Judi Delgado, the executive director of the Macular Degeneration Partnership, is often asked to recommend books about age-related macular degeneration (AMD). People who have been newly diagnosed, along with their family members, are interested to learn about what they can do to save their sight, how the eye disease might progress, and personal experiences from others that have the disease. Here is a list of books about age-related macular degeneration that Judi has put together, including authors, links to Amazon, and the available formats for each title.
We hope you will find this list useful and share it with people you know dealing with AMD. Also, if you know any books you think others might enjoy, please list them in our comments section.
Judith Delgado
Executive Director
Macular Degeneration Partnership
A Program of Discovery Eye Foundation
What it’s like to see with the CentraSight telescope implant
Like many people, I’ve set goals in my life, both professionally and personally and like being an active and engaged member of my community and my country. I love to teach: I taught history, geography and special education for years in Banning, California and now live in Moreno Valley, California, with my wife of 32 years, Kay. I love my country: I’m a proud veteran of both the Army Reserve and the Navy. And I love an open road. My wife and I traveled the country visiting historical monuments in our 32-foot RV. I guess I’ve got what you’d call a real zest for life. But, over the past twenty years, all the things I enjoyed doing in my life, even the simple day-to-day activities, started to decline because I was slowly losing my vision due to age-related macular degeneration. For example, six years ago, my wife took over all the driving because I couldn’t see well enough to drive safely.
Roy Kennedy
That was a real turning point for me. My wife had to help me so much because I just couldn’t see. I needed help shopping because I couldn’t read labels. I started to avoid social situations, like visiting with friends because I was embarrassed that I couldn’t recognize faces any longer. As you can imagine it was heartbreaking for both me and my wife.
But then my doctor told me about a treatment I wasn’t yet aware of called the telescope implant. The device is very small (smaller than a pea!), and it is implanted in one eye to restore vision. My doctor explained that it works like a real telescope in that it magnifies images, which reduces the effect of the blind spot on my straight-ahead vision. The other eye does not get an implant because you need to keep some peripheral vision to help with orientation and balance. This sounded like science fiction! But I wanted to see if it could help me and I decided to give it a try.
I worked with a great team of specialists, who were part of a treatment program called CentraSight. My retina doctor, cornea surgeon, low vision optometrist and a low vision occupational therapist all counseled me about what to expect from the outpatient procedure, particularly afterwards. For example, I learned there was a significant amount of occupational therapy required to adjust and become proficient at using my new vision. I also was warned that my sight would not be like it was in my youth. I wouldn’t be able to do everything I used to nor would I be able to see, differently, the minute I opened my eyes.
I had my surgery in early 2013. The cost for the telescope implant and visits associated with the treatment program were covered by Medicare, which was very helpful. Thinking back, I was nervous on surgery day, but afterwards, I was told by my occupational therapist that I was one of the quickest to recover from surgery. I give lots of credit to my OT folks as well as my wife who helped me with the exercises at home. The most amazing part is being able to see my wife’s face again for the first time in six years! I’ve regained the ability to do many everyday tasks, like reading, working on my computer and watching old Westerns on TV. My wife and I are even back to traveling the open road in our RV (which she drives)!
I would recommend people learn more about the telescope implant to see if it might help them, the way it helped me. There are CentraSight teams across the country. When you call 1-877-99-SIGHT or visit www.CentraSight.com a trained CentraSight information Specialist will point you to the team closest to your home and can even help schedule the appointments for you. The telescope isn’t for anyone, but it can make such a difference in your life. It certainly did in mine.
In the United States, more than 40,000 corneal transplants are performed each year with a high success rate in comparison to other types of organ transplants. According to the Eye Bank Association of America (EBAA), keratoconus was the leading cause of anterior lamellar keratoplasty (DALK/ALK partial thickness transplant) and was the fourth most common indication for penetrating keratoplasty surgery in 2012 (their last reporting period).
Advances in technology have led to increasingly successful outcomes for all who need corneal transplants. New long-term research of corneal transplant patients have shown that the age of corneal donors is no longer as important as once thought by eye health providers. According to a study funded by the National Institutes of Health, ten years after a transplant, a cornea from a 71-year-old donor is likely to remain as healthy as a cornea from a donor half that age.
