Creating Cybrids to Study Age-Related Diseases

DEF Research Director Dr. M. Cristina Kenney’s research has shown that the mitochondrial DNA from different ethnic/racial populations may play a key role in determining that population’s resistance or susceptibility to disease (see previous article on 11/12/15 – Mitochondria and Age-Related Macular Degeneration). In order to study these effects, Kenney has developed the cybrid model using mitochondria from subjects of different ethnic/racial groups (Figure 1). The comparison of an individual’s mitochondria with that from other ethnic/racial groups (African, European, Asian or Ashkenazi Jewish) allows us to determine if their mitochondria determine that population’s susceptibility or resistance to disease and to response to drugs.

cybrids to study age-related disease
Figure 1 – Cybrids are cell lines with identical nuclei but the mitochondrial DNA from individuals of different ethnic/racial groups.

Personalized cybrids
Kenney’s cybrids are made with mitochondria from the blood taken from individual living donors. Looked at individually they are all really “personalized cybrids” because each cybrid test system has the mitochondria from the original donor and reflects the responses of that donor.

Using Cybrids to Study Age-Related Diseases

How is Kenney using these personalized cybrids?
Kenney is partnering with Dr. Pinchas Cohen, dean of the University of Southern California, Leonard Davis School of Gerontology, to explore how novel, small proteins produced from mitochondria might be used to treat a variety of age-related diseases such as age-related macular degeneration, Alzheimer’s, Parkinson’s, stroke and cholesterol. Cohen’s laboratory has discovered and characterized many of these new, small proteins called “mitochondrial derived peptides” (MDPs). His work has shown that these MDPs can protect brain cells from damage and early death, such as occurs in Alzheimer’s disease. Cohen and Kenney are now testing these MDPs in the K and H cybrids to assess their protective effects to stop retinal cell death, such as seen in AMD.

Kenney explains her approach:
“Our cybrid system represents a very powerful technique. We are now using the Ashkenazi Jewish population as an excellent model to learn how the mitochondria, with their unique mtDNA, influence the risk factors for AMD. We plan to extend the study to investigate Ashkenazi Jewish people’s susceptibility to Alzheimer’s disease, heart disease and stroke. Eventually, we believe the findings for the K haplogroup mitochondrial DNA will be applicable to other groups, as well.”

11/17/15

Anthony B. Nesburn, MD  FACSAnthony B. Nesburn, MD, FASC
President/Medical Director
Discovery Eye Foundation

Are You Seeing Images That Aren’t There?

“I’m worried about my mother”, Janet said. “Lately, she’s been telling me that she sees things that aren’t there – bugs, flowers, faces floating in the air! Is she getting Alzheimers?! She’s healthy and has always been sharp as a tack, although she has macular degeneration. What should I do? Yesterday, she said some children were playing in her yard but there was no one there!”

Janet’s mom probably has Charles Bonnet Syndrome (CBS) which can affect anyone with a severe vision loss. People with CBS see things that are not there but they know they are not real.
charles bonnet syndrome images
They have reported a wide variety of images, including bugs, flowers, animals, people, trees, houses, balloons and patterns. In Dr. Lylas Mogk’s excellent book on macular degeneration, she describes a patient who saw monkeys wearing clothes, playing in the trees. Another person saw an entire dinner party in her dining room!

One study documented that 80% of the participants saw people; 38% saw animals. Children and groups of people were also common. Twenty-seven percent had them daily. For some people, the images lasted less than a minute, but for 53%, they continued for one minute to one hour.

The images come and go and are usually interesting or amusing and not threatening. Dr.Mogk states, “One of the most remarkable qualities of these figures is that they almost always wear pleasant expressions and often make eye contact with the viewer. Menacing behavior, grotesque shapes, and scenes of violent conflict are not, to my knowledge, a part of this syndrome.”

The same images usually repeat themselves – often at the same time of day. They may happen daily or infrequently. The person with CBS knows that they are not real, and is fully awake when they occur. In the study, 82% of people immediately knew that the images were not real. The rest were deceived only briefly and then because the images were such common objects.

The images don’t block out what is behind them and they don’t have any sound associated with them. They’re usually in color, but can be in black and white. They are very detailed – much more detailed than what the patient with macular degeneration can usually see. People may see anything and the images are usually not anything they’ve seen in real life; they don’t seem to be visual memories. We don’t know exactly why this happens; it may be that the brain is trying to show something in the absence of normal visual impulses.

Like “phantom limb syndrome”, the body experiences things that are not there. Between 10% and 21% of people with low vision experience CBS, but some studies put the number higher than 40%.

What To Do?

  • Letting your family or friends know about it can be helpful. Most people with CBS are afraid to say anything about it. “They’ll think I’m crazy!”, they say. But if you and they understand what’s going on, you can help each other deal with the issue. For instance, if you see a big spider on the wall, why not just tell someone, “I think I see a spider over there. Will you check for me?”.
  • Acknowledge the images and then move on with your day. One lady remarked that she just says, “Ok, I see you but I don’t have time for you now, so just go away.” Then, she finds it easier to ignore them. I mentioned this technique to another woman who laughingly said, “Oh, great. First I’m seeing things and now I’m going to talk to them? People really WILL think I’m crazy!”.
  • You do need to keep your sense of humor about this. You cannot MAKE them go away. Becoming angry or upset will not make the images any less strong or frequent. In fact, stress may be a factor in triggering a hallucination, as can fatigue, low light or bright light and inactivity.
  • Talk with your doctor about it. More and more eye doctors are learning about Charles Bonnet Syndrome. You’ll be reassured that what you are experiencing is shared by others. Although few people need it, there has been some research on the use of low dose drugs such as Haldol. Recognition and acceptance are often at least as effective.

On a positive note, patients do report that the hallucinations are reduced over time and eventually go away completely. At a recent support group meeting, one participant mentioned that hers had disappeared and wryly admitted that she missed them! She’d gotten used to them and they didn’t interfere with her daily life after a while.

Techniques

A research study in the Netherlands found that people used a variety of techniques that were helpful, in addition to the ideas above.

  • Close your eyes; open your eyes; blink or look quickly away from the image.
  • Walk away from the image or approach it.
  • Stare at the image.
  • Put on a light.
  • Concentrate on something else; distract yourself.

Thousands of people live with Charles Bonnet Syndrome and manage quite well – you are not alone!

One note of importance: If the experience does not seem to meet the description of Charles Bonnet Syndrome, further testing may be necessary. Other medical conditions can trigger hallucinations, such as Parkinson’s. A full neurological work-up is indicated if the images are frightening, threatening or are accompanied by sounds or bizarre sensations.

This article is from the NEW Macular Degeneration Partnership website – AMD.org.  If you enjoyed it, please check out other articles related to age-related macular degeneration and sign-up for the monthly AMD E-Updates.

References:

  1. Mogk, Lylas G. and Marja Mogk: Macular Degeneration, The Complete Guide to Saving and Maximizing Your Sight. New York: Ballantine Books, 1999, 2003.
  2. Teunisse, Robert J et al. “Visual Hallucinations in Psychologically Normal People: Charles Bonnet Syndrome: CBS.” The Lancet, Vol 347, (March 1996): p794-97.

Judi Delgado - age-related macular degenerationJudith Delgado
Executive Director
Macular Degeneration Partnership
A Program of Discovery Eye Foundation

Spotlight Text – A New Way to Read

For People With Low Vision There Is Spotlight Text – A New Way To Read

Spotlight Text is a new e-reading app specifically designed to address the needs of patients with eye disorders. Dr. Howard J. Kaplan, a retina surgeon in the Hudson Valley, started developing the app five years ago. Dr. Kaplan states, “When the first Amazon Kindle came out, a light bulb went off. If books are now digital, you can make the text of the book adapt to the reader instead of forcing the reader to adapt to the text. My patients were extremely frustrated with low vision devices such as desktop readers. Most found them very difficult to use and affordable.” Working with low vision experts at the Lighthouse Guild International, various text presentation methods were evaluated. “The app is based on real visual science and was built with the input of the top low vision specialists in the country, “ says Dr. Kaplan.
spotlight text - a new way to read
The greatest difficulty in creating the app proved to be getting access to e-books. Initially Dr. Kaplan approached the major e-content providers such as Amazon, Google, and Barnes & Noble. All of them considered the low vision market too small to address. During the 5 years, Bookshare, a Silicon Valley nonprofit, began to expand exponentially. Bookshare is dedicated to creating an accessible library for the print disabled.

