Living With Glaucoma
One of the most popular features of TGF’s Eye to Eye newsletter and monthly electronic newsletter update has been our “Lifestyle Connection/Living with Glaucoma” series, in which glaucoma patients, inspiring and often courageous, have shared their personal stories.
People deal differently with the curveballs life tosses their way. That’s true in all facets of life, including how glaucoma patients cope with their diagnosis and with the reality of living with a chronic disease. We’ve asked individuals whose lives have been impacted by glaucoma to share some of their thoughts in the hope that their experiences can inform others.
In 2017, Christine DiSomma was diagnosed with glaucoma.
This is her story.
I had never been to an optometrist/ophthalmologist before. What drew me to go see the doctor was trouble reading, and I was experiencing red eyes. Honestly, I just thought I needed reading glasses.
When the doctor did my eye exam, he noticed I had a hemorrhage in the back of my left eye. He then performed an OCT scan and that is when he told me that I had severe optic nerve damage. Then he said,
“You will go blind.”
He was awful. He said that to me point-blank, with no remorse. Earlier that year, I had a hysterectomy due to cancer, something that he was aware of. He then proceeded to tell me I was having a “real bad year.” I remember leaving his office scared and upset, crying the entire way home.
My father has glaucoma, so I knew a little bit about the disease, but I was never that concerned about having it. It was never something that was discussed.
My husband’s friend Dr. Brian Rosenblatt is an optometrist, so we went to see him the next day for a second opinion. He was wonderful. He spent a good 2 hours with us explaining everything he had discovered and the next steps I needed to take.
I left him feeling a bit more optimistic.
Dr. Rosenblatt recommended that I see Dr. Robert Ritch for treatment. I see him every 3 months. We found a combination of eye drops that work for my pressures. I also take oral supplements that Dr. Ritch has recommended. I had SLT surgery in both eyes.
In the beginning, there was an adjustment period, but it has now become my routine.
I am not going to lie, when I first met Dr, Ritch, I was a bit intimidated. I realized shortly after, he wants the absolute best for his patients and does not accept anything less than 110% from anyone who works with him, and I respect that. It is something you want to see as a patient.
Dr. Ritch has taught me so much.
He taught me that I can control this disease.
He has never once made me feel that I would spend a day alive without seeing.
My advice is, go to the eye doctor regularly. Do not wait until you think something is wrong.
If I had started earlier in my life, I would have been diagnosed sooner, and would not have lost so much of my vision. Listen to your body and what you think is right.
Robert Ritch, MD is the founder and medical director of The Glaucoma Foundation. He is the Shelley and Steven Einhorn Distinguished Professor of Ophthalmology, Chief of Glaucoma Service, and Surgeon Director at The New York Eye & Ear Infirmary.
In her professional life, Lilian Rosenbaum, LCSW-C, BCB, PhD, has been an acclaimed pioneer in the field of biofeedback. Lilian lived and worked in the Washington, DC area for 60 years until a recent move to the Boston area. A faculty member at Georgetown University Medical School since 1970, she is a Clinical Associate Professor in the Department of Psychiatry.
More personally, Lilian has been on a 22-year glaucoma journey. As she explains it, she wore glasses for reading since age 11, and saw an ophthalmologist annually. But until she suffered an angle closure attack in 1998, she had not been diagnosed with narrow angles.
A narrow angle, which can be detected during a comprehensive eye exam, refers to an angle between the outer edge of the iris and the cornea that is narrower, or more closed, than normal. If not watched, narrow angles can lead to an acute angle attack, which is a medical emergency that can cause permanent damage within hours.
“I am one of those who was only diagnosed after an attack, which partially blinded me,” she says.
Although Lilian lost much vision in her right eye, she praises the glaucoma specialist she began seeing after her attack, who treated her until she moved to Boston in 2016. “That DC doctor is my miracle magician and scientist,” she says.
