Have you ever left a follow-up appointment with the neurologist that felt unfinished? If you are having a bad day, it shows. But it may not be disease progression, it may just be a bad day.
It is hard to convey a true representation of “how we are doing” in one clinical visit. A clinical visit is like a preview — an edited version of ourselves. We do our best to highlight the positives and are not completely objective. So, how can our doctors get the unedited, full-length version of “how we are doing?”
How about a watch? Yes. It sounds odd, but it’s out there. It’s called the Personal KinetiGraph (PKG) watch. Recently, I enrolled in a study that evaluates how the watch affects a patient’s clinical care.
What is the PKG watch?
The PKG watch is a useful tool for people with Parkinson’s disease and their doctors. In addition to time, it provides alerts to ensure that medicines are taken as prescribed.
Over a period of several days, the PKG watch continuously records and stores data about symptoms such as tremor, bradykinesia, and dyskinesia. The data is then analyzed, and the results are sent to the doctor. Together, the person with Parkinson’s and their doctor can use this information to make adjustments to medication timing and dosages.
My experience with the PKG watch
For the first phase of the study, I wore the PKG watch 24 hours a day for six days. I did this three separate times and had three evaluations. Each time, I waited patiently for the “envelope” to appear on the watch. This alerted me to send the watch back to the lab. The data it had collected was on its way to be evaluated.
During the interim visits, I answered questions and performed tests that were similar to those used in the Unified Parkinson’s Disease Rating Scale. I felt I had done well. Therefore, I thought my results were straightforward. My medications were optimized, allowing me to manage my symptoms effectively. Boom — game over and I win! At least, I thought I did.
What did the data show?
I had a virtual 90-day follow-up visit at the end of the first phase. Just as we did during previous visits, we went through the questions and a series of physical tests. Again, I thought, “Yes, I’m good.” My preview went well.
It was time to review the unedited, full-length version. We reviewed data and charts detailing my bradykinesia, tremor, and dyskinesia.
As it has done for the last five years, my Parkinson’s threw a curveball. I was not expecting my bradykinesia results. They showed that my movements were slow, which was not a surprise. However, they also indicated that I was slower than the target level. That was the curveball — a swing and a miss! The objective and continuous data from the PKG watch had provided my doctor with information that I could not provide.
What came next?
Let me make this crystal clear: I am not a happy camper when Parkinson’s gets the upper hand. So, for the next phase, we agreed to adjust my medicine to increase its effectiveness. This meant moving a little faster to get my black bradykinesia line into the green “acceptable target range.”
My first follow-up visit was promising. We discussed how I felt throughout the day with the medication changes. I noticed an improvement overall. However, I still felt that it took me too long to get moving in the morning and I slowed down again later in the evening.
But what did the report show? My little black bradykinesia line fluctuated in and out of the acceptable target range, except at the beginning of the day and the end of the day. During those times, it was below the target range. This meant the report was consistent with my observations.
The medicine change helped my bradykinesia, but there was room for improvement. My medications for the morning and evening were adjusted. I made another attempt with the watch. A review of my final PKG reports last week indicated my medications are now optimized. I am in the green zone!
Parkinson’s can keep throwing me curveballs, but I’ll keep swinging. I may not knock it out of the park, but I will get a hit for Parkinson’s research, and that is the win.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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