Growing into Parkinson’s
I remember as a child being asked, “What do you want to be when you grow up?” The answer remained much the same from grade school through high school: “I want to be a veterinarian.”
But a funny thing happened on the way to vet school. I became a speech-language pathologist. And after that, I became the administrator of a large group of itinerant educational specialists, a strangely wonderful yet increasingly stressful position. It was during this time that odd symptoms resulted in my diagnosis of Parkinson’s. I retired at age 52.
In the early years of this diagnosis, I asked myself, “What do you want to be when you grow out of this disease?” I studied Parkinson’s. I learned to exercise. Forced exercise would help delay the advancement, but I had to learn it wasn’t going to help me grow out of this progressive, incurable neurological disease. I had to grow into it.
Growing into it could only be accomplished after physically demanding adventures: walking the Camino de Santiago pilgrimage routes across France and Spain and bicycling across the state of Iowa battling heat, humidity, and hills. When these extreme adventures were out of my system, I could focus my energy toward growing into acceptance.
During my travels, I wrote about my experiences on my blog and social media channels. My readers urged me to write and publish a memoir. With the extreme experiences fresh on my mind and Deep Brain Stimulation (DBS) improving my movement, I completed the book, “The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease,” and published it on March 15, 2019.
My Parkinson’s wasn’t going away, so I embraced it. My husband tells the story about watching as I entered the doors of my first Parkinson’s conference, reached out my arms to the audience, and said, “These are my people.“
My involvement with the Parkinson’s community expanded at a frantic rate after my book came out. I became a support group facilitator and an Ambassador for the Davis Phinney Foundation for Parkinson’s. I traveled to World Parkinson’s Congresses, The Victory Summit events, and attended workshops sponsored by regional foundations. Serving as a Parkinson’s policies advocate and a regional team leader for the Parkinson’s Foundation Women and Diversity Forum further stretched me.
To promote my book, I took to the road again, this time with four (actually six) wheels under me in a van named Doolie. My book tour required me to grow into the public speaking responsibilities that accompanied book promotion and increased community involvement. I arranged to speak to two dozen support groups in Washington, Oregon, Idaho, Nevada, and California. At each place, I was asked, “Do you have an audiobook?”
Meeting people in different stages of Parkinson’s, I saw a definite need for audiobooks for our community. Yet, the prospect of successfully producing an audiobook in my walk-in closet studio was slim. I didn’t think I had the equipment, skills, or patience needed. Turning to the professionals, I searched for just the right voice to serve as narrator and a studio to record and produce my book in audio.
I hit a wall, though, when I discovered the process was cost-prohibitive. So, I set that dream aside and focused on selling more of the book’s paper version.
Magic happened when Ali Shaw, the editor of my paper book, announced she was starting an audiobook branch of her business. She had believed in me enough to take on my story from the beginning and encouraged my current efforts.
We had a talk that went something like this:
Me: “I can’t afford a narrator and studio time.”
Ali: “Why don’t you narrate it yourself?”
Me: “I am a person with Parkinson’s. My voice is not going to hold up for a page, much less an entire book.”
Ali: “I bet you could learn and improve with practice. Think about it.”
Ali told me she would be off work for three months on family leave, which gave me time to work on my narration skills. Because she believed in me, I had to try. Who better to narrate a book by a person with Parkinson’s than the author with Parkinson’s?
Only the names Tim Hague and Michael J. Fox appeared in my search for people with Parkinson’s author/narrators. I thought, there must be more out there. Yet, I didn’t find any other audiobooks narrated by their authors with Parkinson’s. Were they not offered the opportunity? Did they think their vocal quality was not good enough? Could they not find help with the process?
As a former speech-language pathologist, I understand the mechanics of a strong voice. If someone is considering self-narration, they should seek the expertise of a speech-language pathologist trained in programs designed for Parkinson’s patients. Here are the areas I addressed in my preparation:
- Breath support and control
- Sustained phonation exercises
- Sustained voice while reading
- Tone, vocal quality, and loudness
- Pronunciation of multisyllabic words
When Ali returned to work, she was thrilled with the improvements in my voice. She set me up with Opal Studio in Portland, Oregon. It took me approximately 22 hours of studio time to narrate the book and make corrections.
Wanting my work to be accessible to everyone, I chose a format that would match my voice narration with the book’s printed text. Like Audible Whisperlink , this new feature will be an asset to people with Parkinson’s, other disabilities, second language learners, and students of all ages.
I am happy to share my experiences with other authors who are interested in self-narration.
This experience is just one of the many that has helped me grow into my diagnosis. Being comfortable in my Parkinson’s skin, I no longer search for self-acceptance. I am finding ways to help other people with Parkinson’s embrace the disease.
What do you want to be when you grow into your diagnosis?