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Afraid and Relieved: How I Handled my PD Diagnosis

At the height of COVID, I started noticing some back pain and tremors in my legs. I initially thought it was a pinched nerve coupled with anxiety. But I knew something was off. After countless attempts to get answers, I finally got the diagnosis of Parkinson’s disease.

My initial reaction: fear, but with a sense of relief. I finally knew what I was facing, and it didn’t seem all that daunting. It wasn’t a mystery anymore.

The first question I asked my neurologist was, “How much is this going to shorten my life?” Shaking his head with a smile, he answered, “Not at all. I’ve had patients live for decades after they were diagnosed. Here’s information for the Houston Area Parkinson Society. Give them a call.” I left the appointment saying to myself, “This sucks – but I can manage.” 

PD isn’t the death sentence many may think. It’s something that we can live with as long as we have the right support.

The first thing I wondered was how this would change things at work, worried how my colleagues would react. Since I was 12 years old, I knew I wanted to be in video production, fascinated by television and telling stories. Needless to say, all my co-workers were extremely supportive, providing me with the tools I needed to keep working as a video producer. 

Over the past several years, I’ve surrounded myself with a strong support team. With two amazing neurologists (a general neurologist and a movement disorders specialist) working closely with me, I’ve been fortunate enough to gain two different perspectives on my condition. Both are helping me manage my medications and pushing me to continue with physical therapy, daily walks, and exercise, which have been incredibly beneficial in keeping my tremor severity at bay.

Regular physical activity has brought remarkable improvements to my life, enhancing my strength and fitness to the point where even my hairdresser has remarked on my increased confidence, underscoring the transformative impact of exercise.

Beyond exercise, StrivePD has been an integral part of my journey after hearing about the free app from my movement disorders neurologist. Tracking my meds and meals, and recording my tremor have improved my life immensely. What I love about the app is the ability to share all this info with my neurologists, who have used the data to tweak my dosages and timing. 

Most patients who go into a doctor’s visit rely on their perception of their symptoms, which is typically clouded by recency bias. As a patient, it can be really hard to give your physician an objective view of how you’ve been doing – whether things have been getting better or worse over the past six months. With StrivePD data, I have something I can verbally and visually share with my care team.

One interesting observation I've made thanks to StrivePD is the correlation between my exercise routine and the effectiveness of my medication in managing my tremors. I've noticed that my medication takes effect much faster when I engage in physical activity shortly after taking it. As a result, I've adjusted my schedule to ensure I exercise or take walks right after my medication, which has made a significant difference in the timing, typically shaving off about 30 to 45 minutes for the medication to take full effect. This change, influenced by insights from the StrivePD app, has been a significant adjustment in my routine. In addition to these exercise insights, I know when my tremor will be the worst during the day so that I can schedule the right activities at the right time.

PD is one of the most common neurological disorders in the U.S., and because of that, there are now more resources available than ever before, including the Houston Area Parkinson Society Women in PD group. This allows me to talk about solely women’s concerns, unique to us, both biologically and how PD will affect our roles in society. The group was so helpful when I was first diagnosed, helping me get my feet under me with this new lifestyle. 

When I run into PD patients, I give them this one piece of advice – communicate, communicate, communicate. Sometimes you want help solving a problem, like controlling your tremors. Other times, you just need someone to talk to about how you’ve been dealt a bad hand and the emotional rollercoaster you’re riding. Being transparent about the condition and voicing your thoughts makes things a lot easier.

Afraid and relieved. That’s how I started my journey of three years. Now that I’ve developed a routine and an incredible support system, I’m more positive than ever. I want to encourage people that there is hope – you're not a victim. You can attack, come out swinging, and still have a rich, fulfilling life. PD doesn't have to stand in your way.

Notable thanks to: 

  • My family, neighbors, and church who have rallied around me.
  • My best friend, Alice, who keeps me honest about how things are going without letting me slip into self-pity.
  • My husband of 32 years, Derek, who is my biggest cheerleader when I’m feeling strong and my safe harbor when I’m not.

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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