My path to diagnosis involved visiting 8 physicians over 18 months.
Mid-2010: My body began telling me that something was not the same. There were no clear symptoms, and physician visits and lab tests had yielded no answers. I began going home from my pharmacy in the middle of the day and sleeping for 2 to 3 hours. After resting, I returned to the pharmacy and finished the day. The previous year, I had been President of the Georgia Pharmacy Association and traveled across the United States to meetings for approximately 120 days. During the next 3 months, I thought that maybe my problems were just fatigue/exhaustion. There were no memory issues at this time.
August 2010: My situation had not changed, and there was still no answers. My wife has Lupus and Rheumatoid Arthritis. I became fearful that something might happen to me, and she would be left with a pharmacy to dispose of. Reluctantly, I begin negotiating the sale of my pharmacy to a national chain. The sale was completed in December 2010.
February 2011: Depression started. I speculated that this was due to selling the pharmacy that I had owned for 38 years. I had been fortunate to have a close relationship with my patients and that no longer existed. I began seeing a counselor.
June 2011: At the request of my counselor, I saw a psychiatrist for him to evaluate the antidepressant that I was taking. He agreed with the medication that I was taking and added another medication with the instructions to take one daily for 7 days and then increase to one twice a day.
July 2011: The eleventh day of treatment with the new medication, I went catatonic. Walking in the door of my family practice doctors, the receptionist told me not to stop but to go to the back of the office. The nurse told me immediately to get into an exam room. Within minutes, two doctors were in the room with me. They started the process of tapering me off the new medication. (Being a pharmacist and understanding the medication, I likely would have never agreed to take the medication if I had known I had LBD.
October 2011: I began having chest pain and my blood pressure and heart rate started decreasing. Fifteen minutes after being admitted to the hospital, I was transferred by ambulance to an out of town hospital to be seen by an intervention cardiologist and an electrical cardiologist. The intervention cardiologist quickly determined that my stent was open and there was no blockages. The electrical cardiologist determined that I had neurocardiogenic syncope (when I would stand up, my blood pressure and rate was dropping to significant low levels).
Over the next 7 months, the electrical cardiologist treated me, reaching a point of me taking 7 tablets a day to raise my blood pressure and 2 a day to lower it. The episodes of passing out and falling to the floor had increased even to the point of injuring myself.
April 2012: The electrical cardiologist referred me to a general neurologist. The diagnosis at my first visit was Parkinson's and mild cognitive impairment. I was started on medication for Parkinson's.
May 2012: Return visit to general neurologist. At this visit, I was told that I did not have Parkinson's but Parkinson-ism and to stop the Parkinson medication. Also, I was told that I likely had Frontal Temporal Dementia. The physician ended this visit by telling me that he was referring me to Emory Cognitive and Memory Clinic in Atlanta where they would be able to accurately diagnosis the situation.
June 2012: I was continuing to pass out and fall. The initial information that I received prior to going to Emory was that I would receive my diagnosis on the second visit. After a 3 to 4 hour visit for physical exam, neuropsychiatric testing and labs, I was told that everything taking place led to dementia with Lewy bodies with mild cognitive impairment. My blood pressure was the main concern at this time for the cognitive neurologist......"we have to get you blood pressure under control". He prescribed Jobst Waist High support garments. Over the next 2 months, I had stopped passing out and falling and the cognitive neurologist began to taper and ultimately discontinue all of the medications that had been given to me to raise my blood pressure. Presently, I only take one capsule a day to lower my blood pressure.
Just prior to diagnosis and for several months after diagnosis, I was sleeping 18 to 20 hours a day. Judy would wake me up to tell me that I needed to eat, brush my teeth or go to the bathroom. As the blood pressure returned to near normal levels, the amount of time that I was sleeping decreased.
There was relief in receiving a diagnosis; but, now I had to begin processing all that had happened during the 18 months.
Robert Bowles, Jr.