An exclusive video producted by the Macular Degeneration Foundation at the 2019 meeting of the Association for Research in Vision and Ophthalomogy (ARVO)
Gena Harper – Morgan Stanley Wealth Management Senior Vice President
Statistically Significant Slowing of Disease Progression Seen at 12 Months APL-2 is a synthetic peptide which shuts down the complement activation system responsible for local inflammation, tissue damage (as in dry AMD) and the resulting blood vessel growth (angiogenesis in wet AMD).
Discovered by Professor John Lambris, University of Pennsylvania, APL-2 (formerly called POT-4) was the first complement inhibitor tested in patients with dry AMD, also called “geographic atrophy”. On Feb. 10, 2015, Apellis Pharmaceuticals announced the beginning of Phase I clinical trial of APL-2. The multi-center trials, labeled ASAP II, focused on establishing safety of intravitreal injections of APL-2.
After success at that stage in 2015, Apellis began a larger Phase II trial. Now the company reports that APL-2 has demonstrated a statistically significant slowing of geographic atrophy over 12 months, while appearing to increase in the second 6 months of the study. This represents a slowing of the rate of degeneration by almost half, according to Apellis founder and CEO Cedric Francois, MD, PhD. Plans are underway to move forward with Phase III in 2019.
More Information: APELLIS
A report from the National Poll on Healthy Aging reveals that more than half of older patients surveyed said their primary care providers have not asked them about their vision. Considering the number of ailments that can affect the aging population, vision is 3rd and unfortunately often overlooked.
This is concerning since the incidence of age-related macular degeneration (AMD) will likely increase as the number of senior adults grows. There is not yet a cure for the “dry” form of the disease, but the “wet” form (wherein blood vessels leak into the retinal layers) can be treated if caught early.
The survey solicited responses from 2,013 participants from ages 50 to 80 years with the following results:
• 58% said their primary health care provider did not ask about vision.
• 27% said they had been diagnosed with cataracts, diabetic eye disease, glaucoma or macular degeneration.
• 17% said they had their vision checked using an eye chart at a primary care visit.
• 91% had an eye exam within 2 years of a PCP asking about their vision.
The researchers wrote that “Findings from this poll underscore the important role that primary care providers play in promoting eye health. People with diabetes, a history of eye disease, or lower household incomes were more likely to have had a conversation about vision with their primary care provider, suggesting that primary care providers may be more likely to discuss eye health with those known to be at high risk for eye conditions”. AMD, however, does not always show symptoms until it has progressed significantly. For that reason, every senior adult should request that at least a cursory eye exam be performed at each annual physical.
We love to hear from our readers, especially those with an encouraging story. Have you found a practical way of coping with low vision that improved your quality of life? What activities bring you joy in spite of the many challenges? Please use our “Contact Form” to submit your story and we will consider it for publication. … Thank you, Liz
by Adam Pope 1/23/19
Researchers from the University of Alabama at Birmingham Department of Ophthalmology and Visual Sciences, along with collaborators from the University of Iowa, have discovered a genetic biomarker that is associated with age-related macular degeneration and delayed rod-mediated dark adaptation.
“We have previously shown that delayed rod-mediated dark adaptation is the first functional risk factor for early AMD,” said Owsley, the Nathan E. Miles Chair of Ophthalmology. “Delayed dark adaptation means it takes these individuals much longer to adapt to a dark environment.” In other words, older adults with delayed dark adaptation have a heightened risk for developing AMD within the next few years.
In the recently published study, Owsley and Curcio, with collaborators Robert F. Mullins and Edwin M. Stone of the University of Iowa, established that older adults with delayed dark adaptation are also more likely to have these high-risk genetic polymorphisms at chromosome 1 and chromosome 10.
“This finding was the first genotype-functional phenotype association found in AMD research,” Owsley said. “What we find particularly exciting is that the ARMS2 genotype-phenotype association emerges even at pre-clinical stages of AMD … that is, in older adults who do not yet have AMD. Being able to assess risk at such an early stage could lead to new preventive measures”.
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Written By: Kierstan Boyd
Reviewed By: G Atma Vemulakonda, MD
Jan. 27, 2019
Can you have cataract surgery to restore some clear vision if you have macular degeneration?
Before recommending cataract surgery, your ophthalmologist will want to find out whether most of your vision loss is caused by the cataract or by the AMD. Some people who have a lot of damage to their retina from macular degeneration won’t see much or any vision improvement from cataract surgery.
Your ophthalmologist will examine your retina and take photographs to assess its condition. They will also take a look at how cloudy your lens is to see how much vision the cataract may be blocking. And before recommending cataract surgery, your ophthalmologist will check your vision to see if a change in your eyeglass prescription or even low vision magnifiers may be enough to see better. Having cataract surgery with AMD may not restore your ability to do up-close tasks, such as reading. Removing the cataract will allow more light to enter the eye, but that may not be enough for good central vision. We need a clear lens and a healthy retina for sharp vision.
Does Having Cataract Surgery Make AMD Worse?
Depending on the type of AMD you have, the answer is not fully known at this point. If you have the “dry” form of AMD, there is no evidence that cataract surgery will make your AMD worse. However, if you have the “wet” form, it is not clear if cataract surgery will negatively affect your macular degeneration. Cataract surgery causes inflammation inside the eye, which in theory could make wet AMD worse. However, results of multiple studies have been inconsistent, so we don’t know for sure if cataract surgery worsens wet AMD.
On the positive side, there is no evidence that having cataract surgery will make you more likely to develop dry or wet AMD if you don’t already have it.
Fortunately, for those struggling with the double whammy of vision loss from both AMD and cataracts, studies have shown that cataract surgery can improve vision in those who are candidates for the procedure. You and your ophthalmologist can discuss your options for achieving better sight.
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The number of people who are visually impaired and blind in the United States is estimated to be roughly 5 million, and is expected to rise because of the aging of the “Baby Boomer” generation, and may double by 2030. Macular degeneration is the major cause of impaired vision in the older population. Diabetic eye disease and glaucoma are also more common in the elderly. Retinitis pigmentosa, various congenital diseases, stroke, trauma and many other causes of vision loss continue unabated.
