I began to suspect that I was not receiving topnotch care when I experienced a fainting episode on one medication he prescribed for me, and he replaced it with one that was ridiculously expensive. I knew from my research that Levodopa was the most effective medication for my illness, and it was cheap. When I asked him about it, he said that the body gradually adapts to Levodopa, so that it becomes less effective over time. For that reason, he wanted to delay prescribing that drug until nothing else worked. It sounded right, but I had to ask myself if an effective drug is cheap, why is a less effective drug so expensive?
At the urging of my wife, I called Johns Hopkins University Hospital, a world-renowned research hospital, and asked to speak to someone in the Movement Disorders division. Of course, I got an answering machine. I explained my situation and asked if there was a physician on staff with whom I could consult. I was perfectly willing to fly up to Baltimore from my home in Florida if it meant that I could talk to someone that I felt was competent.
Later, someone called me back and asked if I would like to consult with Dr. Ray Dorsey, the Director of the Johns Hopkins Parkinson's Disease and Movement Disorders Center. Then she told me that the consultation is free, and conducted via webcam. I could hardly believe what I was hearing. The Director of the whole department? Free? Using a webcam? No travel involved?
I had my local neurologist fax my records to Dr. Dorsey’s office. We scheduled the meeting, and I met online with Dr. Dorsey.
He had me perform a few simple movement exercises on camera while he observed, and then gave me several recommendations that made my local neurologist seem pretty incompetent. First, he recommended a medication that is one tenth the cost of the expensive medication I was currently taking. Second, he directly contradicted my local neurologist on the use of Levodopa. Dr. Dorsey said that the body does not adapt to Levodopa; rather, the disease merely progresses beneath it, requiring heavier doses over time.
He couldn't prescribe the drugs for me, because as far as my insurance company was concerned, we had never formed a valid doctor-patient relationship. However, he did write me a letter with his recommendations and I showed it to my local General Practitioner, who wrote the prescriptions.
I asked Doctor Dorsey if there were any research studies in which I could participate. He told me about a fascinating new program that was just getting started. An engineer at MIT was developing a smartphone app that consisted of a series of tests. Participants complete the tests four times a day for a month, and the data is collected to reveal the progress of the disease.
Best of all, I get to consult with Dr. Dorsey four more times during the program. I enthusiastically agreed to participate. They were looking for 10 Parkinson’s patients and 10 “control” subjects. I talked to my co-workers and two of them agreed to take part.
A few weeks ago, they sent me three cell phones. They are disabled except for Wi-Fi capability, and have two apps: One is the Test app, and one is the app that submits the collected data over Wi-Fi.
The test takes about five minutes. I may not see any benefit from it personally, but if the data it collects can be helpful in future research, then I want to be a part of it.
If you want to read more about Dr. Dorsey and his work, try these links: