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Announcer: Need reliable health and wellness information? Don't listen to the guy in the cube next to you. Get it from a trusted source, straight from the doctor's mouth. Here's this week's listener question on The Scope.

Interviewer: All right, today's patient question is from a gentleman named Ken. He says that his dad is starting to lose his eyesight, and they're concerned that his driving isn't as good as it needs to be.

So how do you have that conversation to take away the keys? It can be a scary thing to do. And to help answer this question we have Lisa Ord. She's a licensed clinical social worker. She also has a PhD in social work and is the Patient Support Program Director at the Moran Eye Center.

So how do you have that conversation?

Lisa: Having that conversation with one of your parents is probably one of the toughest conversations you're going to have, especially here in the West where we rely so much on driving and how much of our individual freedom is attached to be able to get in the car and go where you want when you want to. But the problem is that when someone isn't seeing as well as they need to be seeing, it gets frightening.

And it's not only frightening for them, but it's frightening for anybody else that's on the road or walking on the side of the road. So being able to have the conversation with your parents is very important. And to start with saying, "You know, dad, you've just had your eye checkup, and I see that it's not getting better. They can't correct it. Have you thought about other ways of getting to where you need to go other than driving yourself?"

Interviewer: And then you just pause and wait for that answer?

Lisa: And you pause and wait. Exactly. And it may be met with anger and just being able to be with that and say, "I know that this is a tough conversation, not something you even want to talk to me about." But the tougher conversation is the conversation after you've hit somebody because you didn't see them.

Interviewer: So this is a conversation that if you feel that somebody that you love is not seeing well, you need to have a . . . you outlaid a very direct approach. Are there other ways, if you don't think the direct approach is going to work with your particular loved one?

Lisa: I've had patients use different approaches. One patient said, excuse me, one daughter of one of my patients said that she finally said, "My children will not ride with you in the car. We either need to have someone else drive, or you're not going to be able to take them where you want to take them." So it was kind of like putting it in terms of, "I don't feel safe enough to be in the car with you. I don't feel safe enough for you to take my children in the car with you."

Interviewer: And that really kind of brought the reality to bear?

Lisa: To bear, yeah.

Interviewer: Is there somebody else you could involve, like a health care professional perhaps, because maybe they would be more willing to take it from a third party?

Lisa: I have a lot of patients that say, "But my license doesn't expire for another two years, so I don't have to worry about it." And that's not the case. You're still going to be very much liable whether your license is expired or not. If you're not safe to be driving, your eye care professional will have to fill out a medical form stating what your visual acuity is, and your visual field if you are not being able to be corrected to 20/40 or better. So that is something that they're going to have to do. Having the health provider have that conversation with your parent is sometimes easier because it does kind of put that onus on the healthcare professional.

The other thing is that if you really can't have the conversation, you really are concerned about your parents' driving or anyone's driving, you can make a report to the DMV, and they will take it upon themselves to have that person do a driving test.

Interviewer: Okay. All right. Probably not the way that most people would want to handle it. But I guess as a last resort . . .

Lisa: As a last resort. And I have had some family members who say their parents are so adamant that they're, you know, having extra keys made every time the keys are taken away from them, things like this. And so you're left with no other resort, except for to call in the people whose ultimate responsibility is to take away the license, and that is the driver's license division.

Interviewer: Ultimately, though, if somebody is faced with a vision impairment that could endanger them or others while driving, whatever you do, you would recommend something has to be done.

Lisa: Yes.

Interviewer: Don't leave it to chance.

Lisa: Don't leave it to chance. Not a good plan.

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Interviewer: When first faced with the reality of vision loss, life can seem overwhelming. Denial, anger, fear, grief, hurt, rejection, abandonment, those are just some of the common psychological reactions that somebody could have when faced with the reality of life without or just even with limited sight. And without proper guidance, in many cases there's a great potential for isolation, depression, and dependence. That's why it is important to intervene early if somebody's losing their vision to help avoid some of these things happening.

Lisa Ord's a licensed clinical social worker. She also has a PhD in social work and is the Patient Support Program Director at the Moran Eye Center. It sounds like that vision loss is a lot more than just a physical issue, which a lot of people obviously know. There's a lot of psychological and mental stuff going on that we might not be aware of.

Dr. Ord: It really does affect every aspect of your life. It affects how you see yourself. It affects your roles with other people. You have to grieve it.

Interviewer: Yeah. And it affects your family. It affects the individual. So I'm somebody that has a loved one that's going through vision loss. And now, because of this first little bit here, I realize that there's a lot more going on than just the physical loss of sight. So how could I better support a loved one going through this?

Dr. Ord: I think the first thing you need to do is acknowledge with them that, you know, Mom, Dad, I know that you don't see as well as you used to, and I know that that can also affect other things that you've got going on in your life, and I want to know how I can best help you if you do want help, or help you to learn how to do what you want to do without as much sight as you've had.

Interviewer: Got you. So just open that dialogue.

