Parkinson’s isn’t static. Symptoms shift through the day, sometimes bringing uncertainty and second-guessing. I may wake up feeling steady, ready to take on the world, but by midday, symptoms can deteriorate without warning and with no clear explanation. It’s a struggle that can be incredibly frustrating.
I’ve been living with Parkinson’s for the last five years, but I haven’t let it define who I am or what I can do, especially now that there are support systems that make each day easier. I’ve adapted, but haven’t stopped living, continuing to teach, working as a video editor, spending time with my husband, and staying connected to what matters most. And the reason for this is that I’ve remained actively engaged in my own care.
One of the tools that has helped me along my journey since the beginning is StrivePD, and with their latest StrivePD Guardian, I’ve come to better understand what’s happening in my body and what to do next.
Many people with Parkinson’s tend to ask themselves, “What happened in the middle of the day to make my symptoms worse?” or “Is what I’m experiencing right now normal?” Maybe it was the time I took my medication. Or maybe it was the lack of sleep I experienced the night before. There’s just no way to connect these dots.
This lack of knowing is maddening, causing constant levels of uncertainty or unnecessary overreactions.
Even more frustrating, there is rarely an opportunity to get answers to these questions when you want them most. Your physician may not be able to respond immediately, or the inquiries you’ve typed into a search engine are generic answers that don’t apply to your condition. Plus, the challenge of fully describing your experiences and daily patterns, all from your own memory, whether to your provider or Google, is nearly impossible.
What I needed was something that could address these problems and give guidance that was relevant to my own personal journey. This is why I’m a huge advocate for Rune Labs and what they’ve provided with StrivePD Guardian.
I’ve been using StrivePD for many years, and I love how I see patterns in my daily symptoms. By continuously gathering data from my Apple Watch and my own input, StrivePD gives me insights into my symptoms and medication strategy that would be impossible to gather manually or from my own memory. During my clinical visits, I have been able to take all this info and work closely with my neurologist to tailor my treatments so they are the most optimized.
Now, Rune has implemented a new layer, introducing StrivePD Guardian. The daily AI companion has been tremendous, giving me insights and guidance in a conversational way. Rather than just tracking my symptoms, I have an interactive support system that is personalized to my needs. It takes all of my info (my tremors, dyskinesia, mobility, sleep patterns, medication timing, and journaling notes) and uses that to help me make connections in real time that I wouldn’t otherwise notice.
Using a natural interface, I can ask it about my symptoms, medications, and changes I’m experiencing, and it will provide me with clear, contextual explanations. I don’t use StrivePD Guardian in place of my doctor or for serious medical concerns, but it has been helpful for better understanding day-to-day questions and organizing what I want to discuss before an appointment.
For example, after changes to my Parkinson’s medications during DBS programming, I noticed my blood pressure was creeping up. I asked StrivePD Guardian whether reducing certain medications could affect blood pressure. It explained that yes, those changes could play a role, and that what I might be seeing was not necessarily a brand-new problem, but possibly an underlying blood pressure issue becoming more noticeable.
Another time, I was feeling impatient after a medication adjustment related to my DBS programming. I was tempted to message my doctor. Instead, I logged in Guardian how long it typically takes for the body to adjust after that kind of change. It told me that four to six weeks can be typical, and that based on my timing, I was still right in the middle of that window.
It has reduced my anxiety and prevented unnecessary worry. I can organize my symptoms and clarify my concerns, using this to have better interactions with my clinical care team so they can make better decisions about my treatments, especially now that I’ve been using DBS for my Parkinson’s.
Parkinson’s affects every part of your life, not just at clinic visits. There’s a gap between appointments, and we need tools that empower us to actively manage care. In many ways, it feels a little like having a care team in my pocket - a knowledgeable resource I can turn to whenever questions come up between visits.
After using StrivePD Guardian, I’m not second-guessing myself. I have more control and confidence in understanding my patterns and getting the answers I need so I can reduce my worry.
It’s hard when you feel isolated and don’t have access to the support or guidance you need at the moment. StrivePD Guardian helps fill those gaps when it matters most. Parkinson's may be unpredictable, but with the right tools, I don't have to be. For the first time in five years, I wake up ready to take on the day, and if things shift by midday, I know I won't be facing it alone.