Most persons who are recently visually impaired will benefit from utilizing services that provide examination, counseling, home visits, demonstration and provision of low vision aids and instruction in modified daily activities. Those born with impaired vision and the student with low vision can benefit from services to achieve their goals for independence and hopefully employment.
Providers of services for individuals who are blind and visually impaired are diverse and unevenly scattered about the United States. Urban areas have more services and options. All states have a Department of Vocational Rehabilitation Services (VRS) that provides assistance to those with disabilities seeking careers, education and employment. The American Foundation for the Blind (www.afb.org) has a directory on their website that lists all kinds of services in each state as well as national programs such as the National Library Service for the Blind and Physically Handicapped which will deliver audio books to your home at no cost.
Types of Low Vision Service Providers
In order to have the best possible functional vision, a person will want to have a low vision examination by an ophthalmologist or optometrist specializing in low vision. The purpose of this examination is to go beyond glasses and contact lenses, and see what optical and non-optical devices can help enhance the individual’s ability to use their vision for daily needs. This is an extra step beyond a regular eye examination and may be provided in another location by trained professionals.
1) Ophthalmology and Optometry Training Programs
Many medical university training programs for Ophthalmologists and Schools of Optometry have low vision rehabilitation clinics, with medical professionals such as ophthalmologists, optometrists, occupational therapists and others participating. They provide comprehensive evaluation of each individual, and usually have Occupational Therapists helping with training and home visits. These are almost always of high quality and engaged in research. Currently, they are not present in all university training programs, but may be in the future due to recent emphasis on vision rehabilitation by the leadership of the American Academy of Ophthalmology. As they are primarily in large metropolitan areas they may not be readily accessible to many in remote rural areas.
2) Private Non-Profit Organizations for the Blind and Visually Impaired
There are private non-profit organizations which specialize in serving individuals with vision loss scattered throughout the United States. In their Low Vision Clinics, most provide an initial functional evaluation by an ophthalmologist or optometrist, followed by a wide gamut of services including adjustment counseling, adapted independent living methods, communication skills training, orientation & mobility services, and instruction and use of assistive technology.
Home and center based functional vision assessments are also done by qualified field staff such as Occupational Therapists, (OTs) and Certified Vision Rehabilitation Therapists (CVRTs). Most have an inventory of adaptive devices, magnifiers, lighting devices, and non-optical aids for demonstration and provide instruction in their use. In addition, Certified Orientation & Mobility Specialists (COMS) provide assessment and instruction to assist in daily travel.
There are over 150 different private organizations such as the Carroll Center for the Blind (Newton, Massachusetts), the Center for the Visually Impaired (Atlanta, GA), the Braille Institute (Los Angeles, CA) and Community Services for Vision Rehabilitation (Mobile, AL). Some of these organizations are known as Lighthouses for the Blind and are found in major cities – such as the Lighthouse Guild in New York, Chicago Lighthouse, New Orleans Lighthouse, San Antonio Lighthouse, San Francisco Lighthouse, etc.
There is an association of private non-profits known as the VisionServe Alliance which has a list of member organizations on their website at http://www.visionservealliance.org . This list includes most of these organizations.
3) Private for-profit Low Vision Services
Private for-profit
low vision services and clinics provided by an Optometrist or
Ophthalmologist as part of an individual general optometry or
ophthalmology practice vary greatly in the types of services they
provide. Some only provide a limited number of available magnifiers,
and others have a wide variety of low vision products. Typically they
do not provide counseling, training in adaptations and/or home visits
unless they have a Certified Vision Rehabilitation Therapist,
Certified Low Vision Therapist or Occupational Therapist on staff.
4) Veterans Administration (VA).
Veterans may be
eligible for care for any eye problem, even if non-service connected,
such as macular degeneration. Although some services may be dependent
on the veteran’s income, these qualifications may be waived if the
veteran is legally blind. There are special counselors (VIST
Coordinators) who deal only with veterans who are blind and visually
impaired. There are 10 special Blind Rehabilitation Centers scattered
throughout the US. These are inpatient facilities offering the best
rehabilitation care available. Any veteran with any degree of vision
loss should consider availing themselves of help from the VA.
5) State
Vocational Rehabilitation Agencies
State Vocational Rehabilitation Services (VRS) agencies are the largest providers of care to the visually impaired and blind in the US. They are either general agencies serving all disabilities or specialized agencies serving only those with vision impairments.
They are funded by the U. S. Department of Education’s Rehabilitation Services Administration (RSA). RSA has a budget of $3.2 billion that is granted to the states. Grant applications are made by each state individually, and matching funds (about 20%) must be provided by the state. The amount granted per state depends on the population of the state and the amount requested and matched.
The money obtained is then administered by each state individually. Almost all are called “Department of Rehabilitation Services (DSR)” or “Department of Vocational Rehabilitation Services (VRS)” and may be under the state Departments of Labor, Education or Health & Human Services. The funds obtained are for the rehabilitation of persons with all disabilities, not just for vision impairment. Hearing loss, loss of an arm or leg, stroke, mental illness and other disabilities are also included.
Goal of Vocational Rehabilitation Services
The goal of vocational rehabilitation services is primarily to help people with disabilities enter and/or remain in the work force. Thus, emphasis is placed on job training, use of adaptive aids, workplace modifications and working with employers. The career development of young people who are in transition from high school to post-secondary education or employment is also a priority for VRS. Education Services from kindergarten through high school graduation are provided in local schools or residential schools for the blind separate from VRS in most states.
Rehabilitation Counselors are the coordinators/case managers who provide help for the working age group. They generally have a Master’s degree in rehabilitation counseling. They assist individuals in developing a plan to learn adaptive skills, provide career counseling, provide vocational training opportunities and assist with job placement. Their priority is to help people get to work.
No upper age limit on working assistance
Employment and job retention services through VRS are available starting at age 16, or slightly younger in some states. There is no upper age limit for both job employment and job retention services. If the individual with a documented disability is motivated to work, can benefit from services, and there is feasibility of successful employment, they are eligible for vocational rehabilitation services. This might include provision of adaptive aids and devices, adaptive skills training, training in assistive technology, orientation & mobility, low vision services, or job assistance.
6) State Senior Services
Independent Living for Older Individuals who are Blind (OIB)
Although the major thrust of state VRS is toward education and employment, a secondary goal is to help non-working seniors with visual impairments maintain or regain their independence and “age in place” – in their own homes. Some of the federal money granted to and administered by each state VRS is allocated to services for seniors. The age of a senior is defined as 55 or older, although most who benefit from these programs are above 65.
Who actually administers the Senior Programs?
The funds for senior programs is an additional allocation to each state by RSA and is administered through the designated state VRS program. In some states, help for seniors is kept within the state VRS program or “in house”, but it may be contracted out to non-profits. The model of service delivery in each state is determined through the VRS program administration of that state.
What is provided for the seniors?
Emphasis is placed on safe, independent functioning for the senior who lives with vision loss. Based on individual need, service provision includes Center based or home visits by a cadre of qualified professionals including Certified Vision Rehabilitation Therapists (CVRTs) also known in some states as Rehabilitation Teachers (RTs), Occupational Therapists (OT), Certified Orientation & Mobility Specialists (COMS) and Certified Low Vision Therapists (CLVT). The CVRT or OT will begin with an assessment of the home for safety issues (loose throw rugs, poor lighting, lack of hand rails, etc.) to prevent falls and work with the individual to determine what types of instruction or additional services might be needed. Instruction in daily activities such as cooking, laundering, hygiene, financial management, communication, and other daily activities. Often, magnifiers, talking watches, timers, and simple, inexpensive aids are provided. In many states, expensive electronic magnifiers or eyeglasses are not usually provided.
Visual eligibility for services vary by state. In some states, VRS assistance is limited to those who are legally blind (visual acuity of 20/200 or worse, or restriction of visual field to less than 20 degrees). As difficulty with routine activities begins at much lower levels of impairment, individuals may seek services before that point. In some areas services can be provided by private non-profit organizations or qualified Occupational Therapists or you may need to travel to a more urban location to find the services you need.
Are these services available everywhere in every state?
As with health care in general in the United States, there is considerable variation from state to state and within different regions of the state. Theoretically every state provides some assistance to all visually impaired people over the entire area of the state. However, there may be remote rural areas that can be visited only infrequently. Trials of interactive internet services, called “Telehealth” or “Telerehabilitation” are ongoing in an effort to fill this need.
For a list of state VR agencies see http://www.ntac.blind.msstate.edu/information-and-resources/ncsab/
Finding help near you
a) Ask your own eye doctor. He/she should be able to advise you depending on your own individual problems and needs and what is available locally.
b) Go to the Vision Aware “Vision Connect” web site at http://www.afb.org/directory or
c) The VisionServe Alliance lists many private non-profits and Lighthouses at http://www.visionservealliance.org
d) You can find a list of state and territorial VR programs at http://www.ntac.blind.msstate.edu/information-and-resources/ncsab/
e) Information and direction is available at the American Academy of Ophthalmology’ “Smart Sight” at http://www.aao.org/low-vision
f) For veterans, call 1-877-222-8387 or go to http://www2.va.gov/directory/guide/home.asp
Conclusion:
For people of any age, in every state of the Union, help, education and assistance is available. Seek and ye shall find.
Joe Fontenot MD, CLVT
Medical Director, Community Services for Vision Rehabilitation, Mobile Alabama
B. J. LeJeune, CRC, CVRT
Director of the Older Individuals who are Blind Training and Technical Assistance Center (OIB-TAC), National Research and Training Center on Blindness and Low Vision, Mississippi State University
American Academy of Ophthalmology
Written By: David Turbert and Dan T. Gudgel
Reviewed By: Andrew George Iwach, MD
Jan. 28, 2019
Cannabis and currently available compounds derived from marijuana – like CBD – are not an adequate treatment for glaucoma, or any eye condition. To treat glaucoma, eye pressure must be managed 24 hours a day. Marijuana is not a practical treatment for constant use. And more research is still needed into the exact effects of cannabis and cannabis compounds on eye pressure and glaucoma.
The American Academy of Ophthalmology does not recommend marijuana or other cannabis products for the treatment of glaucoma. The American Glaucoma Society and the Canadian Ophthalmological Society agree.
Several current, effective treatments for glaucoma are more reliable and safer than marijuana. If you have glaucoma, you should follow your ophthalmologist’s advice to get the treatment that’s right for you.
________________________
The bottom line about marijuana and glaucoma is:
The largest association of eye physicians and surgeons in the world does not endorse cannabis or its derivates as a glaucoma treatment.
Do not self-medicate with marijuana in an attempt to treat glaucoma. You can lose your vision if you don’t have a reliable, effective treatment for glaucoma.
Speak with your ophthalmologist to find the glaucoma treatment option that’s best for you.
Tell your doctor if you do use marijuana regularly.
___________________________
What is the Connection Between Glaucoma and Marijuana?
Glaucoma is an eye condition in which the optic nerve becomes damaged over time, first reducing peripheral vision before possibly leading to total blindness. One cause of optic nerve damage in glaucoma is higher-than-normal eye pressure (intraocular pressure or IOP).
As marijuana has been legalized for medical or recreational use in more U.S. states and Canada, it has become more visible and discussed as a possible treatment for many health conditions. Research in the 1970s and 1980s did show a measurable decrease in intraocular pressure for three or four hours after smoking cannabis or ingesting THC as a pill or injection. But to treat glaucoma and save vision, eye pressure has to be controlled 24 hours a day.
To reduce intraocular pressure by 3 to 5 mm Hg — and maintain that reduction — you would have to ingest about 18 to 20 mg of THC six to eight times a day, every day. The possible negative effects on mood, mental clarity and (if smoked) lung health would be significant. You would not be able to drive, operate machinery or engage in many common activities. In addition, the cost of using marijuana every three to four hours, every day makes it cost-prohibitive for most patients.
As a comparison, alcohol also has a moderate intraocular pressure-lowering effect for an hour or so after a drink. But no doctor would recommend that you drink alcohol every hour to treat glaucoma. Many other effective treatments are available that don’t have the side-effects of alcohol.
Studies Haven’t Proven That THC is Effective or Reliable for Glaucoma Treatment
Studies have been done on THC eye drops, pills and cigarettes. Eye drops led to burning, irritated eyes and were shown to not lower eye pressure. A sublingual (placed in the mouth under the tongue) THC compound found no reduction in intraocular pressure. For another study, glaucoma patients were offered THC-containing pills and/or cigarettes. Within nine months all of them asked to stop due to side effects.
As scientists learn more about glaucoma, they have also come to understand that high intraocular pressure in the fluid at the front of the eye is not the only cause of optic nerve damage. Increasing evidence shows that reduced flow of blood to the optic nerve may also cause damage in patients with glaucoma. Marijuana not only lowers eye pressure, it also lowers blood pressure throughout the body. As a result, marijuana has the potential to lower the blood flow to the optic nerve, effectively canceling out the benefit of lowered intraocular pressure.
What About CBD for Glaucoma?
In recent years, CBD has received a lot of attention and scrutiny. CBD is a derivative of cannabis that doesn’t have mood-altering effects. But just like cannabis that’s smoked or eaten, there is no accepted, current research that shows CBD to be an effective treatment for glaucoma. In fact, one recent study showed that CBD may actually increase IOP, which would make glaucoma worse.
What is the Future of Marijuana for Glaucoma Treatment?
Currently, the only way to control glaucoma and prevent vision loss is to lower the pressure in your eye. Your ophthalmologist can treat glaucoma with medication, such as prescription eye drops, or surgery, depending on the type of glaucoma and how severe it is.
Scientists are exploring whether the active ingredients in marijuana may yet offer a glaucoma treatment. If the effects of cannabis compounds can be isolated, made to be long-acting, and the side effects eliminated, they may lead to new treatments in the future. However, such developments require more research and are years away from becoming a reality.
It is normal for a patient to experience a number of emotions when faced with the possibility of an eye disease. The thought of blindness brings despair and depression. The enemy behind most of these negative emotions, however, is fear! To survive any age-related condition, we must become warriors! That’s right, warriors!
The struggle to deal with challenges offers us the opportunity to learn patience! Think about frustration and how it causes every situation to become impossible. When we give in to FEAR and let it take over our life we are virtually powerless. The future looks black and hopeless.
So to be empowered, we have to identify the enemy and take away the power of the unknown by replacing it with knowledge. Education about Macular Degeneration and how to live with challenges is exactly what our organization is about. So if you are reading this, you are already engaged in a transition to low vision that will allow you to experience the joy of today.
Knowledge, by the way, is your armor! The more you are able to limit your risk factors; learn about treatments; and find products to help you navigate your independent living the less you will feel like a victim.
By the way, total blindness and also the extent of vision loss is different for each patient. Extreme vision loss is possible but it is not the case for most people.
Dr. Ari Weitzner reported from the World Ophthalmology Congress that a small study indicated that early intervention using low-vision aids can greatly reduce the severity of depression related to vision loss in patients with AMD.
Genentech has announced positive results from the Phase II STAIRWAY study which explored the extended durability of faricimab (RG7716) in the treatment of wet age-related macular degeneration (AMD).
According to Sandra Horning, M.D., chief medical officer and head of Global Product Development, “The STAIRWAY data show the potential of faricimab to allow fewer injections while achieving and sustaining the same visual gains seen with a current standard of care.”
Based on these results, a global Phase III program for faricimab in wet AMD is anticipated to commence in 2019. Two pivotal Phase III studies for faricimab for people with diabetic macular edema (DME) are currently open and enrolling: RHINE and YOSEMITE. These two studies are designed to investigate the efficacy and safety of faricimab compared with Eylea (aflibercept) .
California companies lacked scientific evidence that their “amniotic stem cell therapy” could treat or cure macular degeneration and other serious diseases.
A California-based physician and the two companies he controls have settled charges of deceptively advertising that “amniotic stem cell therapy” can treat serious diseases, including Parkinson’s disease, autism, macular degeneration, cerebral palsy, multiple sclerosis, and heart attacks. The defendants even claimed that the therapy could restore the vision of blind patients, citing the case of a “101 year old Lady once blind for 7 years” who, thanks to stem cell therapy, could see again. According to the Federal Trade Commission report, Dr. Bryn Jarald Henderson, D.O. and the two companies he owns and operates (Regenerative Medical Group and Telehealth Medical Group), earned at least $3.31 million offering stem cell therapy between 2014 and 2017. Initial stem cell therapy injections ranged from $9,500 to $15,000, with patients encouraged to undergo multiple treatments. Follow-up “booster” treatments cost between $5,000 and $8,000 each. The settlement prohibits the defendants from making these and other health claims in the future unless the claims are true and supported by competent and reliable scientific evidence. The settlement also imposes a partially suspended $3.31 million judgment and requires the defendants to notify current and former patients about the order within 30 days.
This action should serve as a warning to other companies who are making unsubstantiated claims about stem cell “cures”. At this time, no stem cell treatments for retinal diseases have been approved for clinical use by the US Food and Drug Administration (FDA). Anyone considering participation in a clinical trial should ask if the FDA has reviewed the treatment. An honest health care provider would be able to confirm this information by providing a New Drug Application (NDA) number and the chance to review the FDA communication approving its experimental use. Ask for this information before getting treatment—even if the stem cells are your own.
Joseph L. Fontenot MD, CLVT
Medical Director, Community Services for Vision Rehabilitation
600 Bel Air Blvd, Suite 110 Mobile Alabama
Scientists at the University of Birmingham are one step closer to developing an eye drop that could revolutionize treatment for wet age-related macular degeneration.
The condition is currently treated by injections of anti-VEGF drugs into the eye. Drops have already been tested successfully in rats. This latest study, published in Investigative Ophthalmology & Visual Science (IOVS), demonstrates that eye drops can deliver a therapeutically effective amount of drugs to the retina of larger mammalian eyes like rabbits and pigs. Pending patents for the eye drops are now owned by U.S. based company, Macregen Inc.
