Personal Stories of Patients

Learning to Dance

Susan Voyvodic

My story started almost a year ago when suddenly I noticed my hand writing getting smaller. I had been having other symptoms for about three years but all the experts I saw dismissed the possibility of Parkinson's, even though I have a brother who has it. I know the symptoms and the handwriting hit me like a ton of bricks. I have Parkinson's? It was followed by a frozen shoulder and then the telltale hand tremor. Finally - the "official" diagnosis came. My first thought was, "really, cancer AND Parkinson's…really??"

I was going to get this printed on a t-shirt. You see, I felt I already had my challenge. I was diagnosed seven years ago with ovarian cancer and fight that every day. Do I have any more fight in me? Well the answer is that we have in us what we want to have. I need to be able to hold and play with my grandchildren...and my three kids aren't even married yet! I refuse to let this take me.

With the inspiration of my husband, my children, my brother and my support group, I immediately started an exercise program and I educate myself as much as I can. I read about the tandem cycling research being done at the Cleveland Clinic and we recreated it in our basement with a tandem and a bike trainer. I am determined to "sweat" 4-5 times a week.

My brother taught me to never be embarrassed by my Parkinson's and to use it as a chance to educate the people around me about this disease. I first did this with my instructor at the rec center I go to and now the instructor is always checking on me and helping me with needed modifications. I then started sharing with the others around me in class.

In the spirit of “more exercise is better”, we did a lot of hiking last summer with our new hiking poles. The poles are an incredible help and even young non-PD people use them! Every time we started on a trail it seemed like all my symptoms would dissipate. We even did an 8-mile hike along the top of the Continental Divide trail - it was spectacular - not only the view but the fact that I did it. We plan to do a fourteener this summer.

Big goals...they help you stay positive and focused on the next challenge. They help you keep working toward something you want in the near future. Now when my symptoms seem to slow me down, my husband reminds me that the hiking was done with "purposeful intent" and to get in that mindset when I'm having some difficulty with those simple every day tasks; putting your sleeve in a coat, tying a shoe, getting into bed. It does work!

Every day we say "it's going to be a good day!" I even have the rap song "Good Day" as the ring tone on my cell phone! We try to look for the sparkles around us. I believe this is less of a "fight" and more of a "dance". I read somewhere that "Parkinson's is like dancing with a bear!" It couldn't be truer.