It’s not often that a person growing up among the cotton fields of southwest Oklahoma goes on to become a successful manager of global technology companies, but Leland White is not your average person. During his career, he built and managed semiconductor manufacturing plants around the world and provided management consulting services to large corporations and federal agencies. After a successful business career, he retired in Colorado to pursue two passions: downhill skiing and high-performance driving.
Referred to by family and friends as “Lee,” he turned 78 last spring. I talked to Lee about the challenges he’s faced for more than a decade with a progressive swallowing disorder. The support of speech-language pathologists specializing in dysphagia, as well as his positive attitude, allowed him to continue to do the things he loves.
How did the problem begin?
The problem began as a minor sore throat in 2002, which worsened over time. After numerous tests the consensus was acid reflux. But none of the prescribed medications relieved my symptoms. Eventually, I made an appointment at the National Jewish Hospital in Denver, where specialists corroborated the diagnosis of acid reflux.
A modified barium swallowing test revealed an inability to swallow “normally.” Because of these findings, the physicians at National Jewish recommended I see a neurologist to rule out the possibility of a stroke. After a battery of tests, the neurologist diagnosed my condition as bulbar palsy, or weakness of the bulbar nerves. He explained the disorder was untreatable, and it would eventually progress to amyotrophic lateral sclerosis (ALS). He estimated I had two to five years left to live. That was nearly 15 years ago.
What did you do next?
Not willing to accept such an ominous diagnosis without a second opinion, I went to the Mayo Clinic and endured even more testing. The results eliminated numerous conditions—myasthenia gravis, Parkinson’s disease, multiple sclerosis, ALS—but still no definitive diagnosis for the swallowing issues.
They did diagnose central sleep apnea, and prescribed the use of a bipap machine. In addition, swallowing specialists at the Mayo Clinic suggested electrical stimulation treatments to improve swallowing. More than two dozen treatments later, I showed marked improvement, verified by barium swallow tests. Over the remainder of the year, I arranged for visits every few months to “refresh” the throat muscles with more electrical stimulation treatments.
Although my ability to swallow improved, the throbbing pain in my throat intensified. Seeking relief, I made an appointment with a pain management specialist who prescribed carbamazepine, a medication generally used to control epileptic seizures. My throat pain vanished literally overnight.
The electrical stimulation and pain medication offered relief for while, but my swallowing gradually degraded. I began aspirating, which caused extensive lung infections leading to pneumonia. By 2013, I had been hospitalized and intubated seven times, each time becoming more severe. I also began experiencing shortness of breath.
At that point, I agreed to the insertion of a gastronomy tube. Today, I completely nourish myself using liquefied food products. Two years later, after a serious illness, increasing shortness of breath, and reliance on oxygen, I agreed to a tracheostomy.
What treatments worked best?
Electrical stimulation treatments along with speech treatment delayed the inevitable loss of vocal control for years. And medical technology saved my life. I use a ventilator at night, an airway clearance treatment to loosen mucous in my lungs, and another device to extract the mucous.
During a recent checkup, the neurologist reported no signs of stroke, traumatic brain injury, or ALS. He said go enjoy life—and I am. Today I take no medications and live pain-free.
What advice can you share for others experiencing similar issues?
Seventeen years after the first symptoms, I can admit living with a swallowing disorder is challenging, especially without knowing its root cause. But through it all, I remain positive. This made a significant difference in the quality of my life.
I continue to challenge myself and try to keep as physically active as possible. I live six months of the year on my family ranch in western Oklahoma. Breathing is easier at lower altitudes, and I benefit from the manual labor required of ranching life.
Although I cannot ski today, I still drive a race car with the help of my son Mark, who has also developed a passion for racing. Giving up on driving would be submitting to my disability. So although someday I might have to give it up, for now, I keep driving on.
Sharon Baker, EdD, is applied professor of deaf education at the University of Tulsa. firstname.lastname@example.org