A team of U.K. researchers at the University of Birmingham Institute of Microbiology and Infection is working with the company to develop a novel range of therapies for wet AMD and other eye diseases. The combined team is expediting proof of concept studies. Upon completion, clinical trials could begin as early as the Spring 2019.
An exclusive MD Foundation video interview with the researcher available here:
by Joe Fontenot MD, CLV, Peyton Clarkson
Go Go Grandparent was started 3 years ago to offer ride-sharing opportunities to those without smart phones and necessary apps. It is available wherever Uber or Lyft is operating.
This means that instead of contacting Uber or Lyft yourself, you call Go Go Grandparent with a regular phone and they make all the arrangements for you. This includes, arrival time and notifying the driver of any special needs or disabilities.
The company says that it only selects drivers with a 4.9 or greater rating with Uber or Lyft. The cost of Go Go Grandparent is 27 cents per minute of transportation time. This is in addition to the basic fare charged by Uber or Lyft, which depends on location, time of day, availability and other factors. On several recent rides using Go Go Grandparent with Uber, the added cost was slightly more than 20% of the total cost. Tipping is by cash at the discretion of the client.
You may join this company with no contract or commitment on their website or by calling 855-464-6872. A credit card is required.
by Dan Roberts
This Month the DMV renewed my license for another four years. I passed their very basic eye exam, so they decided that my vision was good enough to allow me to take the wheel.
But wait! They didn’t ask about my retinal disease which could take away my remaining functional vision before my next renewal. Nor did they ask about my poor night vision, serious problems with glare, and low contrast sensitivity. And they didn’t ask about the times I’ve had close calls due to blind spots in my visual field.
Nope, they decided I could safely negotiate the highways with drunks, druggies, neurotics, and sleep-deprived drivers all speeding less than ten feet apart on the way to places they just have to be, no matter what the cost. Do they really want to add me to that mix?
So I have decided to continue being one less impaired driver. My shiny new license will remain safely tucked away behind my Medicare and AARP membership cards. It was a tough decision, but someone had to make it. I appreciate the DMV’s trust in me, but now the only way I’m going to meet others on the road is as that guy waving at them from the passenger seat.
The FDA has recently approved Luxturna, a new gene therapy developed by Spark Therapeutics, to treat an inherited form of vision loss that can result in blindness. The most prevalent inherited retinal dystrophies are retinitis pigmentosa (RP), Leber congenital amaurosis (LCA) and Stargardt disease (SD), all of which have in common a mutation of the RPE65 gene. Patients with Leber congenital amaurosis will be the first beneficiaries of retinal gene therapy, with RP and SD to follow after further study.
“I believe gene therapy will become a mainstay in treating,and maybe curing, many of our most devastating and intractable illnesses,” said FDA Commissioner Scott Gottlieb, M.D.
More Information: LUXTURNA Website
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Source: American Academy of Ophthalmology
Millions of people who put up with seeing annoying specks drift through their field of vision may now have a safe, high-tech solution to their problem. A study of patients who had laser treatment to vaporize these flecks and spots known as floaters, showed a very low complication rate, according to research presented at the 121st Annual Meeting of the American Academy of Ophthalmology. Additionally, most patients reported a significant improvement in their vision.
Eye floaters are a general term describing the specks, threads, cobweb-like images, or large clouds that can occasionally drift across the line of vision. Most floaters are bits of a protein called collagen. They’re part of a gel-like substance in the back of the eye called the vitreous. As you age, the vitreous slowly shrinks and forms opacities of varying size and shape. What you see isn’t the floater itself, but the shadow it casts onto the retina. Floaters can move as your eyes shift.
“The new laser technique is slowly growing in acceptance, and an increasing number of ophthalmologists are adopting it in Europe and the U.S.,” said Dr. Singh. “We have also founded the International Ophthalmic Floater Society, which is open to ophthalmologists worldwide. It’s aimed at studying the merits of this and other treatment options, sharing experiences and protocols, and raising awareness.”
by Dr. Joe Fontenot – CLVT Medical Director
What is a “blind spot” or scotoma?
A scotoma is a “blind spot” in one’s vision. It is defined in the Miriam-Webster dictionary as: “scotoma or scotomata: a spot in the visual field in which vision is absent or deficient”.
What causes scotoma?
Blind spots in vision may be caused by eye disease, problems with the optic nerve, brain or even psychological problems.
Migraines may also cause temporary blind spots. However, most blind spots are caused by eye disease that is limited to one part or one spot in the eye (like macular degeneration) which causes a localized, non-functioning area that results in a blind spot or scotoma in the center of the visual field.
Scotoma in Age Related Macular Degeneration (ARMD)
The scotoma of ARMD are usually described by those affected as being a cloudy, ill-defined area rather than discrete and well demarcated. They are rarely absolutely black, but rather gray or off-white. They may have different shapes or colors in different lighting conditions. The normal retinal tissue is replaced by the degenerative lipid and fibrous process of macular degeneration. This occurs in an irregular and sometimes incomplete fashion. No image or an incomplete image is transmitted to the brain from the affected areas, resulting in a “blind spot” or scotoma.
Arrow indicates the pale yellow areas of macular degeneration which can cause a scotoma (blind spot).
When are the scotoma first noticed?
Scotoma are often not noticed if they involve only one eye. The other eye fills in the gap. Even if both eyes have scotoma in the same location, the loss of vision in a small area may not be noted. The brain unconsciously fills in the blind spot with images from the surroundings. This is a process called “perceptual completion”.
Charles Bonnet Syndrome
Some people see images in their blind spots. This is called “Charles Bonnet Syndrome” and is generally thought to be the result of the brain’s unconscious effort to put something into the area where nothing is perceived. These images may occur frequently and may be concerning or alarming. People usually are relieved once the nature if the images are explained to them. They usually occur at rest and may be dispelled by becoming active, getting up and moving about. The images usually become less frequent and disturbing over months or years.
