by Maureen Duffy
Sue Wiygul Martin is the author of a just-published personal memoir, entitled Out of the Whirlpool: A Memoir of Remorse and Reconciliation, which she describes as "the story of a suicide attempt survivor and the rebuilding of a life."
Out of the Whirlpool, which began as a series of blog posts, describes Sue's suicide attempt at age 26, her subsequent blindness, and the long, hard road she follows to rebuild her life – and herself – as a blind person and blind rehabilitation professional.
Sue, who is a VisionAware Peer Advisor, has worked in the field of blind rehabilitation for over 20 years as a Vision Rehabilitation Therapist, a Low Vision Therapist, and an assistive technology specialist. Since 2007, Sue has been a Section 508 analyst with the United States Department of Veterans Affairs.
More about Out of the Whirlpool
From Sue's introduction:
I attempted suicide with a gun when I was 26 years old. I am blind by my own hand. Although I surely didn't intend it, my blindness is the result of an attempt to end my life. When I began writing about my experiences I tried, in every way, to avoid telling that one part of my story, that I am blind as the result of a suicide attempt. It just didn't work. It was like denying that I have a right arm.
While I have become quite comfortable talking about the facts of my sight loss, I know that there are those for whom this topic will be uncomfortable. Please stay with me. This is a story about adjusting to change. It is about digging up courage from hidden places. It is about choosing life. But it is also a story about crippling depression. To appreciate the strength of the human spirit, to truly feel the triumph of choosing life over death, it is necessary to look depression squarely in the face.
Her Suicide Attempt
From Chapter 1: The Whirlpool:
… I looked at the clock. It was 11:30 in the morning. Then I sank back down into the very tiny place that had become my reality. I positioned the gun and paused. If I did this, there was no turning back. This was going to be final. There was nothing, nothing else, nothing that was big enough to get me out of the whirlpool of depression. I both wanted to do this and not do it. I held my breath. I squeezed my eyes shut.
I clenched my teeth. I pulled the trigger.
Choosing to Live
From Chapter 2: I Choose Life:
I lay unconscious, alone, and bleeding for eight hours. When I regained consciousness, I knew exactly where I was and what I had done. It was dark. Completely dark. I sat up and tried to think of what I should do next. The first order of business was to figure out why it was so dark. Sitting up, I felt my face. I was covered in blood, some of it dry and crusted and some still sticky. I widened my eyes. Nothing.
Thinking the blood had dried and was keeping my eyelids closed, I placed two fingers, one on the upper and one on the lower lids of my right eye. I pried my eyelids opened. Still nothing.
I reached to follow the same procedure with my left eye, but as soon as I touched it I drew my hand back. It was too painful.
Putting the question of the darkness aside for the moment, I pondered my situation. Deep inside me there was a spark of the survivor. What did one do when one was injured? I took the first step towards living again: I got to my feet and aimed for the kitchen. I knew that there was a phone just to the left of the refrigerator.
Returning to Life
My memories of the days in ICU are hazy. I had no way of knowing when it was day or night. There was no peace to be had because of the constant beeping of machines, voices of nurses and doctors, quiet conversations of those who kept vigil by my bedside. It seemed that someone was always there.
I was heavily sedated and that might have been the only thing that kept me from demanding to know why I couldn't see. I kept telling myself that I was, after all, in a hospital and hospitals are where they cure people. They were probably just letting me get a little stronger before they did some surgery or other that would restore my sight…
What Readers Are Saying
Out of the Whirlpool is described by one reader as a "must-read for anyone in the vision field and perhaps especially for persons going through the vision loss and rehabilitation process":
This book captures the essence of the rehabilitation process like nothing else I have seen. It makes you experience sight loss and the discovery of new skills as if it is happening to you. Sue's honesty about her emotions, her warmth, clarity, and accuracy regarding the adjustment experience are striking.
A Kindle reviewer says this about Sue's compelling journey:
I could not put this book down! On one hand, it is the best book ever written in the genre of blindness literature. At its most basic level, it tells the story of how someone goes about learning the skills it takes to live in the world as a person who is blind. It does that better than anyone has done it before. Beyond that, the book is a story for every person who has ever struggled, or who is struggling to know that in the face of the most difficult challenges there is hope.
Where You Can Purchase Out of the Whirlpool
- Buy the print or audio versions at the Out of the Whirlpool website
- Buy the Kindle edition at Amazon.com
- Read the first three chapters and excerpts from the book at the Out of the Whirlpool website
Where You Can Find Sue
by Maureen Duffy
A team of American researchers has presented evidence that vision measured in the clinic is generally better than vision measured at home and conclude that vision discrepancies between patient reports and clinical testing may be due, in part, to poor or inappropriate home lighting.
The research, entitled Differences in Vision between Clinic and Home and the Effect of Lighting in Older Adults with and Without Glaucoma, was published in the November 21, 2013 issue of JAMA Ophthalmology (formerly Archives of Ophthalmology). JAMA Ophthalmology is an international peer-reviewed journal published monthly by the American Medical Association.
The authors are Anjali M. Bhorade, MD, MSCI; Monica S. Perlmutter, OTD, OTR/L; Brad Wilson, MA; Jamie Kambarian; Sidney Chang, MD; Melike Pekmezci, MD; and Mae Gordon, PhD, who represent the following institutions: Washington University School of Medicine, St. Louis, Missouri; and the University of California, San Francisco.
About the Research
From Older adults don't see as well at home as in the clinic via Reuters.com:
When older people have their vision tested in a doctor's office, the results might not reflect how well they actually see at home, according to a new study. Researchers suggest the difference could be due to poor lighting in people's homes.
"A simple awareness of this discrepancy between vision in the clinic and home may alert the clinician to recommend increased lighting or refer these patients for an in-home evaluation by an occupational therapist or low vision rehabilitation specialist," [study leader] Dr. Anjali M. Bhorade said.
Between 2005 and 2009, she and her colleagues studied 175 people age 55 and older, 126 of whom had glaucoma, an eye condition that leads to damage of the optic nerve. Participants went to a clinic for eye exams and were visited at home, where the researchers tested their vision and recorded light levels. More than half scored better on eye tests in the doctor's office compared to at home. The difference seemed to be greater for people with more severe glaucoma.
Though the new findings come primarily from a group of patients with glaucoma, they have implications for older adults with and without the condition. [One] concern could be that patients with cataracts who complain that too much glare makes it difficult to see may not qualify for cataract surgery if their vision is tested in the office, but would qualify if tested at home, [Dr. Bhorade] added.
More about the study from JAMA Ophthalmology
From the article abstract:
Objective: To compare vision measured between the clinic and home and evaluate factors, including lighting, associated with these differences.
Design, Setting, and Participants: This cross-sectional study conducted from 2005-2009 involved 126 patients with glaucoma and 49 without glaucoma recruited from the Glaucoma and Comprehensive Eye Clinics at Washington University, St. Louis, Missouri. Patients underwent clinic and home visits, were aged 55 to 90 years … and met inclusion criteria for this study.
Exposure: Participants underwent clinic and home visits, randomized to order of completion. At each visit … examiners measured binocular distance visual acuity with a non-backlit chart, near visual acuity, contrast sensitivity, contrast sensitivity with glare, and lighting.
Results: The mean scores for all vision tests were significantly better in the clinic than home for participants with and without glaucoma … Lighting was the most significant factor associated with differences in vision between the clinic and home… Median home lighting was 4.3 times and 2.8 times lower than clinic lighting in areas tested for distance visual acuity and near visual acuity, respectively. Home lighting was below [recommended levels] in 85% or greater of participants.
Lighting and Low Vision
Lighting is always an important consideration for persons who have low vision. Also, it's important to realize that our lighting needs gradually (and naturally) change over time as we grow older. As an example, the equivalent of a 100-watt bulb required for reading or other close work at age 20 increases to:
- 120 watts at age 30
- 145 watts at age 40
- 180 watts at age 50
- 230 watts at age 60
- 300 watts at age 70
- 400 watts at age 80
Many of us, however, don't increase the wattage of our lighting fixtures at home to accommodate this need for additional light.
Increased Home Lighting and Safety
Although increased lighting at home is usually helpful, it is not recommended that you create additional illumination simply by placing a higher-wattage bulb into an existing light fixture or lamp:
- Most manufacturers of lighting fixtures provide information about maximum recommended wattage limits, since exceeding the recommended wattage could cause fire or injury.
- In addition, putting a high-wattage bulb into a ceiling fixture will not necessarily produce better, more functional light; instead, it could increase glare and create more and deeper shadows.
To create better lighting in a work area for reading, cooking, using the telephone, or doing crafts, a "task lamp" (pictured at left) can be helpful. It can be either a floor or table lamp with a flexible arm or gooseneck that allows you to adjust the height and direction of the light and focus it directly on your work area.
Here's another helpful lighting tip: Cutting the distance in half between a light source and the task (by bringing the light closer to your work) will make the brightness or intensity of the light approximately four times greater.
Thus, you don't necessarily have to purchase a stronger light bulb; instead, it is helpful to move the light closer to your work. A flexible-arm task lamp is ideal for this purpose. It is usually more effective to use a task lamp with a regular 40- or 60-watt bulb closer to your work area than to use a 250-watt bulb in a ceiling fixture.
More Information about Lighting
The video series Better Lighting for Better Sight, featuring Bryan Gerritsen, M.A., CLVT, contains information about critical factors that can enhance vision, including different types of lighting, positioning of lights, contrast sensitivity, and control of glare. The series is available for purchase through AFB Press.
You can also find information on Lighting and Glare at VisionAware.org.
by Maureen Duffy
Editor's note: One of the many benefits associated with an online information center and website, such as VisionAware, is the ability to track readers' search terms [i.e., information readers are seeking as they search the Internet]. Since the earliest days of VisionAware.org, the following questions about eye doctors and eye care consistently rank within the top ten searches:
- What are the different kinds of eye doctors?
- What is the difference between an ophthalmologist and an optometrist?
Ophthalmology and Ophthalmologists
What is ophthalmology?
Ophthalmology is a branch of medicine that specializes in the anatomy, function, and diseases of the eye.
What is an ophthalmologist?
An ophthalmologist is a medical or osteopathic physician who specializes in the medical and surgical care of the eyes and the prevention of eye disease.
- An ophthalmologist diagnoses and treats refractive, medical, and surgical problems related to eye diseases and disorders.
- Ophthalmologists are licensed by state regulatory boards to practice medicine and surgery, as well as deliver routine eye care.
- An ophthalmologist will have the initials "M.D." (Doctor of Medicine) or "D.O." (Doctor of Osteopathy) after his or her name.
What does an ophthalmologist do?
- Ophthalmologists are trained to provide the full spectrum of eye care, from prescribing glasses and contact lenses to complex and delicate eye surgery.
- Ophthalmologists treat eye diseases, prescribe medications, and perform all types of surgery to improve, or prevent the worsening of, eye and vision-related conditions.
How is an ophthalmologist educated and trained?
- In addition to four years of medical school and one year of internship, all ophthalmologists spend a minimum of three years of residency (hospital-based training) in ophthalmology.
- During residency, ophthalmologists receive specialized training in all aspects of eye care, including prevention, diagnosis, and medical and surgical treatment of eye conditions and diseases.
- Often, an ophthalmologist spends an additional one to two years training in a subspecialty, or a specific area of eye care, such as glaucoma or pediatric ophthalmology.
- All ophthalmologists are required to fulfill continuing education requirements to stay current regarding the latest standards of care.
More Information about Ophthalmology
- For more information, you can visit the American Academy of Ophthalmology website.
- The EyeSmart® public awareness campaign, sponsored by the American Academy of Ophthalmology, helps Americans to take charge of their eye health; know their risk factors for eye diseases; and understand how ophthalmologists can help prevent, diagnose, and treat eye conditions.
Optometry and Optometrists
What is optometry?
Optometry is a vision care specialty that is concerned with the health of the eyes, the visual system, and related structures.
What is an optometrist?
An optometrist is a health care professional who specializes in function and disorders of the eye, detection of eye disease, and some types of eye disease management.
- An optometrist conducts eye examinations, prescribes corrective contact lenses and glasses, and diagnoses and treats eye diseases and disorders.
- Optometrists are licensed by state regulatory boards that determine their scope of practice, which may vary from state to state.
- An optometrist will have the initials "O.D." (Doctor of Optometry) after his or her name.
What does an optometrist do?
- Optometrists are trained to examine the eyes for visual defects, diagnose problems or impairments, prescribe corrective lenses, and provide certain types of treatment.
- Many (but not all) U.S. states have passed legislation that allows optometrists to perform certain surgical procedures, such as laser treatment; administer injections, such as local anesthesia or treatment for macular degeneration; and prescribe additional diagnostic, therapeutic, and oral medications. Visit the American Optometric Association website to determine if your state permits optometrists to perform these additional procedures.