The Cornea Donor Study (see www.ClinicalTrials.gov), funded by NIH’s National Eye Institute (NEI), was designed to compare graft survival rates for corneas from two donor age groups, aged 12-65 and aged 66-75. It was coordinated by the Jaeb Center for Health Research in Tampa, Fla., and involved 80 clinical sites across the United States. The study enrolled 1,090 people eligible for transplants, ages 40-80. Donor corneas were provided by 43 eye banks, and met the quality standards of the Eye Bank Association of America. The study found that 10-year success rates remained steady at 75 percent for corneal transplants from donors 34-71 years old. In the United States, three-fourths of cornea donors are within this age range, and one-third of donors are at the upper end of the range, from 61-70 years old.
Prior to this study, many surgeons would not accept corneas from donors over 65. Since the supply of young donor corneas is limited, these study results are encouraging for those who face a corneal transplant . The high level of success rates using corneas from older donors (over age 60) greatly increases the pool of donated corneas and corneal tissue available for transplant. In 2012, corneal donors under age 31 comprised less than 10 percent of the U.S. donor pool. “Our study supports continued expansion of the corneal donor pool beyond age 65,” said study co-chair Edward J. Holland, M.D., professor of ophthalmology at the University of Cincinnati and director of the Cornea Service at the Cincinnati Eye Institute. “We found that transplant success rates were similar across a broad range of donor ages.”
“Overall, the findings clearly demonstrate that most corneal transplants have remarkable longevity regardless of donor age,” said Mark Mannis, M.D., chair of ophthalmology at the University of California, Davis, and co-chair of the study. “The majority of patients continued to do well after 10 years, even those who received corneas from the oldest donors.”
Floaters can be anything seen in your vision that moves “to and fro” with your eye movement. The movement is not stationary compared to a blind spot which is fixed or stationary in your field of vision. Example of floatersThe key is that the position changes with eye movement. Size, shape, color, etc. don’t matter. Anything that moves in your vision is called a floater.
Remember, if you experience new floaters; please see an eye doctor for an examination.
Here are some common causes of floaters:
Posterior Vitreous Detachment (PVD)
Retinal Tears
Blood (Vitreous Hemorrhage) can be caused by;
Advanced Diabetic Retinopathy
Retinal Tears
Retinal Vascular Occlusions
Inflammation or Infection
Asteroid Hyalosis
Posterior Vitreous Detachment
Aposterior vitreous detachment (PVD) is a common cause of floaters. A PVD occurs when the vitreous separates from the retinal surface. This is a normal event and will eventually occur in everyone. Retinal tears are more likely to occur right after a PVD has started.
The vitreous is usually a clear watery gel. As we age, enough of the proteins in the vitreous liquefy and degenerate. Eventually, there is a physical separation of the vitreous from the retina due to this liquefaction.
“Floaters” can develop due to opacities/haziness due to the aging gel which is no longer absolutely clear due to changes in the optical properties of the gel or the interface between the vitreous and water inside the eye.
Tears in the Retina Retinal tearscan cause floaters by either causing a small vitreous hemorrhage, or by dislodging cells into the vitreous which are normally located underneath the retina.
Vitreous Hemorrhage
Blood in the vitreous can also cause floaters. A so-called vitreous hemorrhage may result from either a retinal tear or advanced diabetic retinopathy. Occasionally, retinal vascular occlusions can also lead to bleeding in the vitreous.
Blood in the eye often absorbs, but only your doctor can determine the exact nature of the floaters and if they are associated with a retinal tear. It’s impossible for you to tell the cause of floaters without a proper dilated eye exam.
Inflammation
Certain types of inflammation or infection can cause significant floaters. Actually, these are white cells which migrate to the retina and vitreous and can be seen a floaters.
Asteroid Hyalosis
This is a common entity where lots of fine white opacities are suspended in the vitreous. In most cases, these are not noticed by the patient. Sometimes, however, the so-called asteroid bodies are so dense they prevent good examination of the retina. Other times, especially after a PVD, the asteroid bodies are noticed and patients may complain of floaters.
New Floaters: Evaluation
All new floaters must be examined by your eye doctor within 24-72 hours after occurring. Even if the floaters disappear in that time frame, you should be examined to look for a possible tear in the retina.
Again, you, the patient, can NOT tell the cause of the floaters or if you’ve sustained a retinal tears. Retinal tears can cause a retinal detachment – a potentially blinding problem.
Treatment of Floaters
There are no medicines or eye drops to treat floaters. Most doctors advise simply putting up with the floaters.
For patients who have chronic problems with floaters, I recommend a vitrectomy. A vitrectomy is an eye operation, performed by a retinal specialist. The operation is comparable to a cataract operation in terms of safety and possible complications.
There are a handful of doctors who perform Yag laser to break up floaters.
We don’t often give our eyes as much thought as we should, that is until something goes wrong and our vision is affected. But when you learn more about eyes, you realize just how amazing they are. Here are a few facts you may enjoy:
1. Eyes began to develop 550 million years ago. The simplest eyes were patches of photoreceptor protein in single-celled animals.
2. Your eyes start to develop two weeks after you are conceived.
3. The entire length of all the eyelashes shed by a human in their life is over 98 feet with each eye lash having a life span of about 5 months.
4. To protect our eyes they are positioned in a hollowed eye socket, while eyebrows prevent sweat dripping into your eyes and eyelashes keep dirt out of your eyes.
5. Your eyeballs stay the same size from birth to death, while your nose and ears continue to grow.
6. An eye is composed of more than 2 million working parts.
7. Only 1/6 of the human eyeball is exposed.
8. Corneas are the only tissues that don’t have blood.
9. The human eye weights approximately just under an ounce and is about an inch across.
10. An eye cannot be transplanted. More than 1 million nerve fibers connect each eye to the brain and currently we’re not able to reconstruct those connections.
11. 80% of our memories are determined by what we see.
12. Eyes heal quickly. With proper care, it takes only about 48 hours to repair a minor corneal scratch.
13. There are about 39 million people that are blind around the world.
14. 80% of vision problems worldwide are avoidable or even curable.
15. Humans and dogs are the only species known to seek visual cues from another individual’s eyes, and dogs only do this when interacting with humans.
16. A fingerprint has 40 unique characteristics, but an iris has 256, a reason retina scans are increasingly being used for security purposes.
17. People who are blind can see their dreams if they weren’t born blind.
18. “Red eye” occurs in photos because light from the flash bounces off the back of the eye. The choroid is located behind the retina and is rich in blood vessels, which make it appear red on film.
19. 80% of what we learn is through our eyes.
20. Eyes are the second most complex organ after the brain.
Susan DeRemer, CFRE
Vice President of Development
Discovery Eye Foundation
Do you feel like your vision is getting worse? Do you feel like colors are not as vibrant as they used to be? Are you having more trouble with glare? If you have any of these symptoms, you may be experiencing the effects of cataracts.
Cataracts are a normal aging process of the crystalline lens in the eye. Well you may ask — what is the crystalline lens? It is easiest to think of the eye as a camera. The eye has a lens (actually two) – the cornea (the front window of the eye) and the crystalline lens (inside the eye). It also has an aperture (the colored iris), and film (the retina). All these structures work together to focus light and allow us to see – just like a camera. When we are young (less than 40), the crystalline lens is flexible. This is why we are able to see distance and then near without the need for reading glasses. The crystalline lens is able to change its shape depending on where one is looking.
Figure 1 – Slit-lamp photo of a visually significant cataract.
As we age, the crystalline lens becomes less flexible, thereby causing one’s near vision to be more blurry. This necessitates the need for reading glasses. As the crystalline lens become less flexible with age, the lens also starts to become more yellow and can also become cloudy. When the yellowing and/or clouding become visually significant, we refer to this as a cataract (figure 1).
Are cataracts dangerous? The simple answer is no. In the vast majority of cases, a cataract can be monitored until it becomes visually significant (drop in vision, glare, decreased contrast, vision related difficulties with day to day activities, etc). However, there are a few instances in which cataract removal is a medical necessity. Routine examinations by your eyecare provider can help you determine if you are at risk for these less common instances.
Figure 2 – Intraoperative photo during cataract surgery (prior to cataract removal).
What can I expect during cataract surgery? Do you have to replace the crystalline lens with anything? Cataract surgery involves removing the clouded crystalline lens (figure 2) and replacing it with an artificial lens known as an intraocular lens (IOL) (figure 3). Surgery generally takes 10-15 minutes under a mild sedative, and you don’t have to stop any of your current medications. Anesthesia is achieved with drops and you will only feel mild pressure during the surgery. IOLs come in different styles – Standard IOLs grossly correct your vision and you can fine tune your vision (distance and near) with glasses post-operatively;
Figure 3 – Intraoperative photo during cataract surgery (after implantation of an IOL).
Toric (astigmatism correcting) IOLs allow for increased spectacle independence, but glasses will still be needed for distance or near; Accommodating IOLs “flex” within the eye to decrease your dependence on distance and near glasses; Multifocal IOLs allow spectacle independence for distance and near. I always counsel patients that there is no perfect IOL and you have to determine which IOL is best for your particular situation. Your doctor can help you decide which IOL is best for you. Generally, cataract surgery is extremely safe. Your doctor will discuss particular risks specific to your eye.
How do I know if cataract surgery is right for me? The best way to know if you have a cataract and if it time to consider surgery is to consult with your local ophthalmologist. If you have experienced a recent drop in vision, that is not correctable with glasses, cataract surgery may be able to restore your vision!
Sumit “Sam“ Garg, MD
Medical Director
Vice Chair of Clinical Ophthalmology
Assistant Professor of Ophthalmology
Gavin Herbert Eye Institute – UC, Irvine
Have you been staring at a computer all day and your eyes are tired? Have allergies been making your eyes watery and itchy? Are your contact lenses irritating your eyes? If you have experienced any of these conditions, you have probably turned to eye drops for relief.
While eye drops are an easy and effective means of treating a number of eye issues, there are many different eye drops available, both over the counter (OTC) and by prescription. It is wise to know what your underlying condition is before trying to get relief. If your eyes are red and you may want to try a decongestant eye drop, which will shrink the tiny blood vessels in the “whites” of your eyes (sclera), but they also cause dryness so may not be a good choice if you wear contact lenses. For lens wearers you are better off with a re-wetting drop to lubricate the eye and lens making you more comfortable. Another problem with the decongestant eye drops is over use – which can cause irritation and an increased tolerance that could lead to more redness.
If you suffer from allergies and antihistamine eye drop would be the best choice for relief from itchy, watery, red and swollen eyes. They work by reducing histamine in the eye tissue.
Lubricating eye drops, also known as artificial tears, are for short-term relief caused by temporary situations such as eye strain form computer use, being tired or being outdoors in windy and/or sunny conditions. If the condition is chronic, a prescription eye drop will be the best choice.
It is important to remember that if any of the above symptoms worsen or continue for an extended period of time, it is time to see your eye doctor to determine the underlying cause of your issue and to rule out eye disease. Postponing a visit could also lead to an eye infection.
Prescription drops are used to treat a wide variety of eye diseases such as glaucoma, dry eye and the symptoms of ocular herpes. They are also used to help with healing from cataract surgery, corneal transplants, glaucoma surgery and even Lasik. it is extremely important to use them as often as your ophthalmologist recommends to improve healing and prevent infection.
Because of the ease of applying eye drops researchers are working toward using them to treat other eye diseases. Ocular herpes symptoms are sometimes treated with antiviral and steroid drops. But this only is targeted at the symptoms and not the underlying cause, the herpes simplex virus. Lbachir BenMohamed, PhD and Steven Wechsler, PhD at the University of California, Irvine, Gavin Herbert Eye Instittue have been working to determine what reactivate the herpes simplex virus and develop an eye drop that would either stop the reactivation of the virus or kill it.
Using eye drops to treat age-related macular degeneration (AMD) is also being explored. Researchers at the Institute of Ophthalmology at University College London are working with nanoparticles to deliver anti-VEGF drugs such as Lucentis and Avasitn to the back of the eye via drops. “The study shows that Avastin can be transported across the cells of the cornea into the back of the eye, where is stops blood vessels from leaking and forming new blood vessels, the basis for wet AMD.” While researchers in the Department of Ophthalmology, Tufts University School of Medicine in Boston “reported in their “proof of concept” study that topical application of a compound called PPADS inhibits damage to the tissues in the eye that impacts the individual’s ability to see color and fine detail, as well as reduces the growth of extraneous blood vessels in the back of the eye related to AMD.” It would work in both dry and wet AMD reduce the need for direct injections.
Eye drops, when properly applied, can provide temporary relief from symptoms of eye discomfort. But if the symptoms worsen or continue for an extended period of time, consult your eye doctor. To make sure you apply the eye drops correctly check out the article in our February 2013 newsletter for 12 easy steps to get the drops into your eyes and avoid infection.
One final note – keep your eye drops out of reach of children. Eye drops come in small bottles that are the perfect size for small hands and don’t have the same security tops found on other medications. The FDA has warned that ingredients found in some eye drops that relieve redness have caused abnormal heart rate, decreased breathing, sleepiness, vomiting and even comas in children five and younger that have ingested them. If you child has swallowed eye drops, call the Poison Help Line 800-222-1222.
Susan DeRemer
Vice President of Development
Discovery Eye Foundation
Employment Challenges Faced by Older Persons with Visual Impairments
Growth in Number of Older Persons with Vision Loss
May is designated as “Older Americans Month” and last year’s theme “Unleash the Power of Age” seemed an appropriate title for this article with the number of baby boomers who are coming down the pike. In fact, according to the U. S. Bureau of Labor Statistics, the annual growth rate of “boomers” (those 55 and older) is projected to be 4.1 percent, 4 times the rate of growth of the overall labor force. Indeed, the Governmental Accountability Office estimates that by 2015 (just next year!!), older workers will comprise one-fifth of the nation’s workforce.
At the same time, the number of older persons with vision loss are growing dramatically due to age-related eye conditions such as macular degeneration . The 2011 National Health Interview Survey (NHIS) Preliminary Report indicated that an estimated 21.2 million adult Americans (or more than 10% of all adult Americans) reported they either “have trouble” seeing, even when wearing glasses or contact lenses, or that they are blind or unable to see at all. The survey also indicated that 12.2% of Americans 65 to 74 years of age and 15.2% of Americans 75 years of age report having loss of vision.These estimates only include the non-institutionalized civilian population.
Economic Burden of Vision Loss and Aging According to Prevent Blindness, disorders of the eye and resulting vision loss result in a major economic burden to society, for all ages, but most dramatically with people 65 years of age and older: 77.27 billion of direct and indirect costs . Loss of productivity is estimated to be almost $25 billion for the 65 plus population.
Older People Want to Continue to Work The loss of productivity costs are of particular concern given the fact that older people, including those with vision loss, want to continue to work. In fact, older persons are staying in the labor market beyond the usual retirement age. This is due to many reasons: people are living longer and often are in good health; because of the downturn in the economy, some need to work beyond the usual retirement age to meet to supplement diminished retirement funds; and some are looking for social engagement through the workplace.
Assets Versus Perceptions Experienced workers who are older offer many assets to employers such as: an understanding of the expectations of employers; respect for co-workers and supervisors; loyalty; and skills and knowledge based on prior work experience. However, a major dichotomy is occurring in our society regarding older workers: “…companies are struggling with the large numbers of older workers who are retiring, and that the brain drain is a matter of concern to many…While the loss of experienced staff is a challenge that all companies must address, technology has improved the workplace and the work environment by enabling workers of all ages to complete work from other locations…Evidence shows that ageism, stereotypes, and misinformation about mature persons continue to be issues across all segments of society, including the workplace. … studies revealed that the positive perceptions characteristic of older workers held by managers include their experience, knowledge, work habits, attitudes, commitment to quality, loyalty, punctuality, even-temperedness, and respect for authority. These same studies also reveal some negative perceptions held by managers about the mature worker: inflexibility, unwillingness or inability to adapt to new technology, lack of aggression, resistance to change, complacency….. While the results of these findings may appear confusing or contradictory, they clearly focus on the precise and delicate balance between positive and negative perceptions that, depending on the industry or work environment, may affect a manager’s decision to hire, retain or advance an older worker.”