Dr. Ord: Open the dialogue.

Interviewer: Do you find that most times that people are pretty responsive with that, or are they like my parents? They'd be like, "Oh, I'm fine."

Dr. Ord: It's the generation. Isn't it? You know, some are, some aren't really. But even if they, you know, "I'm fine," to you, they've heard you, and they know that you're aware and that you're there and that you want to help.

Interviewer: How much should you push the conversation at that point?

Dr. Ord: I would never push too hard. I have patients who say, you know, "My family, they won't leave me alone."

Interviewer: Oh, yeah? And that's all they want, is just leave me alone.

Dr. Ord: And there's others, they're just like, you know, "I really need some help, and there's nowhere to be found." So there's a happy medium.

Interviewer: That's right. Okay. So do you have any tips on how to approach the conversation? I think you gave us one already, just open up with, "I understand that this can be an issue that can lead to other issues. How are you doing? How are you feeling? Can I help you?" What other tips?

Dr. Ord: Exactly. I think, you know, acknowledging that maybe what you've been seeing in the anxiety of, "Am I going totally blind, or am I just losing some of my vision? What's going to happen? How am I going to manage?" Those kind of conversations I think are super important to have and just opening up to them and saying, you know, "I've been reading. I've heard that things can be very difficult. And how are you doing? How are you feeling about this?" Allow them and encourage them to continue doing the things that they want to do. And there is a way of doing everything if you know how to do it without sight. Sometimes they just need some tips and tricks on how to do something without being able to see it as well as they have in the past.

Interviewer: So tell me about some of the programs that you have at the Moran Eye Center.

Dr. Ord: So we have support groups. It's very important they get a lot from being able to talk with other people going through very similar things that the individual is going through at the time. We also have psychotherapy because it is a loss. You need to grieve it. There's a lot of anxiety. There's a lot of depression, so we do counseling. We also do skills, some basic vision loss skills and how to do things. We have an orientation to vision loss once a month on a Saturday that we talk about magnification, lighting, contrast, using your other senses, giving some tips on how to do things in a different way.

Interviewer: Yeah, my dad had macular degeneration, and I didn't really realize any of these things existed, and it would have been great to have had access to that sort of thing. We're very lucky here in Salt Lake City to have access to, you know, those resources at Moran Eye Center. Somebody who's not in Salt Lake City, how can they find resources?

Dr. Ord: There is a great website. It's the American Foundation for the Blind or afb.org, and there is a directory that you can search by state to find services in your area. Every state will have some kind of services for the visually impaired and blind. Sometimes it goes through the Office of Rehabilitation, sometimes it goes through the Office of Education, but every state will have some services.

Interviewer: And it sounds like people that use these resources find them very beneficial.

Dr. Ord: Oh, very beneficial.

Interviewer: It might be difficult to get somebody there at first but well worth it.

Dr. Ord: Absolutely. If you're losing your vision, it's okay to really have some strong emotions about it. It's okay. Then it comes to a point where it's like, "Okay, what am I going to do about it?" So then you take the next steps in learning how to live life fully, even with your vision loss.

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Interviewer: Sometimes when people lose their vision, they start having hallucinations. It's a condition called Charles Bonnet Syndrome. CBS might not be well-known or documented, but it is extremely common and harmless. Lisa Ord is a licensed clinical social worker. She also has a Ph.D. in social work, and is the Patient Support Program Director at the Moran Eye Center.

So, first of all, Lisa, it's fascinating that many people might actually have this condition but don't say anything about it because they're afraid they'll be diagnosed with mental illness or dementia. So tell me more about that part of it first.

Lisa: Well, I think it's really important for people to realize that they're not going crazy. So the big difference between Charles Bonnet Syndrome and say psychosis caused from mental illness or dementia is the level of insight for number one. People realize that what they're seeing isn't really there. It can't be there. If they don't realize that when it is explained to them that this is caused because your brain hates to have a void, it's used to a lot of visual stimulation. And so it's creating this for you, then it's like, "Oh, okay." Whereas somebody with psychosis or dementia, you can't get them off of that idea that it's real.

Interviewer: And when a lot of people that have this condition are in a support group and they hear that their loss of eyesight also might be related to these hallucinations, they sigh a sigh of relief.

Lisa: Yes. Yes, because here they've kept it a secret. They haven't wanted to tell their family. They haven't wanted to tell their healthcare provider for fear that they're going to be carted off and not able to live alone anymore. A lot of our patients do live alone and quite independently.

Interviewer: Yeah. It's fascinating. So if you start losing your vision, your brain wants to see so badly that it just starts. Tell me more about how it's filling that void.

Lisa: Well, it's interesting to me. We don't know a lot about it, but what we do know is that through some fMRI studies that it's the same visual pathways that are engaged when somebody is seeing a hallucination from the Charles Bonnet Syndrome as when they're actually seeing the object. But when they're just imagining the object or visualizing the object, it doesn't engage those same pathways. So we do know that it is as if we are seeing that thing that we're seeing, and people see a variety of different kinds of things.

