Working at INSIGHTEC, I became aware of how daily tasks, such as holding a glass or writing with a pen, can be nearly impossible for essential tremor patients. What I didn’t really internalize was the extent of the emotional impact that essential tremor can have on patients’ lives. Recently, I had the honor to have a conversation with Diann Shaddox, founder of the Diann Shaddox Foundation for Essential Tremor. I was incredibly moved by her story as she spoke of the frustration in coping with this disorder.
Diann began to tell me about her younger years, when her hands would shake and she was sure that no one noticed. There was one pivotal moment in Diann’s early 20’s when her world changed forever. She was standing at the post office window and she wasn’t able to fill out a simple form. It didn’t matter how hard she tried to write her name and address, her hand wouldn’t do as she wanted. She could hear the whispers and comments from people standing in the line behind her – sounds that haunt her until today. Tears flowed down her face as she raced out of the building clutching the package in her arms.
At that moment, she understood that this tremor was more than the diagnosis from her doctors of being nervous and she became determined to find an answer. Diann spoke to three different doctors who diagnosed her as being tired and nervous. It took her another year and a half before she found one of the top Neurologists in the state of Kentucky who confirmed that she had essential tremor.
She was so embarrassed by her shaky hands that she felt she needed to hide them whenever she was in public, even with her family and her friends. She added, “Being out in public was difficult – the stares were tough, and once more, the simple feat of filling out forms was devastating. Even being in a doctor’s office was difficult. The nurses would question why I was so nervous and even chastised me when they tried to take my blood pressure and my arm would shake.”
As I listened to her story, it was difficult for me to imagine how she felt going through these experiences for the past 35 years. I began to realize how simple, daily tasks that many of us take for granted are a huge obstacle for those with essential tremor.
The question of why, a question without an answer, played often in Diann’s mind. As a novelist, writing was an excellent outlet. Her handwriting hadn’t been legible for years, so she started using a computer and keyboard to write her books. Diann’s novel, A Faded Cottage, came about one night when both of her hands and her body were violently shaking. As she typed away, she made a lot of mistakes, but the story of Quaid Witherspoon – an artist whose hands had deserted him due to ET – was born.
Through her writing, she found out that she wasn’t alone. There are actually millions of people around the world suffering from essential tremor. At book signings, she heard stories of other people living with ET, stories that were so similar to hers. She no longer felt the need to hide her shaky hands and she became empowered to inform people about essential tremor. She hopes that through her stories, other people with ET won’t feel the need to hide or feel alone like she had for so many years.