Kathy Martinez, Assistant Secretary of the Office of Disability Employment Policy at the Department of Labor, feels that this dichotomy, as it relates to people with disabilities, will not really change until disability becomes more of an environmental issue than a personal issue and that workplace flexibility is critical in terms of time, place, and task. (“Public Policy and Disability: A Conversation about Impact”, Disability Management Employment Coalition conference, April 1, 2014).
Challenges of Obtaining and Retaining a Job for Older Persons with Vision Loss In addition to the negative perceptions noted above, older persons who experience vision loss, have additional challenges: learning to live with vision loss, dealing with the workplace to retain or obtain a job, working with a disability including having to learn new skills such as speech access for a computer, getting transportation to and from work (if they keep or land a job), dealing with co-workers and even managers who often don’t know what to say or do. Those persons with low vision or no vision whose medical condition is stabilized and with appropriate reasonable accommodations as assured by the Americans with Disability Act (ADA), can continue to be productive members of the workforce thereby contributing to the profitability of the business and to their quality of life.
An informal review of the latest available data submitted by public vocational rehabilitation agencies indicates the following: In 2011, there were 9609 blind and visually impaired individuals who obtained jobs through the vocational rehabilitation agencies; of these 505 (or 5%), were 65 years of age and older. We truly need to “unleash” the power of age in this country!
Resources These resources listed can help older individuals with vision loss, employers, and professionals working with individuals with vision loss. The American Foundation for the Blind (AFB) hosts a family of web sites with information that can help older persons with adjusting to and living with vision loss, information on how to find and apply for jobs, adaptations to the work environment and assistive technology and workplace accommodations, and mentors who are blind or visually impaired and are willing to assist others with career choices. These sites can help individuals interested in working or retaining employment as well as employers seeking to know what to do. AFB has a directory of services for each state, which includes state vocational rehabilitation agencies charged with helping people with vision loss with the adjustment and career needs.
Other Resources Department of Labor funded Job Accommodations Network http://askjan.org/
JAN provides consultation to employers and job seekers about the wide range of accommodations which can help to select the appropriate technology and job restructuring accommodations. Department of Labor Office of Disability Policy http://www.dol.gov/odep/topics/OlderWorkers.htm Section on research and reports on employment of older workers.
Gil Johnson
Contributing author to VisionAware ™
American Foundation for the Blind
Last year Discovery Eye Foundation spoke to Dean Lloyd, who lost his sight to retinitis pigmentosa (RP), about his experiences with the Argus II “bionic eye.” After FDA approval, when the article came out, more people across the country have been fitted with the Argus II, using its 60-electrode system to help them regain some part of their vision. Researchers continue to try and improve upon the “bionic eye” such as this research for a 24-electrode version from Australia. Here is that article:
Dean Lloyd wearing the Argus II
As one of only 30 people in the world with a “bionic retina,” Dean Lloyd has gained a bit of notoriety of late. The Argus II Retinal Prosthesis System received US market approval from the FDA on Feb. 14, and Lloyd has been part of the clinical trial since he was implanted with the device in 2007.
Lloyd’s vision difficulties began in the early 1960s, while he was in medical school at the University of South Dakota. He realized he wasn’t seeing the same thing as his classmates when looking through a high-powered microscope. He was misdiagnosed with Usher Syndrome, a rare genetic disorder that can result in deafness, blindness and dementia. While he was later correctly diagnosed with the less-dire x-linked retinitis pigmentosa (RP), he was asked to leave medical school due to his vision impairment.
“I had a moment of self-pity, then I needed to do some introspection to figure out how to find my future,” he says. “I decided I can’t give up on life. My brain works well … If your brain works, it can solve a lot of difficult problems. I realized I would survive.”
