Dr. James Beck 00:00:01
Hello everyone, and welcome to our expert briefings. I'm Dr. James Beck, Chief Scientific Officer of the Parkinson's Foundation. Our expert briefing today will be centered around Parkinson's disease and the bladder. This is our fourth expert briefing in about our 14th season, so this is kicking off our fall session.
As you know, many people with Parkinson's experience urinary difficulties. Being aware that urinary problems, such as urinary tract infections, can be a symptom of Parkinson's is really the first step toward management. Today, we will learn more about common bladder problems in Parkinson's disease, why they occur, and what some treatment options are.
Before we begin, I want to share a little bit about the Parkinson's Foundation. The Parkinson's Foundation is a nonprofit focused on bettering the lives of those living with Parkinson's through improving care and advancing research. Importantly, everything we do is in close concert with our community to ensure that our actions are aligned with the needs and priorities of those living with Parkinson's disease. To do that, we focus on three particular goals. They are advancing research toward the cure, empowering our global community, and improving care for everyone living with Parkinson's disease.
Before we begin, I'd like to get a chance to know who is here listening in on our conversation. We're going to launch a poll. If you're joining us on Facebook Live, please respond using the comment section, but tell us who you are. Are you a person with Parkinson's, or are you a friend of a person with PD, healthcare professional, scientist, nurse, spouse or partner? Let us know, and then in just a minute we'll post the results to see who you are and who's listening today.
All right, great. The results are in, and not surprisingly, most of the people, 80% of the people who are online so far, are people with Parkinson's. We have a lot of those who are spouses and a couple of healthcare professionals. Welcome. Glad to have everyone here as part of that. Thanks for sharing your connection to Parkinson's.
Just to let you know, for your convenience, we are recording today's expert briefing. If you weren't able to catch everything or you want to take notes on what's available, we certainly have a download of the slides that we'll make available, but this is something that we'll be storing online and something you can come back to again. We'll be emailing a link of the recording and other resources for today's topic to those who've already registered as part of that process.
Dr. James Beck 00:02:39
Now, I'd like to introduce our experts. We're fortunate to have two today. The first one is Dr. Abhimanyu Mahajan, who is a movement disorder neurologist and assistant professor of neurology at the University of Cincinnati. Dr. Mahajan attended medical school in India and graduated from the Johns Hopkins School of Public Health with a master's in epidemiology. He completed his neurology residency at Henry Ford Hospital in Detroit and his movement disorder fellowship at the University of Cincinnati. Prior to coming to his current position, he spent three years as a faculty member at Rush University Medical Center in Chicago.
Dr. Mahajan's primary interests lie in the non-motor aspects of Parkinson's disease, which includes the bladder.
Also joining us is Dr. Ankita Gupta, who is a urogynecologist, particularly focused on female pelvic medicine and reconstructive surgery at the University of Louisville Health in Louisville, Kentucky. She serves as the associate fellowship director for the urogynecology fellowship and is from Kasturba Medical School in Mumbai, India, where she also obtained a master's in public health at the Harvard School of Public Health in Cambridge, specializing in maternal child health and public health leadership. She completed her obstetrics and gynecology residency at Crozer-Chester Medical Center in Pennsylvania and her fellowship in urogynecology at the University of Louisville.
Dr. Mahajan and Dr. Gupta, welcome. Thank you for sharing your time and your knowledge with us today. I'm going to pass the mic to Dr. Mahajan.
Dr. Abhimanyu Mahajan 00:03:56
Thank you. Thank you, Dr. Beck. Thank you for that kind introduction, and thank you for this invitation. Before I say anything further, let me just make sure that my slides work. Can anybody tell me if they can see the slide?
Dr. James Beck 00:04:11
We can see them.
Dr. Abhimanyu Mahajan 00:04:12
All right. There we go.
First of all, thank you to the Parkinson's Foundation for, a, picking this topic, and b, inviting us to speak about this topic. I think this is one of those topics that I see a number of people with Parkinson's disease in my clinic. This is one of those topics that never comes up in the first visit. If you're a shy person like I am, it will probably never come up unless my spouse brings it up or a family member brings it up.
It is imperative we talk about this topic. Over the next few slides, I hope to impress upon you the importance of talking about this because, a, it has direct implications, b, it has implications on other aspects of Parkinson's disease, and c, there are plenty of treatments available that can actually improve your quality of life and prevent harm. Let's get started.
First of all, I've been fortunate to be funded by the Parkinson's Foundation, the Sunflower Parkinson's Disease Foundation and the Dystonia Medical Research Foundation. Nothing that I'm going to be talking about today is a conflict, of course.
As all of these things begin, this conversation must start by discussing that it all started with An Essay on the Shaking Palsy by James Parkinson in 1817. As you may know, the diagnosis of Parkinson's requires bradykinesia, or slowness, with or without rigidity, or stiffness, with tremor. People with Parkinson's walk a certain way, and of course there are certain other aspects that we look at and we say, well, we know you have Parkinson's disease.
Even Charcot, one of the most celebrated neurologists of all time, mentioned that he had seen such patients everywhere, in Rome, Amsterdam, Spain. They reflect always the same picture, can be identified from afar, you do not need a medical history. In other words, what Charcot meant to say was, you see one person with Parkinson's and you know that person has Parkinson's disease. Well, that's not really true though, is it? What we know now is that when you see one person with Parkinson's, you see one person with Parkinson's.
Dr. Abhimanyu Mahajan 00:06:35
What I mean by that is, as you can see, this image has been now made popular by Dr. Okun and Dr. Armstrong at University of Florida Gainesville, where they correctly identify that people with Parkinson's look different, they may feel different. In a given day, they may be their best selves or not be their best selves. In addition to motor features, which are used to describe or define or diagnose Parkinson's disease, there are a number of non-motor features that can actually be even more important to the person living with Parkinson's disease and their care partners. You all know this.
In fact, James Parkinson also made a comment about gastroenterological issues, GI issues with Parkinson's, which we almost always forget. The bottom line is, as you all know, everybody's presentation, progression, response to medications, things that bother you, all of these things may vary from person to person. Everybody with Parkinson's has something different that bothers them, and it's imperative that we not forget non-motor features.
When we talk about Parkinson's disease, most people, or at least their care partners, particularly spouses, are able to identify when things began. It may be that people walk a certain way. Well, you know, Mr. So-and-so has always been a runner, but I noticed in the fall of 2020 that he wasn't able to keep up or he walked a little differently. Or you may notice a tremor in your thumb or your pinky. The truth is, the underlying pathology behind Parkinson's disease may start years before, even decades.
You can have constipation that may begin as early as 20 years ago. You can have sleep-related issues about 10 or more years ago. The part that we're going to be focusing on today is essentially something that is mostly noted about 10 years into the disease. Of course, as you can see, there's a large amount of variability here. You can start having these symptoms along with your motor symptoms, or a slide before, which is what we're going to be talking about: urinary symptoms. It's important to recognize that they constitute an important part of the constellation of symptoms.
What is pelvic floor dysfunction? This is a term I learned about from our colleagues in urology and urogynecology. Well, pelvic floor dysfunction, in simple terms to me as somebody who does not understand urology or urogynecology, encompasses three main areas: the GI symptoms, notably constipation in Parkinson's disease; you can have urinary issues; or you can have sexual dysfunction. Therefore, this is a broad constellation of symptoms and anatomical changes related to abnormal function of your pelvic floor musculature.
Dr. Abhimanyu Mahajan 00:09:42
Today we are going to be, of course, these are interrelated, impairment of one influences impairment of others. Today, we are going to be focusing on urological issues or urogenital issues, namely difficulty with urination, hesitancy, delay in the urinary stream and urinary incontinence, involuntary leakage of urine. But of course, all of this is interrelated.
Now you may think, why is a neurologist interested in something like urinary issues? Well, you may be surprised to know that your nervous system is entrenched in each and every aspect of your body, and urinary issues are no different. Within the brain, the frontal cortex, your basal ganglia - basal ganglia are the aspects that are associated with all movement disorders, including Parkinson's disease - the thalamus and the anterior cingulate gyrus, these are different parts, and I hope you can see this image right here. Different aspects, different parts of your brain that are pivotal to all kinds of movement and therefore important in movement disorders such as Parkinson's, may play a role also in muscles controlling the bladder.
Therefore, a part of your brain such as the caudate nucleus, you can see the caudate head and body right here, your severity of bladder dysfunction leading to issues with urine or urination may be associated with caudate degeneration. Now, micturition, or the act of urination, requires input from both the brain and the lumbosacral spinal cord. Your spinal cord is involved, and it can dictate how distended your bladder is going to be. Your bladder, of course, is the part of your body that stores urine.
Finally, something that directly leads us to Parkinson's disease, and of course dopamine. As you know, in Parkinson's disease, the primary thing that we think about is that the brain does not produce as much dopamine as it's supposed to. A reduction in dopamine can lead to a direct reduction in your control of bladder, leading to bladder contractions, which of course can affect urination.
All in all to say, your brain and your spinal cord are as much a part of the pathophysiology, or things that can cause your bladder to function perfectly well or not function well, as any other part of the body. Therefore, they are important aspects to study in people who have neurological issues.
Dr. Abhimanyu Mahajan 00:12:30
This is perhaps the most common symptom. We are going to jump straight to the symptom. This is perhaps the most common urinary symptom that I hear in people with Parkinson's disease. It's called an overactive bladder.
I put an image of a 24-hour overactive bladder diary. I think it's a good idea to have a diary like this to keep a sense of the timing and frequency of such complaints. For anybody on this call who's taking levodopa for their Parkinson's disease or has family who takes levodopa for Parkinson's disease, you know the importance of timing, the relative importance of timing and clinical symptoms that you may experience. Same way, timing of urination or incontinence episode. Why did you urinate at this time, whether it was, well, I couldn't help myself, or I just had water right before, or I had a cough and I couldn't help myself and I urinated, the amount of urination, incontinence, so on and so forth.
What is overactive bladder? It is the sudden compelling desire to pass urine, which may be difficult to defer. You can't help it. You have this compelling desire to pass urine. It is a clinical diagnosis. The official definition, and I'm sure Dr. Gupta will correct me, but to my understanding, the official definition is that it is a diagnosis of urinary urgency accompanied by frequency, so you pee more frequently than you're supposed to or than you're used to; nocturia, which is a big one, which is you wake up in the middle of the night to use the restroom; with or without urgency urinary incontinence. You have the sensation that you need to pee more, or even after you're done, you leak.
That is how I understand urinary incontinence. Of course, we are not talking about a situation where you have Parkinson's and you have a urinary tract infection. I'll get to that in a second. Or you have Parkinson's and you have something going on in your prostate or bladder in addition to Parkinson's disease. If you have just Parkinson's disease without infection or another pathology happening, and you can't help yourself and you have this urgency, usually accompanied by frequency, nocturia, with or without incontinence, that is representative of overactive bladder.
Dr. Abhimanyu Mahajan 00:14:57
Why should we care about this? Well, urinary dysfunction is highly common in Parkinson's disease. We see urgency and frequency very frequently. Here's the part where it's more than just your bladder and ability to urinate. Your inability to delay urination, of course, increases the morbidity in Parkinson's disease because, guess what, you have to go from your bed or from the chair where you're sitting all the way to the bathroom. You know this. This absolute urgency with which you have to get up and walk increases your risk of falls.
Therefore, overactive bladder is associated with worse quality of life, that one's easy, dysautonomia - the autonomic nervous system is also associated with bladder control, it's associated with blood pressure - cognitive impairment, and finally falls. Especially in the middle of the night. If you wake up in the middle of the night to use your restroom and you're in an off state, so your dopaminergic medication is not as effective now as it was a few hours ago, you're more likely to fall. Therefore, it's important that we identify this and treat this.
I put this slide up there because it's important to note this as well. The age at which we commonly see Parkinson's disease, as you know, Parkinson's disease can present in any age, but it's more common in the 60s and 70s, at least in the United States. It's also the age around which you see urgency incontinence, which is you have to go, you can't help yourself; stress incontinence, which is you cough or you sneeze and you're not able to control your bladder and you have involuntary micturition or urination; and then a mixture of these two. You see these in the age groups where you commonly see Parkinson's disease.
How widespread is it? Well, turns out quite widespread. But because we are also hesitant to ask these questions or volunteer this information, it's anywhere between 24% to 96%, based on the study you see. Regardless to say, it's highly prevalent. It's more commonly associated with increasing age, worsening cognitive function, which makes sense in Parkinson's disease.
Dr. Abhimanyu Mahajan 00:16:49
Now, both men and women can have incontinence, of course, and Dr. Gupta will talk about that, but almost 50% of all women in the U.S. more than 80 years old report at least one relevant symptom if you ask them. While lower urinary tract disease is more bothersome in women, men are more likely to seek treatment with increasing age and severity of symptoms. In women, treatment-seeking behavior is only driven by increasing bother. It doesn't matter how old you are, regardless of how old you are or how severe the symptoms are, unless you're bothered by those symptoms, women are far less likely to report these symptoms compared to men.
That's why we wanted to focus the study that we did at University of Cincinnati and Louisville a couple of years ago now, where we involved our colleagues in urogynecology, geriatric medicine and neurology, and together we surveyed women with Parkinson's disease and women without Parkinson's disease about pelvic floor health using questionnaires. We looked at, for people with Parkinson's, their motor symptoms and cognition, with the idea to find out if and how much Parkinson's disease contributed to issues with incontinence.
Well, this is what we found. Women with Parkinson's disease have worse pelvic health than women without Parkinson's disease. Despite having worse pelvic health - and pelvic health, of course, we talked about this earlier, constipation, urinary incontinence, sexual health - despite having worse pelvic health than women without Parkinson's, there was absolutely no difference in how frequently and how comprehensively they reported their symptoms and how frequently and how comprehensively they went to a physician and asked for it to be taken care of. Clearly, pelvic floor disorders are undertreated in both men and women, but especially in women.
Dr. Abhimanyu Mahajan 00:19:29
I want to briefly touch on this topic. This is a study we did a while back now, but we looked at all admissions of persons with Parkinson's disease within the United States. We had over 3 million admissions representatively. We had 3 million admissions of patients with PD documented over 10 years across the country. What we found was that while other causes of admission to the hospital were slowly trending down, urinary tract infection and sepsis were trending up.
I always tell my patients, Parkinson's disease, for the most part, is a progressive disease. It is not an unpredictable disease. What I mean by that is, if you wake up tomorrow morning and everything seems to be suddenly much worse, so you're freezing more, you're walking slowly, you're confused, chances are that there's some infection, some metabolic change, some new medication. That's the first thing I look at. If you're my patient and you're coming to me and there's sudden worsening, the first thing I would do is check for some kind of infection, and urinary tract infections are notoriously common in men and women with Parkinson's disease.
Now, of course, I've been talking all this while about the bladder and urination as if I know exactly what I'm talking about. The truth is, it is an extremely complicated field, at least for somebody like me. On the screen you can see it says women, but of course in men as well, it is an extremely complicated field. There are plenty of different reasons why you can have urgency of urination and what have you.
Without further ado, I'm going to let Dr. Gupta take over the stage and explain to you what an expert, and actually sound like an expert, talking about this extremely important topic. Dr. Gupta, it's up to you.
Dr. Ankita Gupta 00:21:32
Thank you so much. I'm going to share. There we go. I'm going to actually share my screen so that I can control the PowerPoint as we go along. Okay. Thank you again for the opportunity to talk about something that's near and dear to my heart. Even though I'm a urogynecologist, a lot of the pathophysiology, the workup and the treatments are very similar regardless of gender. Even though I am a urogynecologist who predominantly takes care of women, a lot of these interventions are available to both men and women. I have no conflicts of interest.
This is a very busy slide, but it goes over a brief kind of algorithm or pathway of how we manage patients with incontinence. Like Dr. Mahajan mentioned, there are a few different types of incontinence, and we'll talk about those in this and subsequent slides. Typically, when we get patients who come in to see us with incontinence, the first thing that we do is we start out by looking for reversible causes. What that means is we're looking for patients with infections, if they're on any diuretics or water pills, things like that that might be limiting their ability to get to the bathroom or making them void more frequently. We start out by treating any reversible causes.
We also get some more information about the type of incontinence. Like Dr. Mahajan mentioned, there are three primary types of incontinence that we break patients into. There is stress incontinence, which is the incontinence with cough, laugh, sneezing, jumping, kind of like patients would say, 'I can't get on a trampoline, I can't go running. I leak if I do those things.'
Urgency incontinence, and the overactive bladder portion doesn't necessarily have to be incontinence. We can have patients who have urgency and frequency, which means going more often or not being able to hold their urine or waking up at night to go to the bathroom, even without leaking. A lot of these treatment options apply to those patients even if they don't actively leak. But definitely urgency urinary incontinence is the type of incontinence where you can't hold your urine and you have to go to the bathroom more frequently, or you will leak. Mixed incontinence is typically a combination of both of those. Often when I see patients, based on kind of where they are, a lot of them will come in with mixed incontinence, where they have symptoms of both stress incontinence and urgency.
Dr. Ankita Gupta 00:23:59
Typically, we start out by doing a thorough history and physical examination. This is very similar to whether patients have Parkinson's disease or not. Definitely Parkinson's disease does exacerbate a lot of these symptoms and cause something called neurogenic bladder, but we start out by just getting a sense of the symptom severity. Often patients will have these symptoms that have predated or preceded their diagnosis of Parkinson's disease.
We always make sure that we get a good understanding of what patients' goals are. Everyone has different goals. Some patients might just want enough relief so that they can sleep through the night. Other patients might want enough relief so that they can get through the day or get through their work without going to the bathroom more often or leaking. We try to get a good sense of what patients' goals for treatments are.
We always screen for urinary tract infections, or UTIs. We're always checking to make sure that your symptoms are not more acute from a UTI, and we always check for a post-void residual. That means we're interested to know whether patients are emptying their bladder all the way. We're looking to make sure, either with an ultrasound or with a catheter, to make sure that patients, when they go to the bathroom, they are actually emptying their bladder, because that could be one reason why patients are voiding more frequently if they're not emptying their bladder.
Typically, if patients are complaining of stress incontinence, something like a simple cough stress test - so that means just having a patient stand or sit and cough and just kind of assessing whether they leak - can be really helpful to see if patients have stress incontinence symptoms.
Typically, when patients have Parkinson's and they come in for evaluation, we also do something called urodynamics. Patients who are in this audience who have had that done might recognize them as this, but really what we're doing is we're looking to see whether the bladder is filling and emptying at normal pressures. This is a test that we do in the office. We typically will put a tiny catheter into the urethra and use that to fill the bladder up, and then look on a monitor to see at what pressures or what volumes patients leak.
Dr. Ankita Gupta 00:26:14
That gives us some idea of how your bladder is behaving, both when you're trying to hold your urine, but also when you're trying to void or when you're trying to pee. We're looking to see: is your bladder having an extra amount of spasm that's causing you to leak urine, or are you leaking when you cough, laugh and sneeze because there's too much pressure in your bladder and not enough in your urethra? That's what this test does, and it gives us some more information about your bladder.
There are a few different treatment options, and we're going to go over a lot of these, but the most important thing is to figure out what kind of incontinence the patient has and what their treatment goals are. The treatments really vary by the type of incontinence. Typically, once we've done our initial evaluation, we get a pretty good sense of whether patients have stress, urge or both kinds of incontinence, and we tend to tailor our treatments based on a patient's symptoms.
Typically, conservative options, so that would be non-surgical options, would be things like pelvic floor muscle exercises. I know people hear a lot about Kegels; we're going to talk about that. But there are specific folks called pelvic floor physical therapists who are trained to work with patients in pelvic floor physical therapy. There are also behavioral and lifestyle modifications patients can do, things like bladder training, avoiding drugs, urge suppression techniques, things like that can be non-medical ways to fix or at least help patients deal with or control incontinence.
There are also different things like pessaries, which are continence pessaries. These are usually specifically for women because they go in the vagina, but that is definitely an option for patients with stress incontinence. Then things like medications or onabotulinumtoxin, or Botox, which has been approved for use for urgency incontinence. There are other surgical options as well. Surgery typically is done more for patients with stress incontinence. We'll talk a little bit about slings and urethral bulking options, but there is another great option called sacral neuromodulation, or a bladder pacemaker, that can help patients with urgency incontinence or overactive bladder.
Dr. Ankita Gupta 00:28:33
When we start out talking about stress incontinence, there is always the option to do nothing. Again, a lot of times when patients get referred to me, that's because they've had these symptoms for many years, they've tried doing nothing, and symptoms are getting worse. But I always like to tell people urinary incontinence is a quality of life issue. A lot of the treatments are tailored to patient goals and what their goals for their quality of life are. There is the option to do behavioral management, incontinence pessaries and then surgery for stress incontinence.
When we talk about behavioral management, typically that would be strengthening your pelvic floor. The goal of that is really to make your pelvic floor stronger so that when you jump or cough or laugh, you're able to recruit or squeeze the appropriate muscles so that you can control that leak. You can either do something as simple as Kegels, which you can do at home on your own. There are also options, like I mentioned, for physical therapists, and they can do things like biofeedback, where they can work with you on squeezing the right muscles to get better control and help you get better control of your incontinence.
Really, the goal of all of this is to strengthen the pelvic floor and really just to learn how to squeeze those muscles when you are at a time of stress or activity to help you get better control.
There are unfortunately not any medications that have been approved for stress incontinence specifically, but as I mentioned, incontinence pessaries are an option for women. Really, incontinence pessaries act, as you can see in the image, as kind of like a pressure point, and they help compress the urethra against the pubic symphysis so that when patients cough or jump or laugh, they don't leak urine because there's that compression. As you can see on the image on the right, pessaries come in a whole bunch of different shapes and sizes. Typically, we personalize or customize the pessary.
Dr. Ankita Gupta 00:30:37
We have patients come in and we try a few different pessaries until we find one that is comfortable for the patient. Typically, patients either will keep these in all of the time, so they have the option to wear them all the time and come in every three to six months for us to take them out, or they have the option to learn how to take them out and put them back in themselves. I have some patients who put them in when they are exercising or if they're at the gym, and they'll take them out other times. Self-managing pessaries can be difficult sometimes for patients with Parkinson's disease. It depends a little bit on their baseline level of function or their tremor, but definitely something to consider for patients who are in earlier stages.
As far as surgical management, the most common or the gold standard management option for stress incontinence is something called the mid-urethral sling. This is a piece of mesh, or a bladder sling, that sits underneath the urethra and helps with control with leaking with cough, laugh and sneeze. It is much more commonly used in women. There are male slings available as well, and these are more commonly used in patients who have incontinence after something like a prostatectomy. But the most common type of these things are used for women.
Urethral bulking is when we use a hydrogel. It's a gel kind of made of, like, it's 98% water and something called polyacrylamide. What it does is it acts within the urethra, and it acts as a plug or a stop point so that when patients cough or jump or run, the urine doesn't leak out or gush out quite in the same way. Both of these surgeries are outpatient surgeries. They take about 20 to 30 minutes. They typically are covered by insurance companies, and they usually have very low downtime, so don't require a lot as far as recovery, and are really great options for patients with stress incontinence.
Urethropexies are done more commonly in patients who either have had a reaction to mesh or don't want to have mesh. They're usually done through either a laparoscopic or a robotic approach and are a little bit more invasive than the mid-urethral slings and the urethral bulking, and therefore they're typically not first-line management, but are options for patients who failed the first two treatments.
Dr. Ankita Gupta 00:33:07
Talking a little bit about urgency incontinence now. And like I said, a lot of these treatments apply for patients with or without incontinence. If patients have urinary urgency or frequency, or they're waking up at night to void, they might qualify for all of these treatments even if they're not leaking. There's always the option to do nothing, and then we'll talk a little bit about behavioral management, medications, and sacral neuromodulation as well.
Behavioral management is again very similar to what we talked about with stress incontinence, but with a slightly different goal. The goal here is to stop your detrusor muscle from contracting. So to stop a spasm of your bladder, stop that contraction to help you get better control. One of the ways that we do that is we recommend something called urge suppression, which is when the urgency occurs, for patients to take deep breaths, squeeze their pelvic floor to try to prevent that leaking so that they have more time to make it to the bathroom. Bladder training drills can be really helpful as well. This is where patients, I like to describe it similar to potty training.
It's similar to training a baby or training a puppy. You're putting your bladder on a schedule. You typically would start out by going to the bathroom every hour or so while you're awake, and then if you get the urge to go to the bathroom again before that hour is up, you make yourself wait. You kind of say, no, I know I'm not drinking a whole lot, there's nothing in my bladder, I'm going to wait until my next hour comes around. And then you slowly increase that to about three to four hours between every void. What you're doing with that is you're suppressing sensory stimuli. I get a lot of patients who tell me, like, when I get home, when I put my keys in the door, I feel like I have to run to the bathroom.
Or if I go to the mall, I need to know where all the bathrooms are. If I'm doing dishes, I tend to need to go to the bathroom. The goal of bladder retraining is to suppress those stimuli so you can buy more time. The goal is again to gradually increase how much your bladder can hold. These are things that patients can do on their own that don't require any medications and therefore don't have any side effects.
There are a lot of medications that can be really helpful as well. Anticholinergics tend to be the first-line management for overactive bladder or urinary urgency frequency syndrome. The most common ones that patients will talk about are oxybutynin, tolterodine, or solifenacin. A lot of patients have tried these already. A lot of patients get these from their PCPs. Common brand names would be Ditropan, Detrol, Vesicare. These might sound familiar. They're not usually my favorite first-line treatment options for my patients with Parkinson's. They do increase your fall risk, and they also have some long-term data about cognitive decline.
So I tend not to use anticholinergics as my first line, but that is something that is an option, and certainly insurance companies tend to favor anticholinergics as the medication that they cover for OAB.
Dr. Ankita Gupta 00:36:12
There are actually two beta-3 agonists on the market now: mirabegron and vibegron. They are really great medications to help with bladder control. Mirabegron has a slight side effect of raising your blood pressure. Vibegron does not have that side effect, but those can both be really great medications, and they're once-a-day pills without any other side effects that can be used to control bladder urgency and frequency, and even waking up at night to go to the bathroom. There is not as much data about alpha agonists, TCAs, and duloxetine, so I'm not going to touch on those very much.
Definitely, things like Flomax can be helpful for patients who've got prostate issues. We're not going to fully cover those, but those might be things that you are eligible for if you've got those kinds of issues. Onabotulinumtoxin, or Botox, is a really great treatment option for patients, and I tend to use this very often in my patients with Parkinson's. This is a medication that's injected cystoscopically. Typically, we put a camera inside your bladder. We do this in the office. We have the option to do this either in the office or in the operating room, but I tend to do these in my office. Typically what we do is we use local numbing medication, just lidocaine, to numb your bladder, and then we inject Botox in that pattern that you can see on the left side, all around your bladder.
What this does is it paralyzes your bladder for about a year at a time, and so it prevents those bladder spasms that patients would complain about. The advantage of doing Botox is it's a once-a-year treatment. You typically don't have to get this done over and over again. I have some patients where it's lasted about 18 months at a time. Sometimes it wears off a little bit early, so I tell patients anywhere between six to 18 months, we can do a repeat injection.
The biggest risk or downside with doing Botox is sometimes it works too well, and it paralyzes your bladder so that you cannot pee or you get urinary retention. That happens in about 4% to 6% of the time. So four to six out of 100 patients will get retention. The good thing about Botox is it does wear off. So if you do have retention, that's a side effect that wears off over time, but we don't have any way of predicting who that side effect is going to happen to. So it's definitely a risk-benefit that I weigh with my patients when we talk about Botox.
There's also a slightly increased risk of bladder infections or UTIs after doing Botox. We typically will give patients antibiotics around when we do the Botox injection, but if they're not emptying their bladder all the way or if they develop urinary retention, they're more likely to get infections after Botox.
And then the other third-line treatment option for patients is something called sacral neuromodulation. A common term I've heard patients use is bladder pacemaker. This is an outpatient surgery, and what we do with this is we place a wire into the S3 foramen, and we're kind of implanting this pacemaker that helps you get better control of your bladder. It is covered by insurance, but it is a little bit more on the expensive side, and it is therefore not a first-line treatment. We don't fully understand why it's effective. We think it has something to do with reprogramming the afferent nerves that come from the S3.
For a long time, actually, sacral neuromodulation was contraindicated in people who had nerve-related bladder issues, but over time we found that that's not true. And it works really well even for patients with Parkinson's disease. They make a battery that's both rechargeable and non-rechargeable, and it's very patient-dependent. But the batteries themselves are good for anywhere between 10 to 15 years. So once we get a patient that, you know, we try this, they like it, we put a permanent battery in, typically they don't have to do anything with the device for about 10 to 15 years. The other nice thing about sacral neuromodulation is there's a trial phase.
There is a test series that you can do in the office where we try the device out, we let you try it out at home, and then that way we can see whether the device is working or not.
This is essentially what it looks like. As you can see from the images, there's a little lead that goes into that S3 foramen, and we're putting a wire in to help you get better control of your bladder through stimulation in that area. And then we make a little pocket site just above your gluteal area and we implant that battery. It's all inside, it all stays inside, and it's effective for about 10 to 15 years at a time.
I think that was all I had, but I'm very, very happy to answer any questions that anyone might have about this or any other conditions related to this.
Dr. James Beck 00:41:14
Dr. Gupta, that was fantastic. Thank you, Dr. Mahajan, too, for setting the stage. We've got a lot of questions coming in as part of this, as you can imagine. I just want to get started on that. But before I do that, just a reminder, as we continue with our live Q&A, feel free to continue to submit questions. My colleagues are doing their best organizing them and have them ready for us. We get a lot of questions. We may not be able to answer them all, but we'll do our best to respond and certainly have my colleagues on our Helpline who can follow up with other questions that may be too specific for us to really answer right here.
Maybe for both of you, this is a question that's come through. Just thinking about when we talk about bladder and urinary issues, I mean, Dr. Mahajan, you said this could be an age part, maybe it's Parkinson's disease. Once these symptoms arise, is this a constant battle? Is there a point where you can reach a détente, if you will, where things are under control, or is this a lot of effort? Because people with Parkinson's, especially if they've had it for a while, they've got a lot on their plates with the medications and things, and then adding this can complicate things. Is there a way to get this where symptoms are under control and they can, for lack of better words, just focus on their Parkinson's?
Dr. Abhimanyu Mahajan 00:42:28
Yeah. I think there are a couple of different questions in there. The first thing is, yes, these issues seem to happen around the same age group where Parkinson's seems to be most common. And once they develop, there are ways, there are two ways to handle this. First of all, of course you have to screen it. Not talking about it really doesn't help. But once you've screened the issue, then there are two ways to approach it.
The first thing is we all need to understand that there are issues with treating them and not treating them. If we do not treat some of these issues, of course they can lead to, as I mentioned before, worse quality of life, dysautonomia, falls, cognitive impairment, so on and so forth. The other aspect of this is, if you do treat them, it depends on what modality you're using to treat.
For example, as for botulinum toxin, if you have the right kind of incontinence and you find a urologist, a urogynecologist who's experienced in injecting botulinum toxin, and you find the right muscles and the right dose, which is not that hard, but once you identify that and you get treated with that, ideally you don't get bothered by these issues anytime because you get treated every three months or so and life goes on for everything else. Now, with medications, as Dr. Gupta mentioned, if you're using anticholinergic medications, then you have to be careful about different aspects, other non-motor aspects of Parkinson's.
Now, if you're using alpha agonists, then you need to worry about blood pressure, but for the most part, the rest of it is reasonably well managed. To answer your question in a very complicated way, these issues, once they develop, because some of them are partly issues of aging as well, they're not going away by themselves. So we screen them, and we find the best way to treat them so they don't get in the way of you doing things that you like to do on a day-to-day basis. Just ignoring them doesn't make them go away.
Dr. James Beck 00:44:40
Yeah, I think that Dr. Gupta's nice little slide, you know, ignoring them clearly is the first step, and that doesn't always seem to help. Dr. Gupta, when we talk about these different treatments, it seems like exercise is probably something we as an organization talk about all along, and here we're talking about very specific types of exercises. When we talk about Kegels, they work for men as well as women, I presume, yes? Correct. Just want to make certain everyone's aware of that. And then how successful is it with exercise? Is that, as a first line, do you see a lot of success with that?
Dr. Ankita Gupta 00:45:14
I think it depends a lot on what baseline symptoms you're starting with. The earlier you start, the more effective they're going to be. If you have someone who has urgency frequency but doesn't really have incontinence, those are great candidates for pelvic floor exercises because you can stop that or reduce that even before it gets worse. Typically, when I have patients who have incontinence episodes six, eight, 10 times a day, who are wearing pull-ups or diapers, they're less likely to be improved with just exercises alone. But certainly it's a helpful adjunct if you're doing other things and can add the exercises in as well.
Dr. James Beck 00:45:56
Yeah, it's likely, too, it's not something you have to go to the gym to do. It's part of the process. One of our viewers, Laura, mentions this to physicians and they shrug and say it's part of Parkinson's. How do you counsel people with Parkinson's to be better advocates for themselves? Should they go see a specialist? I mean, if maybe their neurologist or their primary care physician is not—
Dr. Ankita Gupta 00:46:21
I can add something to that. Honestly, I get patients all the time that have been complaining about incontinence for decades before they got to see me. So it's not just in Parkinson's. I think it's a more general issue. At least my patients, a lot of them have been told that this is part of aging, this just happens, you learn to deal with it. And I have been doing a lot of education efforts within my community to train primary cares to send patients in earlier. But definitely advocating for yourself and saying that there are urologists who are specifically trained to help people with bladder issues, and I would like a referral, I think that's one of the best ways that you can get in to see someone sooner, because I know I love to help people who complain of this.
Dr. James Beck 00:47:13
Yeah, I didn't appreciate how extensive this is, really undertreated and perhaps underrecognized as a problem. I mean, Dr. Mahajan, you've kind of really hinted to that. So what is the—people come in at different times. You mentioned, Dr. Mahajan, men seem to just wait longer for age before they come in. Women seem to, for lack of a better word, just bear it for a longer time until I guess they can't anymore. When should people start coming in? Perhaps at the first leakage, or what's the tipping point for someone to start coming in? Is it they're getting up three or four times a night, or twice a night? How do you advise people when to start making that connection to start seeking specific help?
Dr. Abhimanyu Mahajan 00:48:07
I started my talk talking about how these are issues that don't come up in the first visit and may never come up. What I specifically do is there are a number of quality measures that I have built internally. Falls is one of them, freezing of gait, these are motor features, but then of course cognitive issues and urinary incontinence is another one. I make it a point to go over them ideally at every visit, or there are certain issues that may come up in terms of just your conversation. When I'm talking to my patients and I say, how's your sleep at night? Any difficulty falling asleep or staying asleep?
Most people would volunteer, well, falling asleep may be okay, but when I wake up in the middle of the night because I have to use the restroom, I feel like I have to help my spouse, help my care partner, because people say, well, I feel like that's when I'm going to fall. That's a segue for me to start talking about incontinence and other symptoms of incontinence, including stress and urge incontinence.
I would encourage all patients and care partners who are listening to this talk or will listen to this talk in a recorded format to think about these things for yourselves and your family and your friends. I also think that it's imperative that we talk about this amongst urologists, because these are not symptoms that we typically encounter or we typically discuss. So in a very crude, crass way, it's somebody else's problem because we're dealing with so much in terms of Parkinson's disease. But it turns out it's not. Your patient is coming to you because not only does this affect other aspects of Parkinson's disease, but your patient is your patient, your responsibility. So if there's something that's affecting quality of life, you do that.
To answer your question again in a very complicated way, I would say the first time anything like this bothers you, you need to bring it up. If you start experiencing some symptoms and you don't know what the implications of those symptoms are, it does not hurt to ask.
Dr. James Beck 00:50:20
Okay, fantastic. So a question that's come in a lot, and kudos to Wally for being the first one to ask this: how does levodopa influence the frequency of urination? How do the medications that people are taking play a role in some of the issues we're talking about?
Dr. Abhimanyu Mahajan 00:50:38
That's a very complicated question, I think, because what affects incontinence or even regular urination varies. It varies not only per person, but also by stage of disease. Early on, bladder muscles, I think I had a slide on that, the dopaminergic control of bladder muscles early on in Parkinson's is definitely affected. So once there's dopaminergic replacement, you would expect that those muscles would behave themselves a little bit better.
At least early on, I do expect that these things would improve, but there's a huge amount of cholinergic involvement with these cases as well. As the disease progresses and we see some of that cholinergic aspects creep in, even with constipation, for example, remember we talked about constipation as an aspect of pelvic floor health. Most of my patients anecdotally say, well, I have terrible constipation. Once they start taking levodopa, constipation improves. As time goes on, it becomes more of a cholinergic issue. So it depends on the degree or the stage of Parkinson's. Initially, I would expect levodopa to improve not only constipation but also bladder function. Later on, it gets more unclear.
Dr. James Beck 00:52:00
And just for the benefit of our audience, when we talk about cholinergic, what are we talking about?
Dr. Abhimanyu Mahajan 00:52:08
I mean the entire system, right? The recent papers that have tried to do this even better, but we try to group all symptoms in Parkinson's as dopaminergic, or predominantly symptoms that are predominantly affected by the lack of dopamine in Parkinson's. And then we're talking about the cholinergic system. Cholinergic systems can involve all kinds of secretions and excretions.
