Ask Us Anything About… Parkinson’s Treatments

Description – The video begins inside a room that includes large screen on the wall that has the Penn State Health Milton S. Hershey Medical Center logo. Two individuals are standing in front of a screen. Standing from left to right is Dr. Sol De Jesus, co-director of the Penn State Deep Brain Stimulation program and Scott Gilbert

Scott Gilbert – Ask Us Anything About Parkinson’s Treatments. I’m Scott Gilbert [assumed spelling]. Approximately one million Americans currently live with Parkinson’s disease, an illness for which there is no cure. In fact, there’s really no way to even slow the progression of symptoms. But there are many ways to treat those symptoms as they come up. And we’re going to be talking about some of those ways today with Dr. Sol De Jesus. She’s a neurologist who specializes in movement disorders here at Penn State Health. Dr. De Jesus thank you for being here.

Dr. Sol De Jesus – Thank you for having me today.

Scott Gilbert – Let’s talk about some of those symptoms, especially the early stage versus late stage symptoms of Parkinson’s disease. We all think about tremor as being a main symptom. But it’s about more than that, isn’t it?

Dr. Sol De Jesus – It is. There are both non-motor and motor symptoms in Parkinson’s disease. What we concentrate on in terms of the clinical diagnosis are four cardinal features or motor features. The patients may have one or they may have all of them. The main one that we think about is a slowness in movement, a slowness in that automated type of movement that you can have. And that can be disabling for patients. At one period they can be moving regularly, and at another time they can slow down. Another feature that we think about is tremor. About 70 percent of patients with Parkinson’s can have what’s called a rest tremor involving a hand or a leg when it initially starts. Over time it moves to the other side of the body. So it initially can start on one side, and eventually involve the other side over time as the disease progresses in terms of tremors and other symptoms. Another third feature is stiffness or a tightness in the muscles. And the last one has to do with balance and postural instability. And, again, patients may have one or more of those features over time. And they can have non- motor features that include speech, problems with memory and recalling words, issues with mood changes, depression, anxiety. Later on in the disease some individuals can have hallucinations or psychosis with their disorder. But not everyone has the same symptoms. It’s variable between patients.

Scott Gilbert – When it comes to diagnosis early on is it based solely on symptoms, or are there additional tests, you can run scans, that type of thing?

Dr. Sol De Jesus – The diagnosis is a clinical diagnosis. So you will see your neurologist or your movement disorder neurologist. And they’ll have you do a couple of things in the clinic to examine and find these features that we’ve talked about. There are studies that can be supportive of your diagnosis, but they’re not definitive. And so that would be like a DAT-SPECT scan which looks for changes in the level of dopamine in the brain which is the substance that is reduced in Parkinson’s disease. But not everyone needs to get that scan to make the diagnosis. Usually the neurologist can make it in the clinic in an appointment visit.

Scott Gilbert – You’re watching Ask Us Anything About Parkinson’s Treatments from Penn State Health. I’m Scott Gilbert along with Dr. Sol De Jesus. We welcome your questions whether you’re watching this video now or after the fact on playback. Feel free to add those questions to the comment field, and we’ll pose them here to Dr. De Jesus. So let us know what your questions are. Feel free to share this post, too. If you find the information helpful we can get it out to more people that way. What do we know, Dr. De Jesus, about the causes of Parkinson’s disease and what don’t we know?

Dr. Sol De Jesus – The majority of cases are what we call idiopathic so there’s not a clear cause that we can pinpoint to that leads to the disease. There are some genetic forms of Parkinson’s where there’s been a gene identified that’s been mutated. But that tends to be a very small number of cases of Parkinson’s disease. So most cases are they spontaneously occur based on your own unique body genetics or body system and with potential interactions with your environment and environmental exposures. But at this time we don’t have a clear cause for Parkinson’s.

Scott Gilbert – And there’s no cure. And as we said earlier not even a way to really slow the progression of symptoms, right?

