How inventing a product to help restaurant goers with aging eyesight led her to discovering Age-Related Macular Degeneration and inspired her to give back.
“I didn’t know about Macular Degeneration until I invented this product.”
A few years ago, as she was approaching retirement, Connie Inukai found herself facing a challenge many do as they get older – reading small print in dimly lit restaurants. Instead of letting it go, she decided to find a solution. She set out to create a fun and useful product for restaurant goers who didn’t want to bring their smart phones to dinner.
The result is Tip-n-Split, a pocket sized magnifier, light, and calculator rolled into one.
Learning about AMD and Giving Back
In her journey to create Tip-n-Split and get it into the hands of people with diminishing eyesight, Connie started hearing about Macular Degeneration. Over and over it came up as she was meeting people at expos.
“So many people told me I could really use this, or my mom really needs this, she has Macular Degeneration. So many people seemed to have this, but I didn’t know anything about it, so I looked it up.”
Once Connie realized how many people were suffering from AMD, she wanted to make a contribution beyond the product. She reached out to us and let us know she wanted to give 10% of the proceeds from online sales to the cause of Macular Degeneration.
“At this stage in my life I want to start giving back.”
And she didn’t stop there. She sent us 12 Tip-n-Splits to give away as gifts. If you’d like to receive a Tip-n-Split for free, tell us about your Macular Degeneration solutions (or frustrating lack thereof) for reading the menu in dimly lit restaurants. We’ll send a Tip-n-Split to the first 12 commenters! Be sure to include your email so we can get in touch!
On a sunny day back in May, a team of people came together to cook for, photograph, and design a calendar with delicious foods good for eye health.
Some key people from the team that developed the AMDF cookbook, Eat Right for Your Sight, came together to create the Feast for the Eyes calendar. Jennifer Trainer Thompson developed the recipes, guided by the groundbreaking research of Johanna M. Seddon, MD, ScM, one of America’s leading experts in the field of age-related macular degeneration.
Before the photo shoot got under way, Jennifer Trainer Thompson was on deck for prep and to help organize and oversee cooking of the recipes she had developed.
Catrine Kelty (food stylist) reviews the order of recipes with Jody Fijal (food preparation). This was one of the few moments Jody wasn’t furiously cooking!
Jody and Susan tag-teaming clean-up between dishes.
Remnants from the Oysters on the Half Shell recipe (don’t worry, somebody ate them) which contains lutein and zeaxanthin, both good for eye health.
Christian Goulette, photography assistant, making adjustments to the camera before a shot.
Catrine arranges a dish for Joe Keller, photographer, while Christian makes tech adjustments in the background.
The team reviews how the shot looks on screen. Take a shot, review, make adjustments, rinse and repeat until it’s calendar worthy!
Blueberries for the Spinach Watercress Salad, plates awaiting the Carrot Soufflé Dessert, and in the background, empty oyster shells. All foods good for eye health!
The last step in the day’s process… in an adjacent room, Hans Teensma (middle) takes the approved photos and puts together the design of the calendar while Chip Ghoehring (background), AMDF founder and president, looks on to offer feedback along with AMDF’s Paul Gariepy (foreground).
Ok, the actual last step. Clean your plate!
The 2017 Feast for the Eyes Calendar is available in our shop or, through November [EDIT: now through December!], if you donate $100 or more to AMDF, we’ll send you the calendar as a gift [click here to donate]. Donations support AMDF in meeting the needs of those affected by age-related macular degeneration through education, supporting research and new technologies, and offering hope and resources to live, and even thrive, with the disease.
Polly Brown takes an unusual approach to Age-related Macular Degeneration. It isn’t an easy one, and she knows it isn’t for everyone. She believes it’s her job — perhaps even her right — to “be thankful in all circumstances.” That phrase is from the tail end of a letter from the Christian missionary Paul to people living in Thessalonica in the first century. Paul himself is thought to have suffered from vision problems — so much so that he mentions in another letter in the Bible that he knows his friends would give him their own eyes if they could. Whatever Paul’s story, Polly Brown takes his suggestion as — well — a bit of divine instruction.
Brown was diagnosed with Age-related Macular Degeneration in her left eye in 2006, after coming out of cataract surgery. She was 78. “It was kind of a shock because my first cataract surgery, in the right eye, was perfect,” she said recently in an interview. “I could see clearly. But the surgery for the left eye was funny. After the surgery there was this big mushroom-shaped floater that didn’t go away. That afternoon I was sent to a retinal specialist.”
Brown has been undergoing treatments for AMD in her good eye, to preserve her vision. The treatments are most recently at the Flaum Eye Institute at the University of Rochester in N.Y., near where she and her husband Ralph live. Every six weeks she receives an injection of Avastin, the formula which inhibits the growth of abnormal blood vessels behind the eye, slowing or even stopping the progress of “wet” AMD.
Brown used to dread injections. “They’re not that painful — because the eye is numb,” she said. “But there’s some discomfort, with the eye clamped open. And for a few hours afterward, I’m crawling around with my eye all irritated and watering. Plus, dilated. I prefer afternoon appointments. At least then I don’t lose the whole day. I can go home and go to bed with a cold washcloth on my eye.”
The Browns were missionaries overseas since they were in their early 20s, having only moved to back to the United States in early retirement. Given their work, they know the Bible backward and forward. And Polly was well aware of that obscure bit about gratitude. At first —
“Be thankful for everything? Well, who can do that, all the time?” she said. “But I decided that, instead of dreading the monthly appointments, I was going to be thankful that there’s a treatment, and a specialist, and this research. Plus, I have insurance to pay for it. I go in with that attitude. You know, last time I went, the aftermath was not as bad.”
Another obviously good thing is that, due to the treatments, Brown has plenty of sight in that right eye. She can even read, especially under a bright light. She was thoroughly enjoying a P.G. Wodehouse novel when we interviewed her — one in a big stack of fiction, biographies, and Bible study books that has been a standard mix her whole life. At church she uses Kindle and large-print Bibles.
At 85, Brown does not see well enough to drive. But Ralph can drive, so they are well set to run errands or to see their five grown children (and seventeen grandchildren and six great-grandchildren … ). They moved to Rochester, NY, two years ago to live with one of their sons and his wife.
“While we’re still able to be independent, we’re well set if the time comes when we need more help,” Brown says. Even now their daughter-in-law often invites them for dinner, “especially on injection days.” (Although, when they stay home on those days, Ralph cooks. This is a new skill for him, Polly Brown notes wryly. “He has become very good at opening cans of beef stew.”)
The AMDF has been featured in the New York Times. Below is a reprint of the article.
By JANE E. BRODY
Dr. Sidney Schreiber, a cardiologist from Scarsdale, N.Y., was in his mid-70’s and still working in the lab and caring for patients when he noticed that he could not see clearly with his right eye.
A visit to his ophthalmologist produced a discouraging diagnosis. Dr. Schreiber had macular degeneration, a rapidly progressive form at that, and within three years he lost 90 percent of his vision, leaving him functionally blind.
An estimated 10 million Americans have this progressive retinal disease, though most are not as severely affected as Dr. Schreiber, and some are not yet aware that they have the painless condition. It afflicts one person in four older than 75 and is the leading cause of legal blindness in Americans over 55.
The numbers affected will continue to climb as the population ages, prompting an escalating race to develop more effective treatments and, perhaps, even preventives, including measures based on recently identified genetic factors that raise the risk of developing the disease.
A Familiar Regimen
Meanwhile, there is much that people can do now to ward off this disabling condition or slow its progress. Interestingly, the very same steps that lower the risk of high blood pressure, heart disease, diabetes and some cancers can also help protect the eyes.
Though peripheral vision remains intact, macular degeneration robs people of their central vision, making it hard or impossible to read, write, drive, watch television, see the time, recognize faces and see where they are going.
Still, many who are seriously afflicted manage to pursue active lives. The late Don Knotts, a co-star of “The Andy Griffith Show” and “Three’s Company,” was 57 when his disorder was diagnosed. But he continued to work almost until his death on Friday at age 81.
“I got pretty depressed for a while,” the American Macular Degeneration Foundation quotes him as saying. “And then one day I said to myself, ‘I bet a blind person would give his right arm to have the vision I have.’ “
Although most patients are over 55 when found to have what is commonly called age-related macular degeneration, some develop macular disease as children or young adults. Marla Runyan was in the fourth grade when she was struck with a juvenile form of the disease. Yet she finished college and competed twice in Olympic running events despite being legally blind.