How Spotlight Text Works, and What Makes it Different
The app is seamlessly tied into the e-book library of Bookshare. The library currently has 300,000+ titles including all current and recent NY Times bestsellers. It has a very extensive collection of textbooks for K-12 children. E-book downloads are free and unlimited for children, and Vets. There is a minimal joining/maintenance fee for adults. All patients that have any visual deficit that prevents them reading standard print are eligible to join. A physician, optometrist, therapist, or even librarian has to certify a patient by checking a single box on the form and signing their name. Bookshare then does the rest by contacting the patient and giving them an account. Bookshare functions due to an exception in US copyright law that allows the free distribution of copyrighted material in formats that are unique for patients with visual disabilities. The books are coded in DAISY, which is a sound file format. The App takes these files and renders them back to written text.

The user interface is designed such that an 80-year-old technophobe or a five-year-old child can easily use it (Apple-like minimalism). The app also synchronizes with Bluetooth Braille readers that convert the text to Braille. It can be connected to the HDMI port of any TV for unlimited screen size (hardwire or wireless through Apple TV). As you will see when you demo the app, text is now dynamic: in both teleprompter and marquee modes the text will move so that ocular movements are minimized. Marquee mode was specifically designed and tested to work for end-stage Retinitis Pigmentosa patients and any patient with only a remaining very narrow central visual field. Using VoiceOver all books are now audible books.

Social Entrepreneurship
Special iTunes links are created for vision nonprofits. If a patient clicks on those links and purchases the Spotlight Text App, 50% of sales profits are donated to the organization, including the Discovery Eye Foundation or the American Academy of Ophthalmology Foundation. Prior to being placed on the AAO’s website the app was evaluated by its Low Vision Rehabilitation Committee. It is the only app that the American Academy of Ophthalmology has ever endorsed.

The Future
Dr. Kaplan hopes to return to the major providers of e-content and persuade them that low vision and blind users are a viable market for them.

“I believe universal accessibility is achievable, but it will take a coordinated and combined effort. Reading is such a vital part of all our lives, with e-books, everyone should be able to enjoy a good book.”

Howard J. Kaplan MDHoward J. Kaplan, MD
Retina Surgeon
Hudson Retina

1/15/15

Seeing the whole picture: My life after a telescope implant

9/11/14

I’ve lived with my family in Schenectady, NY (outside of Albany) for more than 50 years and I love my home because it’s within walking distance of my grocery store, bank and church. But ten years ago, my vision was severely impacted because of age-related macular degeneration.

Patty and Linda - telescope implant
Patty (on right) and friend Linda have some fun

My children had to help me so much because I just couldn’t see. For example, they had to drive me to the doctor and on errands. I needed help shopping because I couldn’t read labels. After a while, it was very depressing. I started to avoid social situations, like at family parties and church events, because I was embarrassed that I couldn’t recognize faces any longer. I felt terrible about this. I sat and cried every now and then.

But then my doctor told me about a treatment I wasn’t yet aware of called the telescope implant. The device is very small (the size of 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 blind spot that blocked 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 decided to take a chance on the procedure.

I worked with an entire team of specialists, which 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 February 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 shortly after the procedure, I was back with my family and going out to dinner. The most amazing part is that I was able to see my daughter’s face almost immediately, despite not expecting to see anything right away. It was such a gift! After the surgery, I worked with the low vision specialists for about three months. The exercises varied because you use different techniques to see things when you are standing, sitting or moving around.

It’s been more than a year since my surgery and I am very happy, mostly because I can do so much more now that I can see better. I can read, sew, do canning and work in my garden. I can see the crosswalks, which lets me walk to the grocery store safely. But most importantly, I can see my family and friends. I’m enjoying spending time with the people I care about. I would recommend that people learn more about the telescope implant. There are CentraSight teams all over the country. When you call 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 implant isn’t for everyone, but it can make such a difference in your life.

Patty Gadjewski - telescope implantPatty Gadjewski
Schenectady, NY

Ways to Reduce the Harmful Effects of Sun Glare

During the height of summer sunshine (and heat!), it’s helpful to discuss the importance of eye protection, including ways to reduce the harmful effects of sun glare.

Fundamentally, we need light to see. Approximately 80% of all information we take in is received through the sense of sight. However, too much light – and the wrong kind of light – can create glare, which can affect our ability to take in information, analyze it, and make sense of our surroundings.

Facts about Sunlight

Every type of light has advantages and disadvantages, and sunlight is no exception:

Advantages:

• Sunlight is the best, most natural light for most daily living needs.
• Sunlight is continuous and full-spectrum: the sun’s energy at all wavelengths is equal and it contains all wavelengths of light (explained below).

Disadvantages:

• It is difficult to control the brightness and intensity of sunlight.
• Sunlight can create glare, which can be problematic for many people who have low vision.
• Sunlight is not always consistent or reliable, such as on cloudy or overcast days.

Visible Light and Light Rays

An important factor to consider is the measurement of visible light and light rays, beginning with the definition of a nanometer:

• A nanometer (nm) is the measurement of a wavelength of light.
• A wavelength is the distance between two successive wave crests or troughs:

Wavelength - glare

• A nanometer = 1/1,000,000,000 of a meter, or one-billionth of a meter. It’s very small!

The human visual system is not uniformly sensitive to all light rays. Visible light rays range from 400 nm (shorter, higher-energy wavelengths) ? 700 nm (longer, lower-energy wavelengths).
Visible Light Spectrum - glare
The visible light spectrum occupies just one portion of the electromagnetic spectrum, however:

• Below blue-violet (400 nm and below), is ultraviolet (UV) light.
• Above red (700 nm and above), is infrared (IR) light.
• Neither UV nor IR light is visible to the human eye.

Ultraviolet Light and Blue Light

Ultraviolet (UV) light has several components:

• Ultraviolet A, or UVA (320 nm to 400 nm): UVA rays age us.
• Ultraviolet B, or UVB (290 nm to 320 nm): UVB rays burn us.
• Ultraviolet C, or UVC (100 nm to 290 nm): UVC rays are filtered by the atmosphere before they reach us.

Blue light rays (400 nm to 470 nm) are adjacent to the invisible band of UV light rays:

• There is increasing evidence that blue light is harmful to the eye and can amplify damage to retinal cells.
• You can read more about the effects of blue light at Artificial Lighting and the Blue Light Hazard at Prevent Blindness.

A new study from the National Eye Institute confirms that sunlight can increase the risk of cataracts and establishes a link between ultraviolet (UV) rays and oxidative stress, the harmful chemical reactions that occur when cells consume oxygen and other fuels to produce energy.

Sunlight and Glare

Glare is light that does not help to create a clear image on the retina; instead, it has an adverse effect on visual comfort and clarity. Glare is sunlight that hinders instead of helps. There are two primary types of glare.

Disability glare

• Disability (or veiling) glare is sunlight that interferes with the clarity of a visual image and reduces contrast.
• Sources of disability glare include reflective surfaces (chrome fixtures, computer monitors, highly polished floors) and windows that are not covered with curtains or shades.

Discomfort glare

• Discomfort glare is sunlight that causes headaches and eye pain. It does not interfere with the clarity of a visual image.
• Sources of disability glare include the morning and evening positions of the sun; snow and ice; and large bodies of water, (including swimming pools).

Controlling Glare

You can protect your eyes from harmful sunlight and minimize the effects of glare by using a brimmed hat or visor in combination with absorptive lenses.

• Absorptive lenses are sunglasses that filter out ultraviolet and infrared light, reduce glare, and increase contrast. They are recommended for people who have low vision and are also helpful for people with regular vision.
• Lens colors include yellow, pink, plum, amber, green, gray, and brown. Ultra-dark lenses are not the only choice for sun protection.
• Lens tints in yellow or amber are recommended for controlling blue light.
NoIR Medical Technologies: NoIR (No Infra-Red) filters absorb UVA/UVB radiation and also offer IR light protection.
Solar Shields: Solar Shields absorb UVA/UVB radiation and are available in prescription lenses.
• You can find absorptive lenses at a specialty products store, an “aids and appliances store” at an agency for the visually impaired, or a low vision practice in your area. Before you purchase, it’s always best to try on several different tints and styles to determine what works best for you.

More Recommendations

• Always wear sunglasses outside, and make sure they conform to current UVA/UVB standards.
• Be aware that UV and blue light are still present even when it is cloudy or overcast.
• Make sure that children and older family members are always protected with UVA/UVB-blocking sunglasses and brimmed hats or visors.

