On May 8 of this year, I’ll be celebrating 15 years since I was diagnosed with Parkinson’s Disease. It all started with my voice.
Growing up in a talkative Irish family in Kansas City, I considered myself to be a strong person with a quiet voice.
In addition to speaking, I’ve always found different ways to express myself, including developing a musical voice by playing the accordion as well as attempting to develop a singing voice.
At a talent show at Camp Little Flower in Kansas City at 10 years old, I had a childish voice singing the adult lyrics of Mr. Sandman.
When playing the accordion, my music teacher reminded me that, “You play the accordion like you are afraid of waking up the baby. There is no baby here.” My accordion voice was a fearful voice.
In high school, Sister Madaleva kicked me out of the choir because of my flat voice. She threatened to fail me with an “F” if I opened my mouth to sing, or pass me with a “C” if I mouthed the words to the songs. I decided to mouth the words, and my voice became silent.
Back to my voice with Parkinson’s…
Actually, my soft, hoarse voice was one of my first symptoms of Parkinson’s Disease.
At the time of diagnosis, I was involved with Toastmasters, a public speaking group. The audience’s feedback was that I had a nervous, soft voice.
After I was diagnosed, I had the voice of denial for about the first 10 years. I pretended that I didn’t have Parkinson’s by not attending any Parkinson’s support groups meetings. I scheduled my neurology appointments very early in the morning so that I wouldn’t have to encounter any Parkinson’s patients in the waiting area.
Related to my voice of denial is my silent voice. When the accordion players from the Silver Notes would ask me about my Parkinson’s, I embarrassed to admit that my response was “I don’t want to talk about it.”
Deep Brain Stimulation surgery (DBS) compromised my voice even further.
Even 56 sessions of “thinking loud” with Lee Silverman Voice Treatment (LSVT) didn’t result in a loud voice.
I’ve never been a loud person, I shudder when I hear that L word.
I think that "loud" is a four letter word. I perceive it as being angry, boorish, disrespectful, demanding, controlling, unpleasant, obnoxious, argumentative, and rude.
I want no part of being loud. I am a peacemaker of the planet, not a loud warrior of the world.
When my husband, Tom and I lived in Canada for 15 years, there was a stereotype of the Loud American. I never quite understood it. Then I observed an obese woman with curlers in her hair scream at her husband across the main street in peaceful, quiet (not loud) Banff in the Canadian Rockies. Now that was a Loud American.
When we finally found the courage to tell our new Canadian friends that we were Americans, their reactions were always the same: “I can see how Kate might be an American -– she is aggressive enough. But Tom -– he can’t possibly be. He’s TOO NICE.”
Over the years, I quieted down, become nicer (but not too nice), and with Parkinson’s, no one would ever accuse me of being loud.
Due to my lack of voice, I lost my career as coordinator of volunteers at the University of Colorado Hospital. This position required a lot of speaking, and I had an unpredictable voice.
I developed a writing voice by creating a blog called Shake, Rattle and Roll. If my speaking voice doesn’t work, my writing voice usually does. It is very gratifying to be able to reach so many people with more than 168,000 hits. I’m amazed by the power of a reassuring word and the sharing of mutual experiences.
My volunteer work in the Parkinson’s and Deep Brain Stimulation communities has given me the voice of authority and forced me to learn more about Parkinson’s than I ever wanted to know.
Mary Spremulli’s Voice Aerobics CD, Songbirds, has provided a fun way for me to strengthen my voice. My voice feels like I’m dancing and singing like a songbird when practicing with the CD.
I had surgery on my vocal cords and wasn’t allowed to speak for a week. When I emailed the Rockyettes dancers that I wouldn’t be coming to dance class that week because I couldn’t imagine dancing without talking, one dancer kindly responded with “your bright smile and twinkling eyes brighten our dance classes and performances…you don't really need your voice to make things better for all of us!”
Once I was finally allowed to speak and with the help of voice therapy to improve my voice, I finally started appreciating my voice and stopped taking it for granted.
My new voice and speech affirmations are “Think energetic” and “Think strong.” Also, with a shift in attitude toward my voice, I remind myself that:
I have something to say.
I deserve to be heard.
I need to tell my story.
My message will inspire others.
My voice is healthy.
The search for my voice or various ways to express myself is an ongoing part of my Parkinson’s journey. I continue to move forward with hope and optimism.