Meeting the Challenges of Macular Degeneration: A Personal Journey

BrightFocus Foundation
“Meeting the Challenges of Macular Degeneration—A Personal Journey”

Transcript of Teleconference with Guest Author Jim Hindman
November 24, 2014
1:00 – 2:00 p.m. EDT

Please note: BrightFocus Chats may be edited for clarity and brevity.

GUY EAKIN: Hello, everyone, and welcome to our monthly BrightFocus Chat, presented by the BrightFocus Foundation. My name is Guy Eakin; I’m the Vice President for Scientific Affairs at BrightFocus, and today we’re going to talk with Jim Hindman.

Mr. Hindman has been called a “serial entrepreneur” and, in addition to many other professional accomplishments, he is the founder of Jiffy Lube International. Jiffy Lube is an extraordinary franchise that today employs 40,000 people and services more than 30 million vehicles per year.

Mr. Hindman was diagnosed with age-related macular degeneration (AMD) at the age of 57 and years later was found to be legally blind. Mr. Hindman’s story is one of refusal to give up hope, and he eventually found his way out of darkness with one of the newer treatments for AMD, which is the use of an implantable miniature telescope (IMT).

His newest mission is educating people about the devastating effects of AMD and letting them know that they, too, still have hope. In fact, he has recently authored a book on the topic, which will soon be available through a number of sources.

We’re anticipating that we’re going to have a lot of questions about the IMT today, so at any time during the call you can press *3 and that’ll take you out of the call to order a fact sheet about the IMT or to an operator who can take down your question for you. And if you are for some reason disconnected from the call, I want to give you a number to call back into. That is 877‑229‑8493. You’ll then be asked to punch in the ID code 112435.  

Before we get started, we’d like to learn a little about the callers on the line. So our question—we run this as a survey, and we’re asking you to respond to the survey by pressing a number on your telephone—we would ask the question, How long have you had macular degeneration? And you can answer using the keypad on your telephone. Press 1 if you were just recently diagnosed; press 2 if you’ve had macular degeneration or another low-vision disease for many years; and press 3 if you’re on the call today for a friend or a family member. Again, that’s 1 if your diagnosis was very recent, 2 if you’ve had macular degeneration for a number of years, or 3 if you’re on the call for somebody else.

While those votes are coming in, Jim, thank you so much for joining us today. I’ve had the opportunity to read your book and one of the things that struck me was that you’re no stranger to having challenges put in your path. One of the fascinating stories in the book is about how Jiffy Lube may not have existed at all if it were not for a challenge from a young football player. Could you tell us about this story and how it got the ball rolling for Jiffy Lube?

JIM HINDMAN: Thank you. Well sure, Guy: The fortunate thing that happened to me was I was financially able to become a football coach at what was then Western Maryland College and is now McDaniel College. I’m in my 80th year, and having people to assist me as I do, I manage to get through. I had loved playing and coaching football and I did get into conferences with young players about their futures because I’m a 5-year planner.

One of the seniors came in and basically said he didn’t know what he was going to do. He guessed he was going to go to work for the Social Security Department because there were no opportunities left in America. And I was absolutely flabbergasted and appalled and I wondered what they were teaching him over there. The student had read an article about the “millionaire football coach” and said I probably couldn’t do that again. I told him I could and I’d take a whole bunch of your classmates with me. And I did that.

I founded Jiffy Lube as a result of a team approach. I went to my assistant coaches and said, “You need to start looking for something that needs to be done, because part of our success is finding a need and then filling it.” It wasn’t very long before one of my boys took my car to the Cadillac garage, and they ended up telling me they couldn’t get it back to me for a couple of days because they took the dashboard out and broke something. I basically said there’s got to be a better way than this—I mean, all this trouble to get your oil changed?

So again, it seemed to me that there was a need that was taking form in the United States because the major oil companies had been going to the “Gas and Go’s” marts. In the process they were closing down the former garages that used to be attached to service stations that did a lot of things besides filling your car up with gas. Through my research (and I know that knowledge is power) I discovered that a very huge number—about 150,000—of the corner garages had closed because of the phenomena of the pumpers. So that showed me there was a need and a way to fill it conveniently and quickly. That’s what led to the 10-minute oil change concept.