Maureen Duffy-editedMaureen A. Duffy, CVRT
Social Media Specialist, visionaware.org
Associate Editor, Journal of Visual Impairment & Blindness
Adjunct Faculty, Salus University/College of Education and Rehabilitation

Books About Age-Related Macular Degeneration

6/24/14

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.books about age-related macular degeneration

Books About Age-Related Macular Degeneration

By Doctors:

Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight
by Lylas G. Mogk and Marja Mogk
Paperback, Nook and Kindle

Macular Degeneration: From Diagnosis to Treatment
by David S. Boyer MD, Homayoun Tabandeh MD
Paperback, Nook and Kindle

By Patients:

The First Year: Age-Related Macular Degeneration:  An Essential Guide for the Newly Diagnosed
by Daniel L. Roberts
Paperback, Large Print and Kindle

Out of Sight, Not Out of Mind: Personal and Professional Perspectives on Age-Related Macular Degeneration
by Lindy Bergman, The Chicago Lighthouse, Jennifer E. Miller
Paperback, Nook and Kindle

Living With Macular Degeneration: What Your Doctors Cannot Tell You
by Edgar C Craddick, Benjamin Joel Michaelis
Paperback, Large Print and Kindle

Twilight: Losing Sight, Gaining Insight
by Henry Grunwald
Hardcover, Paperback, Audio Cassette, Audible, Nook and Kindle

Sunset…A Macular Journey
by F. Leroy Garrabrant
Paperback

Macular Disease: Practical Strategies for Living with Vision Loss
by Peggy R. Wolfe
Paperback, Large Print

Overcoming Macular Degeneration: A Guide to Seeing Beyond the Clouds
By Yale Solomon MD, J.D. Solomon
Paperback and Kindle

Macular Degeneration: Living Positively with Vision Loss
by Betty Wason, James J. McMillan
Hardcover and Paperback

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.

Judi Delgado - age-related macular degenerationJudith Delgado
Executive Director
Macular Degeneration Partnership
A Program of Discovery Eye Foundation

Little Bottle, Big Relief

6/3/14

What you need to know about eye drops.

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.
eye drops 6.3.14
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 DeRemerSusan DeRemer
Vice President of Development
Discovery Eye Foundation

Unleash the Power of Age

5/29/14

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.
man at computer
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.

AFB Links
Information related to living with vision loss:
Visionaware.org/gettingstarted
Information about working:
Visionaware.org/work
AFB.org/careerconnect
Data base on how to find public and private agencies:
AFB.org/directory
Online courses including “Employment of Older Persons”, technology, etc. (for professionals):
Elearn.afb.org

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 JohnsonGil Johnson
Contributing author to VisionAware ™
American Foundation for the Blind

Beyond Eating Green

Beyond Eating Green

Spinach and kale aren’t the only things to watch in your diet. Eating low glycemic foods may slow the development and progression of AMD. The glycemic index measures how quickly carbohydrates get glucose (sugar) into the blood stream. People with diabetes will find this familiar. High glycemic foods like potatoes, white rice, processed foods like cakes and crackers and cereal raise the blood glucose level. Low glycemic foods include vegetables and beans.

from www.crossfithoboken.com
from www.crossfithoboken.com

Several years ago researchers at Tufts University found that mice fed a low glycemic diet developed fewer and less severe age-related lesions in the retina than mice fed the higher GI diet. When lesions like this develop after age 60 in humans, they are the earliest warning sign of age-related macular degeneration. Earlier studies in humans resulted in similar observations.

*Here are some tips from Harvard University for low-glycemic eating.

1. Eat a lot of non-starchy vegetables, beans, and fruits such as apples, pears, peaches, and berries. Even tropical fruits like bananas, mangoes, and papayas tend to have a lower glycemic index than typical desserts.

2. Eat grains in the least-processed state possible: “unbroken,” such as whole-kernel bread, brown rice, and whole barley, millet, and wheat berries; or traditionally processed, such as stone-ground bread, steel-cut oats, and natural granola or muesli breakfast cereals.

3. Limit white potatoes and refined-grain products, such as white breads and white pasta, to small side dishes.

4. Limit concentrated sweets – including high-calorie foods with a low glycemic index, such as ice cream – to occasional treats. Reduce fruit juice to no more than one-half cup a day. Completely eliminate sugar-sweetened drinks.

5. Eat a healthful type of protein, such as beans, fish, or skinless chicken, at most meals.

6. Choose foods with healthful fats, such as olive oil, nuts (almonds, walnuts, pecans), and avocados, but stick to moderate amounts. Limit saturated fats from dairy and other animal products. Completely eliminate partially hydrogenated fats (trans fats), which are in fast food and many packaged foods.

7. Have three meals and one or two snacks each day, and don’t skip breakfast.

8. Eat slowly and stop when full.

*Adapted from Ending the Food Fight, by David Ludwig with Suzanne Rostler (Houghton Mifflin, 2008)

Judi Delgado headshotJudith Delgado
Executive Director
Macular Degeneration Partnership

When You See Things That Aren’t There

5/8/14

Charles Bonnet Syndrome


“Do you ever see anything you know is not there but looks real anyway?” I asked Sam Weinberg when he came to the Low Vision Living program.