Lilian has made sure that history does not repeat itself within her family, which includes 4 children and 11 grandchildren, ages 11 to 31. “Given my experience, I easily convinced my family members to be evaluated by a glaucoma specialist. My younger sister and my youngest daughter both have narrow angles. Both had immediate iridotomies and have avoided the potential nightmares of narrow-angle glaucoma.” Lilian’s older grandchildren are proactive as well.
Glaucoma is not the main thread of Lilian’s life. In 2017, she was the recipient of a Lifetime Achievement Award from the Mid-Atlantic Biofeedback Society.
The award was presented “in appreciation and recognition of her contributions to the field of biofeedback, specifically the establishment of one of the country’s first biofeedback programs at Georgetown University Medical School…” according to the certificate.
A related tribute points out that when she set up her first biofeedback clinical program as an elective for medical students in the early 1970’s, biofeedback was still “bio-WHAT?”
Twenty-six year old Ryan, who was born with open-angle glaucoma, is well on his way to become an ophthalmologist and give back to the visually impaired community.
A second year medical student at the Medical University of South Carolina, Ryan credits his parents and a great doctor who was able to stabilize his condition very early. In fact, it was the doctor who treated Ryan throughout his childhood and teen years who inspired him to become a physician. “Now I want to help people who weren’t as lucky as I am,” he says.
In Ryan’s case, his parents realized there was something wrong with his eyes shortly after his birth as he was sensitive to light, his eyes were runny, he didn’t want to be outside and looked away from people. They researched the possibilities and suspected he may have glaucoma, which the doctor confirmed. When Ryan was a toddler he had a goniotomy – a surgical procedure used in congenital glaucoma to relieve eye pressure. “Today my pressure is stable, and despite poor vision, I’ve had no major problems. I need glasses to function and I always wear sunglasses when I go outside. The pressure spikes that occurred when I was a baby damaged my vision, but luckily nothing else.”
When Ryan graduated from Clemson University with a degree in bioengineering, he worked in medical device design and development, specifically on neuro (brain and nervous system) devices. He also began volunteering at local eye clinics – helping visually impaired and blind people with tasks and errands. “I saw what they have to go through – and realized how fortunate I am.”
“I also started a program of my own called the Young Eyes Project, where I collect new and used glasses in local schools in Charleston, and then work with a physician at MUSC to give those glasses to children who couldn’t otherwise afford them.”
Appropriately for his desired profession, Ryan will graduate med school in 2020 and then will begin residency work. “I’ll always be involved in research – it’s the most important part of medicine…that’s where everything starts. I also want to be the kind of doctor who is personable. People want a connection and they want to be able to trust that their doctor is doing the right thing for them.”
“When I start practicing, I’ll draw on my own experience to help others with vision problems, having been in their shoes.”
Ryan is currently working on a research project involving medical shunts to relieve pressure in the brain, which can arise from an abnormal buildup of cerebrospinal fluid. The buildup is often caused by an obstruction which prevents proper fluid drainage.
“I think every day about applying this technology to relieve eye pressure in glaucoma. This is life-changing stuff, even when it might not sound exciting. There are lots of possibilities and it’s really frustrating that there is important research going unfunded.”
“The chance that I might lose my vision is always in the back of my mind. But I think I’ll be fine. What I want is to now focus on is helping other people.”
Doug has been “down the rabbit hole” – and back. He said, “It all started in 2008 when I noticed areas of my vision just weren’t there.”
He saw an eye doctor who gave him a visual field test. Doug said, “I didn’t see the flashing lights, so I thought the machine hadn’t been turned on” and he asked the assistant to retest him. That’s when he realized something was very wrong.
He said, “The doctor showed me the results. I’d lost 90 percent of the vision in my right eye and half in my left. He asked me when I’d last been tested and I said it had been seven or eight years.”
Doug continued, “Heck, I didn’t even know what glaucoma was. There had been no pain or physical sensation to warn me. But my pressures were at 50 and had likely been there for years. The doctor referred me to a glaucoma specialist who said, “I doubt we can save your right eye, but hopefully we can keep the left.”
