Affected Vocal Cords, Unaffected Humor: Carolyn’s Life With Spasmodic Dysphonia

Carolyn Bolz has such a passion for public speaking that she often recites her speeches entirely in rhyme. From Riverside, California, Carolyn fills her life with family, faith, Toastmasters Club, and—for the past several years—the National Spasmodic Torticollis Association (NSTA) led by Justin Aquines and Vi Tran.

“My head began turning uncontrollably to the right when I was in my twenties,” Carolyn recalls. “I also had tremors in my hands and a voice that often sounded as if I was dealing with a severe case of laryngitis. When people would stare or ask me what was wrong, I had no idea what to say. Their comments made me feel self-conscious and embarrassed. I remember others questioning me and wanting to know why I was so nervous.” Though Carolyn had a shaky head, shaky hands, and a shaky voice, she knew those were not simply symptoms of feeling nervous. Though still a young woman, Carolyn felt sure her tremors were caused by a medical condition. Carolyn explains, “My primary physician at that time and then a neurologist were both baffled by my symptoms. I was mistakenly diagnosed with essential tremor. I’m not a doctor, of course, but I knew that there must be something else wrong with me.” Essential tremor (ET) is a neurological disorder. Often confused with Parkinson’s disease, ET causes rhythmic shaking in the limbs, head, voice, and trunk.

Years later, when Carolyn was in her early 40s, she “found the courage” to request a referral to another neurologist. Although she had to wait several months, Carolyn ended up seeing a neurologist at Loma Linda Medical Center in Southern California who specialized in movement disorders. His name was Dr. David Swope. Carolyn recalls, “He looked at me and immediately knew that I had cervical dystonia, also known as spasmodic torticollis. What a relief it was to realize that, at last, there was a name for what was causing my unusual and baffling symptoms!” Over the previous twenty years, Carolyn had seen several doctors, but none were able to correctly diagnose her. Dr. Swope apologized that she had waited so long to see him, which touched Carolyn with his kindness. “He went on to say that if he had known how severe my symptoms were, he would have given me an appointment immediately,” Carolyn relays. “I felt like jumping to my feet and cheering as loud as I could! But instead, I thanked Dr. Swope and told him how very grateful I was to finally have a correct diagnosis.” For others who find themselves in a situation such as Carolyn’s, she advises to be persistent and speak up to the doctor, especially if you disagree with the conclusion. AANEM proudly educates medical professionals in this subspecialty, promoting a message of quality of care.

Later, Carolyn saw an ENT specialist at Loma Linda Medical Center who also diagnosed her with spasmodic dysphonia. Spasmodic dysphonia is a form of dystonia, which makes the vocal cords not behave as they should. This creates interruptions while speaking and affects a person's voice quality.

Dystonia is a movement disorder with sustained abnormal contraction of muscles resulting in abnormal posture of the involved body parts. It can affect different parts of the body including the neck, hand, foot, and back. As a disorder, dystonia is thought to involve the basal ganglia, a part of the brain involved in the planning and execution of voluntary movements. Because the brain cells are not communicating correctly, excessive muscle contraction occurs resulting in the abnormal movements. Dystonia can also be part of other diseases such as Parkinson's disease, or as a reaction to certain medications. Of all movement disorders, dystonia is one of the most prevalent. In North America, it is estimated that around 300,000 people of all races and ethnicities are afflicted. In most cases a normal, full life will be led.

After the diagnosis, Carolyn had botulinum toxin injections in her neck for several years, but eventually gave up on them. “Even with medical insurance, the copays were astronomical,” Carolyn explains. “Besides that, my health insurance changed and I had to find another neurologist. Then sometimes I would end up with difficulty swallowing, which was a very scary side effect. One time, my neck muscles were so weak after the shots that I could barely hold my head up. The injections were a godsend and an almost miraculous cure when I first started them, but unfortunately over time, they didn’t seem to help me much,” Carolyn concludes.

After years of doctor visits, Carolyn has a request for neurologists who see patients with dystonia. “Please don’t begin the exam by asking us if we know who the president is or what day of the week it is. Dystonia does not affect a person’s intelligence or cause dementia. Though I strongly believe that our disorder makes us much more compassionate and caring individuals.”

Over the years, Carolyn has met many other people who struggle with various forms of dystonia. She recalls that their courage and resilience always amazes. From the entire experience, Carolyn feels she has come out with several silver linings. “I have learned to quit feeling self-conscious about my head tremors (from spasmodic torticollis) and my voice tremors (from spasmodic dysphonia), and concentrate instead on all the positive things in my life,” Carolyn states. “I used to feel very hurt when others would stare at me or ask questions about my symptoms. Fortunately, over the past few years, I’ve become much more self-confident and able to ignore unkind comments. I’m grateful, too, that despite having a neurological disorder, I still have the opportunity to do what I love.” By participating in speech contests, speaking at women’s events, church activities, and other venues, Carolyn continues to find her joy in front of an audience. Carolyn plans to stay positive, live life to the fullest, be grateful for blessings, and hold out hope that a cure for dystonia can be found soon. Until then, she will continue to write humorous poems, memorize them, then perform them complete with comical facial gestures and hand motions. “My seven-minute poem called “How Big Clyde Met His Bride” has won several Toastmasters speech contests,” Carolyn says. “There once was a man from Riverside. He was tall and he was wide. Everyone called him Big Clyde...”

To support future education and research of dystonia and other neuromuscular and movement disorders, consider donating to the American Neuromuscular Foundation, where every dollar raised directly funds research.