Dr. Sol De Jesus – You’re correct. There’s no cure right now for Parkinson’s. It is a disease that slowly progresses over time. But there are medications that we can use that we have available for patients that can maintain them to maintain a good quality of life and maintain high functioning early on in the disease.

Scott Gilbert – Does the disease progress at the same rate in every patient, or is there some variability there?

Dr. Sol De Jesus – No, it’s very variable. And what we recommend is that you don’t compare yourself with other individuals that have the diagnosis of Parkinson’s. Each individual has a very unique journey with the disorder. And the way that they progress is based on how their symptoms have been changing over time. And they would be their own marker of the progression of the disease. And so it will be a very individual journey for each patient.

Scott Gilbert – It sounds similar to other neurological disorders actually, too.

Dr. Sol De Jesus – It is.

Scott Gilbert – You’re watching Ask Us Anything About Parkinson’s Treatments from Penn State Health. Feel free to add your questions in the comment field and we’ll pose them here to Dr. De Jesus. So on the topic of treatments it seems like a lot of them, pretty much all of them are about improving the quality of life for people with Parkinson’s disease. Let’s start with medications. What kind of medical options are out there, and what do those medicines do?

Dr. Sol De Jesus – So there are many different classes of medications out there for Parkinson’s disease. The gold standard is levodopa. This is us providing the brain with the substance that is deficient in Parkinson’s disease. It gets converted to dopamine in the brain. And that’s one of the ways that we can get patients to be more mobile. There are other medications that will stop the breakdown of dopamine in the brain. And then there’s another group of medications that have an effect on the receptors of the brain that interact with Parkinson’s to allow it to use the Parkinson’s more effectively.

Scott Gilbert – So it really works, the medications work on chemicals in the brain, right, on the chemical balance?

Dr. Sol De Jesus – They do. The main issue with Parkinson’s is loss of the cells that produce dopamine. Without dopamine the body can’t run. So the way that I like to describe it is your car, if a car doesn’t have gas it won’t move, it won’t move as effectively. And so the dopamine is like gas in the car.

Scott Gilbert – So because of how Parkinson’s progresses, though, we know that the symptoms do get worse over time. There are some patients who I would imagine have to take a prohibitive amount of medications. So there are other options out there. One in particular is deep brain stimulation. Can you talk a little bit about that?

Dr. Sol De Jesus – Early on patients have a great response to medicine. They require more amounts of [inaudible]. When that happens individuals may feel a fluctuation in their medicine where they have really great times, what we call the on time. And as the medicine starts to wear off and the dopamine levels drop they can have some off time. And so we call that motor fluctuations. And so individuals that have to take medications more frequently or have side effects with the medication there are alternative options that we can use in adjunct to the medication called deep brain stimulation.

Scott Gilbert – So we have some of those tools here used in deep brain stimulation. I’ll bring them over here. First of all can you kind of walk us through what we’re seeing in this kit here? It looks like a wire, and those are batteries, right?

Dr. Sol De Jesus – They’re batteries. So the deep brain stimulator is a brain surgery that’s done where there’s a lead that has little metal contacts at the end of it that get implanted in very specific brain structures that help the symptoms of Parkinson’s disease. And then that gets placed and tunneled under the skin. And it’s sort of similar to a pacemaker. It sits under the skin. You can use a battery that gets placed by the neurosurgeon during the surgery. And this battery provides the energy to allow to send electrical impulses to the brain in these very specific brain targets to reset or adjust the abnormal brain signal that occurs. Now, this battery is under the skin. And after the surgery is done your neurologist or programming neurologist can do all the programming over the skin and over the clothes. And so it gets adjusted in the outpatient clinic setting.

Scott Gilbert – How long does that battery last? How often does it have to be replaced?

Dr. Sol De Jesus – It’s variable for the individuals and the type of battery. Depending on how much energy the patient needs to address the symptoms of their Parkinson’s it can last between three and seven years. But there’s no set number for each patient. What happens after the battery gets drained is a simple procedure to just remove the battery from the skin pocket underneath. It doesn’t require another brain surgery.

Scott Gilbert – Okay. Well, this is the lead that goes into the brain right here. So this is the part right here on the end that delivers the electricity to the brain.

