StrivePD: Using Wearable Devices to Help You Live Well Today

11 April 2024

Living well with Parkinson’s often requires becoming adept at adjusting to changing circumstances. So many things can influence your symptoms, medication efficacy, and other aspects of your quality of life.

To help understand these changes, many people with Parkinson’s choose to track aspects of life with Parkinson’s. Some track to document details about ON and OFF times; others track to monitor how exercise and diet impact symptom intensity. We’ve heard of people tracking just about any aspect of Parkinson’s imaginable to help them live well today.

The Trouble with Conventional Tracking

While tracking your experience of Parkinson’s may help you understand patterns in your life, manually keeping record of all the relevant details of life with Parkinson’s can be time-consuming and burdensome. In addition to the continual attention that manual tracking takes, most ways people manually track their experience involve consistently having a notebook or digital document handy—and this just isn’t always feasible.

Additionally, we hear from many people that they put months of effort into tracking parts of their experience, but when they finally get time with their care team, the team often does not have time to read through pages of handwritten notes or spreadsheet data. Even the most dedicated trackers may find that the benefits don’t outweigh the costs.

A NEW ERA: TRACKING HELP FROM DIGITAL HEALTH TOOLS

Fortunately, in recent years there have been improvements in technological tools to help you track your Parkinson’s experience. One of the most helpful and versatile tools is StrivePD, developed by Rune Labs.

STRIVEPD: OVERVIEW

StrivePD is HIPPA-compliant software that uses an iPhone and Apple watch to help people with Parkinson’s track their experience. StrivePD has received FDA clearance to use a feature of the Apple Watch called the “movement disorder manager API” to automatically record data about Parkinson’s tremor and dyskinesia.

StrivePD’s automated tracking provides far more data than manual tracking, and the only effort it requires after the initial set-up is that you wear a watch. The software also includes manual tracking features designed to require minimal effort; some manual data can even be input by voice command.

StrivePD allows you to track four big categories of data about living with Parkinson’s. The program will:

  • Automatically record data from your Apple Watch about tremors, dyskinesia, sleep patterns, mobility, gait, falls, and more
  • Record data you self-report about medication timings, symptoms, and other aspects of Parkinson’s
  • Track certain DBS settings to understand the effect the settings have on your symptoms
  • Maintain a record of your clinical history, including changes to your medication

“Every time someone with Parkinson’s visits their neurological team, there is difficulty in trying to answer that simple question: How have you been feeling since the last visit? There is just so much information that needs to be conveyed.

“Enter StrivePD, which provides a summary using real world data that often does a better job of answering that very question than even I, a fairly knowledgeable patient, can. With StrivePD’s summary reports (whether it be their tremor and dyskinesia data to their gait summaries to their medication data) I am able to present the information in a much more actionable way than I could before.” –Benjamin Stecher, author, advocate, and person with Parkinson’s (diagnosed in 2013, at age 29)

WHAT YOU CAN DO WITH STRIVEPD

StrivePD Screenshots

While some of StrivePD’s features are automated—like recording when you are experiencing tremor or dyskinesia, and incorporating other metrics recorded by your Apple Watch—StrivePD also has many customizable features involving manual data entry through the app on your phone or by voice command.

With StrivePD you can:

  • Record when you take your medications and supplements, either in real-time, or automatically according to a schedule (you have the ability to modify entries if you take a dose off-schedule).
  • Receive reminders when it’s time for your medication and establish recurring reminders in case you can’t take a dose on time.
  • View reports at intervals of your choosing for a wide range of information, including frequency of symptoms, missed medication doses, and exercise data recorded by your watch.
  • Incorporate other data from Apple Watch sensors into your reports, including data about sleep, gait, and more.
  • Log symptoms, including mood-based symptoms.
  • Log treatment side effects, including when they occur, how severe they are, and how long they last.
  • Log other influences on your well-being, including food and beverage intake, periods of rest, and other items you wish to track.
  • Set reminders to charge your deep brain stimulator battery.

HOW STRIVEPD CAN HELP YOU LIVE WELL TODAY

StrivePD is designed to help you and your team optimize your management of Parkinson’s with the least effort.

MORE DATA, BETTER CARE

StrivePD is such a powerful tool because of is its ability to produce reports that track symptoms of Parkinson’s along with other factors you choose. These reports put information about progression and treatment efficacy at your fingertips. Critically, these custom reports incorporate long- and short-term data about your experience into easy-to-read formats to share with members of your care team.

