This month, the regular panelist group welcomed a guest panelist, Ben Stecher, to join them for a conversation about exercise, tools for tracking Parkinson’s symptoms, adaptive deep brain stimulation (DBS), and more. Diagnosed with Parkinson’s at 29, Ben chairs the patient advisory board at Rune Labs/Strive PD, recently participated in a clinical trial of adaptive DBS, and has co-authored two books with prominent movement disorder specialists.
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An audio version of this webinar will be available soon.
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SHOW NOTES
Exercise to live well
Time and time again, studies show that exercise is enormously beneficial for people with Parkinson’s. It can help minimize both motor and non-motor symptoms, increase your energy levels, help you sleep better, and improve your overall quality of life.
The panelists’ own experiences support these findings. Ben mentioned how exercise helps increase his ON times, and Kat and Chris shared how functional exercise–when you are active, but not engaging in exercise in a conventional sense–helps manage their symptoms.
When it comes to medications and exercise, it often takes some trial-and-error to discover what works best for you. A few tips and tricks the panelists shared include:
- Talk to your physician about experimenting with the timing of your doses based on when you like to exercise. For some people with Parkinson’s, taking a half-dose of carbidopa/levodopa right before a workout is helpful.
- Pay attention to meal times in relation to dosing and exercise. Taking your medications when you eat a big meal can keep them from being fully effective, which can impact your workout and overall well-being.
Kat Hill gets some functional exercise.
- Exercise comes in many forms, and chopping wood, painting a house, moving rocks, raking leaves all count. Get your body moving in whatever way feels good to you.
- Become your own expert and guide. Only you know what your Parkinson’s feels like, so pay attention to how exercise makes you feel and what tweaks you might make to get the most out of it.
Adaptive deep brain stimulation (DBS)
As a participant in Medtronic’s ongoing ADAPT-PD trial, Ben has firsthand experience about the benefits of adaptive DBS.
DBS is a surgical intervention that involves implanting small, thin wires into specific parts of the brain. These wires deliver electrical signals from a neurostimulator to areas of the brain affected by Parkinson’s. This stimulation helps control some of the cardinal motor symptoms of Parkinson’s, such as tremor, rigidity or stiffness, and bradykinesia (slowness).
Adaptive DBS refers to DBS systems that “adapt” the amount of stimulation at any given moment based on monitoring of activity in a person’s brain. Continuous DBS, on the other hand, refers to stimulation in which the device is implanted, programmed, and then runs 24/7.
Adaptive DBS, which is not yet available except through clinical trial participation, provides more personalized therapy to the user. You can think of it this way: many people continue taking some Parkinson’s medications even after deep brain stimulation (though often their medication regimen is reduced). If their medications are working and controlling their Parkinson’s symptoms adequately, they may not need as much stimulation from their device. When the medication effects wear off, more stimulation would likely be beneficial. In the continuous stimulation paradigm, the DBS device can’t make those adjustments. It operates the same way whether or not your symptoms are present or not. Adaptive DBS is different; within parameters set by a programmer, adaptive DBS adjusts the amount of stimulation according to your needs.
DBS programming
Although adaptive DBS is still undergoing trials, there are numerous other advancements in DBS that can help manage symptoms for many people with Parkinson’s. One that the panelists discussed is remote programming.
There are different ways you can think about what “remote programming” is. In one sense, remote programming means you are away from your clinician’s office, and you can use your controller to increase or decrease the settings for your device within a set of parameters determined by your clinician. This is a common feature of DBS systems. A more advanced remote programming platform allows a clinician who is in their office to connect to a person with Parkinson’s device while the person is in their own home. This allows a clinician to access all programming features of the device just like they would in an office setting.
DBS systems differ in their remote programming capabilities, and depending on your unique Parkinson’s, remote programming may not be important for you. What is important for people who have had DBS, regardless of the system, is that your programming is optimized. The panelists who have had DBS shared this advice about programming:
- When you’re exploring the possibility of getting DBS, ask the clinics you talk to about programming options. You should also ask who the programmer will be and whether you will have the same programmer throughout your time at that clinic or if the programmers rotate on a certain schedule.
- Your DBS programmer might be a neurologist or other medical doctor (MD), but a person doesn’t have to be an MD to be a programmer. The important thing is to find a programmer you connect with and trust.
- Work to build a strong relationship with your programmer.
- Consider your location when exploring DBS options. If you live in a more rural area, remote programming capabilities might be more important for you.
Symptom Tracking
Many people with Parkinson’s find that tracking their symptoms helps them better understand their unique experience of Parkinson’s. For others, tracking every symptom can create anxiety or become all-encompassing. Karen shared that this is true for her, saying that she feels happiest when she’s “the least obsessed with my symptoms.”
Kat, too, said that she doesn’t want her days to center around tracking symptoms, but she noted that when she is reaching a pivot point (such as when she is considering a medication change, DBS, Botox to help with dystonia, and so on), she tracks symptoms to be sure she can make informed decisions about her current needs. She said she calls it “prepping for a tune-up.”
The good news is that there are devices and apps that help you track symptoms without obsessing over symptoms. There are systems that can help track symptoms that you might not even notice at all. One such app is StrivePD, which is FDA-approved to track tremor and dyskinesia in people with Parkinson’s. StrivePD is available on Apple smartwatches that passively tracks your symptoms. All you have to do is wear the watch, and the app does the data collection for you. Then, your physician can use this data to make tailored decisions about your care.
Additional Resources
How to Exercise to Improve Parkinson’s Symptoms: The Science Behind Parkinson’s Exercise
[Webinar Recording] Advances in Deep Brain Stimulation: 2024 Edition
Keeping Fit Could Earn You a Smartwatch
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WANT MORE PRACTICAL ARTICLES LIKE THIS?
You can learn much more about living well with Parkinson’s today through our Every Victory Counts® suite of resources. Each manual is packed with up-to-date information about everything Parkinson’s. Click the link below to order your manual(s).
Thank you to our 2024 Gold Partner, AbbVie, and our Silver Partner, Mitsubishi Tanabe Pharma America, for their ongoing support of these must-have manuals. Additionally, we’d like to thank Barbara and Dale Ankenman, Abby and Ken Dawkins, Bonnie Gibbons, Irwin Narter, Lorraine and J Wilson, and Gail Gitin in loving memory of Gene Gitin for their generous donations that allow us to make these resources available and accessible to all.
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