Doug said, “I was devastated. I think visually and have led a visual life as an outdoor adventurer, photographer, writer and web designer.” As Doug explains in his book From Grief to Grace, “I went down the rabbit hole and into a deep multi-year depression. I lost my home and investments, felt the hand of death reach out to me – and reached back for it.”
But life had other plans. A voice inside him said “do your bucket list,” and it was the pursuit of these adventures that saved his life. The first was kayaking down the Grand Canyon.
It was in a cavern deep within the canyon that he went through what he describes as “the eye of the needle” and found the capacity to transcend the trauma. Second on his bucket list was a two-month adventure odyssey riding a motorcycle on remote dirt roads up the Continental Divide from Mexico to Canada, and using an ancient energy system for personal growth along the way.
His third – and final – bucket list item is to ride a motorcycle from the top of Alaska to the bottom of South America. Doug’s intention is use this adventure as a way to raise awareness about vision issues and trauma-related depression.
And that’s key to Doug’s life today – finding purpose in his life to transcend depression, speaking with others about vision loss and trauma, and inspiring others with stories of hope. He speaks at Lions Clubs in California, co-moderates an online glaucoma support community, and speaks about trauma and depression for counties in Northern California.
One of his key messages is “We can find our greatest gifts in our darkest moments. When you finally get through the darkness, you may find a place of eternal stillness within.”
Thanks to his doctor of many years, he still has some vision in both eyes. He uses three different eye drop medications three times a day. He’s also had a laser treatment, cataract surgery and a trabeculectomy done on his right eye.
What does he suggest for others facing loss of vision? “Reach out, join a group, find support, take care of yourself, and become your own best advocate. And find the best doctor you can.”
Also, you may likely go through the five stages of grief. In my experience, the sooner you begin, the sooner you can get to the other side, find purpose in your life, rise to something higher and be there for others.”
Fifteen years ago, during an annual eye exam at his optician in England, long-haul truck driver Dave was diagnosed with glaucoma. Only 30 years old, he had been tested routinely as his mother and an aunt had the disease. He was rushed to the hospital for immediate treatment and began taking one, later two and eventually four different medications before trabeculectomy surgery became necessary in both eyes.
“I drive trucks for a living, and have driven on night shifts for 13 of the years since my diagnosis, which probably hasn’t helped my condition,” says Dave. “A few times when I’ve driven long distances at night I found street lights getting misty around them, like a fog, which is when I knew I had a condition that was getting worse.”
Then, in the fall of 2015, just six weeks after a trabeculectomy on his left eye, the doctor said they couldn’t wait the recommended two years before performing the surgery on his right eye.
“I was off work for five months and the government body that controls driving licenses in the UK temporarily revoked my commercial license and my car license as well, pending eye tests, doctors’ reports, medical records, visual field tests. I was left in limbo for months. Work wasn’t paying me so I couldn’t pay my bills and they refused to offer me anything else until we knew whether I would be able to get my license back.
“Even when I successfully reapplied for my license, I had to be assessed by an occupational health expert before work allowed me to drive a truck again. As a result, I no longer work nights, and I work less hours a week than before.
“Living with glaucoma is frustrating, inconvenient, life changing and unpredictable. When my truck driving license is due for renewal in three years, my vision may not be good enough to continue in my chosen profession and I have no other skills.
“I know I have a degenerative and unstable condition that may send me blind. And I don’t want to get to the point where people who know me say things like, ‘Aw, poor Dave, he used to be so active, he used to love flying…driving…martial arts and look at him now, he can’t even cross the road without help!’
“Glaucoma research is extremely important,” he says. “Eyesight is the one sense I couldn’t be without.”
Dave does what he can to preserve his sight, carefully following his medication regimen and changes in his work load. His hope is that increased funding for research will lead to new treatments and a cure soon, as he worries that his son may also develop the disease.
Members of online glaucoma support groups may recognize the name of Sherry, a glaucoma patient herself and a patient advocate who is co-owner of one of the major support groups and a member of several others, including The Glaucoma Foundation’s APUP (Adult Patients Under Pressure). Sherry was also a founding board member of the World Glaucoma Patient Association.