Davis Phinney Foundation care partner Ambassador Dennis Tinley and his wife Mary, who was diagnosed with Parkinson’s in 2017, are avid users of StrivePD. Dennis says when they started tracking symptoms, their movement disorder specialist was uncertain about the data they’d manually collected. For the next visit, they’d been using StrivePD, and the reaction was different.

Dennis says, “For the next visit, we brought a print out of the report from Strive, and I said, ‘Look, Mary started this new drug here, on this day, and look what happened to her tremor two weeks later.’ And the doctor’s eyes just opened wide, like she was thinking, ‘Wow, that’s pretty cool.'”

Consider sharing these reports with members of your team you might not immediately think of, like your Rock Steady Boxing coach, for example. StrivePD helps your coaches and other trainers tune your exercise routine. In fact, one of the first people to encourage Dennis and Mary to try StrivePD was Mary’s Rock Steady Boxing coach:

“Any of the coach’s clients can give him permission to see their data, and if he has a class coming up and he knows one of his clients has been struggling in class, he can look up their StrivePD data and see if there is anything it tells him, for example whether someone hasn’t been taking their medications on time. He uses the data to find clues as to what is going on that he should know about as an instructor.” –Dennis Tinley

IMPROVE UNDERSTANDING OF OFF TIME

StrivePD is especially useful in tracking OFF time. Because tremor is such a common part of living with Parkinson’s, it can be difficult to remember to note every time you experience it. StrivePD takes this off your plate by automatically recording data about your motor fluctuations.

Not only can this help you recognize patterns in your life, it can also help you and your care team streamline medication adjustments and inform decisions about advanced therapies like deep brain stimulation (DBS).

OPTIMIZE DBS MORE EFFICIENTLY

If you already have DBS, StrivePD’s automatic tremor and dyskinesia tracking allows you to provide your device programmer with data about your symptoms, which helps understand how well your DBS settings are working for you.

That StrivePD can also track certain DBS settings helps to further streamline your programming adjustments by providing you and your care team with clear data about how changes to your DBS settings impact your symptoms.

A TOOL TO HELP WITH RESEARCH

StrivePD is being used in innovative clinical trials for exciting therapies under development, including studies involving cell replacement therapy from Aspen Neuroscience and BlueRock Therapeutics.

The idea inspiring these collaborations could apply to other trials, too: StrivePD can help improve enrollment and expand the data available to researchers as they evaluate results of clinical trials.

PERSONALIZED CARE IS THE FUTURE: STRIVEPD CAN HELP US GET THERE FASTERA Physician’s Perspective on StrivePD

Living with Parkinson’s is deeply personal and unique. From gene and cell-replacement therapies, to enhancing our understanding of subtypes of Parkinson’s, the future of Parkinson’s treatment will be personal, too.

StrivePD aims to expedite the development of a more personalized approach to Parkinson’s care by improving the process of collecting data describing your personal experience. With StrivePD, the future is now: The program provides you and your care team with clear, concise reports describing many aspects of your experience of Parkinson’s.

Critically, Rune Labs—the company that operates StrivePD—continually seeks and responds to feedback from people with Parkinson’s. The software was originally designed by Aura Oslapas, who lives with Parkinson’s, and the company has an advisory board of people living with Parkinson’s.

Rune Labs also engages in outreach to movement disorder specialists across the United States to expand the number of specialists who understand the value of this software and how to get the most out of it.

The StrivePD team also partners with health systems and academic centers across the United States. For example, if you are receiving your Parkinson’s care through Kaiser Permanente in California, you may be eligible to participate in a coordinated care management pilot program through your movement disorder specialist.

GETTING STARTED WITH STRIVEPD IS EASY

Understanding and communicating about your experience is part of living well with Parkinson’s, and with digital health technology like StrivePD, this is easier than ever.

To access StrivePD and see how it can simplify collecting data to help you manage Parkinson’s, download the app for free in the iOS App Store on your phone. For more information, you can also visit the StrivePD user guide or email support@runelabs.io.

ADDITIONAL RESOURCES

Background on the Apple System Used by StrivePD

News Story About Collaboration Between Rune and Medtronic

StrivePD Overview Webinar

Interview with Aura Oslapas and Brian Pepin, CEO of Rune Labs

Blog Post from Chair of Rune Labs’ Patient Advisory Board

Rune Labs’ Blog: Perspectives from People with Parkinson’s

LSVT and StrivePD

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