Rune Labs is committed to improving the lives of those with Parkinson’s disease and other neurodegenerative conditions – but what would that look like in the real world? We sat down with Amanda Hare, Rune Labs’ Senior Clinical Specialist and a nurse practitioner, to learn more about the relationship between people with Parkinson’s and their clinicians, the problems with care today, and how a tool like StrivePD could change things for the better.
Q: Can you tell us a little about your background? How did you end up at Rune Labs?
A: I’ve been in neurology for nearly two decades. I got my start as a bedside nurse at a level one trauma center and neuro ICU in South Carolina. After earning my doctorate of nurse practicing in adult gerontology, I worked at a private neurology clinic in Florida where I saw patients across the neurological disease spectrum, including those with Parkinson’s disease, Alzheimer’s disease, multiple sclerosis, and chronic migraines. I realized, after about a year, that I wanted to specialize in movement disorders, and I moved back to South Carolina to work at a Center of Excellence. I spent four years working with mostly Parkinson’s disease patients – and I fell in love with helping them. I would see a dozen patients a day, and about 10 patients a week with deep brain stimulation (DBS) device implants. I’m really passionate about helping people with Parkinson’s disease because they often don’t have a lot of hope after they’re diagnosed. It’s a chronic, lifelong condition that progressively gets worse, but right now, there’s no way to delay the disease. I want to be able to help these patients as best as I can, which is why I joined Rune Labs in September. I think StrivePD can make a world of difference on the quality of life of those with Parkinson’s.
Q: What makes it so difficult to give proper care to people with Parkinson’s disease (PwPD)?
A: One of the main problems is that Parkinson’s disease is incredibly complex with a wide range of symptoms, so it can be difficult for patients to know whether what they’re feeling is due to the disease, and how to communicate these symptoms to their doctor. Parkinson’s affects your heart and blood pressure, it affects your gastrointestinal system, it affects your sleep patterns and your mood. There are many layers to the disease that are constantly fluctuating, which can be confusing to communicate or distinguish from medication side effects. Right now, doctors are completely dependent on PwPD to alert them if something is wrong, and to explain the problem and their symptoms in detail. But relying on a patient’s memory is an inefficient way to provide care. Sometimes, PwPD can mix up their tremor and dyskinesia symptoms, but these are treated in very different ways. If a patient reports they’re experiencing an increase in tremors, but in reality, it’s dyskinesia, the doctor has no way of knowing until several days later, when the prescribed adjustment in treatment has only made symptoms worse. Another example is blood pressure. If a PwPD says they’re feeling weak and fatigued, their doctor might conclude, based on that information, that the patient isn’t sleeping well due to disease symptoms and recommend a change in treatment to help the patient get more restful sleep. In actuality, the problem could be low blood pressure caused by medication. Without clear, quantifiable data on symptoms, treating Parkinson’s often turns into a guess-and-check game where no one wins. Patients can struggle for weeks until the root of the problem is discovered and treated.
Q: When you were at the movement disorders center, what were some of the problems and inefficiencies you noticed with how medications were prescribed and titrated?
A: There are currently no medications that can cure Parkinson’s disease, or slow its progression. One drug, carbidopa-levodopa, can help PwPD manage their tremor and dyskinesia symptoms, and about 98% of patients are on this combo. There is also a controlled extended-release formulation of carbidopa-levodopa, called Rytary, which helps patients reduce the number of times per day PwPD take their medication, from up to 12 doses a day to around three or four. While there are benefits to Rytary, transitioning a patient on to the new medication can be a lengthy and fraught process. Standard carbidopa-levodopa gives patients an immediate spike in dopamine that will sharply decline after a short time, resulting in high peaks and low valleys of dopamine multiple times per day. Rytary, however, provides a more gradual, middle ground and constant release of dopamine. Figuring out the right dosage to help with each patient’s specific symptoms can take weeks to get right, and this process is exacerbated because of poor communication channels between PwPD and their doctor. Often, they’ll speak over the phone with a nurse first, who will then share their notes with the doctor. It can take several days for the doctor to review the notes, adjust a patient’s dosage, and for the patient to feel relief – a process that will have to be repeated multiple times before the PwPD and their doctor finally land on the right regimen. However, each delay can contribute to low adherence. The longer a patient feels like they’re not benefitting from a medication, the more likely they’ll stop taking it.
Q: How could StrivePD improve how doctors prescribe and switch medications?
A: StrivePD makes it possible for doctors to see objective symptom data in real-time, potentially cutting weeks off the process of switching a patient to a new medication like Rytary. Thanks to the Apple Watch technology connected to StrivePD, the web portal shows the level of tremor or dyskinesia a PwPD experiences throughout the day and makes it much easier to visualize whether their symptoms are improving or declining – without having to wait to hear from the patient themselves, and without having to rely on the patient to describe their symptoms accurately. And based on these data points, a doctor can adjust the medication as needed. Effectively, StrivePD shifts the burden of care off PwPD and into the hands of doctors – where it should be. A doctor can look at the web portal, assess the symptoms, and reach out to the patient first, getting ahead of any potential problems and streamlining the care process. StrivePD can help patients receive quicker, more accurate treatment.
Q: How would PwPD with deep brain stimulation (DBS) devices benefit from incorporating StrivePD into their care?
A: Deep brain stimulation can be a highly effective treatment option for PwPD, but unfortunately it usually takes six to nine months to optimize the stimulation settings. Part of the reason is doctors have to balance changes in stimulation with changes in medication to ensure that both tremors and dyskinesia, along with any other undesirable symptoms, are treated equally. Also, having a DBS device implanted is a major surgery and can affect symptoms in ways they had never previously experienced. I treated one patient who was convinced that there was a problem with his DBS device because he felt anxious all the time, to the point where he was going to the emergency room because of his panic attacks. In the end, there was no problem with his DBS device. He had been struggling with his disease for a long time and was so overcome with anxiety about whether the DBS device would work, that he was getting in the way of his own treatment. Once I recognized the root of his anxiety and helped treat those symptoms first, and recalibrated the DBS device afterwards, it was like a new man – he was able to spend more time with his grandchildren and even went on vacation with his wife. This is one area where I think wearable technology can help guide patient care, because it allows doctors to see what’s physically happening with patients and link that back to patient-reported symptom and medication logs, plus the electrophysiological brain data collected by the DBS device. If a person is struggling with their Parkinson’s symptoms after receiving a DBS implant, their doctor can look at the StrivePD web portal and examine their tremors and dyskinesia in relation to medication timing as well as their local field potentials, and then either adjust their stimulation or medication – a delicate balance, because these two treatment options don’t do the same thing. StrivePD equips care providers with the necessary patient-specific information to make precise care decisions, with confidence. The patient-facing app also makes it easier for patients to keep track of and monitor their own symptoms in between doctor visits. If they begin experiencing a specific symptom they want to bring up to their doctor, StrivePD can help them log each instance so when it’s time for their next appointment, they have all the relevant information at their fingertips. If we can optimize the balance between stimulation and medication based on brain and motor data, we can cut the time it takes to optimize a patient’s treatment regimen in half, overall improving their quality of life.
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