After 40 years as an independent pharmacist, Robert Bowles was an expert in helping people with medical problems. Yet when it came to his own health, Robert wasn’t able to find answers for two years of seemingly unrelated medical issues. Despite his own training and receiving what he called the “Cadillac of medical care,” Robert saw at least eight doctors before being diagnosed with Lewy body dementia.
Robert’s entire life was devoted to his wife, Judy, his family and customers, his faith and the community of Thomaston, GA. He was the proud owner of Big C Pharmacy, where his deep commitment to his patients ensured they were never just treated as customers. They were family.
Robert’s health was good, despite having attention deficit hyperactive disorder (ADHD) and essential tremor. As a self-described “ADHD workaholic,” Robert spent up to 120 hours a week serving others. It was his purpose in life and included caring for his wife and children during Judy’s long battle with lupus and rheumatoid arthritis.
With Judy’s debilitating illness increasingly a worry, Robert sold his business after 38 years to spend more time on family matters. He continued to work as a pharmacist for a national chain, but he no longer had the flexibility of going the extra mile for his patients. What Robert saw as one of his callings in life, to serve his patients in a very personal way, took a major hit.
Robert soon struggled with major depression and apathy, sleeping more than 12 hours a day even on work days. Despite the depression, Robert was functioning well cognitively but he faded into a shadow of his former workaholic self, which worried his family. He was prescribed an antidepressant, saw a counselor, and was referred to a psychiatrist who added more medication.
Within days, Robert was barely functioning at work. As a pharmacist, he knew the problem was rooted in the new treatment and set out to find answers. It wasn’t the first time he had reactions to medications, like having hallucinations after knee replacement surgery.
However, other problems crept up, driving him to the cardiologist to address blood pressure problems, fainting and chest pains. After a hospitalization, tests and a variety of drugs, the cardiologist was at a loss for what to do. The problem wasn’t his heart, so perhaps it was his nervous system. Robert soon retired because of his medical problems and before long, began experiencing cognitive concerns as well.
He referred Robert to a neurologist, which at the time was infuriating to his patient. Robert thought the doctor had thrown up his hands in surrender and showed him to the door. Looking back now, Robert acknowledges a neurologist was exactly what was needed.
After a comprehensive neurological exam, he was initially diagnosed with Parkinson’s disease. But his cognitive abilities declined quickly, leading to a re-diagnosis of frontotemporal degeneration and a referral to a specialty clinic for confirmation.
More careful scrutiny by an expert revealed the truth. Robert actually had Lewy body dementia. He displayed every single diagnostic symptom, from parkinsonism and dementia to REM sleep behavior disorders, hallucinations, fluctuating cognition and medication sensitivities. And every doctor except one had missed the signs.
Over the next six months, the new doctor slowly built a better treatment regimen for Robert’s LBD symptoms. Robert, who had already given up driving, started to improve steadily. Within a few months, Robert had stopped hallucinating, was thinking more clearly, had his blood pressure stabilized, and was sleeping well.
He was delighted to accept an invitation to attend a business development conference; Robert drove himself to the airport, traveled alone and enjoyed the event with his colleagues immensely.
Robert’s story is a perfect example that even with good medical care and training as a pharmacist, navigating LBD diagnosis and treatment isn’t easy. But with the help of the right medical care, it’s possible to minimize the impact of LBD and increase quality of life considerably. “Independent pharmacists can also be a great part of the care team,” stated Robert. “They can consult with LBD families and facilitate communicating concerns with the prescribing physician.”
Robert’s advice to LBD families is both personal and professional. Never give up on pursuing answers about your medical concerns. Ask questions, expect answers, change doctors if necessary, and find a good pharmacist in your community.
Do you have a touching, inspiring or even funny story about living with LBD? Share your story and a photo on www.LBDstories.com. You will help others know that they are not alone.