GUY EAKIN: It’s really fascinating. What struck me while learning about your career is that knowledge is power. You’ve broken down many problems, and AMD was one. As we get into that story, I recall that the diagnosis came unexpectedly. How did you originally learn that you had AMD?

JIM HINDMAN: I originally learned that I had AMD on a mission to get my mother-in-law to get some vision help. I told her if you’ll do it, I’ll do it. The good thing is that Dr. Goldberg at the Wilmer Eye Institute told me, “Guess what. You both have AMD.” I was 57 years old, and it was a statement that didn’t make a big impact. Not the way I usually do things: I blocked it out instead of looking into it.

The result was that I became more and more dependent on aids to see with and ultimately was told I was legally blind and there wasn’t anything else they could do for me. As you can imagine this was a very depressing, shocking message, and I rejected that bit of information. The first thing that happens is that you quit thinking about it.

GUY EAKIN: Absolutely. At BrightFocus  we often hear questions like, “How can I help someone with vision problems?” Offering to take someone to the doctor is a great method. And in dealing with the depression, you mention some chilling moments in a chapter called “The bottom’s got to be around here somewhere.” You describe some driving experiences and getting lost. Would you mind sharing that with the audience we have on the phone today?

JIM HINDMAN: I’m happy to share it, because hearing from people who have been there and done that gives you an awareness that you don’t have. I think that the rejection of the information—you say, “This doesn’t apply to me, I don’t have to give up my keys”—you tend to reject it until you realize you could be impeding the life of someone else. I think that the idea of hitting a person or a child while driving made an impact. Once I fully realized it, I gave up my keys. But prior to that, I had rejected the diagnosis.

One time I went to the DMV to get my license renewed and the guy said, “What’s wrong with your eye?” but I just went to another office and got one. You want to hang on to your license, and you reject the idea that you’re a hazard to others immediately. One time a former player, now coach, was dropping me off and he said, “Coach, are you ok?” I couldn’t find my way from the car to my house door. It was gripping, it was shocking, and it was compelling me to know I had to do something.

GUY EAKIN: Like you said, that must have been gripping and shocking. I started off the conversation today with the observation about the football player who put you up to the challenge that led to Jiffy Lube and the many other challenges that you’ve faced. I come to realize you haven’t backed down from too many fights in your career. As a very heralded CEO, what kept you going? What gave you hope?

JIM HINDMAN: I think if you read the book you would see that I have a “never, never, never give up” kind of background. I think if you see this as a challenge, then you have to fight to find an answer. The answers are not obvious and they can be received from people who have been there and done that.

I half-heartedly began to look into it. I was still rejecting it in my mind: “How can this be me?” But it was me. With my never, never, never give up attitude, it became “you have a problem and you have a solution to it.”

One of the unhappy experiences was being told by doctors that “we’ve done all we can and see you later.” That was my memory and I’m sure it was polite and official. But the idea that the medical services I was receiving were so negative led me to begin looking at the Mayo Clinic and even in Europe and—lo and behold—we did find out there were other people at the University of California–Davis with the IMT.

So I wrote to Davis and Dr. Goldberg at Johns Hopkins who’d been my doctor at the Wilmer Eye Institute, and he said they could do the implant there at Wilmer. So I became the first patient to receive the IMT. I live by the motto “No guts, no glory.” I told my doctors, “You’re the experts; you do what you think is right and I’ll cooperate,” and that’s how we got started.

GUY EAKIN: I want to remind people who are on the call with us today that if you have a question for Mr. Hindman, you can leave our call and ask it. The way you do that is press *3 to submit your question, and that’ll take you to an operator; and if for some reason you’re disconnected from the call (which rarely happens, but occasionally it does), we do have a number to call back in, and that number is 877‑229‑8493. That’s 877-229-8493, and you’ll be asked to punch in an ID code, which is 112435. You make that effort sound graceful. For many people, that first step of “I want more information” and the next step of finding it leaves a blank step of finding it. How did you approach getting more information?

JIM HINDMAN: Growing up in a boys and girls home in foster care taught me that a team approach is necessary. We had duties related to caring for the other kids and making sure the young ones got to and from school. So with that experience of having other kids, teachers and coaches care for me, I decided that I needed to do something about this AMD problem. Then I discovered that people like you at BFF are way ahead of me in terms of collecting a lot of information and sponsoring research. So once I got over rejecting and denying that I had AMD and facing the fact that I would have to keep going in the dark, I decided to do something.

GUY EAKIN: We mentioned earlier the IMT you had implanted to help with your vision. What is this device and can you tell us more about that?

JIM HINDMAN: The device is a miniature telescope so small that could fit on the end of your little finger. The ability to basically cut open your eye and install that gives you 2.5 to 3 times more magnification in your vision. Research and development on it was conducted by Dr. Lipschitz in Israel. Like BFF, other organizations provide channels of information about the device.

GUY EAKIN: Like many technologies, there’s the expectation and the reality of how it works. Can you tell us how it works for you? What’s a reasonable expectation? Does it function the way you want it to?

JIM HINDMAN: The expectations were unknown because I had no experience. I was truly amazed because the simulator they used at the Wilmer Eye Institute allowed me to see my wife clearly. It was a very exciting lift to my outlook. Like any new thing that you use in your body you have to practice, practice, practice. So I began doing the exercises they had for me at the low-vision rehabilitation department, and thank goodness I’ve been able to progress very well.

GUY EAKIN: So it wasn’t a “plug and play” event; you have to work with someone to help you use it. That might be helpful to some in our audience thinking about the IMT. I understand that you helped with some of the regulatory acceptance of the IMT and other technologies. Can you tell us about that?

JIM HINDMAN: There are many needs related to AMD, individual needs in people’s hearts and minds and the desire to do things that you had to give up. When I learned that you couldn’t get a Medicare benefit for these technologies until you’re 75 years of age, I said, “That’s not right.” So I began immediately to find a way to get the age lowered, and I asked people to help with that. When I saw Dr. Goldberg at the Wilmer Eye Institute, he said that stem cell research has potential. I saw Dr. Haller at the Wills Eye Hospital in Philadelphia, who is injecting stem cells into the eye and they’ve had early research success. My hope is they will put the right thing in my right eye. When I look at you with my right eye, there’s a black spot in front of your face.

GUY EAKIN: What’s your experience with finding out about clinical trials? What are the resources you go to, to find out what is going on? Have you been a part of one?

JIM HINDMAN: Yes, and they’re very carefully guided and masked to protect the results and sponsors. The fact that there are over 1,000 devices for AMD being considered by the Food & Drug Administration is encouraging. There are many organizations like BrightFocus and like the Lion’s Club that provide services. When you have AMD, at some point you may need a driver, and the Lion’s Club found out about my needs and helped me.

Most of us out there are not in a position to do much. But one thing we can all do is to give something to the cause. The National Institutes of Health supports research on diseases, and we need to let our legislators know that AMD is a priority. The “silver tsunami” is coming because of demographic shifts. We need to let Congress know, and we need to contribute to disease research at organizations like BFF. That’s what I’d like all the people out there to consider.

GUY EAKIN: We thank you for that and we’re here to help with clinical trials. We are involved in research and I point people towards ClinicalTrials.gov as a place to find great information on clinical trials. If the internet is not your cup of tea, you can call us and we’ll walk you through how to get involved in a clinical trial.

My information is that about the same number of people who have invasive forms of cancer have AMD. But we generally have to explain AMD to folks, whereas awareness of cancer is pretty extensive. I certainly thank you for everything you have said about our audience and the Foundation.

We now have some questions coming in for us and I’d like to pass them along. Remember that if you have a question you can press *3 and we’ll take down your question and return you to the call. The first one is from Eloise in New Jersey who wants to know, when you received the IMT, did you have the wet or the dry form of AMD? What can you say about what the doctors told you was necessary to receive this device?

JIM HINDMAN: I have the dry form of AMD. Since I was the second patient, the doctors and I had to learn from each other through the implant process. I had great confidence in my doctor and the hospital. But you have to be brave and decide that doing something is better than waiting back and not doing anything. So you do it on faith. You’ve got to want to change the way things are. I was ready to be first in line and I think that my expectations were unknown but it had to be better than what I had. So I took the risks and the rewards have been tremendous.

GUY EAKIN: Eloise also asks where you were on the rehabilitation and if you were back to driving at this point?

JIM HINDMAN: No, I can’t drive. I had to give up driving because the IMT affects your peripheral vision. The current regulations are that you would not be able to drive. The fellow eye—the eye that doesn’t have the IMT in it—is still very limited. I know that there are volunteers out there that will help you. You need to know what your problem is and ask for help.

