Noticing shaking in my hand, I realized I was dealing with a problem that began in May 2023. Two years before that, I found I couldn’t run longer distances anymore. I now believe it was a prodromal expression of the disease. In September 2023, I was officially diagnosed with tremor-dominant PD, and my interest as a long-time scientist studying human and animal nutrition in relation to plants took a new turn.
I read what I could find in scientific papers and blogs on Parkinson’s, helping me to come to grips with what I might be able to do myself to slow the progression. I was convinced my PD was a body- or gut-first type and was fascinated by the promising results in recent studies with fecal transplants. As a first step in September, I had my gut microbiome analyzed and was diagnosed with a leaky gut phenotype. So I started to take a range of vitamins, probiotics and supplements that were advised in connection with gut-first PD, and also began exercising three times a week, taking on yoga, bootcamp, and tango!
To my daughter’s surprise, my initial reaction was relief that my diagnosis was not cancer, a disease to which I had already lost a brother and sister.Family and friends were much more worried, though, and initially viewed my condition through the stigma associated with advanced PD. I do worry how this new disease will affect my work as a researcher, but at least the tremor symptoms have been minor and are not interfering with my work or daily life. Living by the day has become my motto.
At 62, I considered early retirement, especially since my wife had already retired. And indeed I do worry a bit that if I wait too long that my current state might be wasted behind a laptop at work rather than being used to follow my long-term passions in art and renovating my house, which has foundations dating back to the 13th-14th century. This process has not crystallized yet.
While my first response to my diagnosis was some anxiety and dread, I was excited to discover that a novel technology, called StrivePD, was available and would allow me to take a proactive approach to Parkinson’s. I first heard about StrivePD November last year, and as a researcher, I was curious as to how a device that connects to the Apple Watch could provide objective data about my disease by recording not only tremor data but also relevant parameters (e.g., balance, walking speed, step length) from the Apple Health app.
Now having used StrivePD for seven months, I found it easy to use, with many options to record medication reminders, and other PD-relevant information into the app. It further provides hourly insights into tremor development throughout the day (about 23 hours, with 1 hour for charging the watch), with scrollable weekly, monthly and three-month overviews. I found this extremely helpful for understanding my own response to diet, sleep, exercise, and stress, as well as during my visits to my neurologist. It gave me a tool to objectively monitor my tremor levels and see what is working and what needs to be changed.
As someone deeply ingrained in life science research, I was interested in diving deeper into the data on how various interventions and events affected my tremor levels. The app offers an opportunity to comprehensively understand how exercise, food, or medication changes affect symptoms. One thing I appreciate about StrivePD is the ability to look at data both daily and as long term trends and understand when my tremors are manageable and when they get worse.
Parkinson's is so heterogeneous and can impact individuals in different ways. My focus on gut health took an additional turn when I visited India, where I gained interest in their diet, which is so incredibly rich in spices and a broad variety of beans. Both of these promote a healthier microbiome and may account for the lower incidence of PD in the country. So last December I changed my sweet bread breakfast to home-sprouted mung beans, chickpea hummus and hot spiced chutneys with some coconut cream. I have felt my constipation issues reduced a lot, which can be an issue for many PD patients.
I also began to prepare my own fermented water kefir drink in January and noticed on the StrivePD app a strong dip in my tremor levels stably going from three hours to just one hour per day for four weeks while not taking any medication yet. This seemed unusual and I contacted Rune Labs about this. With support from the StrivePD team, I received additional access to my data to conduct my own analysis by separating different tremor intensities and also looking at tremor proportions to see some deeper trends.
Averaging across multiple days helped to see longer time trends more clearly. It was surprising how I could easily associate these with diet, my work-week, medication, and stressful events. While not every patient may share my level of curiosity, this ignited a passion in me to explore the role of diet more thoroughly. I have also found a Dutch PD research group interested in exploring whether some of my observations can be generalized.
StrivePD empowers a person with PD (PwPD) like me to evaluate how various strategies can affect my Parkinson’s, providing the necessary tools and data to make informed decisions and adjustments along their journey. It also allowed me to see how treatments like levodopa altered the intensity of my tremor. This is important information to modify medication regimes.
My hope in the future is that more doctors will be open to using patient data from StrivePD to better manage their patient support and condition. The unique features of StrivePD provide transparent information about how things are progressing, allowing doctors to get a concise summary quickly without needing my subjective recollection. It can even expedite the appointment because the app can better summarize how some things have been going physically since the last visit than I could. It shows how objective data collection through an app can provide insights that memories alone can't.
I am looking forward to working with Rune Labs to help further advance the app. During our sessions together, I've shared specific suggestions on how the app could report data to provide additional insights into the disease. With the team’s help, I was able to download a more detailed dataset of my symptoms and analyze the information, creating my own graphs. This helped me gain an even deeper understanding of how my tremor is affected after stopping my medication. The StrivePD team's rapid progress has already made the tool truly helpful for all PD pathology types. My goal, along with their "explorers" beta testing group of PwPD, is to provide feedback that can be instrumental in improving the product, including the ability for individuals to download datasets and create their own graphs. Having this feature allowed me to feel even more prepared for my neurologist visit. We even discussed new ways to graph and display data on StrivePD to make it more actionable for patients like me.
It is critical to get StrivePD into the hands of more patients and have it widely accepted in the Parkinson’s community because both patients and doctors can use the wealth of data to help improve care.
About StrivePD:
StrivePD is the next generation of Parkinson’s care.
StrivePD is a free iOS disease management application — FDA-cleared on the Apple Watch — that passively collects tremor and dyskinesia data via Apple’s Movement Disorder API. Explore interactive charts to track your symptoms over time and understand how medications and physical activity impact you. Gain insights to guide your care journey, sharing data with your clinical specialists for a personalized strategy. Download the StrivePD app on the Apple App Store today.
Download the app on App Store today