Seeing Stars
Armed with a BS in chemistry and an MS in bio-chemistry, Lloyd became a research chemist, then a software engineer. At the time, RP was having only one real effect on his life: reduced night vision. “I always thought people were seeing more stars than I saw. They’d see the big dipper and little dipper, and I didn’t see any dippers,” he recalls. Other than being extra-careful when driving at night, Lloyd’s daily life remained relatively unaffected until 1974, when he developed cataracts at age 34.
Lloyd’s wife decided she did not want to deal with any impact the disability would have on his ability to support their family. “She left and got the best divorce lawyers,” he says. “The court thought, because I was visually impaired, I wouldn’t be able to take care of my children. There were a lot of issues around disability and parent-ability in the mid- to late 70s.” Because of his vision loss, Lloyd lost custody of his two children. Believing disabled people were not treated fairly and seeing “the power of the court over people in their everyday lives,” Lloyd decided to go to law school. He passed the bar in 1982, “as a disabled person in a closed room,” and has been practicing law for more than 30 years.
He underwent two cataract surgeries, and a pair of convex lenses he wore on his nose was used in place of the actual lenses that had been removed from his eye. He had no difficulty with daytime mobility for nearly 14 years. But in 1989, he lost image formation. “I got an edema within the macula area, which didn’t go away,” he says. “I lost the ability to form images — that’s the point when you lose the opportunity for safe mobility.”
Lloyd had already been practicing law for seven years, and RP didn’t stop him. “I had quite a bit of experience in the courtroom,” he says. “I am fortunate to have a good memory, and I memorized everything I used there. I usually work with a junior or associate attorney; I do all the talking, and they handle all the documents and things. It didn’t change my career.”
A cane helped with his mobility, and for a few years, he says, “A doctor at Stanford pulled me in for some non-FDA experiments, because he knew I was a four-eyed guinea pig and was willing to try anything that might help RP.” None worked.
Lloyd was involved with several vision-related organizations and followed the progression of research and experiments to see if any might benefit him. In early 2007, he attended a Foundation Fighting Blindness meeting run by his daughter, who has “the recessive expression for RP.” The speaker that day was Dr. Jacque Duncan of UCSF, who interviewed all the attendees. Soon after, she contacted Lloyd to ask him to participate in the Argus II clinical trial.
He agreed immediately: “I figured if I lost the eye, I wouldn’t lose much, because it didn’t work anyway.”
The Bionic Retina
The Argus II Retinal Prosthesis System consists of three parts: an implant, glasses and a belt-worn video-processing unit (VPU).
The implant is surgically implanted in and on the eye. It includes an antenna, an electronics case and an electrode array. The glasses contain a tiny video camera that captures a scene. The video is sent to the VPU, where it is processed and turned into electrical stimulations — instructions — that are sent back to the glasses through a cable. The glasses then transmit the instructions wirelessly to the implant antenna, which sends signals to the electrode array, which emits electric pulses. These pulses bypass damaged photoreceptors (RP damages photoreceptors and impedes image formation) and stimulate the retina’s remaining healthy cells, which transmit the information along the optic nerve to the brain. If all goes well, it creates the perception of patterns of light, which wearers can learn to interpret as visual patterns.
Chicken Dance
Duncan, working with another UCSF doctor, had Dr. Eugene de Juan put the Argus II implant in Lloyd’s right eye on July 17, 2007. A few weeks after an initial infection subsided, he did his first test walk with the device outside, looking for boundaries and points of light.
“Human eyes naturally move around, using a rapid ‘saccade’ movement,” Lloyd explains. “With the device, you have to physically move your head back and forth to find boundaries — like a chicken, which does not have moving eyes. They move their heads back and forth to see things. During my walk, the field-service worker would say, ‘Dean, Dean, more chicken movement.’”
After about a year and a half spending a half-day a week at UCSF for the trial, he had a second operation. “The device didn’t satisfy me,” he says. “I went through all that, and all I could see was a little point of light. Only nine of 60 electrodes were working. I said, ‘This isn’t going to cut it for me, because I want to see images.’ They reset the implant closer to the retinal tissue, and that dramatically improved the device.”
