An Interview with Henry Winkler

Henry Winkler, Actor, Comedian, Author, Producer, Director, and my guest today to speak about something that affects so many family caregivers, age-related macular degeneration (AMD), specifically Geographic Atrophy (GA), which is the leading cause of blindness for over a million Americans.

Gary Barg: Henry, it’s a pleasure to have you here talking about something so very important. Thank you for your time.

Henry Winkler: Thank you for inviting me.

Gary Barg: I understand you had a loved one with GA which brought the issue to your attention. Can you tell us about that experience?

Henry Winkler: Absolutely. I partnered up with Apellis, this biotech wonderful company who spends a lot of focus on eyecare innovation. I knew what they were talking about when they came to me about GA, because when I married Stacey, I got two gifts, my stepson Jed, and Ed and Belvy, my in-laws. Ed was this tall, wonderful, tweedy, mustached Dentist. He was great and one of the best dentists I’ve ever had.  Then suddenly, macular degeneration came into his life, and he had to give up his practice sooner than he wanted. He couldn’t drive or see the faces of his grandchildren. My brother-in-law, Scott, told me he was on an elevator with Ed, and it was like the movie The Scent of a Woman, as he whispered, “I think ladies just stepped onto the elevator. I smell the perfume.” I watched his gregarious personality, which was filled with pride about what he did and how good he was at it, all just drip away.

Gary Barg: What are some of the common symptoms we need to look at regarding GA and our loved ones? What did you recognize with Ed?

Henry Winkler: As his eyesight started to dwindle and he couldn’t read a letter, he gota contraption where he magnified the print, which was projected onto a screen attached to the machine. Eventually, that didn’t work either. Other issues are wavy lines where they should be straight, missing spots in what you’re looking at.

We would have our in-laws over for dinner all the time as my mother-in-law was an unbelievable cook. There are two steps leading down from the kitchen to the playroom. All the toys are there for the dogs and our grandchildren. We now have six. I watched him very gingerly discover the floor until he got to the edge of the stairs, at which time, without making a big deal about it, I grabbed his arm, and said “Hey, let’s go to dinner together,” as I helped him down the two steps and got him into his chair. I saw the entire life force of this person change.

This condition is irreversible. You have to check as early as possible and not be embarrassed that you’re imperfect, that something about you is changing. Don’t put it off, don’t be lazy. Get it checked out by an appropriate professional.

Gary Barg: One major challenge that happens when people are dealing with this is loss of independence and loss of self.  How did that affect Ed?

Henry Winkler: Well, first of all let me just say that is perfectly put. He couldn’t drive anymore. I listened to him ask his son Scott if he still had a beard. He could no longer see what was so intimate and so much a part of his family life- his career. He loved the politics of dentistry. He was a representative at the conferences that they would hold in Saint Louis or New Orleans or wherever. He would go and have the best time and make lifelong friends, and all of that slowly left his life.

Gary Barg: The politics of dentistry, I think that’s going to be my next book title, thank you for that.

Henry Winkler: [Laughs]

Gary Barg: So it’s challenging, a huge sense of loss, and something we don’t want to face. What advice do you have for family caregivers who are noticing their loved ones showing signs of GA or AMD, and how to get them to process this change in their life?

Henry Winkler: Okay, great questions. One, if you know somebody 60 years of age or older, go immediately to the website GAwontwait.com. There is so many resources at that website. Two, Get them to talk. Get them to open up. Get them to realize that they’re not going to lose any height or weight, they’re not going to lose any love due to these changes. I make the joke, don’t drive, pick up your car and run to either an ophthalmologist or optometrist.

Gary Barg: So when you and your family first noticed this happening with Ed, what were your immediate thoughts. How did he interact with you? How were you able to get through it?

Henry Winkler: You know, at that time, we did not know as much as we do now about macular degeneration, or the possibility of macular degeneration becoming GA. All you can do is help the person deal with the embarrassment, the fear, the change that happens in their entire life, and just keep on boosting their morale and self-image. Let them know that they are still great, and you still love them. That this doesn’t change your opinion of their wonderfulness.

Gary Barg: Understanding, connection, communication, don’t be afraid of the changes that are coming with this, and help them process this new part of their life.

Henry Winkler: Get the information and go to see an ophthalmologist or optometrist.

Gary Barg: Henry, what would be the one most important piece of advice you’d like to share with family caregivers?

Henry Winkler: That let me just say, people who are being helped by you, people who are watching you help, know how difficult this job is. And without you, the quality of that person’s life would be even less. Thank God for you. If I had to give one message, I think that would be to a caregiver, thank goodness for you.

Gary Barg: This changes, but nothing about how I feel about you changes. Nothing about how important you are to us changes --and you’re still who you are.

Henry Winkler: Exactly.  I would not change one minute of what you said.

Gary Barg: How did Ed react, if I could ask? When this happened to him, what was his emotional process?

Henry Winkler: He knew people loved him and that he was helpful. He did so much pro bono work for people who could not afford it. It just was his way of life. He was filled with doing wonderfulness. And then that wonderfulness was taken away because of macular degeneration which can become GA. It was almost as if he got shorter.

Gary Barg: I recognize in so many caregiving situations that having the love and the buoyancy of a family who’s explaining to their loved ones that they haven’t changed, and that we are here to pick up the slack, is so important.

Henry Winkler: Absolutely and go get your eyes checked.

Gary Barg: Yes, I thank you for this. I’m thrilled that you’re doing this. I think I’m going to add Advocate to your list of job titles, as well as being one of the few people in the world about which you can say, “this person needs no introduction.” 

Henry Winkler: Thank you.