For Pat Keegan, a nurse practitioner living in Syracuse, New York, the vision problems started out small. During tennis matches with friends, she wasn’t hitting the ball quite as well as before. She had a harder time seeing while driving in bad weather. No cause for alarm, she thought. She had no idea she had advanced glaucoma and had already lost 60 percent of her vision. “My regular doctor did a vision test and recommended I see a specialist,” says Pat, 70. “When I found out how much vision I’d lost, I just sat there. I was in shock.”
Glaucoma is a condition that occurs when high intraocular pressure (IOP), or pressure inside of the eye, damages the ocular nerve. The disease affects millions of Americans—and there are no symptoms until the disease is fairly advanced. This is why it is so important for Americans to receive regular eye exams where a doctor can check their IOP. Similar to blood pressure, weight, and cholesterol, IOP is a number that helps a person better understand their overall health and wellbeing.
We asked Pat and her husband, Bob, to recommend some of the most important questions to ask a doctor during one of those exams.
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Do I need to know about my family history?
You might think to ask family members about a history of things like breast cancer or heart disease, but you should also ask about glaucoma. Research shows that around 60 percent of people with glaucoma have family members with the disease. Pat has relatives with glaucoma, and after several conversations with her doctors, realized the importance of knowing and discussing her family history.
She has done research to understand how genetics may have played a role in her diagnosis, and understands the importance of sharing this information with her family. As a precaution, Pat’s sons are diligent about receiving regular eye exams.
How can my partner or another caregiver help keep me safe?
Glaucoma impacts vision in a way that can make everyday tasks dangerous, so it’s important for friends and family members to know how they can help. That’s something your doctor can advise on.
“Pat is very independent and capable, so I couldn’t tell immediately how little she could actually see,” says Bob. “But I learned that when we’re out walking and need to cross the street, I have to hold her hand so she knows it’s safe. When we go down the stairs, I need to go first in case she can’t see the steps and falls.”
Pat’s youngest son, Brett, has also taken on the role of caregiver since Pat was diagnosed with glaucoma. Brett likes to say he and his brothers are like mini parents to their mom, and advises other caregivers to find a balance to help cope with the fear of what could happen to a loved one following a chronic diagnosis like glaucoma.
Just how much will this impact my life?
While you will obviously need to take precautions to stay safe, your doctor will be able to reassure you that there are still a lot of things you can do despite having glaucoma. For Pat, that means traveling.
“We were at a point where our youngest son was graduating and we were preparing to retire and travel and enjoy life,” she says. “I worried about what my diagnosis meant for that, but we were still able to do things like go to Paris.”
What are my treatment options?
There isn’t a one-size-fits-all approach to managing glaucoma. In fact, there are different types of glaucoma including open-angle glaucoma, closed-angle glaucoma, and normal-pressure glaucoma. Your doctor can explain the different options available which aim to lower the high eye pressure associated with glaucoma. Depending on which type of glaucoma you are diagnosed with, these options may include eye drops, long-acting drug delivery systems, laser therapy, and surgery.
“I’ll never forget that Pat’s doctor said first we’ll do this, then this, and if that doesn’t work, we’ll do this,” says Bob. “It was reassuring to hear that they had options to help manage this condition.”
Is my current treatment plan still the best?
Before Pat’s vision worsened, she was diagnosed with normal-pressure glaucoma (when the optic nerve shows signs of damage without high pressure in the eye). “Because my glaucoma wasn’t due to high pressure, my treatment plan wasn’t aggressive,” she says. Only after meeting with a specialist four years later did she learn how far the disease had advanced.
“Even if you’ve been diagnosed with glaucoma and are in treatment, talk to your doctor regularly about diagnostic tests and any changes to your treatment,” she says. Doing so might keep your vision loss from progressing as far as Pat’s did.
Do you know of any support groups you’d recommend?
“I’d always felt young for my age, so when I was first diagnosed, I thought I now had something that would make me seem old and different from people,” says Pat. “I kind of isolated myself because of that.”
That changed when she found a glaucoma support group and was able to talk about her experiences with others going through the same thing. To learn more about glaucoma, access resources, and hear the stories of additional patients who are overcoming the challenges of living with the disease, please visit My Glaucoma.