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A Summary of the White House Conference on Aging Issues and Initiatives: Part One

Priscilla Rogers wearing a blue shirt

Guest blogger Priscilla Rogers, Ph.D. is the Program Manager for VisionAware and co-author of Aging and Vision Loss: A Handbook for Families. Her other works include Self-Advocacy Skills Training for Older Individuals Who Are Visually Impaired and Solutions for Success: A Training Manual for Working with Older People Who Are Visually Impaired. She has an M.A. degree in gerontology and a Ph.D. in special education with an emphasis in vision and aging.

The 2015 White House Conference on Aging: An Overview

The White House Conference on Aging (WHCOA) took place on July 13, 2015. It was an historic occasion that occurs once a decade. This year's conference was the first to take place on a national stage with the opportunity for people across the nation – and even the world – to listen in and participate through social media, including a Twitter feed @WHAging that enabled virtual attendees to ask questions and make comments.

2015 White House Conference on Aging logo

However, it is unfortunate that minimal effort was made to acknowledge aging and disabilities, particularly with the 25th anniversary of the Americans with Disabilities Act approaching on July 26, 2015. Although the words "low vision," "visual impairment," and "screen reader" were used by some of the presenters, nothing was mentioned specifically about older Americans with visual impairments, except when discussing initiatives related to consumer fraud. In addition, the excellent videos that accompanied the presentations were not audio-described to make them fully accessible to participants and viewers who were blind or visually impaired.

This is the first of three posts that will cover the WHCOA initiatives that were announced with great fanfare – and, in several cases, with noticeable ageism.

Overriding Themes

The conference focused on four issues: healthy aging, long term services and supports, elder justice, and retirement security.

Adriane Berg from Generation Bold Radio summed up what happened quite well:

Every 10 years, leaders in the field of aging gather in Washington D.C. to attend the White House Conference on Aging (WHCOA). The WHCOA sets the tone for governmental, nonprofit, and commercial efforts that will affect us all. This year, there were significant themes which express the state of aging today:

  • Focus on family and professional caregivers
  • The woeful state of retirement savings of boomers
  • The disgrace of elder abuse
  • Age-friendly and dementia-friendly universally designed communities
  • Continued food insecurity
  • The ubiquitous presence of technology in our lives

American Foundation for the Blind (AFB) and the State of Vision and Aging

All of these themes certainly affect older persons with vision loss and many were reflected in the input from across the country that AFB has received on the "state of vision and aging" in this country.

The American Foundation for the Blind's (AFB) letter to the President about the WHCOA articulated major issues related to aging and vision loss. AFB and the 70+ agencies that signed on to the letter emphasized the need for a systemic approach to ensure that older Americans who are blind or visually impaired are able to (a) receive the training in independent living they need to carry out everyday tasks, (b) obtain critical technologies to enhance their health, independence and safety, and (c) access appropriate support services, such as transportation.

President Obama Speaks at the WHCOA

Key quote: "...Because this conference takes place just once a decade, we have to make it count. ... one of the best measurements of a country is how it treats its older citizens." You can view President Obama's speech in its entirety at YouTube.

It's Up to Us to Carry the Ball

Just how do we in the field of visual impairment make this conference count for older persons with vision now and in the future? It is up to us to continue to push our agenda forward and use this opportunity to tie in the concerns raised in AFB's National Conversation and aging and vision loss survey. It is up to us to insert ourselves in this process; to become aware of the initiatives that are taking place; and make sure that we have or make a place at the table. Once at the table, it is our responsibility to advocate for resolution to specific concerns that affect older persons with vision loss.

Initiatives Rolled Out at the Conference

Editor's note: The initiatives detailed in this post come from Fact Sheet: White House Conference on Aging. These initiatives are related to the themes of the conference and other related concerns. We have included specific AFB responses and remarks to tie the WHCOA initiatives to issues that AFB has raised.

Launching Aging.gov

As a cross-cutting measure (i.e., fundamental issues related to, and included in, all programs and projects), the Administration launched Aging.gov on July 13, 2015. The purpose of Aging.gov is to provide older Americans, their families, friends, and other caregivers, with a one-stop resource for government-wide information on helping older adults live independent and fulfilling lives. The website links to a broad spectrum of Federal information, including how to find local services and resources in the community, as well as key information on vital programs such as Social Security and Medicare.

Initiative: Retirement Security

  • Facilitating State Efforts to Provide Workplace-based Retirement Saving Opportunities: About a third of the workforce lacks access to a workplace retirement plan.... In the absence of Congressional action, the states are leading the charge. Similar proposals have been passed by a few states and are under consideration in over 20 others. Other states are considering an approach that would encourage employers to create 401(k)-type plans. By the end of the year, the U.S. Department of Labor will publish a proposed rule clarifying how states can move forward, including with respect to requirements to automatically enroll employees and for employers to offer coverage.
  • Employers Better Preparing Workers for Retirement: Even among workers with access to an employer-based plan, only 78 percent participate; for part-time workers, this number decreases to 57 percent... Best practices like automatic enrollment of employees in 401(k) plans starting at levels of at least 5 percent of pay, automatic escalation of contributions, substantial employer matching and other contributions, and comprehensive financial education programs are important to help employees better prepare for retirement. Some companies have set up innovative plans. Also, for new savers without access to workplace retirement savings plans, the U.S. Department of the Treasury has also introduced myRA (my Retirement Account), a simple, safe, and no-fee savings option. Individuals can currently contribute to myRA through payroll deductions at their employers, and will also be able to contribute directly through their bank accounts later this year.
  • Helping Workers Plan for Retirement by Providing Ready Access to Information About Their Social Security Benefits: To assist Americans in their financial planning, the Social Security Administration is providing individuals with an easily transferable data file with the information contained in their monthly Social Security benefit statement, and has released a guide to help developers understand how they could incorporate the data into new software. New tools utilizing this information could combine it with self-reported information on an individual's retirement savings in 401(k)-style plans and IRAs to help individuals understand the amount of resources they will have available, determine how much to save, and figure out when to claim Social Security benefits, among other important financial planning and retirement decisions. Betterment, Financial Engines, and HelloWallet Holdings (a Morningstar Company) have committed to developing software incorporating the new data from SSA.
  • Protecting Defined Benefit Pensions: To ensure that more retirees continue to enjoy a steady, reliable stream of income in retirement, the U.S. Department of the Treasury has recently issued guidance clarifying that employers sponsoring defined benefit pension plans generally may not offer lump sum payments to retirees to replace their regular monthly pensions.
  • Facilitating the Availability of Lifetime Income Options: Retirement security requires more than just accumulating savings—people also need protection against outliving assets. Lifetime income options like annuities provide a regular stream of income regardless of lifespan... the U.S. Department of Labor issued guidance clarifying that an employer's fiduciary duty to monitor an insurer's solvency generally ends when the plan no longer offers the annuity as a distribution option, not when the insurer finishes making all promised payments. The guidance should encourage more employers to offer lifetime income annuities as a benefit distribution option in their 401(k)-type plans.

AFB's Concerns Re: Retirement Security

Although the above measures address major concerns related to retirement, economic security is even more precarious among older Americans who retired early due to unexpected vision loss, who have had vision loss for most of their lives and as a result had fewer employment opportunities. These individuals significantly economically disadvantaged as a direct result of their vision loss.

One respondent shared the following with AFB: "Many individuals were diagnosed after retirement and did not even think about planning to have finances to pay for video magnifiers; co-payments for injections related to age-related macular degeneration; in-home assistance; or options for transportation. Those who do not have the financial resources do without; those who have financial resources found that retirement funds have to be diverted from more fun/social expenditures to 'eye care needs.'"

Initiative: Utilizing Technology to Support Older Americans

As part of the administration's commitment to making Federal government data open and more easily usable, ...by September 2015, Federal data sets relevant to aging and to elderly Americans will be made easily available on Data.gov, the repository for the U.S. Government's open data. This resource will continuously be updated with datasets on aging, much like it is for other important Administration priorities such as climate, public safety, and education.

Private Sector Actions Regarding Technology and Its Intersection with Management of Day-to-Day Life

In connection with the WHCOA, private sector leaders announced new actions to help bring technology to bear to improve support for older Americans:

