffering for the roughly 1 million other Americans with Parkinsons disease, 400,000 of whom are women.
When I was first diagnosed, I came across the Parkinsons Unity Walk, an annual fund-raising event. I created Team Mag Queen (“Mag” for magazine) and told my friends and family that my goal was to raise $1,000. The first donation I got was for $1,000, and in April 2005, the first year I did the walk, I wound up raising more than $60,000. Then I organized a big event to launch Punch Out Parkinsons, a public-service-announcement campaign. That night, I secured advertising placements that equaled more than $45 million in magazine ad space. Ive also raised $30,000 from sales of a silver Parkinsons awareness bracelet that a friend designed. (I call it “Inspiration.”) And this spring, I couldnt have been prouder after receiving a humanitarian award for my efforts at the Unity Walk in New York City.
Parkinsons is a full-time job for me. I work eight hours, then I go home and continue working on awareness and fund-raising. I feel its a calling. When I ask myself why I have this disease, I know the answer is that Im supposed to have it, that Im supposed to do good with it. Still, the challenges are inescapable—and close to home. Although most Parkinsons cases arent thought to be genetic, my mother was recently diagnosed. Now, I try to be her cheerleader. But I know thats not enough.