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“Parkinson’s was a wake-up call telling me to make the absolute most out of my time.”

Bill Barnewitz was diagnosed with Parkinson’s disease
in 2001. He is 48 years old.

Music was a central feature of our daily life in Reno. My mother is an accomplished pianist and my father was a musician early in his life. At one point I sang in a boys choir and I was convinced that I was going to be an opera singer. Of course, it takes real ability to do that and, as it turns out, I had no real talent for singing. I could carry a tune, but after my voice changed, I didn’t have a beautiful voice in any shape or form.

I heard a visiting orchestra come to Reno and I was just stunned by how beautiful the French horn sounded. Right from that point, I knew that was what I wanted to do. It was a moment when I had tunnel vision––all I saw was the row of horns playing. It was like a light bulb being turned on. Since then, the French horn has always been my only focus for an instrument.

I went to the North Carolina School of the Arts and then I attended The Julliard School of Music before playing in New York City for a while. Then I got a job in California in an orchestra that turned out to be failing financially, so I started to look for something else to do. I went to work in a winery and quit playing the horn for two years. Another light bulb went on when I was working at the winery and sitting inside a ten thousand gallon stainless steel tank, cleaning tannic acid off the sides of the tank with a combination of citric acid and cold water. I was listening to a radio that was playing New World Symphony and I thought to myself, “Listen to those horns––I can play better than that.” I got my horn out again, and I found that the Utah Symphony had an opening so I auditioned for it. I was with the Utah Symphony for ten years and that’s also where I met my wife.

In 1995, the Milwaukee Symphony was auditioning for a principal horn. They had three large auditions and could not find anybody. Then they started inviting people and they called me. I hadn’t thought two seconds about moving to Milwaukee prior to that. In September I played with the orchestra for a week and auditioned for the committee, but then I forgot about it, because the auditioning process was very spread out. I was offered the job in December. We moved to Milwaukee with our twin girls and it ended up being a very good choice.

Much of the music we play is so much fun to share with the audience. Each week, there are at least two or three concerts and three or four rehearsals. Besides playing horn in the orchestra, I also teach about nine hours a week at Northwestern University and a few hours at home. I almost never stop practicing. In my head, I’m always going over music, mentally thinking about how I want to phrase things or how I want to practice stuff the next time I pick up the horn. In some ways, music is a very selfish and all encompassing business because it takes so much time to practice and perform.

My symptoms first started to show about six years ago. They began with cramping in my left foot. Then a small tremor appeared in my left leg that would not have been noticeable to anyone else. My wife was more concerned initially––she has an uncanny sense about her and she thought I might have Parkinson’s. I went through the usual route of things with my regular family physician, just asking what she thought. She ordered a battery of tests and none of those showed anything. The doctor that conducted all the nerve tests recommended that I should go see Dr. Nausieda at the Parkinson’s Center here in Milwaukee, and for him it seemed like an easy diagnosis. I didn’t really know anything about Parkinson’s at the time. I mean, I knew it existed, but only that.

At first, there was a psychological aspect to how Parkinson’s would affect my playing. Learning how to time my medications and get the dosages just right was a big challenge for a year. I think I was incorrectly predicting a shorter lifespan of being able to play after this diagnosis. I mean, I felt a little bit like Chicken Little––“The sky is falling!” It was easy at the beginning to assume the worst. But it was also easy to change my thinking and tell myself, “You’ve given music up before, but now you’re back in it for the right reasons and the right reasons are because you love the music. So just keep that in mind and take care of yourself. Love the music and just keep going for as long as you can.”

My family life gives me the most joy of anything that I do. Our girls and my wife are all animal nuts. We have two dogs, a cat, a hedgehog and a frog, so I get ‘pet therapy’ as well. My family’s support has been huge. There was also great communal support from the orchestra when I told them I had Parkinson’s. Being in an orchestra is like having an additional 88 people in your family.

I think you should contact your doctors when you notice a change, and I think you should keep in touch with them on some kind of regular basis. But in between visits, you should learn as much about Parkinson’s as possible, so that if you are noticing something different, you can mark it and report it. I’m not exactly the poster child for exercise but I know that it’s important. I also feel that it is essential to have someone to talk to when you’re not feeling good about how things are going because I think it’s easy to get the element of depression involved. You don’t always need to talk to a therapist or anyone professional––it is just as easy to say to a friend, “I’m not happy about how things are going and do you want to go for a walk?”

These days, I have a lot more tremors and fatigue. But the medication really works. I take my Sinemet and I go about my day. As long as it’s effective, I’m satisfied to keep going the same way.

The idea of eventually changing careers does not bother me in the least because I’ve done it before and I know it’s entirely possible. Music is a wonderful thing, but there will still be concerts to attend and recordings to listen to, so it’s not like I would be without music. There are so many other interesting things to do and, if I’m not too disabled, I’m going to have a great time doing them. If I am too disabled, then I’m still going to find something to do with my brain to keep it busy. I’ve thought about this a lot because there will be a point at which I can’t play anymore.

I do not want to be known as ‘The horn player with Parkinson’s’. I want to be known as a good horn player––with no conditions attached. I don’t want to let Parkinson’s define me. I think that is important and it probably applies to any disease that someone may be fighting. Don’t let the disease define you. I have a student whose father has very severe Multiple Sclerosis (MS), and when I think of his life being actually physically cut short by MS, it reminds me that there are a lot worse things than having Parkinson’s. Which is not to say that Parkinson’s is great because it isn’t at all. But you can live with Parkinson’s. You can keep going for a long time––you can do the same things you were doing before. You just notice that you’re not feeling as tiptop as you were before you had symptoms.

If you want your life to be all that it can be, then don’t dwell on the fact that you have Parkinson’s but instead dwell on the fact that, until you are really disabled, you should make the most out of your life. Parkinson’s was a wake-up call telling me to make the absolute most out of my time. That’s the thing, isn’t it? No matter who you are or what you’re diagnosed with, or even if you are never diagnosed with anything, you should treasure life and be fully engaged in it.

Bill Barnewitz was the principal horn player with the Milwaukee Symphony orchestra and the Santa Fe Opera orchestra.  He gave his last performance in 2010.  He has a number of post-orchestra plans and is currently studying at university to complete a Masters of Social Work degree.  Bill also finished a horn and chamber music CD in 2008 that included other instruments and singers, too.  All proceeds from the CD go to Parkinson’s research and education.