“No.” he said, looking at his wife, Rachel, and fidgeting with his sweater.

“Oh”, I said casually, “I just asked because many people with macular degeneration see things they know are not there. I call it phantom vision, but the technical term is Charles Bonnet Syndrome.”

“Is this syndrome an early sign of Alzheimer’s?” Sam asked pointedly, still looking at Rachel. . .

“Absolutely not”, I said firmly. “Charles Bonnet Syndrome has nothing to do with mental agility or stability. When you have phantom vision, your mind is fine; it is your eyes that are playing tricks on you. It’s a side effect of low vision.”

“Well,” Sam admitted quickly, “I see little monkeys with red hats and blue coats playing in the front yard. I’ve seem them for eighteen months.”

“What!” Rachel’s eyes about popped out of her head. “Little monkeys in the front yard?”

“Well. . .um,” Sam continued, “sometimes I see them in the living room too.”

What is Charles Bonnet Syndrome (CBS)?
Charles Bonnet was an eighteenth century Swiss naturalist and philosopher. . . who described his grandfather’s curious experience of seeing men, women, birds and buildings that he knew were not there. Later in his life, Bonnet’s own vision deteriorated and he experienced phantom visions similar to his grandfather’s. . . .Charles Bonnet’s discovery didn’t capture medical attention at the time. But 150 years later, in the 1930’s, his files were dusted off, and he was credited with being the first person to describe the syndrome that came to be named for him.

Image seen by someone with CBS
Image seen by someone with CBS

How common is CBS?
This syndrome is very common. Studies place the number somewhere between 10 and 40 percent of people with low vision. Twenty percent of my low vision patients have Charles Bonnet Syndrome. . . To determine whether or not you are experiencing phantom vision: Do the images that appear to you have the following six characteristics?

  1. They occur when you are fully conscious and wide awake, often during broad daylight
  2. They do not deceive you; you are aware that they are not real.
  3. They occur in combination with normal perception. For example, you may see a sidewalk clearly but find it covered with dots, flowers, or faces.
  4. They are exclusively visual and do not appear in combination with any sounds or bizarre sensations.
  5. They appear and disappear without obvious cause.
  6. They are amusing or annoying but not grotesque.
An image described by a person with CBS
An image described by a person with CBS

What do people with CBS see?
My patients. . . have reported seeing cartoon characters, flowers in the bathroom sink, hands rubbing each other, waterfalls and mountains, tigers, maple trees in vibrant autumn foliage, yellow polka dots, row houses, a dinner party and brightly colored balloons. . . One of the most remarkable qualities of these figures is that they almost always wear pleasant expressions. . . Menacing behavior, grotesque shapes and scenes of violent conflict are not, to my knowledge, a part of this syndrome.

Usually the same image or set of images reappears to each person. Sam’s monkeys usually materialized around sunset. . .They stayed for 10 or 20 minutes several times a week for two years and then began to appear less frequently. Some times the images change of multiple images appear. . .

Little girls dancing in the yard
Little girls dancing in the yard

Dolly Kowalski’s Little Girls with Pink Bows
‘I see little girls with pink bows playing in my yard. At first, there was only one little girl. But after a while, she had several playmates. Now they come almost every evening for fifteen minutes. . .They are so delightful, so cheerful, so active. Their little white dresses and pink bows blow in the wind. I see them so incredibly clearly, much more clearly than I see anything else now. . . .I know they aren’t real, but you wouldn’t believe how realistic they seem. . . . I wish you could see them the way I do.’”

Further note by Lylas Mogk, MD
Fortunately, most people, like Dolly, find the images of CBS largely untroubling and many actually find them amusing or enjoyable, as they are usually pleasant and they are crystal clear. There is no drug treatment for CBS, but it is associated with sensory deprivation, so the more active and engaged one is the less likely it is to occur. That’s one reason why vision rehabilitation to empower individuals to accomplish their daily activities in spite of vision loss.

Excerpts were used from Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight, by Lylas G. Mogk, MD and Marja Mogk, PhD, New York: Ballantine Books, 2003, Chapter 8, pp. 236-252.

Mogk_Lylas_11C[1]Lylas G. Mogk, MD
Director, Center for Vision Rehabilitation and Research
Henry Ford Health System