It can involve daytime sleepiness, it can involve your cognition, etcetera, and all those are more likely to be affected by acetylcholine and not dopamine. Although, of course, as with everything, there's some interplay between them. Early on, a number of these symptoms seem to be more affected by the dopaminergic system. So levodopa should improve your bladder function to some extent, at least early on.
Dr. James Beck 00:53:01
Thank you. That was a great response. As I think about some strategies to help manage these, I think we laid out some nice approaches for exercises, potential medication. And quickly, I assume the Botox approach works for men as well. Is that an in-office approach? Yes, a little longer urethra in order to traverse, but presumably works great. Excellent.
What about hydration? I think that's something that's an issue that cuts both ways. Sometimes elderly don't drink enough as it is and they're dehydrated, and we don't want them to not drink at all to avoid these bladder issues. But what's the approach? How do you counsel people with Parkinson's?
Dr. Ankita Gupta 00:53:46
I think that's a tricky piece of it because often I'll get patients who, in order to hydrate, are drinking 100, 120, 140 ccs of water per day. I think that's where the bladder diary is really helpful because tracking to see what you're drinking and where you're voiding in association to that can be really helpful. It's not just about how much you're drinking, but also what you're drinking. Definitely water is really helpful, but if you're drinking a ton of soda or carbonated beverages or caffeine, all of those are known diuretics, and all of those make you void more. It's also a matter of when you're drinking it.
If you're drinking a lot of fluids right before you go to bed, you're going to wake up to void. One of the first-line things that we talk to patients about is trying to restrict fluids to 60 to 80 ounces per day and consuming that mostly about two hours before bed. Again, not drinking a lot of fluids before bedtime to prevent that nighttime waking up to void.
Dr. James Beck 00:54:48
Yeah, it sounds like it's also maybe part of the training the bladder approach. Oh, go ahead. Yes, please.
Dr. Abhimanyu Mahajan 00:54:54
Yeah, I think this is where the focus of the neurologist may slightly differ from the urogynecologist. I have a huge bias, and this is an evidence-based bias, so I guess it's not biased, against dehydration or not drinking enough water. I think it's one of the lowest-hanging fruits for our patients to do much better in pretty much any aspect of Parkinson's disease, be it cognition, be it constipation, what have you, general quality of life, all of it. Falls.
What I typically do, the way I approach it is, I spoke to a number of my colleagues in nephrology, and if you talk to nephrologists, they will tell you that you need to be drinking two liters of water a day. I mean, that's their standard response to pretty much anything. Two liters of water a day. They're not wrong. So what I typically say, of course it depends on your body mass index and things like that, but what I typically say is that aiming for about a liter and a half, which is about 48 ounces, is not a bad idea - of water.
Now, the question is, if you're drinking 120, 200 ccs a day and you have to go to a liter and a half, the first few days, the things I counsel patients on is, one, for the first few days, your kidney is going to be working overtime to recalibrate itself. So you will pee more. Don't be alarmed by that. This is expected. The second thing I tell them is the approach that seems to work the best is you wake up in the morning, you have a half-liter, 500 cc glass of water next to you, you drink the entire thing. That takes away a third of your requirement for the day.
And the third thing I tell them is, if you depend on your brain's ability to tell you when you're thirsty, you're going to be dehydrated. So get a bottle of water which is 750 mL or a liter, fill it up, and sip on it throughout the day, ideally most of it before 4 p.m. If you do that, chances are you won't wake up in the middle of the night and you still drink enough water. And of course, if they still have neurological, urogynecological issues, I do refer them to my colleagues as well. This way, you get the best of both worlds.
Dr. James Beck 00:57:09
That's fantastic. We're coming towards the end of our time. Dr. Mahajan, Dr. Gupta, thank you very much for sharing your knowledge today on our expert briefing about Parkinson's disease and the bladder. I also want to thank every one of you who joined us today. We had a significant response during our Q&A, and, last week, we were not able to address all the questions. But please, if your question was not answered, call our Helpline, 1-800-4PD-INFO.
I'd also like to note again, this is our fourth episode of our 14th season. We've got two more left for this year. They're listed here on the side on the 11th and the 8th. Parkinson's and the gut-brain connection; here we can maybe address some of the interesting aspects of the microbiome. And then, what about hallucinations and delusions in Parkinson's disease? You can learn more and register at Parkinson.org/ExpertBriefings, and that link will be posted in the chat.
Also, I just want to remind everyone, we have lots of resources at our organization that are available. We have our Aware in Care kit about hospital safety. We have a library of extensive materials about issues around bladder health, as well as eating and other things along those lines, as well as our regular series of our PD Health at Home series, which has a number of virtual events.
We also have podcasts every Tuesday, Substantial Matters, professional education. And last but not least, I'd like to just mention again PD GENEration, which is our free opportunity to get genetic testing and counseling to understand if you may have a genetic link to Parkinson's disease. You can learn more about that at our website again, Parkinson.org/PDGENEration.
I wish we had time to answer all your questions, but again, reminder, 1-800-4PD-INFO or our Helpline at Parkinson.org as part of that. Our Helpline is staffed by Parkinson's professionals. These are really dedicated colleagues who can really help answer almost all types of questions. I really encourage you to reach out to them.
But before you go, this is the Zoom world and the screen's just going to turn black, but a webinar like this is important. It requires a community to put it together. So a survey will come up at the end of this, and I want you to please take some time, let us know your thoughts of this, give us feedback. This is how we improve our webinar series and are able to provide the feedback to our speakers as well. I encourage everyone to do that when this ends. So this is it for today. We'll see you again in October. Please take care, and I'll talk again at our next expert briefing again very soon.