GUY EAKIN: Audrey from Ohio asks about the expectations from the IMT. Can you read something in the middle of your vision? Would the scope help?

JIM HINDMAN: Definitely. I’m not technology wise and my ability to use the computer is limited. I write things in long-hand and I definitely can read better. People say my hand-writing is better and I feel more empowered to get my message out to other people. I got a tremendous lift from having the central vision restored in my left eye. The IMT is a great aid in writing and I see that as a definite benefit.

GUY EAKIN: What carried you through the tough times emotionally?

JIM HINDMAN: What carried me through was the fact that I expanded the people who were participating in the business of sight. The first place I looked was the Lions Club because I had been a member years before. I knew that they were committed as Knights of the Blind. Those combinations of volunteer support helped me. They helped me with the book, and the proceeds from it will go to help AMD research.

GUY EAKIN: We have a question from John from California about cost and about insurance coverage for the implant of an IMT. What do you understand to be the cost of the procedure and what types of insurance covers this?

JIM HINDMAN: It’s about a $15,000 device, around $20,000 installed. Those over the age of 65 are covered by Medicare, and many other insurance companies now cover it as well. Please don’t let the cost deter you. Where there is a will, there is a way. Many individuals and organizations will step forward to help if you let them know you have a problem. My book—Was Blind, But Now I See, by Jim Hindman—is available on Amazon.

GUY EAKIN: How long did it take to see results after the IMT implant?

JIM HINDMAN: There was some swelling so it wasn’t immediate. But within days I could see much better. You need an occupational therapist to help you with navigating your home by placing special tape and other visual aids.

GUY EAKIN: On those lines, a listener from Colorado is asking about a timeline and continued interactions with your occupational therapist. How long you should expect to work with your occupational therapist or a low vision rehabilitation specialist?

JIM HINDMAN: It’s been 2 years since I had the surgery, and I still have visits from occupational therapists because various glasses are needed to adapt to the IMT, both in your eye and with your brain. The answer is that I am still going through the low vision rehabilitation program and there are expectations that there will be volunteers who can come to your house. I know you can call that department at Hopkins to get more specifics.

GUY EAKIN: Well that wraps up our call and questions for today. I want to thank our speaker, Jim Hindman, for such an uplifting call. In a day-to-day environment where people need hope, you’ve provided that. I want to thank everyone who has been on the call and asked questions.

We will be posting a recording and a transcript of our call on our website, and you can also listen and download past chats on both iTunes and SoundCloud. And if you don’t have access to those, you can always call us—and I’ll give that number in a moment—and we can send you a transcript or figure out a way of getting a recording of the call to you.

Our next chat will be on “Macular Degeneration 101,” hosted by the BrightFocus Foundation. And that’ll be on Wednesday, December 17, at 1:00 p.m. Eastern, that’s 10:00 a.m. Pacific. We certainly encourage you to register and submit questions in advance, and we’ll be sending you a reminder email if you registered for this call. In fact, you can actually register for that December chat right now, and also request free low-vision materials from BrightFocus, like our “Macular Degeneration Essential Facts” brochure. You can do that by calling us at 1‑800‑437‑2423 or by visiting our website at Brightfocus.org...

JIM HINDMAN: When I get information about this, I think, “What can I do about it?” One of the things you can do is make a contribution to one of the organizations that are helping the cause. I might modestly ask that you check out the book as well. Thanks, everyone, for listening.

GUY EAKIN: Thank you, Jim, and I thank everyone, again, for all of your feedback. If you’d like to leave a comment after the call, just stay on the line. Thanks again from all of us at BrightFocus and have a great day.

The information provided in this transcription is a public service of BrightFocus Foundation and is not intended to constitute medical advice. Please consult your physician for personalized medical, dietary, and/or exercise advice. Any medications or supplements should be taken only under medical supervision. BrightFocus Foundation does not endorse any medical products or therapies.

• BrightFocus Foundation website, www.brightfocus.org, or call us at 1-800-437-2423.
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The information provided here is a public service of BrightFocus Foundation and is not intended to constitute medical advice. Please consult your physician for personalized medical, dietary, and/or exercise advice. Any medications or supplements should only be taken under medical supervision. BrightFocus Foundation does not endorse any medical products or therapies.