Expert Briefing: Sights, Sounds and Parkinson's

Dr. James Beck 00:00:01
Hi everyone, and welcome to the 2022 Expert Briefing Series. We're very happy to start off the year with a really interesting topic today: Sight, Sound and Parkinson's Disease. I'm your host, James Beck, the Chief Scientific Officer of the Parkinson's Foundation, and I'm really excited, as I mentioned, for our topic today. For those of you who may be new to the Zoom environment, or at least new to our Expert Briefings, and for those who have come back, I just want to take a moment to re-familiarize everybody with how our Zoom layout is going to work and how you can interact and ask questions of our presenter today, Dr. Hamedani.

Right now, I've just advanced the slide, and you see a big red arrow pointing down. That's the chat feature, where my colleagues will push out information for you to take a look at. Right now, there's a welcome, as well as an option for texting your questions for those who are joining us live on Facebook to my colleagues, and we can ask our panelist about those questions. Next is the Q&A. For those of you who are joining us via Zoom, this is where you'll ask your questions, and you can put them in there.

My colleagues will take them in. If time permits, we'll hopefully get a chance to address them. If time doesn't permit, we'll ask our colleagues or our Helpline to assist and see if we can get an answer for many of the people. We do our best to get to everyone's question, of course. What's also nice is there's a new feature in Zoom that allows us to have a live transcript of what's going on. If you have a hard time hearing, or it's a noisy environment, you can turn this transcript on. It's computer generated, so it's not going to be perfect, but it should give you enough of a sense of what's going on and allow you to follow along, at the very least, with what we're talking about.

Of course, and as always, these sessions are recorded and archived. If you are unable to watch it all or you come in midway, in about a week's time, you'll be able to watch this recorded and capture what you missed and share it with others who you think might find it interesting as well. Also keep in mind that the slides being presented by our speaker are available for download. Again, this is in the chat feature. This is where you'll find a link to download the slides if you'd like to have them at a later time.

What we'd really like you to do is sit back and enjoy, listen to the presentation, and take some notes if you like, but know that we have a lot of this material ready for you if you want to refer to it again later on.

Dr. James Beck 00:02:49
As we talk about the Foundation, I just want to emphasize again what our mission is as an organization, and that's to make the lives of everybody living with Parkinson's disease and everyone affected by Parkinson's disease better. We're looking to improve care and working furiously to advance research toward a cure. We really build upon the Parkinson's community to do that. We will often engage in surveys and questions to really understand: what are the needs and priorities of those living with Parkinson's disease?

As stewards of other people's money, we can ensure that what we're doing is the best and meets the needs of the PD community as a whole.

As part of that, we have three goals with which to meet that mission. As I mentioned, improving care for everyone with Parkinson's, advancing research — we spend millions of dollars trying to better understand Parkinson's disease and hopefully reach a potential cure — and the third is to really empower and educate our community of those living with Parkinson's disease through sessions just like this one today, our Expert Briefing Series. The more you know about Parkinson's disease, the more you can have confidence when you go speak with your clinician, the more you know what to expect, and you can be a master of your own journey to the extent you can.

This is what we do, and I think we do very well as an organization.

I also want to thank our sponsor. For our 2021-2022 Expert Briefing Series, our Expert Briefing Series was supported by a grant from Genentech, a member of the Roche Group. Without their support, it's very difficult to put on these types of presentations, so I want to acknowledge them and thank them for their support. As I mentioned, recordings of our Expert Briefings will be archived and made available in about a week. Already, my colleague Danielle has made a link available for the slides to download. If you want to download them right now, feel free, or if you want to come back and do so, you can.

Dr. James Beck 00:05:00
Right now, I'd like to put a poll out there to understand who's here and attending. We have over a thousand participants here and really want to know who is watching today. If you're joining us via Facebook Live, go ahead in the comment section and tell us whether you're a person with Parkinson's, the spouse or partner of someone, or if you're a healthcare professional. It's helpful to understand who's joining us live today, and because we're doing this live, we can always make some slight adjustments to the presentation to ensure that we're presenting something for everyone to take in.

Again, if you happen to be a scientist, researcher, clinician, nurse or nurse practitioner, feel free to ask questions, and Dr. Hamedani will be happy to answer those as well. Let's see what we have for the results.

Not surprisingly, we have a lot of people here who have Parkinson's disease or have a loved one who has Parkinson's disease. A good number of healthcare professionals are joining us, which is really great — 6%. We really look forward to having a wonderful talk today as part of that.

Without further ado, let me move on and introduce our speaker, Dr. Ali Hamedani. He is a neuro-ophthalmologist and movement disorder specialist at the University of Pennsylvania. This is a really interesting mix of ophthalmology and neurology, and he can talk a little bit about that.

He obtained his bachelor's degree in biology at Yale University and his MD at the University of Maryland School of Medicine. He also holds a master's degree in epidemiology from Johns Hopkins Bloomberg School of Public Health. Dr. Hamedani joined the faculty after completing his neurology residency and fellowship training at the University of Pennsylvania, where he sees, as you can expect, patients with a spectrum of visual symptoms from neurologic disease. With a specialty in movement disorders, he has a clear interest in Parkinson's disease as well. His research is in epidemiology and uses national health surveys and administrative claims data to truly understand how vision affects outcomes and quality of life in Parkinson's disease and other patient populations. He is published in this area, and hopefully we will get a chance to touch on some of that.

I'm going to welcome Dr. Hamedani and turn off my video, and allow Dr. Hamedani to present his slides today so we can have that as well. Dr. Hamedani, welcome.

Dr. Ali Hamedani 00:07:40
Thank you, Dr. Beck, and thank you everyone for being here. As Dr. Beck said, my clinical practice is primarily as a neuro-ophthalmologist. What that means is that I'm a doctor who specializes in visual symptoms from neurologic disease, or you can think of it as anything behind the eyeball that affects vision. Parkinson's is behind the eyeball, in the brain, which is one of the reasons that I've become especially interested in this subject. Thank you for the invitation, and I'm really excited to be speaking to you all.

Before we talk about vision and Parkinson's — and I should back up and say that I know this talk is about sights and sounds. Because of my particular background, I'm focusing a lot on sights, although we will get to sounds and hearing toward the end. Before I talk about vision in Parkinson's, I want to spend a little bit of time talking about vision and health in general, because to a certain extent, the way that vision affects health in Parkinson's is a microcosm of how it affects health in the general population. Just because you have Parkinson's doesn't mean that you stop being another person.

One thing that I think helps to frame this discussion is to acknowledge that vision is our most dominant sense. In fact, about 40% of our brains are devoted to vision in some capacity, which means that any condition that affects the brain, such as Parkinson's, is almost guaranteed to affect vision as a result. We rely on vision for many of our daily activities, like reading, writing or driving. This is only becoming more prominent as technology plays a greater and greater role in our lives, like, for example, using text and email instead of talking on the phone or something like that.

We also know from studies of the general population in the U.S. and other countries that visual impairment is associated with poor health outcomes, regardless of whether you have PD or not. Specifically, people — and by people, I'm referring primarily to older adults — with visual impairment are more likely to have falls and injuries, such as hip fracture. They're more likely to suffer from depression or anxiety, and there's some evidence they may even be more likely to develop cognitive impairment and dementia too, for a variety of reasons. As a result, vision and the treatment and prevention of visual impairment are important for health in general.

Dr. Ali Hamedani 00:10:05
This is especially important because we know that at least half of all visual impairment is caused by eye diseases that are treatable or preventable to a certain degree. When we think about things that we can do to improve health or outcomes, many risk factors for disease are ones that are out of our control, such as age or genetics, but vision is one that, to a certain extent, is within our control or we have the opportunity to improve. Anything from needing glasses, which is what refractive error means, or some common age-related eye diseases like cataracts, glaucoma and macular degeneration, do have some treatments.

These are also all things that increase with age, as does Parkinson's. Some of the reason that visual impairment occurs in people with Parkinson's is at least in part related to the fact that these age-related eye diseases also track along with age.

As a result of all of this, it's important to see an eye doctor regularly, regardless of whether you have PD or not. Currently, the American Academy of Ophthalmology recommends that people over the age of 65 see an ophthalmologist every one or two years.

Moving now onto vision and Parkinson's specifically: we do know, based on a number of studies over the past 15 to 20 years, that vision is affected in Parkinson's. But it's affected in a number of different ways, and that experience is different for everyone. Some people may have one particular difficulty with vision, and others may have another one. As you all know, the experience of Parkinson's in general is very unique and different for everyone, and the same is certainly true of visual symptoms. An important thing to know about vision in PD is that it is something that can negatively impact quality of life. However, visual symptoms from Parkinson's generally do not result in overt loss of vision.

By loss of vision, I mean an inability to see certain letters unless they're very large, or blindness, you could think of it. The question I get sometimes from patients is, "Will I go blind from my Parkinson's?" and the answer to that is no, because the way that Parkinson's affects vision is in a little bit more subtle ways that are not as easily measured.

Dr. Ali Hamedani 00:12:21
The good news is that those symptoms of Parkinson's with regards to vision are treatable, but it's typically not by adjusting Parkinson's medication. Instead, the way that we would approach visual symptoms with Parkinson's is primarily looking at your glasses, thinking about certain eye drops if needed or other lifestyle modifications.

Another important thing to note is that visual symptoms from Parkinson's are very common, such that they might even happen to people without Parkinson's. With vision in general, it's very difficult to tell based on someone's symptoms alone whether they're related to Parkinson's or whether there's something else going on in the eye, like cataracts, for example. To a certain extent, we all experience difficulty with vision as difficulty doing something: I'm having difficulty seeing, or things are blurry. It's very hard to tell just from speaking with someone, is that Parkinson's related or is that something else that we should be worried about?

As a result, it's important for your doctor to be aware of these symptoms so that they can help to distinguish between Parkinson's and non-Parkinson's-related causes of visual dysfunction, since those might be treated differently.

There are five common visual symptoms in Parkinson's that I want to touch on today, although there are others. Later, during our question-and-answer time, if you think of any others, please feel free to ask. The five that I'm going to talk about now are dry eye, double vision, difficulty reading, impaired depth perception and hallucinations.

The first is dry eye. I'm going to begin this discussion with kind of a silly question, which is: why do we blink? It's something that you probably never thought to ask yourselves before, but the answer is that we blink in order to keep the surface of the eye moist.

Specifically, the cornea, which is the front of the eyeball, plays a big part in focusing our vision and protecting the eye. When we blink, we distribute, or we move, tears across the eye in order to keep it moist. If that didn't happen, it would be bad.

Dr. Ali Hamedani 00:14:22
It turns out that because people with Parkinson's blink less frequently than people without Parkinson's, they're prone to developing dry eye. In addition, some Parkinson's medications can worsen dry eye too, so it's important to know about that if you're someone who already has dry eye and to be aware of which medications you're taking or starting. Something that often goes hand in hand with dry eye is something called blepharitis, which is an inflammation of the eyelid skin caused by a buildup of oil and bacteria there. That often accompanies or precedes dry eye.

One important thing about dry eye to know is that it can cause a number of different symptoms. You might think that if the eyes are dry, then they'll feel dry, but it turns out that dryness feels very different to different people. Some people experience an actual feeling of dryness, but others might not experience that feeling and instead have blurring of vision, increased glare where bright lights blur your vision or are bothersome, or sensitivity to light. Those can all be symptoms of dry eye. Like I said, an actual feeling of dryness or irritation can happen, and what's underappreciated is how uncomfortable or painful that can be.

For some people, their eyes may be sore, stinging or aching, and that's also because of dry eye. People can have itching or redness in their eyes, sometimes going along with allergies, for example. It might feel like there's something in your eyes that shouldn't be there, like sand or some other foreign body.

A really important thing to highlight is that sometimes your eyes might actually water or tear a lot, and that is a sign of dry eye. It's a little bit counterintuitive because you think if there's extra moisture, if there's extra water and tears, how can they be dry? But it turns out what's happening is that when your eyes are dry, it stimulates your eyes to produce more tears, but they don't produce the correct type of tears. They're producing a different one that is not staying in the eye and doing its job. That's why your eyes water and there's a lot of discharge, but that's still a result of dry eye.

Dr. Ali Hamedani 00:16:36
Any combination of these can happen, or dry eye can actually be asymptomatic. It's not unusual for Parkinson's patients to go to their eye doctor and be told that they have dry eye even if they don't really feel it or notice it at all. But it's still worth addressing because untreated dry eye can cause some permanent damage, believe it or not. It can cause some scarring of the cornea, the outer layer of the eye, which can lead to some permanent problems with vision. Dry eye sounds very frivolous, but it's very common in Parkinson's and an important thing to take seriously.

If the main cause of dry eye in Parkinson's is reduced blinking, then you might think that the answer is to blink more often. Yes, that's theoretically true, although I find that it's very hard to consciously blink more frequently. Blinking is something that we do without thinking, and we have many other things to think about in our time instead. I think if you stopped what you were doing every 10 seconds to blink, you wouldn't get very much done, and it wouldn't be all that fun.

You're welcome to try, but I don't think that's a really feasible solution. One thing I will say, though, is that the blink rate does increase with stimulation or activity. The more that you're doing things, looking around, exercising, engaging with people, that sort of thing, you actually do blink more frequently as a result, versus things like watching TV, where you tend to blink less. Having a generally active and full lifestyle may help in that sense.

Like I said, be mindful of screen or reading time because we're blinking less when we do those. But really, the mainstay of treatment for dry eye is artificial tears, which are eye drops that are available over the counter. The important thing when you get artificial tears is to make sure that they're preservative-free. Specifically, you want to avoid anything that on the label says "get the red out" or "redness reduction" or anything like that. It's because the chemicals that are used to remove redness do remove redness, but they also irritate the eye and can worsen dry eye in the long term.

When you go to the pharmacy to buy artificial tears, you'll see some daytime and nighttime preparations. They're pretty similar, except that the nighttime preparation is a little bit thicker. That's because our eyes tend to dry out the most while we're sleeping, because we're not blinking at all while we sleep. You can use artificial tears up to four or six times a day. There's actually no such thing as too much of them. A general rule of thumb that I often give Parkinson's patients is to use artificial tears around the same time that you take your carbidopa-levodopa, which for many people they're taking three or four times a day or more. That will help you remember to use them.

I've listed a few examples of artificial tears here. There are others, and I don't endorse any one in particular, but just in case you see any of them at the pharmacy.

Dr. Ali Hamedani 00:19:31
I mentioned blepharitis earlier. That is treated a little bit differently, with something called warm compresses. What that is is when you take a clean washcloth or paper towel, soak it in warm water, close your eyes, and put it over your eyelids for about five or 10 minutes or so. That helps to loosen up the oils and to clean the skin. If these strategies don't work, then you should follow up with your eye doctor because there are some prescription treatments for dry eye that require an eye doctor, including a couple of prescription eye drops. There are even some procedures in the office that can be used to help promote lubrication of the eye.

All right. The next visual symptom in Parkinson's is double vision. Just to clarify, as I've shown you here, when I say double vision, what I mean is seeing two of the same thing instead of one. In these pictures, that might mean seeing a shadow of the fingers to the side, or a part of someone's face doubled up, or that sort of thing. Double vision in general can occur for one of two different reasons. One would be if there's a problem in the front of the eye that's causing difficulty focusing, such as needing eyeglasses or dry eye or something like that. When that's the case, that causes double vision that persists even when you cover one eye. You have double vision, you cover one eye, and the double vision is still there.

That type of double vision is actually completely unrelated to Parkinson's. But the type that is related is a little bit different. That's double vision where each eye individually is healthy and seeing well, but the eyes are pointed in a slightly different direction. In other words, they're misaligned. What happens is it causes each eye to see a slightly different image, and when your brain sees both of those, it sees double. That double vision will get better when you cover one eye or the other. That is the type of double vision that's related to Parkinson's. To summarize, if you're having double vision and you want to know, could it maybe be related to Parkinson's or not, you should cover one eye and see if it goes away. If it does not go away, that's not Parkinson's related; that's needing new glasses. If it does go away, then that might be Parkinson's related.

Dr. Ali Hamedani 00:21:39
Double vision from Parkinson's is actually quite common. Up to 30% of people in some of our recent studies have shown that. The most common pattern of double vision in Parkinson's is one in which you have double vision near, like when you're looking at something up close, like reading, but not when you're looking at something far away. That's something called convergence insufficiency. Like I said, it's common in Parkinson's in general, but one particular time to be on the lookout for it would be after deep brain stimulation. Sometimes it can emerge or worsen after deep brain stimulation. The main way that we treat double vision is with eyeglasses with prisms.

Prisms are a special type of lens. What they do is they don't cause your eye to move differently or strengthen it or anything, but they shift the image that your eye is seeing to meet where your eye is so that you no longer see double. You can also wear an eye patch as needed. I mentioned that covering one eye will get rid of the double vision. An eye patch helps you to do that. A question I often get from people is about eye muscle exercises. Unfortunately, these generally do not work, not only in Parkinson's but also in people who have double vision for other reasons.

The reason for that is that the eye muscles are fundamentally different from other muscles of the body in a way that means they can't really be strengthened or exercised more than they already do. In fact, our eyes are such that we use all of our eye muscles all the time. Right now, as I'm looking at my screen, I'm using all six of mine on each side, and you all are doing the same. There isn't a way to use them any more than we already do.

Next, I'll talk about reading. The reason I do this is to say that even setting individual symptoms aside, like dry eye or double vision, we know that as a whole, people with Parkinson's are more likely to have difficulty reading. That's because reading is a pretty complex and demanding task. It requires us to have clear vision, especially when we're looking at something up close. One thing that happens when we read, which you might not realize, is that every time you move from one word to the next, your eyes move too. I don't know if you've ever tried watching someone else as they read, but if you watch them, you'll see their eyes move from one word to the next.

Dr. Ali Hamedani 00:23:53
And that's important because we know that people with Parkinson's have difficulty moving their eyes quickly from one place to the next, kind of seeing where the next word is, knowing to get there quickly, and that sort of thing. But everything else really contributes to difficulty with reading, too. Dry eye and double vision also make reading worse.

Another thing to keep in mind, regardless of Parkinson's, is that everyone starts to need reading glasses after around age 40 or so. Many people will choose to wear progressive lenses or bifocals. What that means is that the top part of the lens is for distance vision, and then there's a different prescription in the bottom part of the lens for near vision, which is in this schematic here.

One thing we know is that bifocals and progressives can make it a little bit difficult for some people to read, and that's because there's a limited space that you can look through within the lens in order to see clearly up close. We know that people with Parkinson's are more likely to have difficulty finding that little area and moving within it. As a result, many people with Parkinson's benefit from having separate glasses for distance and separate glasses for reading rather than using bifocals and progressives. That's something to keep in mind when you see your eye doctor.

Another common visual complaint for people with Parkinson's is difficulty with depth perception. When I say depth perception, what I mean is the ability to perceive where things are in space in three dimensions, or to be able to look at something and get more about it than just things being side to side. The way this works is that each of our eyes only sees an image that's in two dimensions, but our brain combines those two images together in a way that produces a three-dimensional map of the space around you.

There are a few different reasons why someone might have difficulty with depth perception. One is that to have good depth perception, you need to see well with each eye individually. If one eye is not seeing well because of a cataract or because it needs glasses or something like that, then that, by definition, will affect depth perception.

Your eyes also need to be pointed at the same target. In other words, we can't have double vision because if things are doubled, then it makes it very difficult to combine them into a three-dimensional image. Finally, like I said, there are parts of the brain that are responsible for combining those two images together that each eye sees in order to see in three dimensions. We know that those parts of the brain are affected in Parkinson's.

Here are a few examples of how you might have difficulty with depth perception or how it might affect you. One is reaching for objects. People with Parkinson's might find that when they reach for something, they'll think that they're going for something, but actually it turns out that they didn't reach far enough, and it's a little further away than they thought. Some patients will tell me that they'll go to put a cup on the table, and they'll think that they're putting it in the middle of the table, safe away from any edges, but where they end up putting it is kind of close toward the edge of the table. Their partner may keep telling them, why are you putting it on the edge of the table all the time?

Driving, and especially parking, is another way that depth perception really comes to light. When you parallel park, for example, it's really important to be able to see and know how far away each car is from you.

Some people with Parkinson's experience a phenomenon called freezing, which is when they walk, especially when they first begin to walk, they may feel that their feet are stuck to the floor and they have difficulty initiating steps. We know that this is something that tends to happen, or is more likely to happen, within narrow spaces like doorways or hallways. We think there's something about space and the amount of space you see around you that affects walking and freezing.

Unfortunately, impaired depth perception is not something that can be readily fixed with either medication or glasses. The primary way of managing it is with compensatory strategies. For example, we know that depth perception improves with better lighting. When in doubt, turn the lights on. This is especially important if you're getting up in the middle of the night to go to the bathroom and are worried about navigating your steps or about falling. Lights on.

Another thing that can help with depth perception is providing some other sort of visual cues. For example, some people with Parkinson's will say that when they're going upstairs, they have a little bit of a hard time telling where the next step is. They feel like the next foot is fishing forward, and they can't tell how far away or how close that next step is. But if you have the steps brightly colored, in this example with a little yellow runner, then you can use the color to help guide you. It basically gives you visual cues for where things are to help compensate for impaired depth perception.

Just a note on driving, because I mentioned this earlier in the context of depth perception. Driving is a complex task. It requires a lot of different things, one of which is vision. In addition to vision, attention, coordination, and reaction time are also important. A question I get a lot is about vision with regard to driving in PD. The way I approach that is that Parkinson's-related visual symptoms can affect driving, particularly depth perception, as an example. But most of those effects can usually be managed just by caution.

I gave you the example of using paint or bright colors to help with depth perception on the stairs. Think of similar strategies while driving. Many patients with Parkinson's, however, do have to stop driving at some point, but that's usually not because of their vision. That's usually because of other things, such as coordination and reaction time or cognition. All that to say, driving can be affected by vision in Parkinson's, but it's usually not the main source of difficulty driving.

Dr. Ali Hamedani 00:30:07
Lastly, I wanted to talk about visual hallucinations, which you might not think of as a visual symptom per se, but technically they are because they involve vision. It consists of seeing something that is not there. Visual hallucinations are very common in Parkinson's, so up to half of people will experience them at some point in their life. What we know is that they're very frequently underreported. Many people with Parkinson's do not say that they have hallucinations unless their doctor specifically asks about them. That's because there's a lot of stigma surrounding hallucinations, and people may be afraid of being perceived as crazy or having dementia, when in reality neither of those things is true.

Hallucinations are a result of Parkinson's itself, but they can appear or worsen with certain medications, which is important to know about. They can come in a variety of different flavors. For some people, mild hallucinations from Parkinson's might consist of the feeling that someone is standing next to you or that something is moving in the corner of your vision, but you turn to your side and look, and no one's there. Some people will see a brief shadow or the shape of something passing but can't tell what it is. Often, hallucinations in Parkinson's have a familiar appearance.

They might look like animals. You might see a childhood pet or children who used to live next door playing outside. Sometimes hallucinations from Parkinson's can be very distressing. People might feel that others are trying to break inside their home or to harm them in some way. While they may initially be mild and not very bothersome, they can be very troublesome.

As I mentioned, sometimes Parkinson's medication can worsen hallucinations, so adjusting medication may be helpful. There are some other medications that can be used to treat hallucinations, too, although we generally reserve them for hallucinations that are significantly bothersome, just because we want to be mindful about potential medication side effects.

Another reason I mention hallucinations in the context of vision is that there is growing evidence that reduced visual function may be a risk factor for hallucinations. The reason I say this is that you can think of hallucinations as a balance in visual information between information that comes from the outside world, images of the world around us, and information that's stored in our brains, like images from previous memories or dreams. There is a constant balance in our brains between external and internal visual stimulation. Hallucinations essentially represent an imbalance in those two things: having too much internal stimulation.

One thing this means is that having good vision, having clearer images of the outside world, is important for suppressing or preventing hallucinations. In fact, you may not know this, but there are some people who have vision loss because of an eye disease like macular degeneration, and they can have hallucinations that are just like the ones that happen in Parkinson's, even though they don't have Parkinson's. Hallucinations in Parkinson's, we think, involve the visual centers of the brain. To a certain extent, this may also be true of hearing loss, too.

Just a note on contrast or color vision, because if you do any googling of vision and Parkinson's, you might come across this. There have been a number of studies looking at contrast acuity and color vision. I thought I'd take a second to show you how these are measured because these are things that are usually not measured when you go to the eye doctor. But if you see, for example, a news article about contrast acuity in Parkinson's, what they've done is something like this here. They've taken a chart where there are letters of the same size, but they become progressively dimmer as you move down the chart. What they're doing is asking people with and without Parkinson's how far down the chart they can go. Color vision is tested using something like this.

This is called an Ishihara color plate, and it shows a number in one color against a background of a different color. People with Parkinson's do have some difficulty with color vision when tested in this way, although again, color vision can be affected by other problems, too, not just Parkinson's.

The reason I mention this is that if you do any reading, you will come across some articles that talk about how both contrast acuity and color vision are reduced in Parkinson's compared to people without Parkinson's. But I actually find that this is largely asymptomatic and not a source of all that much difficulty with vision, although, for what it's worth, having difficulty seeing things under low conditions of brightness can come out when driving in the evening or something like that.

Just a brief discussion of hearing in Parkinson's. Hearing, in general, is less well studied than vision when it comes to Parkinson's disease. There are some studies that suggest that people with Parkinson's may have mildly reduced hearing compared to people without Parkinson's. That's especially true of early-onset PD.

Independent of actually being able to hear things, we do know that people with Parkinson's may also have some difficulty telling where those sounds are coming from. When you hear a car approaching, you can hear that it's coming from one side, so you know to look to that side and look out for it. But people with Parkinson's may hear that car just as well, but they may not tell exactly which side it's coming from.

Like I mentioned earlier, like vision, hearing impairment may also be associated with hallucinations. The mainstay of treatment for hearing loss is hearing aids. Again, there's a certain amount of stigma around that. Some people are self-conscious and may not want to use hearing aids because they're visible, but I think that's outweighed by the benefits that better hearing has on your health overall.

Finally, I want to conclude with a couple of questions that I get often from my Parkinson's patients about vision. One is, when I take my glasses off, I can't see well, but then when I put my glasses on, I see fine. Is this related to Parkinson's, or is this the sign of a concerning eye problem at all? The answer to this is no. Needing glasses is related to changes in the shape of the front of your eye and nothing else. It does increase with age, but as long as your vision can be corrected with glasses, that's fundamentally reassuring against it being Parkinson's-related or related to any other eye problem, for that matter. Needing glasses is not anything to be concerned about.

Another question is that patients might say their eye doctor told them they have another eye problem, like cataracts, glaucoma, or macular degeneration. Is that condition related to Parkinson's in any way? The answer to that is also no. Those conditions that I mentioned earlier are all associated with age, and because Parkinson's is also more common with age, they are pretty common in people who have Parkinson's, and they do cluster together a lot.

Some of these diseases, like glaucoma and macular degeneration, are technically neurodegenerative conditions of the eye. Parkinson's is also a neurodegenerative condition, but of the brain. As a result, there has been the suggestion that there might be some underlying causes for the two that are the same, but this isn't something that's really been shown for sure yet. In general, we think of these as mostly unrelated.

Finally, a reminder that cataracts are correctable with minor surgery, and it's important to know that Parkinson's doesn't disqualify you in any way from any sort of eye treatment, such as cataract surgery. If anything, I think that having better vision is even more important for your overall health if you have Parkinson's.

With that, I'll conclude here. This is a picture of Pennsylvania Hospital, which is the oldest hospital in the U.S. and is where our Parkinson's clinic is located. Thank you all again, and I'm happy to take some questions.

Dr. James Beck 00:38:17
Thank you very much, Dr. Hamedani. That is a tremendous amount of information, and I think it's going to be really a lot of gristle for people to mull over. I know that having the opportunity to download the slides and look at them later is going to be quite helpful. Hopefully people are seeing my screen. I think that just stopped one second, and I'll start again, just because we have some other things to share as well.

Questions are pouring in. Lots of people have some things naturally related to vision because I think that's what a lot of people are experiencing. It's amazing, when people can experience all kinds of problems, but as soon as their vision gets affected, they really are very aware of it. It's very clear that we're really dependent upon our vision to get through.

You mentioned the vision problems that people experience with Parkinson's are subtle. It's very clear that we're generally not talking about the front part of the eye. I thought you made it very nice when you mentioned one example of how to differentiate some of those issues, which is covering one eye. I think it's important probably for the audience to know that it's not closing one eye. It's actually covering one eye, because when you close it, I think that can affect your vision as well when trying to understand this stuff.

Do you recommend that if people are experiencing some vision problems at home, and they're listening to this and say, I've got some vision problems, what's your first recommendation? Chances are, because they have Parkinson's, they probably have dry eye. Is it worth them going out to the drugstore and investing five to ten dollars in some drops to see if that helps? Or should they do this kind of thing and say, well, my double vision is still happening, so that is a stronger indication to try, or when do they make that leap to say, I should go see a specialist about this?

Dr. Ali Hamedani 00:40:14
It's a great question. The part that I said about covering one eye or covering the other is specific to double vision only. That doesn't really help with other visual symptoms quite so much. If you're seeing double, if you're seeing two of the same thing, then you can try covering one eye or covering the other and seeing what happens.

Artificial tears are essentially harmless. There's the inconvenience of putting them in, and that's about it. It certainly doesn't hurt to give them a try. But in general, I think if you're having any difficulty with vision of any kind, it is a good idea to see an eye doctor. Like I said, pretty much everyone, especially over the age of 65, should be seeing an eye doctor every year anyway.

That starts sooner if you have certain conditions. If you have diabetes, you need to see an ophthalmologist every year, period. If you have a strong family history of glaucoma, then you should be seeing an eye doctor every year, period. I think seeing an eye doctor is always a good place to start first. If you've seen them recently and are still having these problems, then yes, maybe giving eye drops a try is a good start.

If you've seen your eye doctor and you don't have a good explanation for your visual symptoms yet, or things aren't quite adding up, then that would be the time to think about seeing a neuro-ophthalmologist, or that's usually when an ophthalmologist would be referring someone to me.

Dr. James Beck 00:41:38
Okay, great. That gets to my next question then. Should someone who's having trouble, and this is coming from one of our viewers, can a regular ophthalmologist diagnose some of these vision problems? When do we go see a specialist? Do they wait for a referral, or should they go straight to someone with your unique expertise?

Dr. Ali Hamedani 00:42:00
That's a great point. All of these things, everything I talked about, is something that a general ophthalmologist should be able to diagnose and treat. Double vision is the one symptom that some ophthalmologists may not be comfortable prescribing glasses for, but usually, if that's the case, they'll suggest that you see a neuro-ophthalmologist.

Most patients who come to see me have seen their eye doctor and have discussed it with their neurologist first. I'd say start with your regular eye doctor. Most things they should be able to take care of. If there's anything they can't, they'll point you in the right direction.

Dr. James Beck 00:42:38
Great. Thank you. One of our viewers, Penny, brings up a really good point about Parkinson's and eye drops. It's one of those things that requires precision motor control. Trying to get the drops into the right spot is not always easily done. Do you have any suggestions on how a person with Parkinson's can maybe more easily, if not easily, get the drops in?

Dr. Ali Hamedani 00:43:00
That's a great point. I don't have Parkinson's, and if I ever have to put eye drops in, it's a huge struggle, too, so I can only imagine. Yes, it is challenging. One other thing that can make it even a little bit harder is that not only is there the coordination involved in putting the eye drop in, holding this small tube, and squeezing it in the right way, but you also have to keep your eyes open while you're putting eye drops in. That's very hard for us to do as it is.

When you see something coming at you, your eyes want to close. We know that the urge to close the eyes actually becomes stronger in people who have Parkinson's. It's normal to want to close your eyes when something gets close to your eye. To a certain extent, we can overcome that. We can kind of force our eyes to stay open, but our ability to do that does get harder if you have Parkinson's.

All that to say, I definitely understand that it can be challenging. This is the sort of thing that it might be a good idea to ask someone to help you with. You can lie down in bed and ask someone to help you with the eye drop.

What you can do in that scenario that would help is two things. Number one, you can, with your finger, hold the bottom of your eye and pull it down a little bit. That helps. The other is, when you're trying to keep your eyes open for an eye drop to come in, don't think, I have to keep my eyes open. Instead, think, look up. It turns out when you look up, your eyes will stay open, but you'll be looking away from the dropper, and it'll be a little bit less threatening of an image. If you're enlisting someone's help, you lie in bed, from the top of your cheek pull down a little bit, and look up. That will help your eyes stay open for the person who's putting the eye drops in.

Dr. James Beck 00:44:47
That's fantastic. Not to get super technical or really get down into details here, but does it actually need to fall right into the eye, or can it fall into the little inner part of the eye and go in? Because maybe that will help as well.

Dr. Ali Hamedani 00:45:04
The corner is also an option, actually. We do that in young children who need dilating drops in the office but aren't going to cooperate. You can put them in the corner and then blink a few times, and they will flow in as long as they get in there in some capacity.

The other thing, too, is remember, because there's no such thing as too many artificial tears, you don't have to put just one or two drops. You can put several. If some of them don't make it in, that's okay. As long as one of them does, then you're good. You don't have to ration them or worry about putting too much in. Squeeze it a bunch of times. Eventually, one of them will get there.

Dr. James Beck 00:45:42
Okay, that's fantastic. People with Parkinson's, as you mentioned, may be more likely to keep their eyes closed. Marge, one of our viewers, mentions her husband has a hard time keeping his eyes open except when he's reading or eating. They want to stay closed more often. Is that like a dystonic problem with the eyelids, or is that just something unique and she should really take her husband to see a neuro-ophthalmologist to investigate a bit further?

Dr. Ali Hamedani 00:46:17
That's a great question. That's something I didn't talk about here, but what you're describing sounds a little bit like something called eyelid opening apraxia. Eyelid opening apraxia means difficulty initiating and maintaining voluntary eye opening. In other words, someone is totally awake, but the eyes just have a tendency to want to close, and it can be a struggle to keep them open.

It is considered to be a type of dystonia, or there is a type of dystonia called blepharospasm, which can sometimes happen to people with Parkinson's, although it's more common in other conditions like progressive supranuclear palsy. We think eyelid opening apraxia might be a type of blepharospasm.

There are a couple of things you can do about that. One is, if it's not that bothersome, some people are not bothered by it, and that's okay. Your eyes are closed sometimes. As long as people know you're awake and are talking to you, that's fine.

Some people do find it bothersome because their eyes close when they want to be reading, watching TV or talking to someone. There are a couple of strategies you can try. Sometimes people find that wearing a headband around their forehead can help encourage the eyes to stay open. Wearing goggles can even help.

I mentioned that we think this might be a type of blepharospasm. Blepharospasm, which is involuntary squeezing and closing of the eyes, is treated with botulinum toxin injections into the eyelids, and that also can work sometimes for eyelid opening apraxia. For that, I would say talk to your neurologist because your neurologist may be able to do that. If they don't provide that treatment, they can point you in the right direction, whether that's with a neuro-ophthalmologist or another neurologist.

Dr. James Beck 00:47:55
Fantastic. That was great advice.

You mentioned that having the lights on is important because there could be a relationship with changes in cognition, and certainly that vision may impact hallucinations. For people whose family members are impacted with Parkinson's, and in an older population that is more likely to have other vision problems like cataracts, should they be aggressive in trying to get those vision problems corrected?

This is a question coming from Facebook. Should they be aggressive in trying to get those vision problems corrected, or if their physician says, 'Maybe we should just wait and see until it gets a little worse,' what's the approach? Because Parkinson's is in the background, should we really work on maintaining optimal vision quality all the time, or do cataracts progress slowly enough that it's not an issue and can wait until the threshold is met?

Dr. Ali Hamedani 00:48:53
With regard to hallucinations specifically, there haven't been any studies yet to show for sure that people who get more aggressive or upfront treatment of eye disease, like cataracts, have fewer hallucinations or do better. We're starting to do some of those studies to see if that's the case.

Personally, I think that it is true, so I would recommend being a little bit more aggressive about treating reduced vision, especially if you think someone is at risk for or is having hallucinations. But that's not something we can really say for sure at this time.

When it comes to cataracts, one thing to keep in mind is that cataracts are not something that happen overnight or even within a period of a year. They're something that develop over the course of many, many years. Essentially, everyone by the age of 60 or so, if not sooner, is starting to develop them to a certain degree.

In other words, cataracts are not like a disease or abnormality per se. It's a normal aging of the lens. For some people, it happens more than others. The reason I say that is that there's no such thing as cataracts being not ready one second and then all of a sudden ready to come out, or now we need it the following year. It's something that happens over time.

The threshold for how bad someone's vision is and whether it's enough to merit cataract surgery is one that is very vague, individual and up for interpretation. There are some guidelines or requirements when it comes to insurance for how bad someone's vision has to be for them to pay for cataract surgery.

All that to say, whether someone's difficulty with vision is due to cataracts can be a little difficult to tell in the beginning. But I think the most important thing is to advocate for it as a consideration, especially if someone has hallucinations.

If the ophthalmologist says they're there but they're not ready yet, maybe ask for a little bit more clarification about what that means. As long as someone's vision can be corrected with glasses, usually that means you don't need cataract surgery. But if we think it's not, then that's when you start to think about cataract surgery.

Dr. James Beck 00:51:02
Okay, fantastic. Again, thinking of some of these other vision problems, I know that a lot of times people think about small floaters in their eyes. What are those, and do people with Parkinson's have a predominant issue with those?

Dr. Ali Hamedani 00:51:19
Floaters, which you're describing, Dr. Beck, are something that's benign and generally unrelated to Parkinson's. There is a gel inside the eye called the vitreous. Over time, that gel develops little condensations in it, and those cast a shadow in your vision. Usually, people will say it looks like a strand or a little dot, kind of like a fly or something like that.

They aren't more common in Parkinson's per se. I will say, though, there is a certain amount of... everyone gets them, but not everyone is bothered by them all the time. Part of that is because our brains learn to filter out that image or ignore it. It's possible that people with Parkinson's may have a harder time ignoring the image of that little dot there. For that reason, it might seem like it's more common, but I don't think it actually is.

Dr. James Beck 00:52:13
Okay, fantastic. We've spent a lot of time talking about vision, and vision is so important, but so is hearing. I just want to touch on some of the questions coming in about hearing. I don't know if you addressed this in your talk, but can you talk about tinnitus, people hearing background noises or background sounds as part of hearing? Is it unique to Parkinson's? Is that part of aging? Regardless, how might people deal with that?

Dr. Ali Hamedani 00:52:43
Tinnitus, as you said, just refers to ringing in the ears. For many people, it's a high-pitched ringing. For some, it can be a little bit more low-pitched. In general, it's not something that we think of as being more common in Parkinson's. It is something that happens with age.

Essentially, tinnitus can happen to anyone who has difficulty hearing for any reason. It's kind of the equivalent of blurriness of vision, right? It's a little extra something that's not there. It's common in Parkinson's, but I think just as a result of the association with age.

As far as what to do about it, unfortunately, it can be very challenging. One thing that can help is, if you're having difficulty with hearing, hearing aids would be helpful. The reason for that is, like I was telling you earlier with hallucinations, we think that the better you see, the less likely you are to have these internal images.

Not to say that tinnitus is an auditory hallucination in any way, but hearing better may help to drown out, if you will, the tinnitus. Other things can help, like ambient music or plain background noises. Seeing an audiologist or an ear, nose and throat doctor may be helpful, too.

Dr. James Beck 00:54:00
Okay, fantastic. It clearly sounds like having good vision and good hearing is important, so people who have those issues should seek treatment to get that addressed with hearing aids if necessary. I understand they can be rather compact these days compared to what they have been in the past, so that's hopeful for those who might be self-conscious of that.

You mentioned that people with young-onset or earlier-onset Parkinson's may have more issues with hearing compared to the broader PD population. Jen reports that her husband is having these issues, as you described. He's having a harder time with louder and punctuated sounds. Is he becoming sensitive to that? Is that something that's unique to Parkinson's, or what can you talk about there?

Dr. Ali Hamedani 00:54:56
That's a good question. I'm not sure. The difficulty in early-onset PD that I mentioned, the studies primarily look at how well someone hears. But it sounds like you might be describing something a little bit different, which is sensitivity to sound.

That's something I don't think has been very well studied in Parkinson's. But what I will say is that, as many of you know, people with Parkinson's have a tendency, when they speak, for their voice volume to be softer. There is some evidence that how loudly we speak has something to do with how loudly we perceive outside noises to be.

It may be that people with Parkinson's, especially those who become used to speaking very softly, become more sensitive as a result. You're used to hearing yourself speak very softly, so now sounds from the outside sound much louder than they should be, or something like that. But that's one where we don't totally have all the answers.

