It was early 2000 when I noticed a slight twitch in my left calf. Over the next two years it got worse and I developed a Involuntary shaking of the hands, arms, legs, jaw or tongue. The typical Parkinson’s tremor is “pill-rolling” – it looks like holding a pill between thumb and forefinger and continuously rolling it around. Some people report an internal tremor, a shaking sensation inside the chest, abdomen or limbs that cannot be seen. Most Parkinson’s tremor is “resting tremor,” which lessens during sleep and when the body part is actively in use. in my left hand. I figured my body was reacting to the stress it was under. I was not prepared when after a 45-minute exam the neurologist said, “You have early onset Parkinson’s disease (PD). Go home and be happy.” How dare he give me such a diagnosis based on that exam? I sought a second opinion, knowing the result would be the same. PD was confirmed, again.
How could I go on, how could I face the future? Denial is great until you are forced to face the truth. For the next few years I hid my disease from most people. Eventually, I told some colleagues, my husband’s family and my two sisters. I did not tell my mother because she was battling PD herself. It took me a long time to accept that I had a progressive, debilitating disease.
In 2005 when we moved to Boise, Idaho, from California I started taking meds for the PD and I did very well. When I looked for a job. I’d keep my trembling hand out of sight during interviews, but stress made the symptoms worse. I held two jobs over the next three and a half years. A friend suggested I apply for Social Security Disability and I qualified. Once I stopped working, I saw the toll stress took on my symptoms.
Over the next several years I was active in my church and I worked out regularly. I attended my first PD support group where I was overwhelmed by the number of people in the room and their conditions. It was scary to see my future. The guest speaker was Rae Ann Norell who spoke on living well with PD. She said she was looking for a woman about her age to share experiences with. I was that woman! We are now good friends. Before PD, I was shy and did not enjoy speaking in public, but that changed. I started co-leading a PD support group.
In 2013 I wrote my mother’s story for her grandchildren and future descendants. The book was published and since then I have written, edited and published nine books. I helped my 85-year-old friend write her memoirs for her family. I reinvented myself through writing.
I started seeing a new neurologist, who firmly believed in exercise for her PD patients. I was one of the first to sign up for the YMCA’s Delay the Disease exercise program for people with PD. It was inspiring to see how every person in the class improved. The Y also had an Artist in Residence and offered our group an acrylic painting class. My skill never exceeded the paint by numbers I did as a child. I had never been artistic, but I wanted to try something new. We were supposed to paint two hills, a tree and the moon. I found myself painting over everything. The brush had a mind of its own. In the end I came up with Moonlight Over the Sea. This was the first day of my life as an artist and I was hooked.
I’ve been painting ever since. Sometimes I just pick a color and see where the brush takes me! At a particular low point last summer, I painted Calm through the Storm. A few weeks ago I was contacted by an educational company. They wanted to use one of my paintings on their program brochure for their upcoming symposium on Parkinson’s and Psychoses. And they paid me $250! They chose Moonlight on the Sea, my first painting.
I never knew I had this in me. Research shows that many people with PD have an explosion of creativity, and it turned out to be true for me. Seeing a canvas come to life is exhilarating. I feel accomplished. When other people like my painting, it’s a bonus. My life has been enhanced by my PD and I am eager to share my story with others.
Life isn’t over with a PD diagnosis. It can be very rich and rewarding. I will not take this disease laying down. I have too much living to do!