Dr. Schreiber, the cardiologist, was an accomplished artist when macular degeneration forced him to abandon his hobby and his career. Like Mr. Knotts, he lapsed into a serious depression for nearly two years, emerging only after a visitor from Lighthouse International showed him all he could do with low-vision aids.
Encouraged by his wife, Freda, who became his eyes, he gradually resumed his favorite activities, with modifications. He visits museums (his wife reads the legends aloud), listens to recorded books (“I’ve never been so well-read”), gardens (though he sometimes pulls up flowers instead of weeds) and has resumed painting, his artistic talent apparently intact judging from a recent rendition of poppies in a vase.
He has even been able to put his medical training to good use. Now 84, he is scientific director of the American Macular Degeneration Foundation, which sponsors research and provides support and information. It also publishes a quarterly newsletter and has produced the helpful “Hope & Cope” DVD, both available for a $25 contribution. The foundation can be reached at P.O. Box 515, Northampton, Mass. 01061-0515 or at (888) 622-8527. Its Web site is www.macular.org.
The macula is a dense collection of light-sensitive cells in the middle of the retina along the back of the eye. These cells are used for the “straight-ahead” vision needed to read, sew, drive and see fine details. Most cases of macular degeneration begin and remain in one or both eyes as what is called the dry form of the disease. Yellow deposits called drusen form under the retina, increasing in number and size until they destroy macular cells and blur central vision.
The disorder can progress so slowly that deteriorating vision is not noticed until it is quite advanced. But as it worsens, more light may be needed to read and faces may become hard to recognize. Far less often, macular degeneration occurs as the wet form, leading to a rapid loss of central vision when abnormal blood vessels grow under the retina and leak blood and other fluids, raising the macula off the wall of the eye. In about 10 percent of cases, dry macular degeneration eventually develops into the wet form.
Looking for Early Signs
Dr. Schreiber said: “I might have had the dry form for 10 years, for all I know. It’s probably my fault for not seeing an eye doctor every year.”
Which raises a critical point. Early signs can be readily detected by a thorough eye exam in which the pupil is dilated, allowing the doctor to examine the retina and optic nerve for signs of trouble. People 50 and older should have such exams yearly, or twice a year with signs of disease.
A simple test can be done in any doctor’s office (or at home) to detect vision distortions that might not otherwise be noticed. It uses a graphic device called the Amsler Grid, a box of cross-hatched lines with a black dot in the center. Covering first one eye, then the other, a person stares at the black dot. If any of the straight lines appear wavy or missing, that could be a sign of macular degeneration.
Prevention and Treatment
The established risk factors offer strong clues to avoiding or delaying onset of the condition. They include smoking, obesity, high blood pressure, sedentary living, overexposure to sun and a diet deficient in green leafy vegetables and fish.
Other risk factors are being a woman, farsighted or Caucasian and having light eye or skin color, cataracts and a family history of the disorder. Two factors, oxidation and inflammation, appear to cause macular injury. Studies sponsored by the National Eye Institute found that daily consumption of a high-dose formula of antioxidants and zinc could reduce the risk that early macular degeneration would advance.
Various products sold over the counter contain this formula or one like it: 500 milligrams of vitamin C, 400 I.U. of vitamin E, 15 milligrams of beta carotene, 80 milligrams of zinc oxide and 2 milligrams of copper. Smokers should avoid products containing beta carotene, which may increase their risk of lung cancer.
In addition, most experts recommend a supplement of lutein, zeaxanthin or both, carotenoids found in dark green leafy vegetables like spinach and collards. Twinlab makes a supplement, Ocuguard Plus, that contains lutein.
Several drugs, Visudyne by QLT and Novartis and Macugen by Eyetech Pharmaceuticals and Pfizer, have also been shown to slow deterioration of eyesight in wet type macular degeneration. One Visudyne patient in six is said to have shown improved vision, a most exciting advance. Another drug awaiting approval, Lucentis by Genentech, may also help.
AMDF is a 501(c)(3) non-profit, publicly supported organization (Charity ID #04-3274007). Contributions are tax deductible to the extent allowed by law.