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Dealing with the Ups and Downs: A Care Partner’s Journey

It’s been 6.5 years since my wife and I started on the roller coaster known as Parkinson’s disease (PD). In 2016, Mary was diagnosed with PD. Like many, it was a while before we were confident she had the disease. We visited numerous physicians until she was able to meet a movement disorders specialist whose expertise allowed her to uniquely consider Mary’s symptoms and provide a tailored medication strategy to best fit her PD. 

Following her diagnosis, we began researching the complexities of the disease – from how it develops and its distinct characteristics to the types of care available to Mary. This is where we were first introduced to the Davis Phinney Foundation (DPF). DPF has been a tremendous source of  information, guidance and connections. Their focus on Living Well with Parkinson’s Today is aligned with our thinking about PD. The most important thing we learned was that PD is a diverse disease, where “one treatment strategy” does not fit all. With this knowledge, we knew we first needed to build a care team to help Mary (and me, as her Care Partner) through this journey. Mary has experienced many different aspects of PD, such as balance issues, depression/anxiety, and more recently cognitive decline. 

With the first member of our care team in place (Mary's movement disorders neurologist), we began to bring in individuals with expertise in physical therapy, occupational therapy and a cognitive behavior therapist (CBT) to help her navigate through bouts of depression and anxiety. My philosophy was if somebody out there would provide Mary with the best care possible, we would find them. Fortunately, our care team continues to do an extraordinary job in helping her navigate this terrible disease.

We also discovered early in the journey that exercise was one of the most beneficial treatment options for her. In 2019, we found an incredible exercise program at Rock Steady Boxing (RSB). RSB's mantra is “Fighting Back Against Parkinson’s.” This is a perfect saying describing how Mary and I have been battling the disease.

This one-of-a-kind exercise program helps patients not only with their physical symptoms but also provides a wealth of information on how to live with PD and a community atmosphere that offers tremendous emotional support. With the expert guidance of her RSB leader, the program has become an invaluable part of Mary’s care. Exercise is truly the great elixir against Parkinson’s.

Through Mary’s RSB program, we were introduced to a patient specialist working for Rune Labs, a technology company developing an app specifically created for PD patients. As a former head of a large software organization, I firmly believed health technology-enabled solutions should be part of every PD patient's journey. PD is a disease where understanding patient data is critical to planning daily activities.   

Rune Labs has created StrivePD, a free, comprehensive mobile app that syncs to the Apple Watch so people with PD can gain an entire view of their disease and be advocates for themselves. I love how this application plots tremors and movement issues, mapping them against medications and exercise. All of this data can be shared with your care team so they can see how treatments are working and whether therapy needs to be altered. We can give our physicians and therapists long-term, objective data so they can make the best care decisions for Mary. The wealth of data, which could never be captured by the naked eye, gives us amazingly detailed insights. I still remember showing the graphs on StrivePD to Mary’s movement disorders specialist and her eyes widening. Her specialist was so surprised to see Mary’s progression and symptom data all in one place. It really helped her understand how Mary was doing since her last visit. StrivePD has become a true everyday companion tool for us. 

Now that I’ve experienced the ebbs and flows of a PD Care Partner, I’m optimistic that, because of our friends, family, support groups, healthcare providers and advanced technologies, Mary will receive the best and most informed care possible. Our mantra continues to be “Parkinson's is not going to beat us!”

I also recently joined the DPF as an Ambassador. As a DPF Ambassador, I hope to continue to inform and support other PD patients and Care Partners, especially those who are beginning their journey. Being diagnosed with PD isn’t the end; it’s a new beginning. If you are open to becoming an advocate for your health and bringing loved ones along the journey, you can dramatically improve your life by taking action and embracing new tools like StrivePD that are helping to demystify this frustrating and mysterious disease.

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 and RSB coach for a personalized strategy. Download the StrivePD app on the Apple App Store today. 

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