Eccentric Viewing and Preferred Retinal Locus
If you have a scotoma in the center of your visual field and look straight ahead, you will not be able to see what you are looking at. You will have to look to one side or another, or up or down to get your blind spot out of the way. This is “eccentric viewing”, and the place on your retina that you habitually direct the image to is the “preferred retinal locus”. Techniques for making the most of eccentric viewing can be taught by Occupational Therapists (OT’s) to achieve the best reading skill possible despite having scotoma.
What to do if you have a scotoma?
See your eye doctor. Some of the scotoma may improve and become smaller with treatment by Anti-VEGF (injection) therapy, or at least kept from enlarging.
Check your vision frequently with an Amsler grid
Understand and use eccentric viewing techniques
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by Joe Fontenot MD, CLVT – Medical Director and Patricia Hacker – Equipment Specialist from Community Services for Vision Rehabilitation (CSVR) 600 Bel Air Blvd, Suite 110 Mobile Alabama 36606
In the early 1990’s, the first head mounted electronic magnifiers were produced. These had the advantage of being able to vary the strength of magnification from mild to very strong, depending on the need.
Since then, several different devices have been produced and marketed, with more sophisticated ones becoming available in the last 5 years. They are more versatile than the simple glass-frame optical non electronic telescopes, have more capabilities and can do more than simple magnification.
Advantages of Head Mounted Electronic Devices:
Disadvantages:
Clinical Evaluation Before Buying a Head Mounted Device
All with vision loss should be evaluated by a vision rehabilitation specialist before deciding to purchase any aid or magnifier, especially the expensive head mounted devices. There are many relatively inexpensive aids that may accomplish an individual’s needs and goals that are less expensive than head-mounted devices and just as effective. Some devices are being aggressively marketed. The old Roman saying, “Caveat emptor” or “buyer beware” should be remembered.
If you have not been evaluated by a low vision specialist at a Vision rehabilitation clinic, you should do so before purchasing a head mounted device. For information about finding a facility near you, see the addendum at the end of this article: “Finding a Vision Rehabilitation Clinic Near You”.
Tips For Buying a Head Mounted Device
Types of Head Mounted Magnifiers
New head-mounted devices come in two categories; One with cameras that magnify and the other with cameras that use OCR readers and / or staff to help you read and navigate without having to use any vision. The first category is utilized by the visually impaired, and the second by those with very severe vision loss or total blindness.
Currently Available Head Mounted Magnifiers
Note: The following list of devices is simplified and shortened.
Prices and features may change. For full, up-to-date information,
use the company’s contact information.
Iris Vision
This new head mounted magnifier is one of the least expensive. Designed by Dr. Frank Werblin of UCLA Berkley and marketed by IrisVision. It features a magnifying window that may be changed in size and strength of magnification. It has a relatively large field of view and requires a smart phone.
Price: $2,500
Return policy: 30 days
Return cost: $250
Training: By Skype
Web site: irisvisio.com/
Phone: (855) 207-6665
The Jordy
The Jordy was produced and marketed in the early 1990’s by Enhanced Vision Systems (EVS). It has recently been redesigned and made smaller, lighter and has additional features besides magnification. It has HDMI connection for watching TV and other features.
Cost: $3620.00 w/ 4 hour battery pack or $3695.00 w/8 hour battery pack.
May return at no cost up to 30 days
Website: http://www.enhancedvision.com/
Warranty: 2 years
Phone: 888-811-3161
Nu Eyes
Nu Eyes features voice activation of magnification levels, 3D stereoscopic imaging, high-speed wireless connectivity and high-performance positional sensors and has OCR capability. (Full Android computer function optional)
Cost: $5995.00 to $6195.00
Warranty: 2 years
Website: http://www.nueyes.com
Phone: 800-605-4033
Email: info@nueyes.com
eSight
eSight is a wearable electronic magnifier for those with low vision. It allows manipulation of the image, can reverse polarity or change colors. It is now in its 3rd version and has additional features.
Cost: $9995.00
Cost of trial: $500
Warranty: 1 year (upgrades free)
Website: esighteyewear.com
Phone: 855-837-4448
CyberEyez
CyberEyez combines adjustable magnification up to 15X and an OCR reader that features a bar code reader, and facial mood recognition.
Cost: $2297.00
(Still under development)
No cost return within 30 days
Warranty: 1 year
Website: cybertimez.com
Phone: 202- 827-6883
Head Mounted Electronic Devices Without Magnification
OrCAM
OrCam communicates visual information by utilizing a small camera and a sophisticated, rapid OCR reader. In addition to reading text, it can recognize faces, money and other objects.
Mounted on an eyeglass frame, it connects to a smartphone-sized computer/battery. It discreetly relays text and other visual information by audio in real time through a tiny speaker positioned close to the ear.
Cost: 2,500 to $4,500
Telephone: 1-800-713-3741
Website: http://www.orcam.com
Aira
Aira, pronounced EYE-rah, is a rented, glass frame mounted camera that relays live images to a center where the image is viewed in real time by trained personnel who communicate with the wearer via a framemounted speaker … like having a person beside you.
Rent: From $89 per month
Wesite: https://aira.io/
Addendum:
To find a vision rehab facility near you:
A recent study showed the challenges that come with AMD, whether dry or wet, can have an impact on the general health of patients over time, compared to their counterparts without the disease.
The fear of going blind often brings about depression and an abnormal amount of stress. Counseling and direction from professionals can help the patient feel more in control and help eliminate this vicious cycle. A referral to a low-vision specialist is very important because the transition to low vision is necessary.
When a patient learns how to use the remainder vision and is trained on a low-vision device, all of sudden they feel more in control. A referral to a local support group is also important. Talking with folks that share respective fears and have found ways to compensate for low vision can make a world of difference.
Worrying about going blind brings about depression, frustration, and anger. This negativity is the beginning of a downward spiral. PLEASE! Don’t let what might happen tomorrow rob you of the joy of today. Saying positive words each day creates more opportunities for happiness. The brain has a wonderful way of taking these positive words and making them work with our treatments to reduce risk.
