Many people track aspects of their experience living with Parkinson’s. Sometimes, this is done at the recommendation of a physician or other care team member; for example, to track ON-Off fluctuations. Other times, people track their experience for personal reasons to develop a sense of what activities make their symptoms better or worse.
What does tracking Parkinson’s involve?
Tracking your experience of Parkinson’s can involve many things. Two of the most common items to track are medication and symptoms. This information is helpful when considering medication adjustments.
Other aspects of living with Parkinson’s you might self-track include:
- When and what you eat
- How much water you drink
- Your sleep patterns
- Your exercise routine and how you feel before and after exercising
- When new symptoms start
- When symptoms change
The more data points you have, the more impact you can have on your quality of life. For example, some people’s symptoms are less problematic when they feel hot or cold, so tracking how weather trends affect symptoms is helpful. For others, tracking how screen time affects sleep may be the most important thing to track.
Different approaches for different goals
Tracking your experience with Parkinson’s will differ depending on your goal(s). For example, when tracking your experience of ON-OFF fluctuations, the minimum information you’d want to track is:
- When you take your medications
- When your medication kicks in
- When your medication starts wearing off
In contrast, if you are trying to track how exercise affects your symptoms, you may want to collect:
- Day, time, and type of exercise
- How you feel before exercise
- How you feel right after exercise
- How you feel 12-24 hours after you exercise
The Core Challenge
Finding the right balance of time spent collecting information and usefulness of the information you collect is the core challenge of tracking your own experience of Parkinson’s.
Try to collect information from which you can draw a conclusion or take action. For example, if you want to track your OFF times, you will have more complete information if you include information about when you eat in addition to the three items above. This is because the timing and type of food intake can affect medication absorption. Be careful, however, to avoid tracking too much information. Becoming addicted to numbers can negatively impact your state of mind and quality of life.
Dr. Sara Rigarre, a researcher who lives with Parkinson’s, offered some tips for tracking Parkinson’s in her presentation at the World Parkinson Congress (WPC) in 2023.
Cons of Tracking Your Parkinson’s Experience
Dr. Rigarre warns that tracking is hard. Even tracking something as simple as when you take medication or experience symptoms can become tedious after a few days.
Other cons of tracking your Parkinson’s experience include the risk of:
- Focusing on Parkinson’s instead of on living your life
- Information overload at doctor appointments
- Conflating data and drawing false conclusions
This last risk is significant because there is so much about Parkinson’s that we don’t yet know. Although it may be tempting to draw conclusions about what worsens or slows progression based on how you feel after taking a certain action, it’s important to keep in mind that short-term observations may not be meaningful over the duration of your life with Parkinson’s.
Pros of Tracking Your Parkinson’s Experience
That said, in the proper amounts, tracking your symptoms can help you and your care team. Tracking may help you:
- Make informed decisions about your care plan
- Recognize new and changing symptoms
- Be proactive in addressing new issues before they become problems
- Feel productive
Other Tips for Tracking
There are many ways you can track details of your life with Parkinson’s. The tools you use and data you collect depends on your reason for tracking.
Tools that can help
Pencil and Paper
In her presentation at WPC, Dr. Riggare described how she uses pencil and paper to create charts for tracking the timing and efficacy of her medication dosing. There are many other ways to document using pencil and paper, but the key is to have a system that is easy for you to use and understand.
Additionally, here are two links for worksheets that can help you with tracking your experience or provide ideas for ways you might develop your own ways to track your experience: our Current Symptoms Summary worksheet and our Symptoms and Menstrual Cycle Tracker. We also have other worksheets and checklists that can help you track other aspects of your experience and prepare for appointments.
Smartphone and Web-based Applications
There are multiple smartphone applications to track your symptoms and experiences. These include:
- APDA symptom tracker
- APDA Healthcare Communication Graph
- My Moves Matter
- Parkinson’s Well-Being Map
- Strive PD from Rune Labs
In addition to these resources, there are also numerous food diary applications that can help you track your diet independently of Parkinson’s. As with all applications, be mindful of your personal privacy concerns. For optimal privacy, pencil and paper or a spreadsheet you personally design are the best options.
Smartwatches and Other Exercise Trackers
Some of the resources above have associated smartwatch applications, which can make collecting data easier.
However, even the basic functions of most smart watches—collecting step counts, sleep data, and heart rate information—can help you understand your symptoms and general experience of living with Parkinson’s. Notably, studies have shown that increasing step count can improve quality of life and decrease risks associated with Parkinson’s, including risk of developing dementia. Note, however, that if your gait is significantly affected, your step count may be less accurate.
Some smartwatches can also help you by setting alarms to remind you to stay hydrated, which aids with medication absorption and management of neurogenic orthostatic hypotension. Exercise monitoring and the scheduling feature of many smartwatches makes these devices even more useful. Some advanced devices can even provide basic gait analysis data, including information about how long each step is on the ground while you walk.
A Conversation with Your Care Team
In a 2018 article about self-initiated tracking, Maria Hägglund and Sara Riggare wrote:
Symptom tracking holds great promise in the field of precision medicine and more work is needed to develop this field. If done right, technology has the potential to improve the understanding of PD from the perspective of all stakeholders. A major challenge when it comes to addressing the needs and wishes of all stakeholders is that the views of clinicians and researchers regarding what is important in order to help People with Parkinson’s are often different from what People with Parkinson’s consider most important.
In the interest of collecting useful data and having a strong relationship with your care team, talk to your Parkinson’s care team to get their input about your tracking plans. They may have recommendations or other thoughts worth considering.
To Track or Not to Track
Whether or not you track your experience is a decision best made with clear goals in mind. Tracking is taxing, so it’s important that you get more out of it than you give.
If you decide to track your symptoms in some aspect of your life with Parkinson’s, do so in the simplest way you can without missing important data points. That may mean using a spreadsheet on your computer or a simple journal or calendar where you write down times. Conversely, if you have a smartphone or smartwatch, you may want to set it up so it automatically collects data.
One of the main benefits of tracking your experience is that doing so provides a much more comprehensive picture of your experience and progression than does intermittent visits to your doctor. The utility of this depends on the quality of the information you collect, so if you choose to track your experience, be sure to do so in a way you can maintain without burdening yourself or your care partner.
Self-tracking can be empowering and give you something to do every day to improve your life. This alone is reason enough for some people to track their experience of living with Parkinson’s. Maximize this benefit by following Dr. Riggare’s advice from her top five lessons from years of self-tracking: The context of the data you collect is key to accurate interpretation of the data; focus your efforts on collecting data providing actionable insights.