Saturday, March 16, 2013

Fascinating, Futuristic and Free

When I first noticed symptoms about 2 years ago, I was referred to a local neurologist and was diagnosed with Parkinson’s Disease. The doctor was someone that I had met socially, although I didn't realize it until I showed up in his office and recognized him. He is kind of a geeky guy who exhibited very poor bedside manner when informing me that I have an incurable illness. He also has some strange habits. Apparently, he is terrified of Carpal Tunnel Syndrome. He uses an exotic mouse/trackball gizmo that is ergonomically designed by space aliens. In addition, he doesn't type, preferring to use speech recognition software to complete his notes, which means he has to dictate every comma and period. He has a thick regional accent, so he often has to tell the software to erase a mistake and try again. It is extremely irritating to sit and listen to this. Over time, I grew to dislike him.

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.

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It seems that Dr. Dorsey is doing pioneering work in a new field, called Telemedicine. The reason my conference is free is because insurance companies won’t pay for Telemedicine. I asked Dr. Dorsey, “What if I lived in a rural area far from my doctor's office, and my condition had deteriorated to the point where driving a car was inadvisable? Wouldn't it be in the best interest of the insurance company to keep me at home and not risk lives?” He chuckled in agreement and suggested that I express those concerns to my insurance company.

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.

There are 5 parts to the test. Part One is the Voice Test: I have to say “Ahhhhhh” into the phone for about 15 seconds using one breath. Part Two is the Balance Test: I put the phone in my pocket and try to stand perfectly still for about 30 seconds. Part Three is the Gait Test: I put the phone in my pocket and walk 20 yards, turn and walk back. Part Four is the Dexterity Test: Two squares appear on the screen and I have to tap them alternately, maintaining a steady rhythm, for about 30 seconds. Part Five is the Reaction Test: A button appears on the screen at random intervals. I have to touch the button when it appears, and release it when it disappears.

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: