Griswold Home Care hosted a national webinar workshop on Thursday, January 30th from 4-5 PM EST titled “Adjusting to Life with Glaucoma – From Diagnosis to Daily Life.”
Join us as Griswold’s Christopher Kelly MEd, Director of Learning & Development, Thomas M. Brunner, BSEE, MBA, President and CEO of the Glaucoma Research Foundation, and Art Takahara , a person living with Glaucoma, discuss the different forms and symptoms of Glaucoma, how to recognize and treat Glaucoma, and ways to improve the impact Glaucoma has on quality of life.
The workshop features five parts:
Step 1: Learn about the symptoms, types and impact of Glaucoma
Step 2: Understand how to recognize, diagnose and treat Glaucoma
Step 3: Learn how to adjust to the emotional, physical, social and role changes that often come with Glaucoma
Step 4: Hear real stories and practical tips from a professional advocate/researcher and a person living with Glaucoma
Step 5: Access a Fighting Glaucoma Toolkit that offers innovative tools and resources for people living with Glaucoma and their family/professional caregivers
Derek: Griswold Home Care, and welcome to today’s Solution Series webinar, titled
“Adjusting to Life With Glaucoma: From diagnosis to daily challenges.”
The Griswold Home Care Solution Series webinar program is a monthly workshop, designed to provide and bring practical solutions to the fingertips of family caregivers, families dealing with these conditions, and healthcare professionals across the world.
A core component of the Solution Series webinar program is learning from you, the audience. Throughout the webinar, you as the audience will have several opportunities to share your thoughts, experiences, and insights on the topic of glaucoma via our brain-writing exercise, which we’ll discuss in just a few minutes.
First, a few housekeeping items. All of your lines are currently muted. You as the audience will, again, have several opportunities to interact with the panelists throughout the webinar, and we will also hold a formal question and answer session at the end of the webinar.
The webinar, with questions and answers, is scheduled to go 60 minutes. Again, the powerful component of this workshop are many of the presented tools that will address the topic of glaucoma symptoms, glaucoma treatment, and more detail on what is glaucoma.
The presentation, recording, and all the tools with the links will be made available in an email to all registrants with a complete transcript of the webinar a few days after the close of the webinar.
Now, to start the topic for today. January is National Glaucoma Awareness month, and we’re very pleased to have a few members of the Glaucoma Research Foundation on the phone with us today, which we’ll introduce in a few minutes.
From the front page of the glaucoma.org, which is their website, they have the quote, “January is National Glaucoma Awareness month, an important time to spread the word about this sight-stealing disease.”
As we take a look more into the topic of today, we again are very pleased to have the Glaucoma Awareness Foundation. I believe we have several members on the phone today; they are actually coming to us from San Francisco, where the foundation was founded in 1978.
Our goals for today. We plan to learn about the symptoms, types, and the impact of glaucoma. We are looking to understand how to recognize, diagnose, and treat glaucoma, and we’ll also discuss the emotional, physical, and social roles that change as an individual may be diagnosed with glaucoma.
Again, the really impactful part of this presentation is not only the expert panelists that we have on the phone, but also the tools that we’ll link you to if you are a healthcare professional, caregiver, or someone living with glaucoma.
With that, let’s move right introducing our line of expert panelists. Our first panelist is Thomas Brunner, President and CEO of the Glaucoma Research Foundation. Tom joined the Glaucoma Research Foundation in 2003 after a 30 year successful career in the ophthalmic laser business.
Since joining the foundation, Tom has helped more than double revenue and fundraising, and lead innovative research on how to understand how glaucoma steals sight and is ultimately trying to find a cure for the disease.
He received the Lifetime Achievement award from the American Society for Laser Medicine and Surgery, and has 25 years of service on their board of directors. Tom actively supports development of new products to help those with glaucoma and other eye disease, and is an adviser or board member for start-up companies in the Eye Care field.
A graduate from Lehigh University here in Pennsylvania, with a degree in electrical engineering and an MBA recipient from the University of Delaware, Tom, welcome to the webinar.
Brunner: Yeah, thank you for that nice introduction, and thank you to you and your
organization for helping us educate people about glaucoma.
Derek: Fantastic. Our next panelist is Art Takahara. Art has been diagnosed with
glaucoma, and is actively involved with the Glaucoma Research Foundation as a volunteer and committee member. He was elected to the board of directors of the Glaucoma Research Foundation in 2007.
Art is also the former mayor of Mountain View in Silicon Valley, and is the founding chair of the Glaucoma Research Foundation’s Silicon Valley chapter, which was launched in 2007. Art also serves on the foundation’s executive committee. Art, welcome to the webinar.
Takahara: Thank you, and again, thank you for making also aware of the Glaucoma
Awareness Month. Hopefully we can share our experiences today.
Derek: Fantastic. Our final panelist today is Chris Kelly, director of learning and
development at Griswold Home Care here in Philadelphia. Chris is the architect of the Solution Series workshop program. In addition, he also leads all learning and education for Griswold Home Care.
Previously, Chris was VP of Health Education at Health Ed, Director of Education at the Alzheimer’s Association, and managed multiple functions within both assisted living and nursing home facilities. I also want to welcome, and then turn the webinar over to Chris.
Chris, welcome to the webinar.
Chris Kelly: Thanks, Derek. Good afternoon, everyone. Very excited and appreciative
that Tom and Art are with us to share their expertise and experience.
I always like to start our webinars by really recognizing and thanking our audience, our healthcare providers and franchisees and company staff, professional caregivers who are working in the front lines with people with glaucoma, family caregivers who are so dedicated, and obviously the people that are diagnosed and living with glaucoma.
I want to make sure that everyone understands that glaucoma affects each person differently. You may hear about symptoms and different types of glaucoma that if you’re new to this condition, it can be scary or concerning. Just remember that each person experiences the condition differently.
Derek mentioned earlier that we have a great activity that we call brain-writing. Throughout the presentation, we will be asking questions to the audience. If you look to the right hand side of your screen, you’ll see an orange button with a white arrow. If you click on that, you’ll see a chat bar.
When we ask those questions, if you have any stories, any questions that you want to ask, stories that you want to share throughout the webinar, don’t wait until the end. Then at the end of the webinar we will go back and read all the tools and information and the stories that you shared with us. This way we can learn from you as well.
To start off, we’d like to begin with the basics. Tom, starting from the beginning, could you give the audience, and really us here at the home office, an understanding of what glaucoma is?
Tom: Yes. Glaucoma is a disease that causes blindness. It’s the largest cause of
blindness in the world after cataracts. It basically causes damage to the nerves in the back of the eye that carry the visual signals to the brain. It’s called an optic neuropathy. It damages the optic nerve in the back of your eye.
The difficult thing about glaucoma is that it really has no symptoms until serious vision loss occurs, and that vision loss is permanent. It can’t be reversed. That’s why early diagnosis and early treatment are so important.
The good news is that for most people with glaucoma, if it’s diagnosed early when there is either no loss of vision or very little, perhaps a little bit of side vision is lost, then with good treatment, careful, regular treatment, most people have their vision saved and preserved. We can’t restore what’s lost, but we can keep what you have.
The other thing about glaucoma is it tends to be associated with older people. In fact, one in 10,000 babies are born with glaucoma, and it does affect young children and it affects young adults. It’s just primarily an age-related disease.
I like to say as we get less young, we all may someday end up with glaucoma. In fact, by the time we’re 85 years old, about one in eight of us will have glaucoma.
Chris: Thanks. Great information, Tom. Down the bottom of several of our slides
throughout the presentation, you will see tools that we’ve highlighted. These are tools, as Derek said, that you can access when we send the presentation out afterwards.
We’d like to feature one tool, very relevant to Tom and Art, and that is the page on the Glaucoma Research Foundation’s site entitled, “What is Glaucoma.” As we slowly scroll here, could you talk about some of the things that our audience could find when they visit this page on your website?
Tom: Yes. I would really encourage your listeners or the participants on the webinar to
visit our website. As you mentioned, it’s glaucoma.org, and I know there is a link in the webinar material that will take people to the website.
One of the important features is, up in the right hand corner, the search box. You can type anything in there that you would like to find out about, and click on that search button and it’ll find an article from one of our newsletter, it’ll find information about glaucoma that you might that want to learn.
Let’s say you type “treatment” in there and it’ll go right to care and treatment. If click on that first one, you’ll see it’ll talk about the different methods of treating glaucoma.
The key person in all of this is your doctor, of course. Working closely with your doctor, you can generally preserve your vision. We’ll talk more about what the different treatments are for glaucoma, but the website has all types of information about the different kinds of glaucoma.
It also, if you click on the research progress tab up at the top, it has reports on the research that we fund. That’s one of our major activities, is funding innovative research to understand why those retinal ganglion cells and nerves in the back of your eye, why are they damaged by that high pressure? Which is one of the main risk factors for glaucoma.
Why is it that some people who have perfectly normal eye pressures still get glaucoma and even lose vision and can even go blind?
Chris: Great, thank you, Tom. Just from the standpoint of educational design, it’s a
tremendous website. Very easy to navigate. Definitely recommend that you visit this site. We also have given you another tool that you can access later.
The National Institute of Health has a great resource called Medline Plus, and some more information, just a basic overview of glaucoma.
Tom: Just want to add one thing. I do know, and I think Derek said it, that the diagnosis of glaucoma is a scary thing. You have a lifelong disease that is vision-threatening, and that’s why it’s so important to visit our website and to request our free materials, our booklet on how to live with glaucoma or our newsletter.
I just would really encourage your affiliates and healthcare providers and others that it’s a nice way to help newly diagnosed patients. When a person is told they have glaucoma, they don’t hear much else during that particular appointment. It’s afterwards, when they’re back alone at home or with their family, that they start to realize, “oh my gosh,” and they’re worried. Are they going to go blind?
Giving them access to our website is designed to reassure them that no, you don’t have to go blind. With proper treatment, you can preserve your vision.
Chris: Great. Again, great recommendations, Tom. We appreciate it.
Tom, I know just from the years that I’ve worked with people with glaucoma, one of the common questions in the area that can be confusing is exactly what happens in the eye when someone develops glaucoma. Could you walk through that for us?
Tom: Yes. You have a wonderful diagram there, and what you see is like a cross-section
of the human eyeball. The eye is divided into a front part, which is called the anterior chamber, and it’s the part in front of the lens and in front of your iris. It’s between the cornea, the clear part of your eye, and the iris and the lens.
In the back part of the eye, behind the lens, that’s called the posterior part of the eye. That is filled with a jelly-like substance. If you, right close to the lens, just below the lens and actually circling the lens, is where the fluid is generated that carries nutrients to the different parts of the eye.
That fluid flows from that [ciliary] body, where it’s made, out through the pupil, which is an opening of course, into the anterior chamber and then down into the angle between the iris and the cornea, where it exits the eye.
It doesn’t come out—some people think “oh, that’s my tears.” No. the fluid that’s generated in the eye actually drains into your blood supply, into the venous side of the blood supply. What happens in glaucoma is that for some reason, the fluid doesn’t drain as well as it should.
If you think of the eye, think of it like a hard rubber ball. If the fluid can’t drain out of it, then it will stay in the eye and it’ll start to build up. The only thing that can happen is that pressure in the eye increases, because the eye can’t expand.
When that pressure increases, it pushes on the blood vessels coming into the eye, it pushes on the back of the eye, on the nerves, and it pushes particularly on the optic nerve.
If you think of the eye as if it were like a balloon, and you blow up a balloon through the neck of the balloon, when you squeeze the balloon, the weak part is where you blow it up. Where there’s an opening into the eye.
It’s the same in your eye. That optic nerve is—it’s not an opening, but it’s a weak part of the eye. When pressure builds up inside the eye, it can push on that optic nerve and actually cause it to be depressed. That’s called “cupping.” Sometimes patients will hear doctors talking about trying to measure or approximate whether the optic disc is cupped or not. That can be a reflection of the pressure.
That’s what causes the damage then to the nerves and causes loss of vision.
Chris: Great. Very clear and great description for us, Tom. Appreciate that. A tool that
you can access after the webinar, we have a video here, a great animation, if you’re someone that learns more from videos, from the National Eye Institute that enhances what you’ve just heard from Tom.
I know, Tom, you mentioned anxiety and uncertainty for people that are wondering if they have glaucoma or are wondering what they can do potentially to reduce the risk. Can you talk through some of the common risk factors with glaucoma?
Tom: Yes. The most common risk factor is one that we fortunately have little control
over, and that’s our age. Every day, as I said earlier, we do get a little less young. That is definitely the primary risk factor. As we reach 60 and older, we do find a higher incidence of glaucoma. It is an age related disease.
The other main risk factors all certain ethnic groups, and we don’t understand why, but it seems like people of color have a higher prevalence. They can be at six to eight times higher risk for glaucoma than northern European or people of Caucasian ethnicity.
Another risk factor is family history. One of the things I like to encourage people to do is to talk about glaucoma in your family at holidays or at gatherings where the family’s together. It’s so important to let your family members know if someone actually has glaucoma, or if your great-aunt [Tilly] lost her vision from glaucoma.
That means family members are at higher risk, and should get eye checks more frequently and at a younger age. Again, if it’s diagnosed and discovered and treated, you don’t have to lose vision.
There are other risk factors on the slide which you can also learn about, but they’re significantly less a factor than these three.
Chris: Great. Thanks again, Tom. Another common question, just given that there are so
many different types of glaucoma, what would you say is the most common type of glaucoma?
Tom: Primary open angle glaucoma is far and away the most common. About 90%
of glaucoma is what’s called primary open angle glaucoma. If you remember that cross-sectional slide that we looked at, the picture of the eye, the angle that’s referred to here is the angle between your iris and your cornea.
Open angle glaucoma means that that angle is wide open, so the drainage area is wide open and fluid can easily get out.
The other type, one of the other types of glaucoma, is so called angle closure glaucoma. In angle closure glaucoma, the iris is closer to the cornea, and it can sometimes actually pinch off the drainage area.
One of the bad parts about angle closure glaucoma is that you can have what’s called an acute attack. Meaning, let’s say you go into a movie theater at night and your pupil opens up because it’s dark, and the iris goes back into the angle.
Let’s say you happen to have a narrow angle already, and it blocks off the drainage, and the pressure builds up.
That’s the one type of glaucoma that you will have symptoms, because it will hurt. You will self-refer. You’re going to go to the emergency room and tell them, “my eye is very painful.” Fortunately, again, they can treat it. They can bring the pressure down.
Then there’s a very simple surgical procedure which can be done in a doctor’s office to actually put a little hole in the iris, using a laser. It can just be done as an outpatient procedure right in the doctor’s office.
They use a special lens that can see through your cornea. You shine the laser light through the cornea, onto the iris, make a little hole there, and now there’s another pathway for that fluid to get out of the eye so that the iris won’t be pushed forward.
You can open up the angle by doing what’s called a laser iridectomy, and you can generally help people that potentially have angle closure or narrow angles. In this case, it’s usually a one-time treatment and you don’t need to take medications.
You can just have a surgical procedure that will provide another path for fluid to equalize between the front and back part of the eye, and open up that angle.
Chris: Thanks, Tom. Given our time constraints, Tom walked through the two most
common forms of glaucoma. This slide captures, for those of you who might have more rare forms, several other types.
We’re not going to get into detail about those types, but there is a tool located at the bottom of this slide that you can access when you receive the presentation after the webinar that walks through great, great feedback and information and resources related to the different types listed here.
At this point, just again, want to thank Art for joining us. I know it takes a lot of courage to come onto a webinar with so many people and share your personal story. Art, before we even get into the interview, we really appreciate it.
Art, we talked through the risk factors, what glaucoma is, what the types are. Could you talk a little bit about what type of glaucoma you have, and just from an emotional standpoint, what it was like when you first heard the diagnosis?
Art: Maybe I can first start off by just a very short story, because mine’s a little unusual
story about how I was diagnosed with glaucoma.
Art: I was diagnosed about 10 years ago, and at that time I had been consistently
seeing an ophthalmologist prior to that for quite a few years, and it was never diagnosed.
One day I was at a shopping mall with my wife, and she was shopping and I was just walking around the mall. Walked into an optician store, looking at some frames.
They asked me, “Do you want to get an eye check?” I said “Why not, I’ll be here for a while.” I went in there, and a young lady who was a doctor there had just mentioned to me that she had just graduated from a really prestigious university, down in Southern California.
She says, “I’ve been here for three months now.” I thought to myself, “that’s all I need.” I have someone who has no experience. She started the testing, and halfway through the testing she stopped the testing and said, “I think you have a serious eye problem.”
She says, “We’re not going to go any further, I’m not going to charge you for the test. You need to go see, possibly, at least a glaucoma doctor, because you could have a glaucoma or some other kind of an eye disease.”
She referred me to one. A month or so later, I was diagnosed with glaucoma and found out that I did have some vision damage at that time.
One other point I wanted to bring up, which was I think I have what is considered normal vision, normal tension glaucoma, which means that when you take the pressure check, my pressures are very low, like 10 or 12.
Whereas many people who may have been associated with glaucoma may have numbers in the high teens or in the 20s or the 30s. Mine was very low. A normal pressure would be something like seven or eight, so that’s why sometimes glaucoma’s also called ‘the silent disease’, because it can be hard to detect, especially if you have normal tension glaucoma.
Chris: Art, just as Tom mentioned, when you first hear that you have glaucoma, what is
that like on an emotional level? How do you react when you first hear that term?
Art: Well, my first reaction was a little bit of a big concern, but again, one doesn’t
know what the outcome will be. As time goes on, and in my particular case, my vision had dropped but it had not dropped to a level that was below, let’s say 20/40.
I would still be able to drive and do the normal things I had done before. I actually was not too concerned for, probably, at least the first five or six years of that ten year period of time.
Chris Okay, thanks again.
Tom: Chris, I think if I can jump in for a second, I think Art makes an important point
there, which is that glaucoma, we have to remember that it starts typically in the far peripheral part of our vision, in the side vision.
Because we have two eyes, and because we can turn our heads, we don’t notice it. We compensate for that early loss. A person can lose as much as 40% of their vision, which can never be recovered, and not notice it. That’s all the more reason why regular eye exams, and in Art’s case even seeing an eye doctor regularly, still hadn’t actually picked up his glaucoma.
Sometimes it can even be overlooked. Another reason why it’s important for a patient or for someone getting an eye screening to actually tell the doctor if there’s glaucoma in their family, or to ask for a complete eye exam, looking especially for glaucoma.
The other thing I just would want to comment here is because Art didn’t see any changes, he said he wasn’t that concerned. What sometimes happens is when people don’t see changes and aren’t
concerned, sometimes they don’t use their eye drops.
It’s one of these things. It’s kind of like flossing your teeth. When they’re falling out, it’s too late. You have to floss when you don’t have any problems. With glaucoma, it’s the same thing. When you see nothing going on, it means the eye drops are working.
Chris: Thanks, Tom. Very important point, great takeaway. What we’d like to do now is
do our first brain-writing. You heard Art very poignantly share his story in terms of his initial journey to diagnosis.
If you’ve been diagnosed with glaucoma, the link to your chat bar, and we would just love to hear what your experience has been, the type of glaucoma that you’ve had, and any learnings that you can share with us that we can repeat at the end of the webinar.
I know we’ve talked a little bit of diagnosis, Tom. Could you just in more detail talk about the steps that a person should go through to get a formal diagnosis?
Tom: Yes. I think the key thing is, we call it a complete dilated eye exam. There really
are five parts to it. One of them is measuring the pressure inside the eye, and that’s referred to as the intra-ocular pressure, or the shorthand is IOP.
Everyone who has glaucoma generally knows their own eye pressure or their IOP, and typically there’s a target pressure for each person which, again, as you said early on Chris, each person has a different experience and different pressures, so there’s no magic pressure that means you won’t lose vision. For each patient it’s different.
Measuring eye pressure is one of the things. Another is doing perimeter-y [SP], where anyone who’s had glaucoma or has had a complete eye exam has had that test, where you look into a bowl and then lights flash on and off. You push a button when you see the light.
Essentially what that is doing is testing your vision all around your retina, from the far side retina to the center, and seeing if you have any areas where you no longer have good vision.
The third important measurement is the thickness of the cornea. It turns out that the thickness of the cornea can have an impact on an independent risk factor for glaucoma. The appearance of the retina is also important, and that’s one of the reasons to dilate your pupil or open it up so the doctor can look in, and he can actually see your optic nerve and see the condition of your nerve.
Earlier, I talked about cupping. That’s one of the things they look for. They look at the color. The condition of the nerve and the retina is important in the diagnosis. Then finally we talked earlier about the area where fluid drains out of the eye, that angle between the cornea and the iris.
There’s a special little lens that a doctor can put on your cornea. They put some numbing drops on so you don’t feel it, and then they can look in and see that angle. It’s called gonioscopy. They can look in and actually see the drainage area and see if it looks open and clear, or see if it’s being blocked or if it’s narrow.
Those are the five things that we recommend for a complete eye exam.
Chris: Great, thank you, Tom. Towards the bottom of this slide, once the presentation
comes out, we’ve given you two tools. One is a great web page with the Glaucoma Research Foundation related to five common tests for glaucoma.
Then obviously your first steps should be to talk to your primary care provider, but we’ve also given you a search engine so that you can search by zip code to find ophthalmologists, other care team members, that can support you with your vision and potentially diagnose you.
Let’s shift now and talk about glaucoma treatment. Tom, we get a lot of questions about the treatment recommendations, which treatment people should start on. Could you just give us a landscape of the treatment options for people diagnosed with glaucoma?
Tom: I’m happy to do that. Again, I want to emphasize that I’m not an eye doctor. I’ve
worked in the field for more than 30 years, so I’ve learned a lot, but the treatments are something that are worked out best with your doctor to get the right treatment for each individual person.
The most common treatment today for glaucoma are eye drops. There are a variety of eye drops that can be used. Most of them you take once a day, some of them you might have to take twice a day. They will effectively lower pressure, which is really the only way we can treat glaucoma today, by reducing pressure in the eye, and by watching your visual field by looking at tracking over time how your retina is doing, and by these other examinations.
Looking at the optic nerve and so on. The doctor can determine if the drugs are effective in the treatment.
The second most common treatment today is actually a laser procedure that targets that drainage area, and actually results in—if you think of it as if it were like a filter that maybe is getting clogged up and the fluid can’t get out. You can do a very simple, it’s an office procedure, again easily done in the doctor’s office.
An outpatient procedure, it’s called laser trabeculoplasty or selective laser trabeculoplasty. With that, they actually treat with a laser around the eye, and pressure goes down by the body’s normal mechanisms of cleaning up the blockage if you will. It’s a way of reducing pressure by improving the outflow.
Then if both of those methods fail—that is, over time they become less effective and the doctor still wants to lower the pressure in the eye—there are also now a wide variety of surgical treatments which essentially provide a bypass, if you will. A hole in the eye that lets fluid out of the eye, not going through the normal exit path. It’s like a new drainage mechanism.
There are a variety of these now and more coming out all the time to try to reduce pressure with the least amount of side effects. Those are the main approaches today to treating glaucoma.
Chris: [inaudible 00:32:45]. Of course at the bottom of this slide, particularly for
healthcare providers, we’ve given you access to the American Academy of Ophthalmology, preferred practice guidelines for both angle closure and open angle glaucoma. Great reference, great resource, particularly for providers.
Tom, once someone gets diagnosed, as they’re forming their care team particularly around glaucoma and vision, who are some of the key providers people should work with? What do each of those providers do?
Tom: Basically, the key caregivers for glaucoma are really ophthalmologists and
optometrists. Ophthalmologists are medical doctors, so that means they’re trained in the diagnosis and treatment, including surgical treatment, of a whole variety of eye diseases, including glaucoma.
Typically, the ophthalmologist is the person who treats the more complicated glaucomas, and there actually are a subset of ophthalmologists called glaucoma specialists who do a fellowship. They’re even more knowledgeable about glaucomas. Sometimes even an ophthalmologist will refer a patient to a glaucoma specialist, depending on the severity of the disease.
Then there are a group of assistants if you will who work with the ophthalmologist in his practice to help, and they’re listed on the slide.
The other doctor who does a lot of care for glaucoma patients is the optometrist. I think in the country there are probably twice as many optometrists as ophthalmologists.
The main difference is that optometrists are trained in vision care, and in the diagnosis and treatment of refractive errors. That is, correcting nearsightedness, farsightedness, astigmatism.
They prescribe and dispense or prescribe and sell glasses and contact lenses. They also very often do screenings for various diseases, and they will look at your retina. They can be a first level diagnosis, potentially, for glaucoma.
I think that’s what Art was referring to, actually. An optometrist was the person who detected his glaucoma. Often optometrist in many states in the country can prescribe the glaucoma medication.
Again, they will most likely refer a patient to an ophthalmologist or a glaucoma specialist if the glaucoma seems to be progressing. That is, if more vision is being lost.
Then the other group, opticians, their main job is fitting and selling eyeglasses. They don’t figure out what kind of correction you need, but if they are given a prescription . . . they’re like the pharmacist who fills the prescription. The opticians fill the prescription for the ophthalmologist.
Although vision rehabilitation therapists are very important, and one of the other key messages I think that we want to give people who have glaucoma is you do lose vision, there are lots of ways to get help in all the different skills of daily living.
It doesn’t mean you can’t still be a fully functioning person in your community, just because you have glaucoma or have some vision loss. That might be something Art might want to comment on, because I know he’s had some impact from his glaucoma.
Art: Let me just [this is ] Art, as far as the optometrists, I think just my
experience recently is the fact that with glaucoma being even a greater disease nowadays, that in the universities and all, there’s a higher visibility of education for optometrists at that level.
Many optometrist now have higher levels of equipment for both the pressure checking and for the field tests, and they also have digital picture taking and all that that at least are giving the optometrists who see more people, then, with glaucoma a higher level of potentially able to diagnose that.
One other point I wanted to make, if I can just go quickly backwards, was on the eye drops that Tom mentioned. Because I feel as a patient that the eye drops is really one of the biggest challenges that we who have glaucoma have, because number one, it’s very difficult to always get all the drops into the eye.
Many times when we put the eye drops in, we feel that it’s getting not totally into the eye itself. Many times, the [inaudible 00:37:39] of the eye drops into the eye is sometimes only, maybe, 40 or 50%, not 100%.
We think we’re getting a lot of drops in there and we’re not. Sometimes I suggest to many patients that if you feel like they’re on your eyelashes, that maybe you need to put another drop in and make sure that you have sufficient eye solution into your eyes.
The other one is the fact that, in my case, I only take one or two drops. I try to time it so that I do one at night before I go to bed and one in the morning, so I can remember when I have to administer the drops.
Unfortunately, there are many glaucoma patients who take sometimes up to six different medications a day, and it’s a real challenge for some of those people, especially because so many of them are senior, too. To be able to remember when to take the drops and to take them all is a real continuing challenge that we all have.
Chris: Thanks, Art. Really appreciate it. I know . . .
Tom: Just a . . .
Chris: Go ahead, Tom.
Tom: Just to add to your comments, which were wonderful, again I would refer people
to our website, glaucoma.org. If you just put in that little search block, “eye drops” or “taking eye drops,” there’s a lot of information in there about how to best put the eye drops in your eye.
Because it is difficult. It sounds like something easy to do, but for some people even squeezing the bottle is hard. For others, it’s very easy for that drop to land on their cheek. There are some tricks, and I think that was a very important point. Because if you don’t get the drops in your eye, they’re not going to help you.
Chris: Great. Thanks to both Tom and Art for all that great guidance for us.
We’re going to shift now to talk about just the impact of glaucoma on quality of life. We do a lot of research for our webinars, and we saw, aside from the Glaucoma Research Foundation, not a lot of research, not a lot of publication, just around the psycho-social impacting glaucoma can have.
We want to make sure that we capture that in this webinar. We found a great quote on the Glaucoma Research Foundation’s site that we’re showing here. We bolded two statements that I think is really impactful.
One, we have a person with glaucoma saying, “I’m not going to let glaucoma get in my way. I will do things and use visual aids, whatever I need to do to continue to try to lead as normal a life as possible.”
There’s an acknowledgment that there is the need to adjust and that there is a challenge, but you take away a fighter’s mentality. Towards the end, just a statement out to other people with glaucoma, don’t think you have to slow down or do less.
We think that’s really, really impactful and really captures the spirit, Art, of some of the experiences that you’ve already shared with us.
We found one article that really captured this idea of the impact, from 2008, from Peter Aspinall and his colleagues. They surveyed a number of people with glaucoma, and they asked them what were the most important life changes or challenges that occurred as a result of glaucoma.
Just to quickly go through these, there are several which, again, shows how impactful glaucoma can be. Difficulty reading, particularly seeing small details. A lot of fear and uncertainty around falling. That can lead to isolation, and also isolation due to lack of mobility.
Driving challenges. Experiencing darkness or glare when experiencing bright light. Bumping into things or tripping over things. Frequent steroid use. Art, you had mentioned the frustration. There are so many comments about the fact that people know they need to use the eye drops, but when you have to use them so frequently it can be a challenge.
Difficulty with working, maintaining work roles. Activities of daily living like cooking, cleaning, taking care of yourself. Number of people that had to either stop working, volunteering, and became less social. Then from an emotional standpoint, very common challenges such as anxiety, depression, fear and uncertainty.
Art, I’m just wondering as I walk through of these, are there any that rise to the top for you that you’ve experienced over the years that you’ve had glaucoma?
Art: If I can just give a very personal kind of situation that just happened in the last
few years. Two years ago, I finally decided voluntarily to not take my driver’s test and no longer drive. I felt that it was too dangerous to be able to get in an accident, or maybe even run someone over. I stopped driving.
That wasn’t too bad because I had my wife, who ended up being my driver, so everything was fine until 18 months ago when my wife was diagnosed with cancer and passed away. At that point now I was solely dependent on friends and public transportation and all.
I quickly had to get into a situation of being more independent. Having to be able to get into things like electronic devices, whether they’re our phones or tablets or magnifiers, all these things that are available.
The other thing I recommend for many people are things like mobility training, which is training to—whether it’s on how to walk, cook, or how to do things in the kitchen. There are so many tricks out there to use. These can be done by either training at many organizations that have it available, or you can maybe buy it.
There’s a book on it, or there are videos on there. You don’t have to wait until you’re at a point where you’re almost blind to be able to say you need mobility training. It should be done very early, especially when you have sight. It can really helpful and help you to be safe even crossing the street.
Chris: Art, thanks for that. I know that was very personal, and we’re all very sorry for
your loss. Again, just the courage and the persistence and the fortitude really comes through. We appreciate it.
To those of you on the webinar who also, like Art, live with some of the impact of glaucoma, particularly changes in the way you’re living your life with work and things like that, it would be great to hear, from a brain-writing standpoint.
Go into your chat bar and let us hear how it has impacted your life, and things that you’ve done to adjust. That way again we can learn from all of you.
Tom, I know we’ve gone through a lot of information. We always like to present an action plan that gives people with glaucoma and their families a path to take. Could you walk through some of the more common impactful aspects of an action plan that can help people with glaucoma and their families?
Tom: I would say number one is too work with your doctor. Be a partner with your
doctor. I realize that’s not directly on the slide; we talk about regular eye exams and regular office visits. Glaucoma is a lifelong disease. Typically you’ll be seeing the same doctor every three months or six months or every year.
Establishing that relationship and sharing with your doctor what’s going on and doing the things that your doctor directs you to do, using those eye drops and so on, is the single biggest thing you can do to fight glaucoma.
The second thing is really knowing and keeping track of your medications. Not just your eye drops, but all of your medications. Any of your doctors that you go to, they should know about all the other meds that you use. Because some of these medications can interact and can have an impact on other medications that you might take or other diseases.
Be sure to keep track of all your different medications. Sometimes the easiest thing to do is just take all the bottles with you, or all the meds with you to your doctor and let him see directly what it is you’re taking.
Clearly the others on here are just important no matter what it is, whether it’s glaucoma or anything else. You want to have a healthy lifestyle. Eat well, eat healthy. Stay active, that’s very important.
Don’t smoke. I don’t see that one on here, but boy, smoking is definitely bad for any eye-related diseases and bad for health in general. Those are the main things. A healthy lifestyle helps everything.
Chris: Great. Thank you, Tom.
Art: Tom, if I can add one other one is that within the doctors and the
ophthalmologists, there are specialists that are called low vision specialists out there who can, in their offices, have a lot of the tools out there of all the different kind of magnifiers and all that out there, right in their offices.
They are specialists in doing testing and all that for the utilization of any kind of aids and tools that may help people in their lives.
Tom: Absolutely, Art. Good point.
Chris: Great point, Art.
The next slide, we just wanted to give you a series of tools that really help with adjustment. We’re going to feature—one of those tools comes from a great government organization, the National Eye Institute.
This web page and this organization came highly recommended from Tom. We just wanted to make sure that we showed the site. It’s a great partner, great government resource. Make sure that you visit this site along with the Glaucoma Research Foundation when the presentation comes out to you.
Then we’ve also given you links to adaptive equipment, support groups related to glaucoma, advocacy organizations like the Glaucoma Research Foundation. Then for the readers out there, some great books related to glaucoma.
We want to make sure that we share some key takeaways. We shared, again, a lot of information. Before we get into our Q&A and talk about our organizations, we want to make sure that we capture a few things.
Number one, in most cases has no symptoms. Regular eye exams are important, which Tom shared in a great way and emphasized. Glaucoma can lead to vision loss if it’s not diagnosed and treated early. Treatment education, support advocacy, and adaptive technology can help people with glaucoma to maintain their routines and quality of life.
Derek: Fantastic. Great inform from all of our panelists. We now would like to take a few
minutes to open up the panel for question and answer. If you’re a healthcare provider and have any questions for our panelists, someone living with glaucoma, or simply want to share your story—we already have a lot of comments in the chat bar.
We’ll take a few moments here and begin reading any questions or comments. Additionally, all you have to do is press the orange or red “Go To Webinar” arrow. That should be on the top right of your screen. You press that, the panel will expand, and there is a chat function at the bottom of the panel in which can type your questions to any of our panelists.
We’ll now take a moment to compile the Q&A.
Tom: Derek, while you’re doing that I would like to just mention that eye exams should
be done every few years. As you get older, perhaps every year, so that glaucoma does occur in an older age, and just because you’ve had no evidence of glaucoma for many years doesn’t mean you won’t develop it later on.
Regular eye exams, perhaps every year over the age of 65 and certainly starting at age 40, every two to four years, a regular eye exam is important.
Art: Especially if by genetics you have a family member that has previously had
glaucoma. They encourage even children to be possibly checked, even earlier.
Tom: That’s right, Art. We had one really sad story of a young girl who was diagnosed
with glaucoma, African-American, and they found it when she got her physical to go to college. When she told her parents, they said, “oh yeah, your uncle was blind from glaucoma, and your grandmother had glaucoma.” It had never been talked about in the family.
Art’s point is very important. If there’s glaucoma in the family, get your eyes tested at a younger age. And tell the doctor that there’s glaucoma in your family.
Derek: Fantastic. Thanks, Tom and Art. We have a lot of great comments from the
audience here. The first is from Phyllis Johnson, who had said, “I’ve been living with glaucoma for years, and have an expert keeping tabs on my condition.”
Fantastic. Phyllis is already taking the recommendations of our panelists here and making sure that she’s working with her prescriber.
We also have additional questions here. Chris, do you want to read the next question?
Chris: Art, one question for you. This person asks, what is the most challenging aspect of
Art: For me, it’s probably the daily living and being able to go out with public
transportation and all, and getting to and from places. It’s easy to say you have family members and all, but as we all know your children are very busy. Many times you’re on your own to be able to get to places or do things.
That’s why some of this mobility training and all these things I think is very important, so that you can be somewhat independent. So you can do the things you want to do.
Derek: Fantastic. Thanks, Art. We also have another comment from Tom Lynn [SP], who
comments, when we were brain-writing about symptoms, Tom mentioned “I can tell the time of day to within an hour as to how my eyes feel.
My experience can only be described as my eyes are fatigued. Once I take my drops, my eyes feel relief. I wonder if anyone else in the audience experiences this. Tom.”
Tom, great question about the use of the drops. Also I think Tom’s specific question, and maybe Art or Tom have some feedback on this, is about the interval at which the drops are given. Is that normal, where the pressure will build up and fill, and then that’s an indicator that the drop needs to be administered?
Art: I really don’t normally see that much difference if my eyes are tired, whatever
else, to when I put eye drops in that all of a sudden, the vision is increasingly better very quickly.
One only thing I could say as a general comment is I think those of us with glaucoma have what we call just good eye days and bad eye days. Some days, you have a day in which things seem kind of cloudy out there and all. You think, geez, my eyes are not too good. Other days they’re very bright.
It seems like there’s not any solution to that other than maybe the following day it goes back to normal. I seem to get that quite often; just days where your eyes don’t see very well.
Derek: Great, thanks, Art. Tom, a question I guess when you were going over the
different eye care professionals. What is the best way for someone who thinks they may have glaucoma to access the ophthalmologist, optometrist, optician? How do they get to the eye care professional?
Tom: Typically, my personal preference, what I would do, is try to get a referral. I
would ask the family doctor, or if a person has a doctor, just a family practice or a general practitioner, I would ask them for a recommendation.
The other place is the web, and if you or a friend or relative have access to the web, you can go to—there are a number of sites that you can go to. I think you have one of them on the webinar to look up for an ophthalmologist or an optometrist or a glaucoma specialist.
That would be my suggestion, either a referral from another specialist that you’re working with or another doctor, or looking on the web.
Derek: Great, thanks. A couple other comments from the audience here. One is from Sy
Bayliss [SP], who mentions, “I’ve had problems with the typical field of vision test. It uses flashing lights. Pressure tests have been normal.
I can see lights in my periphery, but those vertical and horizontal. However, I have lost the ability to identify objects in those areas. My ophthalmologist has just put me on glaucoma watch.”
We also have another comment from Ron [Hentman], who says, “I have pigmentary glaucoma. I see my eye doctor a few times a year and take my eye drops daily. Vehicle lights at night bother me the most. I am 54. What can help me? Thanks [inaudible 00:56:13].”
Chris: Tom or Art, any recommendations related to the challenge of vehicle lights at
Art: In many cases, I’ve heard of some people who may use some other kind of lenses.
Some have used an amber lens or all that. What I caution people on using any other kind of lenses, and some people have even said sunglasses.
I think some of these other lenses are somewhat dangerous, because they do lower your ability to see. To me, having a clear lens is the best thing. I haven’t seen anything myself that I know about. I would say talk to your eye doctor about if there’s anything he can do, because I have not found anything.
I know sometimes you get this star effect with the headlights and all that. I have not seen anything that would help with that, myself.
Tom: I think Art, your point of talking to your doctor. The best thing you can do with
any concern about your vision or night driving is talk to your doctor. Describe what’s happening. I always encourage people to write the question down before you go to your doctor, so you’ll remember it and you have exactly the question you want to ask. Then they may be able to help you.
It could possibly be that there’s something else going on that is causing the halos or the glare. That’s the most important thing, would be to work with your doctor.
Derek: Great, great recommendations, Tom and Art. Tom, with a couple minutes to go we
would love to allow you to talk a little bit more about the Glaucoma Research Foundation, if you could walk us through your mission and some of your services. That would be great.
Tom: Yes. I think you can see our mission is really to prevent vision loss from
glaucoma. We do that by investing in research to find better treatments, and through education and awareness of which this webinar is a wonderful example.
That’s what we do. We raise money. We’re a nonprofit. As Derek mentioned, we were founded in 1978 in San Francisco. We’re a national organization. One of the important things that people ask is, “where does the money go,” and we’re very proud that 85% of every dollar goes toward our programs of research and education.
Fifteen percent goes for overhead if you will, paying my salary and our rent and so on. We get top ratings from the independent evaluators of nonprofits. We’re a four star Charity Navigator nonprofit.
There’s a picture of our founders, three ophthalmologists, all glaucoma specialists who started the glaucoma research foundation. Basically as I mentioned it’s all about the research.
We have a couple different types of research that we fund. We fund a little bit like venture capitalists, we fund new ideas and new investigators who typically have a very hard time getting money for their research. We call those our Shaker Grants.
Then we also fund collaborative research efforts, which we call our Catalyst for a Cure, where we do something that’s very unusual in the research community. We bring together a group of scientists from different backgrounds to work together to try to understand glaucoma and find solutions.
I’ll just end with the most important thing that we do, I think, which is fund research and spread the word. We do that also with our [inaudible 01:00:01] newsletter. You can, if you go to the next slide, you can see this. The newsletter is available on our website, and the website again, I encourage you to visit it. It has all kinds of information.
If you’d like to sign up for our free newsletter, you can do that on our website. Also you can download our booklet, “Understanding and Living with Glaucoma,” which much of the information in this webinar comes from that booklet.
Thank you again for the opportunity to share this information.
Derek: Fantastic. Thanks, Tom, for that information as well and for telling us more about
the Glaucoma Research Foundation. To end here, before I pass it over to Chris to close, is a little bit about Griswold Home Care.
We are a mission-driven home care company. Our headquarters is here out of Philadelphia. We’re currently present in 36 states across the country. Our founder, Jean Griswold, she was the wife of a Presbyterian minister. She’d been under Griswold home care out of her living room after a diagnosis of multiple sclerosis herself.
After seeing the need for home care in the group of her parishioners, she started Griswold Home Care back in 1982. Today, we support aging and disabled adults with mostly non-medical care. That includes personal care, companionship, and housekeeping services for those individuals who need just a little bit of additional help to remain safe and independent at home.
We refer caregivers across the country who have experience supporting those with non-medical and chronic conditions, including glaucoma. If you or a loved one need any help, you can access our website at griswoldhomecare.com, or our 24/7 helpline, 1-800-Griswold.
With that, I’d like to turn it over to Chris to close the webinar.
Chris: Great. Thanks, Derek. Just very quickly want to thank again Tom for your
expertise and time and all of your work on the presentation. Art, for again your courage, persistence and just sharing your stories today, and our audience for joining us today. We wish you all the best moving forward, particularly those living with glaucoma. Have a great evening.
Derek: We’ll now end the webinar. Thank you.
For more information, please review our Glaucoma Resources.