How is an optometrist educated and trained?
- Prior to admittance into optometry school, optometrists typically complete four years of undergraduate study, culminating in a bachelor's degree.
- Optometrists then complete a four-year postgraduate program in optometry school to earn the Doctor of Optometry degree.
- Some optometrists go on to complete one- to two-year residencies with training in a specific sub-specialty area, such as pediatric or geriatric eye care, specialty contact lens, ocular disease, or neuro-optometry.
- All optometrists are required to fulfill continuing education requirements to stay current regarding the latest standards of care.
More Information about Optometry
- For more information, you can visit the American Optometric Association and American Academy of Optometry websites.
Low Vision Specialist
- Many optometrists and some ophthalmologists have additional credentials or specialization in low vision testing, diagnosis, and treatment, and are trained to conduct low vision eye examinations and prescribe special low vision optical devices.
- If you're experiencing significant vision loss, a low vision specialist can determine whether special optical and non-optical devices, improved lighting, or other types of specialized services and equipment can help make the best use of your remaining vision.
- You can find a listing of low vision specialists in the "Low Vision Services" category in the VisionAware Directory of Services.
In addition to the low vision providers in the Directory listings, you can find additional providers through the following directories:
- The American Academy of Ophthalmology directory. Use the subspecialty category "Low Vision Rehab."
- The American Optometric Association database. Use the "Advanced Search" and look for members of the Vision Rehabilitation Section.
Locate an Eye Care Professional in Your Area
by Maureen Duffy
As the holiday season approaches, creative drinks and cocktails are in demand! We especially like this non-alcoholic, easy-to-assemble drink – along with adaptations for our favorite blind and visually impaired "mixologists."
Apple Cider Milkshake
From MaryBeth at Dunkin Cooking the Semi-Homemade Way (used with permission), who says this about the Apple Cider Milkshake: "I highly recommend giving this a try. It's a great-tasting shake and an excellent way to enjoy the taste of apples."
- 6 scoops vanilla ice cream
- 1¼ cups apple juice
- ½ tablespoon ground cinnamon
Place all ingredients into a blender.
Blend on high speed for approximately one minute.
Serve in a glass of your choice.
Yield: Two goblets/glasses
Here are some practical, easy-to-implement adaptations for mixologists who are blind, visually impaired, or have low vision (and all other mixologists, too).
Measuring Your Drink Ingredients
Use a long-handled measuring spoon placed over a larger flat-bottomed measuring cup. If the spoon overflows, the excess liquid will spill into the cup and can be returned to the bottle or container with a funnel.
Use a white measuring spoon for darker liquids and place it over a dark measuring cup for better contrast:
Use a dark measuring spoon for white liquids and place it over a white measuring cup for better contrast:
You can also place your jigger or shot glass inside a larger flat-bottomed measuring cup:
And place your measuring cup inside a larger contrasting bowl:
Pouring Tips and Tricks
Electronic liquid level indicators will beep, buzz, vibrate, or play music to indicate when the rising liquid is close to the top rim of the glass.
When you pour, use an electronic liquid level indicator on the rim of your glass to help prevent overflow:
You can even use an electronic liquid level indicator with your champagne glass!
If You Have Diabetes
Although this recipe isn't for you if you have diabetes, you can find a wealth of information to help with meal planning, diabetes-appropriate recipes, and portion control at Resources and Support for Adults with Diabetes and Diabetic Retinopathy and How Can I Manage My Diabetes? on the VisionAware website.
For additional information about pouring, eating, and kitchen techniques, you can explore Hints for Easier Eating and Pouring, the Locating Technique, and Safe Cooking Techniques for Cooks Who Are Blind or Have Low Vision.
Enjoy your holiday, everyone!
by Maureen Duffy
The results of the HOme Monitoring of the Eye study, a subset of the Age-Related Eye Disease Study 2 (AREDS2), were presented last week at the Annual Meeting of the American Academy of Ophthalmology (AAO) in New Orleans, Louisiana, November 16-19, 2013.
The study revealed that participants at high risk for developing wet (or neovascular) age-related macular degeneration (AMD) who used the ForeseeHome AMD Monitoring Program and device (pictured at left) had significantly better preservation of visual acuity when their AMD progressed from dry to wet than the control group of participants who were using standard care methods alone to self-monitor the progression of their AMD.