If you are looking for a low-vision specialist or a support group, contact our Resource Consultant, Dan Roberts at 888-866-6148. A tele-support group opportunity is also available.
by Dan Roberts – MD Foundation Resource Director
Retinal diseases are not, in themselves, painful. Prolonged ultra-close viewing, however, is often practiced by people with visual impairment. That can cause headaches of the type reported by some members of our low vision community.
Generally referred to as eye strain, such discomfort may be caused by stress on the large medial rectus muscles that control the side-to-side movement of our eyeballs. When those muscles are relaxed, both eyes are gazing straight ahead into the distance, something that doesn’t work when trying to clearly view a near object or text.
As an object draws near, our eyes gradually converge to keep us from experiencing diplopia (seeing double). The closer the object, the more our eyes converge, until they either cross or simply give up when the object gets within about 5 inches of our noses. Test this by holding up your index inger and trying to stay focused on it as you move it toward your face. The medial rectus muscles are attached to the exterior sides of the eyeballs. If those muscles are strained, we can acquire a headache as a warning that we’re overdoing it.
The most obvious solution is to avoid the necessity of ultra-close viewing by maximizing lighting and by magnifying or enlarging the task at hand. A visually impaired person, though, sometimes needs to use ultra-close viewing under less than optimum conditions. So what other accommodations can help to avoid the discomfort?
1) Use corrective lenses adjusted to your best focal distance for a speciic task.
2) Close one eye to eliminate the need for convergence.
3) Strive for the best balance between focus and convergence.
4) Keep the task in the center of your gaze, allowing your eyes’ exterior muscles to relax.
By way of explanation, focusing is done by each eyeball individually using its own internal muscles and does not involve the exterior muscles. Convergence, on the other hand, requires the exterior muscles and a headache can occur when they are overworked.
The best distance is a point at which the least convergence is required and the best focus is achieved. To help avoid a headache, maximize the distance between your eyes and the task, even if you have to sacriice a little focus.
Headaches seem to be most common in early disease states in which both eyes still retain some functional vision. If that describes you, and you are experiencing headaches, consider the above suggestions. At the same time, think about your posture and your head position … both of which can cause pain if improper.
If these suggestions do not offer relief, consult your general physician. You should not have to live with discomfort that might be easily alleviated.
The fear of going blind often brings about depression and an abnormal amount of stress. Counseling and direction from professionals can help the patient feel more in control and help eliminate this vicious cycle. A referral to a low-vision specialist is very important because the transition to low vision is necessary.
When a patient learns how to use the remainder vision and is trained on a low-vision device, all of the sudden they feel more in control. A referral to a local support group is also important. Talking with folks that share respective fears and have found ways to compensate for low vision can make a world of difference.
Worrying about going blind brings about depression, frustration, and anger. This negativity is the beginning of a downward spiral. PLEASE! Don’t let what might happen tomorrow rob you of the joy of today. Saying positive words each day creates more opportunities for happiness. The brain has a wonderful way of taking these positive words and making them work with our treatments to reduce risk.
If you are looking for a low-vision specialist or a support group, contact our Resource Consultant, Dan Roberts at 888-866-6148. A tele-support group opportunity is also available.
Many people avoid eating egg yolks due to concerns relating to the impact of serum cholesterol. Serum cholesterol has been associated with heart disease — resulting in many adults becoming increasingly careful about their cholesterol intake.
However, according to research published by Dr. Frank Hu, Harvard University, “consuming one egg per day was not found to have any substantial overall impact on the risk of coronary heart disease or stroke among healthy men and women.”
So your one to two eggs per day could be entirely benign, cholesterol-wise. Yolk has protein, iron, phosphorus, zinc, folate, selenium, and choline.
If you skip the yolk you’re also missing out on vitamin D, A, lutein and zeaxanthin which contribute to good eye health.
Recent press releases regarding the potential adverse effects of aspirin on macular degeneration have caused patients with Age-related Macular Degeneration (AMD) to discontinue their aspirin use without consulting their physician. This study weighed the benefits that aspirin provides for patients’ cardiovascular health compared to the risk of AMD worsening.
After reviewing nine cardiovascular and ten ophthalmological studies and analyzing the risks/benefits of aspirin use, researchers found that the small and still unconfirmed added risk of AMD is far outweighed by the solid benefits of cardioprotective aspirin. Patients who are taking aspirin for cardiovascular health, therefore, should not fear the possible, theoretical and exaggerated risks of exacerbating their AMD.
ARVO Posterboard #: B0333
Study Abstract Number: 3200 – B0333
Author: Christine Garabetian, et al
The U.S. Department of Transportation’s National Highway Trafic Safety Administration (NHTSA) is adding a sound requirement for all newly manufactured hybrid and electric light-duty vehicles to help protect pedestrians.
The new federal safety standard will help pedestrians who are blind, have low vision, and other pedestrians detect the presence, direction and location of these vehicles when they are traveling at low speeds, which will help prevent about 2,400 pedestrian injuries each year once all hybrids in the fleet are properly equipped.
“We all depend on our senses to alert us to possible danger,” said U.S. Transportation Secretary Anthony Foxx. “With more, quieter hybrid and electrical cars on the road, the ability for all pedestrians to hear as well as see the cars becomes an important factor of reducing the risk of possible crashes and improving safety. This regulation will ensure that blind Americans can continue to travel safely and independently as we work, learn, shop, and engage in all facets of community life.
I’m a legally blind photographer, finger painter, and author of Kindle e-books for children, teens, and adults. The arts have been a big part of my life from an early age, but having a progressive eye disease, called Retinitis Pigmentosa, or RP, made it hard to keep doing these things.
When I could no longer sketch, I discovered that I could finger paint. When I could no longer finger paint, I discovered that I could take fine art photos like my hero, Ansel Adams, with the help of a point-and-shoot digital camera set on auto, a 47-inch computer monitor, my former art education, and my remaining vision.
They say you’re lucky to have had one dream come true in life. I’ve had many. I earned two degrees, became a social worker, a mother, a writer, a finger painter, and a photographer. Being a legally blind photographer, artist, and writer has its challenges, but I find if you push yourself a little, good things can happen.
by Norra MacReady – April 16, 2016
Some cloudy news for people who work outdoors: long hours in the sun may increase the risk for age-related macular degeneration (AMD).