Lloyd conducted his own tests of the device at home. “I was one of first to use it to sort socks. I wear black socks to court and white socks to the gym. I went home after the implant and wanted to see how I could make it practically useful. So I went to my socks and found the device worked. I always got the white ones right!”
While he is generally pleased with the Argus II, the most he will say is, “It shows potential.”
“The improvement was not very good at first. I wasn’t very impressed. There was a rumor going around that the implant restored vision. My vision wasn’t restored at all; I was not ascertaining images,” he says. “I do see boundaries. I can create an image. I know what a car should look like. I know what a tree should look like. I know what houses should look like. I know what objects should look like, and I have those images as memories in my brain. With this device, you can start to create an image by going back and forth, checking the boundaries and borders. We don’t have natural saccade movement helping us. The camera is right above my nose in a fixed position. It doesn’t move. You can create an image, but it takes a lot of time and a lot of work. It’s a labor-intensive task, and you have to have a good memory.”
The Argus II was approved by the FDA in February, and Lloyd is actively involved with Second Sight, the company that makes the device: “I am helping with new improvements,” he says. “I want this device to work. I didn’t go through all this for nothing.” He hopes an improved version will be approved this coming September, and he doesn’t rule out getting a new implant in the future if the improvements are worth it. To be honest, he says, “I find it annoying to move like a chicken.”
Susan DeRemer, CFRE
Vice President of Development
Discovery Eye Foundation
There are several etiologies for limbal stem cell deficiency of the front of the eye. These include chemical and thermal burns, Steven-Johnson syndrome (which is an autoimmune severe allergic reaction that causes a burn from within), congenital aniridia, and a few other insults such as contact lens over-wear. All of these cause severe ocular surface scarring and problems with the cornea. Many eyes with these diseases have problems with corneal healing. They do not have the stem cells to support ocular surface health. The scarring can be so severe in many cases that severe corneal blindness can result.
Limbal stem cells from the human cornea, with a protein known as p63 stained yellow. Cell nuclei (which hold the DNA) are stained red. From eurostemcell.org
In these cases, a simple corneal transplant will quickly fail and not result in any visual improvement. The reason for this is that the stem cells of the ocular surface have been damaged or burned out.
Visual rehabilitation for these eyes usually requires a limbal-corneal stem cell transplantation. The stem cells can be taken from the other healthy eye of the same patient, a living related donor, and or cadaveric tissue. In most cases systemic immunosuppression medications need to be taken for 1 to 3 years following surgery in order to minimize risk of rejection. Management of these patients is done in conjunction with an immunologist or a transplant specialist who can co-manage and monitor for systemic toxicity while the patient is on the these immunosuppressive medications. As most of these eyes also have concomitant glaucoma and scarring of the eyelids to the globe, co-management with a glaucoma specialist and an oculoplastic specialist is also required.
For patients who cannot be on systemic immunosuppression for other health reasons such as diabetes or cancer, they may require an artificial corneal transplantation. The artificial corneal transplantation is reserved as a last step for visual rehabilitation in these eyes. The only artificial cornea that has shown potential, is the Boston keratoprosthesis. Even this artificial cornea carries a high risk for infection and glaucoma. Very close monitoring of eyes that have an artificial cornea is required to monitor for infection and glaucoma progression. However these eyes do not require systemic immunosuppression.
Eye with Boston keratoprosthesis
The management of eyes with severe ocular surface disease is a difficult one for the cornea specialist. A subspecialist in severe ocular surface disease and limbal stem cell transplantation is required to manage these very sick eyes. At the Gavin Herbert Eye Institute, we have developed a team approach for the management of severe ocular surface disease patients and have successfully treated and are managing many patients who have otherwise no place to go.
Marjan Farid, MD
Director of Cornea, Cataract, and Refractive Surgery
Vice-Chair of Ophthalmic Faculty
Director of the Cornea Fellowship Program
Associate Professor of Ophthalmology
Gavin Herbert Eye Institute, University of California, Irvine
Judith Delgado