Dr. James Beck 00:55:51
Okay, interesting. Again, thinking about hearing, is there anything you recommend as far as assistive devices beyond hearing aids to help people? Is there a special type of phone that people can use? Are there other things like that? Parkinson's is isolating enough, and not being able to hear and engage in conversation is certainly compounding that.

To still talk with loved ones, is it as simple as using something like AirPods or some other type of device where you can keep the sound right at your ear? What would you recommend?

Dr. Ali Hamedani 00:56:27
I think hearing aids, or as you said, earphones where, if you're plugged into your phone, you can turn the volume up, are going to work for most people. Special assistive devices that really amplify noise are typically reserved for people with very, very severe hearing loss, which would be completely Parkinson's unrelated, and that would definitely require seeing an audiologist to get.

Those would be for people who are approaching the level of deafness. Yes, there are some special devices there. There are even some surgical devices, but again, that's for exceptionally severe hearing loss. For most mild to moderate age-related hearing loss, hearing aids are the main thing for that.

Dr. James Beck 00:57:11
Okay, fantastic. I know we're coming to the top of the hour, and I just want to finish up and thank the audience again and thank you for your time.

First, you hear a lot in the popular press about different colored lenses, either filtering colors or perhaps yellow lenses or blue lenses. Are those helpful at all for people with Parkinson's? Do they improve contrast enough that, for instance, orange or yellow lenses can be significant enough that people should use them, or is it more of a beauty-is-in-the-eye-of-the-beholder type of assessment?

Dr. Ali Hamedani 00:57:53
That's a great question. You're right that there is a lot out there about colored lenses or tinted lenses, and there's way more advertising than there is research on those things. A lot of it, we don't know for sure.

In general, those lenses are primarily geared not so much toward quality of vision or being able to see clearly or have better contrast, but toward comfort. Specifically, some people with migraine, or people who've had a concussion, report a lot of sensitivity to light, and they may find that certain tints reduce their headaches or eye strain. Again, it's not so much about improving the ability to see clearly, but more about comfort.

The one exception is the condition I mentioned earlier called blepharospasm, which is involuntary squeezing or closing of the eyes. That is a condition in which many people who have it report sensitivity to light, to the point where we think that condition represents oversensitivity to light, or the parts of the brain that are responsible for closing your eyes in response to bright light are oversensitive.

In that condition, there actually are some studies that show that a specific type of tinted lens, called FL-41 — the letter F, letter L, dash four one — may improve the severity of blepharospasm. If someone has Parkinson's and blepharospasm, then that might be worth looking into. Aside from that, whatever helps you see best and is most comfortable.

Dr. James Beck 00:59:22
Got it. Are those tinted lenses like sunglasses?

Dr. Ali Hamedani 00:59:23
No. FL-41 lenses are not that dark like sunglasses. They have a slightly red tint to them because they filter out blue light, so they look a little more red. They actually look pretty similar to regular glasses, but just slightly pink. You would get them from your eye doctor.

Dr. James Beck 00:59:50
Rose-colored glasses, then. It's nice to look at the world through rose-colored glasses.

Then a final question, and this is kind of a big one, so I'll throw it at you. We've talked about two senses here, vision and hearing. Is there any kind of general comment you can make about some of the other senses and how Parkinson's might impact them?

Dr. Ali Hamedani 01:00:14
Other senses? Smell is certainly affected in Parkinson's. We know that even before people develop Parkinson's, they may start to notice some difficulty with smell beforehand. Usually, taste is not a major source of difficulty in quality of life, although you may find that foods don't taste as good or need more seasoning than they used to.

One thing to know is that we often draw a distinction between smell and taste, right? Smell is when you're breathing in, and taste is when you put something in your mouth. But actually, it turns out most of what we think of as taste is actually smell, too.

The thing that lets you tell whether something tastes like chicken or fish or broccoli, the distinctive taste that things have, is actually largely smell. Taste itself is limited to things being sweet, sour or salty, things like that. All that to say, we know smell is affected, and what we think of as taste is largely smell.

Dr. James Beck 01:01:19
Okay. With that, I think we're going to thank you again for your time. Thank you to the audience for joining us today.

I just want to let you know we've completed our first expert briefing of 2022. We have a lot coming up ahead and have an opportunity to speak with everyone again on March 2, when we have a conversation about complementary therapies with Dr. Diaz, and then continuing on throughout the rest of the year. We certainly look forward to that. Don't forget to register, as you've done here, at Parkinson.org/ExpertBriefings.

We have lots of resources available for those who may need them. Our Aware in Care kits are fantastic if you may be thinking about having to go to the hospital, hopefully voluntarily as opposed to involuntarily. We have wonderful resources, including our library of materials and PDFs to download.

For those who are interested in whether their Parkinson's may be genetically related, I encourage those individuals to participate in PD GENEration, where we offer free genetic testing and counseling to people with Parkinson's. Penn Hospital is one of our PD GENEration sites.

We also have other ways to educate the community, including podcasts for those who like to do this while driving. Our PD Health @ Home series has webinars throughout the week to address many issues in Parkinson's. For those of you who are coming to us with a clinical background, we will be launching professional education opportunities as well, CME credit in particular. One of our first ones will be on genetics, which is really fantastic.

If we didn't get to your questions today, I'm sorry. We had a lot coming in and limited time. But our colleagues at our Helpline, 1-800-4PD-INFO, as well as Helpline@Parkinson.org, are ways you can send in questions to get them addressed, whether it's about vision and hearing or other issues with Parkinson's disease.

Lastly, when this ends and we're in the Zoom world, it's just going to go to black. What will happen is that your web browser will open up with an opportunity to provide feedback on your thoughts about this webinar, so please complete that evaluation.

Again, as I said at the top of the hour, we really value the input of our colleagues and our community who are living with Parkinson's disease and those who are affected by it. Please let us know what you thought of this webinar. We share it with Dr. Hamedani and with all our speakers and use that to keep improving what we do, so what we're offering remains relevant to those living with Parkinson's.

With that, I'll bid Dr. Hamedani adieu. Thank you again for your time today, and I look forward to talking with everyone again come March. Until then, take care.