Dr. Sol De Jesus – Correct.

Scott Gilbert – So how do physicians such as yourself determine exactly where that gets placed?

Dr. Sol De Jesus – So there’s a lot of individuals in the operating room. The neurosurgeon is the physician that does the actual surgery. I am a movement disorder that’s trained in neurophysiology, so we learn to read brain signals within the brain. And there is a neurophysiologist as well in the room that works alongside. And so it’s a sort of map that you get to see as you’re going through the different brain structures. You’re looking at the sounds from individual cells as you go through, and you can map out where you are particularly in the brain, and you can find the specific target that you want to look for based on the recordings that we get with the very tiny electrical recording device.

Scott Gilbert – You’re watching Ask Us Anything About Parkinson’s Treatments from Penn State Health. I’m Scott Gilbert along with Dr. Sol De Jesus. We welcome your questions and your comments in the comment field of this Facebook post. Please also share this post and make sure you subscribe to the Hershey and Penn State Health Facebook page so that you can make sure that you catch future editions of Ask Us Anything About. We’re talking right now about deep brain stimulation which as we were discussing it’s all about this cable right here and these electrodes that get planted deep [inaudible] of a month’s long process of fine tuning that equipment, right?

Dr. Sol De Jesus – So there’s various stages. One of the things that you want to start with is getting an evaluation by — what we have here at Penn State is a multidisciplinary team. So you would see your movement disorder neurologist, you’d see your neurosurgeon, a neuropsychologist and your physical therapist. And we would assess your symptoms and assess your candidacy for the surgery. The second step is to actually go through the brain surgery to have the placement of these components or devices. And then after you have your deep brain stimulation placed you work with your neurologist and programming specialist to adjust and find the optimal setting for your symptoms. And so after the stimulation is placed we use — this is my patient programmer. And I can connect this towards the patient’s battery device over the skin. And this allows me to change where I apply the stimulation, how much energy I’m applying to that battery and to that patient to address the symptoms. And then the patient also has their own little programming controller that will allow them to turn it off and on if they have to. And can also be allowed to change programs if I give them more than one to take home. The process takes about six months to have an optimal program. But you do get benefit from the time that the device gets turned on for your first visit. And it’s trying to fine tune and find the correct program setting for you.

Scott Gilbert – And you mentioned that there could be a couple different programs.

Dr. Sol De Jesus – There can be.

Scott Gilbert – And they can switch between them depending on what they’re experiencing at the moment.

Dr. Sol De Jesus – Correct. And it will depend on how comfortable they are to use it. And there are some people that don’t want to change the programs or touch anything. But we do teach them how to turn it off and on in case they have to get certain procedures done or for other reasons. If there’s any concern that they can do that themselves. So that we gauge based on how comfortable the patients feel and how much they want to be involved in changing groups or changing the programs.

Scott Gilbert – I’ve seen the process firsthand. I was present for when a patient had one programmed. Fascinating process. And it’s interesting how the small changes you make can really make a difference for the symptoms they’re experiencing.

Dr. Sol De Jesus – Oh, absolutely. If you select the right candidates and you’re addressing the right symptoms you can get a lot of benefit from the deep brain stimulator. It is not for everyone with Parkinson’s disease. But if you do have a question it is something worth exploring and talking with your physicians and getting referred with the team.

Scott Gilbert – Who are the best candidates for deep brain stimulation?

Dr. Sol De Jesus – So there are specific symptoms that we know we can treat very well. Patients with tremor, patients with stiffness, patients with slowness in their movement. The DBS device does very well with that. There are certain things that we could potentially worsen with having the deep brain stimulation. And that’s thinking, speaking and walking. And so that’s why there is the need to do this comprehensive evaluation so that we can assess the risk versus the benefit of the procedure for individuals. Most of all patients that have gone on the DBS device state that they are happy and that they have had some benefit with the DBS device long term.