Interviewer: Yeah. Do you have any examples?

Lisa: Yeah. So I have a patient who saw the Grand Canyon opening up in front of her. Rather disconcerting. She knew it wasn't there, but still it was a little bit unnerving.

Interviewer: Like the ground opening up . . .

Lisa: The ground opening up.

Interviewer: . . . as if it's a Grand Canyon. Wow.

Lisa: Yes. I've had people that saw flowers or patterns. I've had a gentleman who saw a train and just passing in front of his eyes. A lot of people actually see other people, and these are not necessarily people they recognize.

Interviewer: Yeah.

Lisa: In fact, most the time they don't recognize them.

Interviewer: Can those hallucinations be dangerous?

Lisa: No. They're not dangerous at all.

Interviewer: Not even the person that thinks they see the train? I guess that's better than not seeing a train. Of course, they can't . . .

Lisa: I guess it depends what do you do with it, right?

Interviewer: Yeah. If they're losing their vision, then they're not seeing it. Yeah. Right.

Lisa: Right. But there are lots of things you can do to get the visions to go away.

Interviewer: So is there a point in vision loss where it starts to happen? Is there a threshold where if it's going to happen, it might start happening at that point?

Lisa: Well, what we see is usually people who have more of a severe vision loss also maybe a field. A visual field defect where they have a blind part of their vision and that's actually where they're going to see the hallucination is in that blind spot.

Interviewer: And do some people still see some real things and then that's also the hallucinations are on top of that as well?

Lisa: Yes. Hallucinations can be almost superimposed on top of that as well. Yes.

Interviewer: Like virtual reality in a way.

Lisa: Yes. Exactly.

Interviewer: Yeah. So is it primarily older people that get the condition, or is it just we tend to think of it in older people because they're more likely to have lost their vision?

Lisa: Exactly. It can happen to anyone who has had vision before. Your brain has to know how to see. It has to be used to that visual stimulus. But like you said, most blinding conditions are happening in the elderly or they're age-related conditions. So that's the population that we're more likely to see them in. It can happen in children.

Interviewer: What are some of the specific conditions where it starts happening? So macular . . .

Lisa: Macular degeneration . . .

Interviewer: . . . could be one of them. Yeah.

Lisa: The big one. Glaucoma, diabetic retinopathy. There's many different kinds of conditions that cause blindness. It doesn't really matter. It's not really tied to one condition or another.

Interviewer: Got you. Is it curable?

Lisa: It is not necessarily curable. There are things you can do to get the hallucination to stop. Sometimes they just stop on their own.

Interviewer: Okay. So just because it happens once doesn't mean it's going to continually happen?

Lisa: Right.

Interviewer: Okay.

Lisa: I have some patients who have it continually quite a bit. Other patients it's like, "Yeah, that's happened to me once or twice."

Interviewer: Okay. All right. And what are some of the strategies for managing it?

Lisa: So one thing that you want to do is change the lighting in your room. So if you are in a dim room, turn on the lights, open the drapes. Another thing that you can do is blink rapidly, change your location, do something else, something that engages your brain, whether it's a hobby or talking to someone else, giving your brain another kind of stimulation.

Interviewer: If somebody believes if they or a loved one has Charles Bonnet Syndrome, what should they do at that point? Should they go see an eye doctor? Do you go see somebody else?

Lisa: Well, they can go see an eye doctor. They can see their primary care, but not being afraid to mention that, "I have vision loss and I am also seeing these interesting or not so interesting visions." That doesn't necessarily mean you're crazy. And providers, even though they may have learned about this once in medical school, they don't think to ask people. So if you are a provider that works with elderly people, remembering if they have vision loss to ask, "Do you see things that aren't there?"

Interviewer: Yeah. And frame it.

Lisa: And frame it.

Interviewer: And frame it that this is . . . yeah.

Lisa: We have patients who see things that aren't there and they know that. Is that happening to you?

Interviewer: What about if you have somebody that has lost vision in your life. Is this a conversation you should have with them, just to make it safe for them to talk about it?

Lisa: Yes. I think just opening up that conversation saying, "I heard about this the other day, and I was wondering if that's ever happened to you."

Interviewer: Yeah.

Lisa: It's totally normal.

Interviewer: And I bet a conversation like that could take just a load of stress off of somebody that thinks that they're going crazy, right?

Lisa: Huge.

Interviewer: Yeah. What do you think that the ultimate takeaway that you would like somebody to have as a result of the conversation we had about Charles Bonnet Syndrome?

Lisa: I think the ultimate takeaway is that it is not as rare as we once thought. We find that about one in four of our patients with vision loss have experienced this. So talk to somebody about it. You're not going crazy.

Announcer: Have a question about a medical procedure? Want to learn more about a health condition? With over 2,000 interviews with our physicians and specialists, there is a pretty good chance you'll find what you want to know. Check it out at thescoperadio.com.