A resident of Redmond, Washington, she was diagnosed with glaucoma in 1995. Despite normal pressures while on drops, the doctors noticed progression of damage and she had trabeculectomy surgeries in 2000 and 2001. Since then she’s been doing well. Last fall Sherry had cataract surgery. When you have had trabs, she explains, every surgery on the eye can cause greater risk to the filtering blebs so you need super close follow-up. Sherry didn’t have any complications – the surgery and post-op surgery went smoothly.
It was when Sherry first learned she would have trabeculectomy surgery that she began researching glaucoma and first located a support group. As she says, “I like to learn everything I can about my health issues.” Now she is committed to seeing that other patients are better educated about their glaucoma as well. “Most are afraid to ask questions, and their doctors often don’t take the time to sufficiently communicate with them about the disease. We see it in the support group. Newly diagnosed patients are afraid they will go blind, even though with ongoing treatment less than 10 percent of glaucoma patients lose their sight. They don’t understand the complex and chronic nature of glaucoma and the importance of compliance.”
What would Sherry like to see for better communications between doctors and patients? For a start:
- Patients should talk to their glaucoma specialist and doctors need to be aware of what information patients need.
- Patients should be taught the correct way to use eye drops. (See following article)
- Patients should understand what type of glaucoma they have, possible side effects of their medications, what pressures should be expected, and the prognosis.
- Patients should ask to see test results, for example of their visual fields – with an explanation of what those black spots mean.
- When surgery is scheduled, there should be a conversation beforehand about post-op instructions and what drops they will have to take when.
And here’s some final advice from Sherry: “Understanding that a diagnosis of glaucoma can be scary and stressful and since it’s suspected that IOP can be increased by stress which could intensify progression of damage, it would be good to learn some stress relief techniques to help you relax through this. Some ideas are prayer or meditation, yoga, Tai-Chi or other exercise, massage, a funny movie… And it’s not admitting weakness to even get some counseling from someone who understands low-vision or blindness. I’m sure there are even counselors who have gone through the same thing. Look for a local low-vision group such as The Lighthouse for support. And realize that vision loss does not mean the loss of a productive life but may mean that you need to change how you live!”
“A Thirst for Life…”
David of Nashville, Tennessee, age 37, was diagnosed with elevated IOP at the age of 13 and has been on a varying regimen of eye drops ever since.
When he was 27, he had the first of six major eye glaucoma surgeries. This past February, the cornea in his left eye failed. They first needed to move the shunt in that eye to the back of his eye. Then, in May they removed his cornea and iris and implanted a donated cornea.
“Losing my cornea was a real scare. I have a thirst for life. Getting a new cornea renewed that thirst,” says David, who thanks the doctors, nurses, and staff at Vanderbilt University Eye Clinic.
“I try to focus on what I have and remind myself I’m healthy in other ways. I try to be prepared for what would happen if I go completely blind. And I try to stay on top of the latest information.”
David works in sales for an IT company and spends his days in front of a computer screen working from home. “I have limits on how long I can work without a break. But I find ways to cope. I use large fonts on my computer. Technology can help people like me. Things are progressing so quickly.”
Corrected, his vision is 20/40 to 20/60. He’s beginning to lose his peripheral vision but can still drive, even short distances at night. He’s hoping self-driving cars aren’t far off!
“I don’t know how much of my vision will return after this last surgery — it will take about a year to find out. My doctor says I should prepare for the possibility of going blind by my 50s or 60s. But she’s basing that on today’s technology and what we know about the disease right now. I hope things will change. Never say never, right?
“There are so many diseases out there that need funding for research. But glaucoma is an important one. We need more research not less! Glaucoma is constantly on my mind.
“Glaucoma absolutely affects the quality of your life. No, it’s not life-threatening, but it is life-altering. It’s a constant battle. My goal is to maintain what I have.”
Share Your Story
Submit your own story to The Glaucoma Foundation and email firstname.lastname@example.org.