Compared with little or no time spent working in the sun, past but not current sun exposure showed a dose-related increase in the risk for early and late AMD among retirees, researchers report in an article published in the April issue of Retina.
“Sunlight exposure at younger age has an influence on the development of a severe eye disease…decades later,” write Tina Schick, MD, from the Department of Ophthalmology, University Hospital of Cologne, Germany, and colleagues. “The results also demonstrate that the predisposing events for the disease take place many years before morphological signs become apparent.”
The researchers studied 3701 people participating in the European Genetic Database (EUGENDA). In addition to standard demographic data and smoking history, the authors collected information on occupation type, iris color, and current and past (preretirement) sun exposure: either less than 8 hours daily or 8 or more hours daily. People who rarely went outside served as the reference group.
The authors used fundus photographs to stage the AMD. They defined early AMD as the presence of 10 or more small drusen and pigmentary changes, or intermediate or large drusen on the Early Treatment Diabetic Retinopathy Study grid; they defined late AMD as AMD with subfoveal geographic atrophy and/or choroidal neovascularization in at least one eye.
Recommendations: Start early in life wearing sunglasses and brimmed hats.
Having macular degeneration does not mean you should stop using the computer or that you would not be able to learn. If you have central vision loss from macular degeneration, computer use is not only possible, but highly advisable.
Both Microsoft and Apple are aware of the needs of the visually impaired and of the rapidly growing number of older people using the computer. A Nielsen survey in 2009 reported that the number of people over 65 using the computer from 2004 to 2009, increased by 50%. Apple computers have many accessibility features,, as does Windows. Proprietary companies have products such as ZoomText, Magic, JAWS and Window Eyes software that make computer use possible for even the totally blind.
Why should I use the computer?
The quick and easy answer is that “Everyone else does”. Using the computer allows you to keep in contact by e-mail with family and friends, search the internet, shop, plan trips and generally stay in the loop, keeping up with a rapidly changing world. Computer literacy is now a requirement for almost any job and even for much volunteer work. Computer use may even improve your mood and mental health. A 2005 study reported by the American Psychological Association found less depression in seniors who used the computer.
How can I learn to use the computer despite low vision?
More than 50% of the visits to American libraries are to use the computer. Those out of work, students, people whose computer is out of order or shared, or who seek quiet refuge from a noisy household go to a library to use the computer. Almost all libraries have computers and free computer classes for seniors. Many have instructors who are familiar with the accessibility features, and some may be familiar with the specialized adaptive software for the visually impaired.
I am a hunt-and -peck typist, and can’t see the keys anymore. What can I do?
The best thing to do is to become a touch typist. If you do not see well, the ability to use the keyboard without looking at it is an invaluable skill. There are specific programs designed for the blind and visually impaired which will teach you how to use the keyboard. Talking Typing Teacher program gives immediate voice feedback and is good for any level of keyboard skill and any degree of vision impairment.
Large keyboards with high visibility letters are available through speciality catalogues for those who want to continue hunting and pecking.
Who can tell me where to go for computer classes?
If you have vision loss of any degree, ask your local low vision clinic or state agency such as the Department of Vocational Rehabilitation or Rehabilitative Services. They usually maintain a resource list which should include computer classes. Most of these classes are free. You can also check with your local library. Most do have computer classes for different levels, especially for beginners.
Summary
Anyone living with vision loss should acquire or improve their computer skills. The opportunities to deal with further vision loss are greater if you are aware of the computer programs that will make transitioning easier.
These tips for recognizing human faces won’t work at the zoo, but they should help people with low vision in challenging social settings:
Written by: Joseph L. Fontinot MD, CLVT
Medical Dir: Community Services for Vision Rehabilitation
Mobile, Alabama
I’m sorry, who are you?
The inability to recognize faces is one of the most common complaints of people with age-related macular degeneration and is a frequent cause of embarrassments and concern in social activities.
If you have AMD, you will have blind spots in the center of your vision (central scotomas) and decreased contrast sensitivity. The blind spots will occupy part of a person’s face and the impaired contrast sensitivity prevents you from seeing shades of texture and color. Since the blind spots are funnel-shaped, being smaller at close distance and greater at further distance, you will have less difficulty recognizing people up close. You will begin to recognize people by their voice, the way they walk and dress, their size, height and other characteristics. The problem with this sort of recognition is that it is not as quick or exact as normal face recognition.
Face recognition is an important part of everyday life. We recognize people, hail them and begin a social dialog. The ability to do this is important in order to respond appropriately or know what to say. Some people may be offended if we do not recognize them.
What can be done? At a distance, any telescopic magnifier will help. It has been shown that bioptic glasses (glasses with a small telescope mounted in the upper part of the glasses) does help identify people. The new head-mounted mounted electronic magnifiers (Iris Vision, Patriot, Nu Eyes, etc.) do help. However, these are difficult to use in ordinary circumstances such as walking and would not be comfortable in some social events.
Simple tips
Speak up. Sometimes simply saying “Hello” or “Good day” will elicit a response that identifies the person or you will recognize their voice.
If the situation is appropriate, get closer. This makes your blind spot smaller, covering less of their face.
Engaging in small talk will give you clues as to identity.
Moving to the side where the person’s face is least in shadow may help and you may recognize them better from a different angle. Also, try positioning yourself so the light is behind you and on the face of the person you are trying to identify.
Knowledge of your scotoma position and your “preferred retinal focus” will help in directing your gaze so that more of the person’s face will be visible.
As always with vision loss, plan ahead. If you are going to meet a small group of people, find out ahead of time who they will be and this will help with recognition.
If all else fails, simply say “I’m sorry, I have macular degeneration and I have trouble identifying people. What is your name?”
If you are with a close friend or family member, you can quietly ask them to identify people as they approach.
A white-tipped cane will make it obvious why you do not recognize people.
There are also lapel pins saying “I have Low Vision” and you can simply call attention to the pin.
Remember that a minor degree of embarrassment is better than staying at home. Get out there! Say “Hello” to everyone.