On November 3, 2022, I went into full-on panic mode. I received the disheartening news that I had Parkinson’s disease (PD). While it’s only been nine months since my official diagnosis, I have been experiencing tremor and other movement problems well over the last five years. I would wake up stiff and rigid, finding it extremely difficult to get out of bed. If I was lucky, I could maybe walk up to 500 feet a day.
It wasn’t until last year I decided to see a specialist and was officially diagnosed. Part of me felt relief, while another part was terrified. As a retired sheriff’s deputy, motorcycle enthusiast, and avid gardener, I knew my life was going to be drastically different.
Being the self-starter that I am, soon after I was diagnosed my wife and I took a proactive step and looked into what to expect with PD and ways we can stave off this terrible disease. After doing extensive research, we ended up finding a program called Rock Steady Boxing (RSB) in Covington, Washington, which is just south of Seattle. In a nutshell, RSB is an exercise program specifically designed for PD patients to help us with walking, balance, and overall movement. Excited about this community, I started attending classes at RSB just a month after I was diagnosed.
For the last nine months, RSB’s impact on my symptoms has been enormous! All the coaches at RSB are extremely motivating, pushing all of us to be the best we can with what we’ve got. I’ve been going to RSB at least three times a week. Each of those days, I can walk up to three miles, no longer limited to just 500 feet. My body is much looser than before, and I no longer have the rigidity that I experienced back in November. My wife even tells me I’m standing straighter and my balance is better. My tremors are not even noticeable. To say that RSB changed my outlook on PD for the better is an understatement.
What is great about RSB is it is not just an exercise program, but also a supportive community allowing us to learn more about PD and the tools we have at our disposal. At one of our RSB meetings, I met a movement disorders neurologist who talked about an app called StrivePD, a free mobile app that many of her PD patients were using. In March, I decided to give it a shot. I’m not the most technologically savvy individual, but with StrivePD’s support, I was able to fully understand the best way I could use it to understand my Parkinson’s progression.
I’ve been using StrivePD for about six months, and what I love about StrivePD is I can use the app to help track my symptoms, physical activity, and medications. It is amazing that all my data is just passively collected. All I need to do is make sure I have my Apple Watch on my wrist and I’m good to go.
All of this data is shared with my neurologist, too. When I go into her office, she pulls up my StrivePD chart that lets her know when my symptoms are worse or on track when I’m taking my meds or exercising. She can directly correlate my symptoms, exercise, and timing of medications and change something, like my dosing schedule. StrivePD even helps motivate me to stay on course of exercise with RSB and sends reminders to take my meds.
Like most patients, having PD terrifies me. But if there is some way we can slow down progression, or maybe even reverse some of the movement problems, that’s a huge win in my book. Both RSB and StrivePD are empowering me to manage PD. I feel a bit more in control of my health. Every day I use these two things, it makes me a little less scared of my predicament. I’ve come to accept my PD and I’m doing what I can to live with it. But I’m not afraid anymore. I’m not embarrassed by it.
I’ve met the most amazing people in my RSB classes and have a newfound appreciation for how technologies like StrivePD are helping people just like me deal with this disease. My wife may not let me go up to the roof to clean the gutters anymore, but overall I feel better about who I am. I’m proud to walk tall and take this disease day by day.
I want to tell everyone who’s just been diagnosed with PD that it’s not the end of the world. There are support groups, apps, and opportunities out there to help make things more bearable. There’s no cure for PD yet, but if we can slow it down or stall it by any means necessary, then we’re winning.
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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