Scott Gilbert – This is Ask Us Anything About Parkinson’s Treatments from Penn State Health. I’m Scott Gilbert along with Dr. Sol De Jesus. And whether you’re watching this live or after the fact on playback feel free to add your questions to the comment field, and we’ll get you some answers. We had talked before as well about medical treatments. I want to jump back to that a second because there’s a rather exciting development. Within just the last week or so there’s FDA approval of a new medication. Can you talk a bit more about what that does?

Dr. Sol De Jesus – That’s right. This is an exciting time for the field and for Parkinson’s disease. There are many medicines that have been coming out in the last two years or so. Most recently about a week ago the FDA approved one medication called safinamide. It’s what we call an MAO-B inhibitor. It’s monoamine oxidase inhibitor. That’s one of the enzymes in the brain that breaks down dopamine. And so this medication was approved by the FDA to be an add-on therapy for patients with motor fluctuations who are on their levodopa. What it does is it allows more of what we call the on time, feeling good on their medicine as opposed to lowering and decreasing the off time with their Parkinson’s symptoms. In the studies they compared it with a placebo drug. And it was on patients who had levodopa already onboard. And it increased on time by about one hour. What’s important to know about this medicine is that there are other classes — there are other medications within the same class of drug that we have available in our arsenal already. That’s the selegiline and the azilect. And some of our patients are already on this type of class of drug. And so at this point we don’t know exactly how it will compare with those medications as there wasn’t any head-to-head comparisons. And when we’re going to have to switch or try this one verses the other types of the MAO inhibitors. So it’s always exciting when a new drug comes out. If you’re not sure if the drug is for you it’s something to discuss with your healthcare provider.

Scott Gilbert – Laura [assumed spelling] has a question online. She’s asking whether there’d be any treatment advantage to having genetic testing to flag an early genetic predisposition to Parkinson’s?

Dr. Sol De Jesus – At this point we don’t recommend genetic testing for Parkinson’s disease when we’re talking about idiopathic Parkinson’s disease, the regular form of it. If it is in individuals that are younger onset, under 40 years of age and there’s a clear family history, there may be some benefit to obtaining the genetic testing. In the end it does not change what we do in terms of the management of our patients with Parkinson’s.

Scott Gilbert – It must be an exciting time to do what you do to see so many promising treatments emerging between DBS, new medications as we were just talking about and wondering what the future holds.

Dr. Sol De Jesus – It is. It’s a field that continues to advance both from the medication standpoint. We are doing very well at treating, again, symptomatically. The field is moving towards more of the neuroprotection of the brain and trying to reverse or stop the progression of the disease. So that’s sort of where the field is moving to from both the medication standpoint and with the imaging devices. In our technological advancements we’re seeing changes within the surgical options that we can offer to our patients as well.

Scott Gilbert – Okay, sounds good. We do have a question from Jamie [assumed spelling] asking whether there’s any link between FTD and Parkinson’s.

Dr. Sol De Jesus – So there are different forms of Parkinson’s disease. And so there is genes that may be in the same sort of within the genetic linkage, but there isn’t a specific gene that has been targeted to both.

Scott Gilbert – What is FTD?

Dr. Sol De Jesus – Frontal temporal dementia. It’s a type a type of dementia that exists, and some patients can have different forms or presentations that can affect in terms of their behaviors and their speech patterns, their language patterns along with their movements.

Scott Gilbert – Sounds good. Are we all set for questions? I think that’s all the questions for now, right? Good deal. Well, I want to say thank you to those who asked questions, and thanks to everybody who’s watched this. And thanks especially to Dr. Sol De Jesus. She’s a movement disorder specialist, a neurologist here at Penn State Health. Thank you for your time today.

Dr. Sol De Jesus – Thank you. Thank you for having me.

Scott Gilbert – And, again, I encourage you to keep asking those questions online on this Facebook post. Even as you watch on playback we can track her down and find some answers for you. And also feel free to share this post. And like I said make sure you subscribe to our Facebook page so that you can get notifications about future editions of Ask Us Anything About. Thank you very much for watching Ask Us Anything About Parkinson’s Disease from Penn State Health.