About the ForeseeHome AMD Monitoring Program
The ForeseeHome AMD Monitoring Program was developed by Notal Vision, Ltd. The company was founded in 2000 and is based in Tel Aviv, Israel, with additional offices in Israel and the United States.
The ForeseeHome AMD Monitoring Program is a prescription-based, comprehensive telemonitoring and data management system that (a) extends the management of AMD to patients' homes between office visits, (b) provides access to both patients and physicians to monitor AMD progression, and (c) alerts physicians to immediate, significant visual field changes in their patients, so that timely follow-up and treatment can be initiated.
To monitor AMD progression, the patient checks his or her vision once a day at home, via a non-invasive three-to-four minute test for each at-risk eye, using the ForeseeHome AMD Monitor. The test results are sent immediately via phone line or modem to the Notal Vision Data Monitoring Center (DMC), which provides live, ongoing monitoring.
The DMC then posts the patient's daily test data on a secure web site where his or her physician can review it at any time. In the case of a statistically significant change in visual acuity test scores, both the patient and doctor are notified immediately to schedule an appointment.
You can view the operation of the ForeseeHome AMD Monitor at YouTube.
Dry and Wet Age-Related Macular Disease
There are two types of AMD: dry (atrophic) and wet (neovascular or exudative). Most AMD starts as the dry type and in 10-20% of individuals, it progresses to the wet type. Age-related macular degeneration is always bilateral (i.e., occurs in both eyes), but does not necessarily progress at the same pace in both eyes. It is possible to experience the wet type in one eye and the dry type in the other.
The dry (also called atrophic) type of AMD affects approximately 80-90% of individuals with AMD. Its cause is unknown, it tends to progress more slowly than the wet type, and there is not – as of yet – an approved treatment or cure; however, there are clinical trials underway.
In dry macular degeneration, small white or yellowish deposits, called drusen, form on the retina, in the macula – the small sensitive area in the center of the retina that provides clear central vision – causing it to deteriorate or degenerate over time.
A retina with drusen
Drusen are the hallmark of dry AMD. These small yellow deposits beneath the retina are a buildup of waste materials, composed of cholesterol, protein, and fats. Typically, when drusen first form, they do not cause vision loss. However, they are a risk factor for progressing to further vision loss from wet AMD.
In wet macular degeneration, the choroid (a part of the eye containing blood vessels that nourish the retina) begins to sprout abnormal blood vessels that develop into a cluster under the macula (called choroidal neovascularization).
The macula is the part of the retina that provides the clearest central vision. Because these new blood vessels are abnormal, they tend to break, bleed, and leak fluid under the macula, causing it to lift up and pull away from its base. This damages the fragile photoreceptor cells, which sense and receive light, resulting in a rapid and severe loss of central vision.
The Study and Results
The The HOME Study: HOme Vision Monitoring in AREDS2 for Progression to Neovascular AMD using the ForeseeHome Device was a collaborative effort led by the National Eye Institute (NEI) to evaluate the performance of the home monitoring device plus standard care compared to standard care monitoring alone for the detection of AMD progression to the neovascular phase.
Here is further background on the study/clinical trial from NEI:
In the wet form of age-related macular degeneration (AMD), new blood vessels grow and cause fluid leaks into the retina, which leads to loss of vision. Some studies suggest that if the development of new blood vessels (choroidal neovascularization, or CNV) is detected early, treatment could be started sooner, which may help prevent visual loss.
One possible method of early detection is the ForeseeHome device, which is part of a program designed to allow individuals to monitor their eyes for vision changes at home. Researchers are interested in comparing eye disease progression in people using the ForeseeHome device with those not using the device.
The results of the HOME study show that 94% of participants with high risk for developing [wet AMD] maintained 20/40 vision or better at the time they were diagnosed while using ForeseeHome … compared to 62% in the standard care alone group.
Also, in contrast to current home monitoring strategies, those with intermediate AMD (bilateral large drusen) or advanced AMD in one eye are likely to benefit from home monitoring with the ForeseeHome device to detect the development of [wet AMD] at an earlier stage with better preservation of their visual acuity.
For more information about the ForeseeHome AMD Monitoring Program, you can visit the ForeseeHome website. VisionAware will continue to provide updates of this macular degeneration research as they become available.