iPad with hand indicating apps on screen
  • LeadingAge, an association of 6,000 not-for-profit organizations and businesses that represent a broad field of aging services, is planning to partner with Hewlett-Packard using HP's 3D immersive computing platform and Federal open data to challenge innovators to create technology-driven tools to improve the lives of older adults and their families.
  • Walgreens has made advancements in its digital technologies to connect individuals with its telehealth services provider, which offers 24/7 access to U.S. board-certified doctors. Seniors also can track their health behavior with personal wellness smartphone technologies from Walgreens and WebMD.
  • Peapod has adopted "best in class" web accessibility standards to ensure that all individuals, including those with disabilities and those who are unable to shop at traditional stores, can use its website and mobile applications.
  • Honor, a tech-enabled company that matches seniors with care professionals, will offer $1 million in free home care across 10 cities in the country and work with established care providing organizations in those communities to ensure this care goes to helping older Americans.
  • The University of Washington's School of Nursing and the HEALTH-E (Home-based Environmental Assisted Living Technologies for Healthy Elders) initiative are introducing an Aging and Technology Laboratory, which includes hardware and software tools to support participatory design of technology for older adults. The laboratory will allow scientists, engineers, and others to engage older adults and their families to accelerate the generation of new solutions to support aging.
  • Philips, joined by the MIT AgeLab and Georgetown University's Global Social Enterprise Initiative, will create the AgingWell Hub – an incubator for open innovation that examines and shares solutions to aging well through the use of new technologies, products, services and thought leadership in collaboration with academia, healthcare systems, caregivers, payers, entrepreneurs and older adults.

AFB's Response to Technology Initiatives

Despite efforts to build an awareness at every level of government about the importance of ensuring that technologies used for living and working are accessible, the accessibility of technologies remains an ongoing and uphill battle for consumers who are visually impaired. Technology affects every aspect of everyday life and can make or break a person's decision to remain independent – from taking medication, to reading bills, to ordering groceries, to getting around.

Technology does hold the key to answering many of the dilemmas faced by older Americans including those with vision loss, but the decision to make technology accessible out of the box must be a conscious decision that includes the stakeholders. AFB recently honored Apple for doing just this: creating VoiceOver, a gesture-based screen reader that allows users to hear a description of everything happening on the display, and other features that make iPhone, iPad and other iOS devices accessible to people with vision loss.

No mention was made of Walgreen's initiative on accessible prescriptions.

Further, the very devices that affect independence are not covered by Medicare or other funding, nor is training to use them available on a consistent basis. As noted by one respondent, "Medicare should pay for assistive devices for people with low vision or no vision... Aids for vision, such as glasses, magnifiers, and talking devices should be covered. This could mean the difference between a person being independent and having to have a family member or to hire someone to provide these services."

For More Information

Information on the WHCOA initiatives has been excerpted from Fact Sheet: The White House Conference on Aging.


Topics:
Planning for the Future
Assistive Technology
Low Vision
In the News
Personal Reflections
Technology
Public Policy
Caregiving
Aging

Meet Dr. Gregory Goodrich, Chair of the Upcoming Conference on Vision Loss in Older Adults and Veterans

head shot of Gregory Goodrich

Dr. Gregory Goodrich received his Ph.D. in Experimental Psychology in 1974 from Washington State University, when he also began his career with the United States Department of Veterans Affairs (VA). He retired in 2014 after having served as supervisory research psychologist assigned to the Western Blind Rehabilitation Center in Palo Alto, California, and as the program coordinator for the Optometric Research Fellowship Program in Palo Alto.

Since retirement, he has become a volunteer at the Western Blind Rehabilitation Center and serves on a committee for the Blinded Veterans Association. He is also a member of the Governing Board for the Hall of Fame: Leaders and Legends of the Blindness Field, housed at the American Printing House for the Blind.

In addition to his volunteer activities, Dr. Goodrich is currently a research consultant on several projects. His primary areas of research are low vision reading, low vision mobility, and outcome studies. Most recently, his research has focused on the treatment of polytrauma veterans with visual loss returning from operations in Iraq and Afghanistan. He is also the author of Sorting Things Out in Traumatic Brain Injury and Veterans, Brain Injury, and Vision on the VisionAware website.

AER 2015 conference banner

Dr. Goodrich has been an active member of the Association for Education and Rehabilitation of the Blind and Visually Impaired (AERBVI or AER), serving as its president and past president. Currently, he is the conference chair for the upcoming AERBVI Conference on Vision Loss in Older Adults and Veterans, which will be held November 4-6, 2015 in Norfolk, Virginia. Here is more information about the conference from an AERBVI news release:

Join AERBVI at this first-of-its-kind conference for professionals in the vision field to share what they've learned working with older adults and veterans who have experienced vision loss.

In recent years, the field of vision rehabilitation has rapidly grown in the United States. As veterans return with eye injuries from their tours in Afghanistan and Iraq, the demand for vision specialists within the U.S. Departments of Defense and Veterans Affairs has risen. Meanwhile, the private sector continues to serve the growing population of older adults with vision impairments due to age and other health-related issues. As a result, the increased demand for vision rehabilitation services has generated tremendous growth and change in the field.

AER is thrilled to bring together vision rehabilitation professionals from the U.S. Departments of Defense and Veterans Affairs, as well as those in the private sector, to share information about working with adults affected by trauma-related and age-related vision loss. This conference gives vision professionals the opportunity to share their collective wisdom to better serve adults with vision loss.

Maureen Duffy: Hello Greg. Thank you for taking the time to speak with us. My first question is about your academic background and life's work. How did you develop your interest in experimental psychology? And how did that help you in your work with the VA?

Greg Goodrich: Thank you, it’s a pleasure to talk with you again. My interest in experimental psychology actually began with monkeys. Dr. Francis Young, my major professor, had a large colony of rhesus macaque monkeys that he used for vision research, and my first job with him was feeding the monkeys and cleaning monkey cages. It wasn't glamorous, but that job connected me to Francis and also to Dr. George Leary, a born-and-raised Londoner and a natural-born teacher.

Their mentoring got me interested in studying the visual sensory perceptual system. They also alerted me to the job opportunity with the VA in Palo Alto, but that is too long a story to get into here, other than it was that job that got me into the field of low vision and blindness.

MD: I'm also very interested in the AERBVI Conference on Vision Loss in Older Adults and Veterans, which you are chairing. How did the idea for this conference come about?

GG: The idea was the brainchild of the AERBVI staff. They noted that the VA serves older veterans, as well as veterans from the wars in Afghanistan and Iraq. The service needs of older individuals and veterans cross a broad range of topical areas, including aging, low vision, orientation and mobility, recreation, technology, psychosocial, research, and the relatively new area of brain injury-related vision loss.

So I felt the broad appeal of the theme would interest many professionals and provide content not readily available in other conferences. In short, as soon as they mentioned the idea I was enthusiastically on board!

MD: Can you tell us more about some of the featured speakers and sessions?

GG: Recently, I reviewed the papers and posters accepted for the conference and I'm very pleased with their breadth and relevance to both civilian and veteran populations. We also have exceptional general session speakers.

head shot of Janet LaBreck

Janet LaBreck (pictured left), Commissioner of the Rehabilitation Services Administration (RSA), is one. Ms. LaBreck has been a longtime advocate for the blind community and previously served as Commissioner of the Massachusetts Commission for the Blind. In 2013 she was confirmed by the United States Senate as Commissioner of RSA. She will bring a unique perspective as consumer, advocate, and national policy-maker to her talk, "Increasing Employment Opportunities for Those Who are Blind and Visually Impaired."

head shot of John Crews

Another keynote speaker is Dr. John Crews (pictured right), who is a Health Scientist at the Centers for Disease Control and Prevention (CDC). Dr. Crews is a respected senior researcher in our field and an excellent speaker. One of his research interests, and the topic of his talk, is health-related quality of life, which encompasses the primary factors hindering or promoting the quality of life of people with a visual impairment. Dr. Crews' research was featured recently on the VisionAware blog and can provide interested readers with a preview of his conference presentation, entitled "Health-Related Quality of Life among Older Adults with Vision Impairment: Findings from the 2006-2010 Behavioral Risk Factor Surveillance System."

head shot of BJ LeJeune

Our third keynote speaker is B.J. LeJeune (pictured left), who is a widely recognized speaker. A Certified Rehabilitation Counselor and Certified Vision Rehabilitation Therapist (VRT), Ms. LeJeune is the Training Supervisor at the National Research and Training Center on Blindness and Low Vision at Mississippi State University. Her keynote presentation is titled "Things I have learned living with someone who has a traumatic brain injury (TBI): More confessions of a VRT." Her perspective as a professional and wife of an individual with TBI gives her an opportunity to share her unique insights with other rehabilitation professionals.

MD: I've also heard that the conference will be honoring professionals who have been inducted into the American Printing House for the Blind (APH) Hall of Fame for Leaders and Legends of the Blindness Field and have made significant contributions to services for blind veterans. Can you tell us more about that?

GG: Thanks for asking about this. I'm extraordinarily pleased that the conference gives us an opportunity to highlight the Hall of Fame in general and those inductees who provided exemplary services to veterans. In the process of serving veterans, these individuals greatly advanced services for all individuals living with low vision or blindness. The list is too long to name every inductee who will be featured, but included are such luminaries as Warren Bledsoe, Donald Blasch, and Richard Hoover.

During the entire conference we will have posters of each of these notable people on display. Attending the conference will provide an opportunity not only to learn about these individuals, but also to learn how our field originated and was shaped. I think it is a "not to be missed" opportunity.

MD: Where can our readers get more information about the conference, such as registration deadlines and costs?

GG: AERBVI members have already received mailings; anyone else who is interested can get additional information and register by logging on to the conference website. The conference hotel is the Norfolk Waterside Marriott and reservations ($129.00 per night) can be made on the conference website or directly through Marriott hotels.

In either case, be sure to mention the "AER Conference on Vision Loss" to get the conference rate. The Marriott is a wonderful hotel on the water in Norfolk, Virginia and for history buffs it is a short walk to where the World War II battleship U.S.S. Wisconsin is docked. As a Navy veteran (I spent some time in Newport News next to Norfolk), the Wisconsin is one attraction I'll definitely spend some non-conference time enjoying!

Additional Information


Topics:
Planning for the Future
Low Vision
In the News
Personal Reflections
Veterans
Medical Updates
Aging

Download the VisionConnect App Today and Take the VisionAware Challenge

Priscilla Rogers wearing a blue shirt

Guest blogger Priscilla Rogers, Ph.D. is the Program Manager for VisionAware and co-author of Aging and Vision Loss: A Handbook for Families.

Her other works include Self-Advocacy Skills Training for Older Individuals Who Are Visually Impaired and Solutions for Success: A Training Manual for Working with Older People Who Are Visually Impaired. She has an M.A. degree in gerontology and a Ph.D. in special education with an emphasis in vision and aging.

About the New VisionConnect™ App

The American Foundation for the Blind (AFB) has just released a free, accessible iOS app: VisionConnect™, available for download. VisionConnect™ provides a searchable directory of services available in the US and Canada for children and adults who are blind or visually impaired. You can use the app to find services such as computer and technology training, daily living skills training, braille and reading instruction, dog guide training, employment services, low vision services, and more.

VisionConnect logo - an eye with the pupil drawn as a spyglass search icon

Individuals who are blind or have low vision can use this accessible app themselves to find resources and tips for living independently with visual impairment, including information on products and technology, personal stories about how people live everyday with macular degeneration or glaucoma, and advice on maintaining employment. The resources on VisionAware are used heavily in the app.

Health care providers can use the app to create customized lists of rehabilitation service providers that they can email to their clients, and provide their patients with home survey checklists, ideas for managing their medications, and more.

Key Features of the VisionConnect™ App

Search

  • Select an age group: all ages, children, or adults, including seniors.
  • Select a service category: advocacy, assistive products, braille and reading instruction, etc.
  • Select a state, zip code, or distance from service, or
  • Select an organization by name.

Customization

  • Save your search results as lists; for example, "Low Vision Services in Florida."
  • E-mail your lists to family members, patients or consumers, or health care providers.

Resources

  • Select an audience: information for doctors, children, adults, or seniors.
  • Drill down into resources such as tips for modifying your home, accessible products, medication management, a Getting Started Kit, information for veterans, stories about people living and working with visual impairment, and more.
A screenshot of the AFB VisionConnect iOS app

A screenshot of the VisionConnect™ app

Why Did AFB Launch This App?

According to the 2012 National Health Interview Survey, 20.6 million adults in the United States have trouble seeing even with corrective lenses, or have low vision, or are totally blind. A very high percentage of these individuals are older, and this number is growing as a result of an aging population experiencing age-related eye conditions such as macular degeneration. Far too frequently, individuals who lose vision and their families are unaware that there are a variety of beneficial technologies and services, as well as an entire array of resources that can help them continue to live independent and active lives.

Medical providers, and especially eye care specialists, provide a natural gateway to information about the technologies, services, and resources that people with vision loss need access to. Often, however, eye care specialists and other health care professionals are not aware of these options. Consequently, they do not provide crucial information to their patients experiencing vision problems. As a result, people with low vision are unlikely to hear about low vision rehabilitation services from their ophthalmologists or other medical providers, according to a 2010 study published by the Centers for Medicare and Medicaid Services Studies.

In November 2011, AFB conducted a focus group with consumers with vision loss and family members. These challenges in finding help were identified:

  • Lack of follow-up support and referrals by eye care specialists
  • Gaining access to resource information, and
  • Help and hope through a range of information about vision loss that reflects an optimistic spirit about living with vision loss

An App Is Conceived and Born

AFB began to search for a solution that addressed two major issues: 1) health care providers' lack of knowledge about helpful technologies and resources, and 2) severely limited time to counsel patients as a result of the increased demand for medical services.

Through a series of focus groups and interviews, AFB determined that both patients and health professionals will be helped by the VisionConnect app. The app gives providers information about and access to resources, enables them to show patients how to access the information themselves, and makes it possible to share information about services to patients and/or family members by e-mail. This technology will hopefully mitigate the three primary challenges faced by patients and caregivers alike: lack of follow-up support and referrals, gaining access to resource information, and help and hope.

Take the VisionAware Challenge

mock prescription pad with information about the VisionConnect app and how to download

The VisionConnect™ prescription pad

How do we get the message out to health care providers and the eye medical community? We need your help to educate your doctor and health care providers about the VisionConnect app. Please order one of our mock prescription pads and take it to your doctor or health care professional. Ask him/her to download the app and "prescribe” VisionConnect to patients who need information about services and living with vision loss.

To order the prescription pad, send an email to visionaware@afb.net with your contact information.

Download VisionConnect™ for the iPhone or the iPad.


Topics:
Web Accessibility
Reading
Assistive Technology
Low Vision
In the News
Online Tools
Technology

New Retinitis Pigmentosa Research: Uncovering the Mechanism Underlying Photoreceptor Cell Death

Molecular Medicine logo

Researchers from the National Eye Institute and New York University have published new research that implicates the normally beneficial and protective "trash-collecting" central nervous system cells in the accelerated cell death associated with retinitis pigmentosa.

Please note that this research is in its earliest stages and has been conducted thus far only with laboratory mice. However, a new clinical trial related to this study, Oral Minocycline in Treating Bilateral Cystoid Macular Edema Associated with Retinitis Pigmentosa, is now underway and is recruiting human subjects.

The research, entitled Microglial phagocytosis of living photoreceptors contributes to inherited retinal degeneration (explained below) has been published in the July 2, 2015 Early Edition of EMBO Molecular Medicine. Molecular Medicine is a peer-reviewed, online open-access journal dedicated to forging new links between clinicians and molecular biologists. Interest areas covered by the journal include aging, angiogenesis, genetics, gene therapy, stem cells, and regenerative medicine.

The authors are Lian Zhao, Matthew K. Zabel, Xu Wang, Wenxin Ma, Parth Shah, Robert N. Fariss, Haohua Qian, Christopher N. Parkhurst, Wen-Biao Gan, and Wai T. Wong, who represent the following institutions: National Eye Institute, National Institutes of Health; and New York University School of Medicine.

Some Terminology to Begin

Here is a brief explanation of the key scientific terms used by the researchers:

  • Microglia: Cells in the central nervous system that function as "scavengers" to attack, ingest, and destroy foreign substances and protect the central nervous system against infection. They act as phagocytes of waste products of the central nervous system.
  • Phagocytes: A type of cell within the body that engulfs, ingests, and destroys foreign particles, bacteria, and cell debris.
  • Phagocytosis: The process by which the cell (phagocyte) engulfs, ingests, and destroys foreign particles. Phagocytosis is a normal process in healthy nervous system tissues and is a key way to clear away dead cells and cellular debris.

About Retinitis Pigmentosa

Retinitis pigmentosa (RP) is part of a large group of hereditary retinal conditions or dystrophies, involving one or several layers of the retina. RP occurs in approximately 1 in 4,000 people in the United States. At present, there is no cure.

A scene as it might be viewed by a person with retinitis pigmentosa

Most persons with RP initially experience difficulty with night vision and in low light levels. Central (straight ahead) vision is usually retained until late in the course of the disease, while peripheral (or side) vision becomes progressively more constricted, resulting in "tunnel vision" (pictured above).

Primarily, the retinal rod cells – light-sensitive, specialized retinal receptor cells that activate at low light levels and provide night vision – are involved, but there may also be some involvement of the retinal cone cells, which function best in relatively bright light and provide color vision and greater visual acuity than do rod cells.

You can read more about retinitis pigmentosa research at What Is Retinitis Pigmentosa? by Frank J. Weinstock, MD, FACS at the VisionAware website.

About the Research

Excerpted from In blinding eye disease, trash-collecting cells go awry, accelerate damage, via Medical Xpress:

Spider-like cells inside the brain, spinal cord, and eye hunt for invaders, capturing and then devouring them. These cells, called microglia, often play a beneficial role by helping to clear trash and protect the central nervous system against infection. But a new study shows that they also accelerate damage wrought by blinding eye disorders, such as retinitis pigmentosa.

Retinitis pigmentosa damages the retina, the light-sensitive tissue at the back of the eye. Research has shown links between retinitis pigmentosa and several mutations in genes for photoreceptors, the cells in the retina that convert light into electrical signals that are sent to the brain via the optic nerve. In the early stages of the disease, rod photoreceptors, which enable us to see in low light, are lost, causing night blindness. As the disease progresses, cone photoreceptors, which are needed for sharp vision and seeing colors, can also die off, eventually leading to complete blindness.

[The research team] studied mice with a mutation in a gene that can also cause retinitis pigmentosa in people. The researchers observed in these mice that very early in the disease process, the microglia [i.e., the trash-devouring cells] infiltrate a layer of the retina near the photoreceptors where they don't usually venture. The microglia then create a cup-like structure over a single photoreceptor, surrounding it to ingest it in a process called phagocytosis.

Phagocytosis is a normal process in healthy tissues and is a key way of clearing away dead cells and cellular debris. However, in retinitis pigmentosa, the researchers found that the microglia target damaged living photoreceptors, in addition to dead ones.

To confirm that microglia contribute to the degeneration process, the researchers genetically eliminated the microglia, which slowed the rate of rod photoreceptor death and the loss of visual function in the mice. The microglia seem to ignore cone photoreceptors, which fits with the known early course of retinitis pigmentosa.

What triggers microglia to go on this destructive feeding frenzy? [Lead researcher] Wong and colleagues found evidence that photoreceptors carrying mutations undergo physiological stress. The stress then triggers them to secrete chemicals dubbed "find me" signals, which is like ringing a dinner bell that attracts microglia into the retinal layer.

Once there, the microglia probe the photoreceptors repeatedly, exposing themselves to "eat me" signals, which then trigger phagocytosis. In response to all the feasting, the microglia become activated. That is, they send out their own signals to call other microglia to the scene and they release substances that promote inflammation.

More about the Research from Molecular Medicine

From the article synopsis, with the full open-access article available online:

  • In retinitis pigmentosa (RP), retinal microglia are shown to potentiate the rate of rod photoreceptor death via phagocytic and pro-inflammatory mechanisms. This process may be common to multiple genetic etiologies of RP in mouse models and in human patients.
  • Microglial phagocytosis of rod photoreceptors was initiated at the start of rod apoptosis [i.e., cell death] with early infiltration of retinal microglia into the outer retina, upregulation of phagocytic molecules in microglia, and exposure of PS, an "eat-me" signal, on rod photoreceptors.
  • Microglial phagocytosis of rods included apoptotic cells [i.e., cells that have died] but also cells that have not yet been committed to apoptosis and are negative for apoptotic markers, indicating microglial clearance of stressed but living rods.
  • Infiltrating microglia demonstrated dynamic interactions with photoreceptors via motile processes that culminate in the overt phagocytosis of non-apoptotic rods.
  • The contribution of infiltrating microglia to rod demise was demonstrated by structural and functional rescue of photoreceptor degeneration.
  • Microglia-directed interventions may be of potential utility in prolonging the survival of photoreceptors and deferring irreversible vision loss associated with RP of different genetic etiologies.

VisionAware will continue to report on this research as results become available. You can watch a video of microglia "eating" rod photoreceptors at YouTube.

Additional Information


Topics:
Low Vision
In the News
Medical Updates
Clinical Trials
Retinitis Pigmentosa

Exercising Safely With Diabetes: Part 4 in a Series

Audrey Demmitt and her dog guide

Audrey Demmitt, RN, BSN, is a nurse diabetic educator, VisionAware Peer Advisor, AFB Career Connect mentor, and author of the VisionAware multi-part blog series on diabetes and diabetes education. At age 25, Audrey was diagnosed with retinitis pigmentosa and continued to work as a nurse for 30 years with her visual impairment.

She has worked as an Adjustment to Blindness Counselor and Diabetic Educator for Vision Rehabilitation Services of Georgia and as a school nurse providing in-service training for school staff and developing care plans for newly-diagnosed students and their families.

In Part 1 of her series, Audrey discussed how diabetes education can help lower your blood sugars and reduce the risk of diabetic retinopathy. In Part 2, she emphasized the significance of the A1C test in the effective diagnosis, treatment, and management of diabetes. In Part 3, Audrey explained the importance and benefits of healthy eating as part of a comprehensive diabetes care plan.

In this month's installment, Audrey discusses the importance and benefits of exercise as a critical component of a comprehensive diabetes care plan. As Audrey says, "Remember this when it comes to exercise: If you are doing nothing, do something. If you are doing something, do more!"

The Importance of Exercise

Exercise is an essential part of the diabetes management plan. There are many benefits to incorporating this healthy habit into your diabetes care. It is an effective way to lower your blood sugars and, over time, lower your A1c. In the long term, regular exercise can protect you against many of the serious complications of diabetes: heart disease, retinopathy, neuropathy, and kidney failure.

