Editor’s note: Just in time for World Glaucoma Week, VisionAware is introducing a new Patient’s Guide for Living with Glaucoma, written by a person who has glaucoma from his perspective.
By Mary D’Apice, VisionAware peer advisor
Author of Patient’s Guide to Living with Glaucoma Is Both Patient and Advocate
Stuart Carduner, author of the Patient’s Guide to Living with Glaucoma, knows that many patients enter the ophthalmologist’s office with a good deal of anxiety and fear. They want to understand what is happening to their eyes, and they want to know what to expect from office visits. They wonder what the prognosis is for their vision and how they will maintain independence if they lose more sight. Through his online guide, Carduner provides coaching to VisionAware readers who have been diagnosed with glaucoma or who are going through the assessment process.
Glaucoma, The Sneak Thief of Sight
Glaucoma is often called the “sneak thief” of sight because it can go undetected for a long time. Carduner was completely unprepared for his own diagnosis. “I went to the doctor for a regular eye exam about three years ago because I thought I needed new glasses. The doctor told me I had very advanced glaucoma. I had no idea.” The news came as a shock and Carduner felt that he didn’t know what questions to ask. It was an emotionally charged situation and, understandably, Carduner said that it was “hard to think straight.” Even after he saw specialists, he felt like he wasn’t getting all the information he craved and so he went to the internet. “I am a researcher at heart and kept on digging. I really got educated.”
Carduner had been a classroom teacher for a while and then developed software training programs. About ten years ago, he created an online resource for teaching people about Buddhism and mindfulness meditation. Now that he is retired, he is applying his skills as a writer and teacher to educate people about glaucoma. Carduner believes that when patients have enough information about their diagnosis, treatment options and prognosis they are better able to advocate for themselves.
Guide Describes Assessment Tools
Carduner’s guide meticulously describes the various assessment tools used in glaucoma tests and explains exactly what part of the eye the doctor is examining and why. For example, he describes the ophthalmoscopy examination used to detect damage to the optic nerve head and retinal nerve fiber, a critical part of detecting and diagnosing glaucoma. Carduner explains that patients should expect to have their pupils dilated with eye drops and reassures the reader that is not a painful test. When they can anticipate what will happen during the exam, patients are more relaxed and better able to articulate concerns.
Guide Includes Questions to Ask Your Doctor
The Patient’s Guide to Living with Glaucoma provides a well-thought out, thorough list of questions patients may ask from the initial diagnosis to treatment options. “Even at the most prestigious hospitals, doctors have a very short time frame in which to see patients,” says Carduner. The guide will help patients do their homework before the visit so they can make the most of their time with their doctor.
Guide Helps Patients Understand How Glaucoma Impacts Functional Vision
Carduner’s guide also supports patients by helping them understand not only how glaucoma impacts the health of their eyes but also how the disease impacts functional vision, in other words, the way a person sees. “You would think that people understand their vision but they don’t. People realize that they are tripping over steps but there is no way for them to know that it is because they have a scotoma (blind spot).” An ophthalmologist can learn a lot about a patient’s eyes using an array of assessment devices but to really appreciate how a patient sees, a doctor can learn the most by asking a person about his or her everyday experiences. The guide poses questions about a person’s daily activities aimed at revealing possible vision loss, for example: Do you have trouble finding something on a crowded shelf? Do you have trouble recognizing faces, even of friends and family? Do you have trouble driving at night?
Guide Stresses Importance of Doctors Asking About Vision
Sometimes, doctors can get caught up in examining the anatomical and structural integrity of the eye but forget to ask the patient about their vision. Says Carduner, “One doctor told me that I had 20/25 vision, which is near perfect acuity, but never tested me for contrast sensitivity. (A person who has reduced contrast sensitivity finds that objects don’t always stand out from their background. For example, white rice will disappear on a white plate and a curb might blend into a similarly colored street.) Doctors might neglect to measure a person’s contrast sensitivity because it’s not a diagnostic tool used in tracking the progression of glaucoma. However, loss of contrast sensitivity can make it harder to get around, read, or locate objects that seem to blend into the background. Carduner encourages patients to engage in dialog about their visual functioning and even request tests like the one for contrast sensitivity. Once patients understand the nature and extent of any vision loss, they are better able to pursue solutions. Their ophthalmologist or his staff members should refer glaucoma patients to agencies that offer vision rehabilitation and the guide offers additional resources about glaucoma, as well. Carduner also discusses the future of glaucoma research and treatment.
Guide Highlights Critical Importance of Effective Partnerships with Doctors
As someone living with glaucoma, Carduner recognizes that doctor appointments can be stressful. The Patient’s Guide is an effective remedy to feeling frustrated and overwhelmed. In addition to educating readers about glaucoma, Carduner reminds patients that it is their responsibility to establish effective partnerships with their doctors. Ultimately, patients who ask their doctors questions and discuss any changes in their vision, are most empowered to take an active role in managing the treatment of their condition.