Macular Degeneration

A Life in Focus

Joe Fontenot, MD, was born in Opelousas, LA, a small town 20 miles north of Lafayette. By the time he finished high school, Joe had his sights set on becoming a doctor. So it came as no surprise to his family when he headed to the Louisiana State University School of Medicine.

Barely a year after graduating with his MD, Joe was drafted into the Army and sent to Okinawa, Japan. As general practitioner to the 1st Special Forces 156 Medical Detachment, Joe traveled to Vietnam, Thailand, and parts of Europe. After his tour of duty, Joe returned to the U.S. and began training as a cardiologist.

It was during his residency at Charity Hospital in New Orleans that Joe met his future wife, a nurse named Linda. After a happy courtship, Joe and Linda married. Soon after, they welcomed their first child, and then their second, and third, and fourth.

Eight years into their marriage, Joe, Linda, and their kids moved to Mobile, AL, a bustling port city on the Gulf Coast nestled between New Orleans and Pensacola, FL. Joe soon settled into a busy schedule as a catheterizing cardiologist.

Well-liked and respected in the community, Joe was active and social. He windsurfed, traveled, and played doubles tennis with Linda. Then around his 50th birthday, Joe started to notice some changes in his vision. Objects in the distance were harder to make out. And he started bumping into things.

He ignored the symptoms at first. “I went about my business longer than I should have,” Joe says.

Finally, he knew it was time to see a doctor. That’s when Joe was diagnosed with age-related macular degeneration (AMD). It’s a condition that affects your macula, the oval shaped spot in the center of your retina at the back of your eye. The macula controls your straight-ahead vision and ability to make out details. “Macular degeneration is a progressive disease, so it starts off ordinarily with a very small scotoma, as it’s called -- the Greek word for blind spot,” Joe says. Gradually, that spot gets bigger and you lose your central vision.

Now that Joe knew what he was dealing with, it was time to share the news with Linda.

“She didn’t expect it at age 50, but there are worse things you can have,” he says. They weren’t going to let Joe’s AMD take their life off course. Instead, they decided to meet the challenge head on.

Next, Joe sat his kids down to let them in on the news. “They seemed to take it pretty well,” Joe says. Life would go on, just in a new way.

While Joe’s kids took his diagnosis in stride, there was a kernel of worry in Joe’s mind about their eye health. Having AMD makes it more likely that your kids will have it. Eventually, Joe decided to have a specialist examine their eyes to ease his fears. Doctors can detect AMD much earlier than symptoms show up.

None of Joe's kids showed any signs.

Because of his Army training and medical background, Joe approached his diagnosis in a practical way. He used his connections in medicine to get access to as much information as possible, so he knew exactly what was to come. For Joe, knowledge was power -- and it helped keep his worries at bay.

“It relieved me of the fear that a lot of people would have about going totally blind,” he says. “And also, it let me know that there were tools and support available that could help me.” While total blindness is rare, AMD can cause legal blindness.

Throughout it all, Joe kept his can-do attitude, but still his symptoms made some everyday activities harder. An avid reader, Joe struggled to see words on a page. So he turned his attention to a solution. Through his research, he knew there were tools that could help. One he found is called a CCTV magnifier.

“You put whatever [you want to look at] underneath and you can magnify it up to 100 times,” he says. They range in size from a small TV down to a tiny device that fits in your pocket.

Throughout it all, Joe kept his can-do attitude, but still his symptoms made some everyday activities harder. An avid reader, Joe struggled to see words on a page. So he turned his attention to a solution. Through his research, he knew there were tools that could help. One he found is called a CCTV magnifier. 

“You put whatever [you want to look at] underneath and you can magnify it up to 100 times,” he says. They range in size from a small TV down to a tiny device that fits in your pocket.

The low-vision aids helped Joe keep much of his life the same as before his diagnosis, with one big exception: His work. The daily catheterizations Joe did as a cardiologist involved using a catheter to take pictures and do procedures inside the heart. This was Joe’s specialty and the heart of his practice. He could no longer do it.

Still, Joe wanted to find a way to continue caring for his patients however he could. Linda played an important role in helping him do that by teaching him how to use a computer, something that was completely foreign to him before his diagnosis in the late 1980s.

“I had never even punched the button that turned the computer on,” he says. When he's not near the computer, Joe uses strong glasses and handheld magnifiers.

Linda says those devices have her husband reading as well as he ever did. "He probably reads faster than I do, peripherally," she says. "And his comprehension is fantastic."

Though Joe has been practical about his limitations, he admits that losing the ability to drive was a bitter pill to swallow. In fact, it took quite an event to finally make him give it up. He took a wrong turn that sent him 20 minutes out of the way. As he rushed to reach his destination on time, he got a speeding ticket. It was then that the reality of the situation set in.

“That’s when I decided I was going to stop,” he says. From that point on, Joe had to rely on others to drive him where he needed to go. "I was lucky to find drivers," he says. "I insisted on paying them. I still insist on paying them."

Long work hours were no longer an option, which was quite an adjustment for a busy cardiologist. “I couldn’t stay at the hospital late because I couldn’t get a ride home,” he says. When his driver was ready to leave, it was time to call it a day.

Once, Joe voiced his frustration to his younger brother William, one of his seven siblings. William, who is the only other Fontenot sibling diagnosed with AMD, saw things a different way.

"I asked him, 'What’s something good about not being able to drive?'” Joe says. “He thought a minute and he said, ‘Well, no one asks you for a ride.’”

As years went by, Joe lost much of his central vision.

Joe and Linda’s activities shifted after his diagnosis. “It definitely changed our social life,” says Joe. "I had to stop playing tennis. The tennis ball actually would hit me in the eye because I couldn't see it coming toward me unless it was in a certain position."

But even though his tennis days were over, Joe treated it as an opportunity instead of a loss.

“I concentrated on doing what I could do,” he says. “When I lost my ability to play tennis, I just went and windsurfed more. I just substituted one thing for another.”

Kim Bufalo, a nurse who worked with Joe, says he approached the change in his job the same way he did the change in his hobbies.

“Most people would have just said, ‘I’m retiring,’ but not him,” she says. Instead, he found a new way to practice the medicine he loved. Kim says she helped him read charts as he visited patients.

“He didn’t make a big deal about it,” she says. “He would say, ‘My vision is not what it used to be, so one of my partners is going to do your cath.’ I think the most remarkable thing was that he did not give up. He said, ‘I can’t do heart catheterizations anymore, but I’m still going to be a cardiologist.’”

As time went on, Joe became the go-to for patients with vision problems. Other doctors sent people his way because they knew Joe could do more than treat their heart problems. He would also share information about the tools that helped him manage his AMD.

“These patients were always extremely grateful and a lot of them talked about how much better they could do things,” he says.

Soon he realized a new calling: He could help others with low vision in a very practical way by becoming a low vision therapist.

After 3 years of research, study, and certification Joe opened a low vision clinic. It offers professional vision evaluations for AMD and other low vision conditions. It also gives people access to occupational therapists, ophthalmic technicians, computer specialists, and other specialists.

Joe learned that, as with most disorders, no two people deal with it the same way.

"Everybody’s different depending on age, goals, previous status. Some people love to read, some people watch TV," Joe says. "So you have to ask, what are your needs, what are your goals for what you want to do?"

A low vision clinic like Joe’s offers targeted, practical help for people learning to live with limited sight.

When you visit Joe’s clinic, you'll get advice about technical things like apps for your phone and CCTV magnifiers. You'll also learn little day-to-day hacks, like how to look for a curb so that you don't fall when you're out walking, or using puff paint, rubber bands, or bright contrasting colors on important items so they're easier to spot.

Or how to deal with one of the hardest things about having AMD: not being able to recognize people.

"We teach them to speak first," Joe says. "If you see somebody approaching, say, 'Hello. Good day,' And then very commonly, you will be able to recognize them by their response -- the way they talk, the way they walk."

Right away, he could tell his clinic was filling a need.

“Occasionally, people actually started crying when I showed them what we were doing,” he says. “They loved it.”

Kim now works as the low vision clinic’s executive director. She says patients there get emotional help, too.

“When you lose your vision, you go through the steps of grief,” she says. “It’s like losing a loved one. People will deny it and get depressed. We help them get to acceptance. That’s probably where we can do the most good.”

The clinic hosts support groups for people dealing with low vision. “We just tell people to come in,” says Joe. “It’s free. We try to be very informal and let them bring out their own concerns and problems.”

Joe often facilitates the support groups, and he also encourages people to start their own, especially if they live in a retirement or assisted living facility with others.

Kim says Joe’s own AMD diagnosis is a large part of the success of the practice.

“One of the main things he does is give people hope,” she says. “He just never gave up.”