Twenty-five years ago I started having trouble with my right arm. I went to a series of doctors and eventually was referred to Dr. Jay Nutt at OHSU. I was dumfounded when he said, “You have Parkinson’s Disease.” Only 40 years old, I couldn’t believe that it was true. To be honest, I had a really bad attitude about my situation. At first I would not even talk about it with other people. I had to give up my art and sewing; I gave away all of my fabrics because, at the time, I didn’t know what the future had in store for me. Working with Dr. Nutt and Julie Carter at the Parkinson Center of Oregon, though, lead me to a new reality.
My symptoms grew worse over time: dyskinesia, or involuntary movements; restless leg syndrome; and cramping. In 2002 I participated in a clinical trial for deep brain stimulation surgery (DBS), run by Dr. Penny Hogarth. From before my surgery to after, it was a difference of night and day and it completely changed everything. Whereas before I would not so much as talk about my Parkinson’s, I am now a reference for people considering undergoing DBS surgery. It’s not for everybody and some people just aren’t ready, but for me it was life changing. I am now back to being a full time artist – and often wish I hadn’t sold off all that fabric. I still have my challenges but denial is my best coping mechanism. It takes me longer to type than it used to. When I’m walking I sometimes find myself involuntarily speeding up and all of a sudden I’m running. Also, my facial expressions aren’t what I think they are: when I smile, it doesn’t look the way it used to. But through everything I have had supportive friends and family, and Julie Carter and the team at the Parkinson Center have given me hope all the way along.
I am lucky. I really am. Participating in research is my way of giving back. But philanthropic support of the Parkinson Center is vitally important. There is so much work to be done to find a cure for this disease and to discover its causes. We also have a need for education and outreach about Parkinson’s, and all of this requires funding. Please consider making a gift today to support the Parkinson Center of Oregon. Your gift is a gift of hope.