According to the American Diabetes Association, regular physical activity:

  • lowers blood pressure and cholesterol
  • lowers the risk for heart disease and strengthens your heart
  • improves blood circulation
  • burns calories to help you lose or maintain weight
  • increases your energy for daily activities
  • helps you sleep better
  • relieves stress
  • strengthens your muscles and bones
  • keeps your joints flexible
  • improves your balance to prevent falls
  • reduces symptoms of depression
  • improves your overall quality of life

Exercise and Blood Sugars

There are two ways that exercise lowers blood sugars:

  • When you are exercising, your cells become more sensitive to available insulin, which helps your cells to take up blood glucose during and after the activity.
  • When you contract muscles, another mechanism is activated that allows cells to use blood glucose for fuel without the need for insulin.

The American Diabetes Association recommends a combination of aerobic forms of physical activity and strength training for maximum effect:

  • Aim for at least 30 minutes of moderate-to-vigorous aerobic exercise five days a week: brisk walking, dancing, and swimming.
  • In addition, try to do strength training activities two days a week: using weights, resistance bands, or doing exercises that use your own body weight to work your muscles, such as push-ups or sit-ups.

Safety Tips for Getting Started

  1. Consult with your doctor before getting started. There may be special considerations and precautions to take if you have known complications, such as heart disease, neuropathy, and visual impairment. You can still exercise, but you may need to adapt your routine. A personal trainer, physical therapist, or vision rehabilitation professional can help you pick safe activities. Your doctor can help you coordinate your exercise plan with your diet and medications.

  2. Wear a medical alert ID while exercising. You can purchase these IDs at a drugstore or medical supply store or order an ID for free at the Diabetes Research and Wellness Foundation website.

  3. Start slowly and gradually increase your activity. Begin with a walking program. Try exercising in 10-minute intervals at first. If you are pressed for time, you can do 15 minutes in the morning and 15 minutes in the evening. Easing into regular activity helps to avoid injuries and muscle soreness from doing too much too soon.

  4. To learn how your body responds to exercise, check your blood sugar before, during, and after your activity when first starting a new routine. Ask your doctor what guidelines to follow with respect to your blood sugar levels. Generally, it is safe to exercise when your blood sugar is between 100mg/dl and 250mg/dl. You may need to eat a snack with 15-20 carbohydrates if you are below 100mg/dl. Postpone your workout if your blood sugar is higher than 250mg/dl and monitor your urine for ketones until it returns to a safe range. Exercise can lower your blood sugar for up to several hours after the activity. The harder and longer the workout, the longer it can affect your blood sugar afterward; therefore, check your blood sugars after exercise too. Discuss any patterns of concern with your doctor.

  5. Be prepared to treat low blood sugar symptoms while exercising. Carry your glucometer and a fast-acting carbohydrate snack to correct a low blood sugar episode. Stop exercising if your blood sugar is 70mg/dl or below or you feel shaky, weak or confused. Eat 3-4 glucose tabs, ½ cup fruit juice or 5 hard candies to raise your blood sugar and recheck in 15 minutes. Repeat as needed. You can resume your workout once your blood sugar returns to a safe range. For more information, see Hypoglycemia and the 15/15 Rule and Watch for Symptoms of Low Blood Sugar.

  6. Keep a routine with meals, exercise and medication times. Maintaining consistency can help control your blood sugars and prevent highs and lows.

  7. Work out with a friend who knows you have diabetes. Be sure your friend knows what to do if you have symptoms of low blood sugar. The buddy system will also help keep you encouraged and motivated.

  8. Wear clean socks and well-fitting shoes that match the activity. Be sure to check your feet for irritations, cuts, blisters or sores when starting an exercise routine. To avoid serious infections, wash your feet daily and report any new foot problems to your doctor.

  9. Drink water before, during and after exercise to maintain hydration. Dehydration can cause your blood sugar levels to rise. Drinking water can bring blood sugar down when it is elevated.

  10. If you experience sudden pain, stop what you are doing. Some muscle soreness can be expected, but pain is not normal. Pain is your body's way of warning you that something is wrong. If a movement hurts, don't do it. If you experience chest pain, shortness of breath, or other cardiac symptoms, call 911 immediately. Carry your cell phone for emergencies while exercising.

  11. Have fun with fitness and enjoy the benefits. Remember, when it comes to exercise, "If you are doing nothing, do something. If you are doing something, do more!"

Additional Information


Topics:
Low Vision
Health
Sports
Getting Around
Diabetes and diabetic retinopathy

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