Bob’s Story

Bob, aged 81, retired in 2015 after years of owning and operating an antique gallery in New York City, specializing in antique period English furniture and antique jewelry. He also operated the antique department in various Bergdorf Goodman locations, and from 2008 to 2013, he had a shop on Madison Avenue. His jewelry business continues, including a boutique in Bergdorf Goodman, which his niece and nephew now run.

Retinitis Pigmentosa

Bob has realized that in his 40s, there were subtle warning signs pointing to the presence of Retinitis Pigmentosa (RP), though he wasn’t aware of their significance at the time. Following a visit to an ophthalmologist for testing, he received the news of his RP diagnosis. Despite being told that there was no treatment available, Bob did not accept this verdict and scheduled an appointment with an ophthalmologist in Boston who was conducting research on RP. The doctor proposed that Bob begin taking large doses of Vitamin A, which he started doing immediately.

According to Bob, his visual acuity is terrific. However, his field of vision has become more limited. He gave up driving at the age of 65 but said he can still navigate on his own. He finds a walking cane is helpful when navigating the streets.

Bob says one of the issues in having RP is that you really lose confidence when walking. He does not need to use his walking cane as much during the day as at night. Although Bob also has a mobility cane with a white rolling ball on the tip, which he says can be helpful, he continues to use a walking cane. He mainly uses the walking cane when entering restaurants or at night when it’s more difficult to see steps and bumps in the streets. Bob can walk up and down stairs quite easily when there is a railing, and the cane is helpful to him when walking downstairs where there is no railing. Bob also found the walking cane helpful on his trip to Egypt last January. He explains that one issue a person can have with a vision impairment is bumping into people, but when you are using the cane, people tend to be helpful by giving you space. 

Connecting with Dr. Bruce Rosenthal

About 25 years ago, following his appointment with the ophthalmologist in Boston, Bob was referred to former Chief of Low Vision Services Dr. Bruce Rosenthal at Lighthouse Guild. Bob said, “Once I connected with Dr. Rosenthal, he conducted extensive testing on my vision and provided me with an accurate idea of my vision capabilities and limitations.” Bob said, “Dr. Rosenthal began doing what he could to improve and deal with the reality of my vision, and one of the most significant things he did was to propose color-tinted eyeglass lenses.” According to Bob, when someone has RP, they have a limited light intake. For him, the sun and ordinary bright daylight can make it very difficult to see. Since Dr. Rosenthal’s diagnosis and proposed treatment option, Bob has always worn tinted eyeglasses to protect his eyes. Bob said, “Without a doubt, the color-tinted lenses have greatly slowed the progression of my eye disease. They have really helped.” Over the years, the tinted colors of the lenses have changed to address his needs — from a pinkish-reddish color to a yellowish-greenish color, and the color he has been using for the past ten years or so is yellow. 

Mobility Training

Dr. Rosenthal connected Bob with our vision rehabilitation services to help him make the most of his vision. Although his vision impairment has not reached a point of requiring him to use a mobility cane, Bob received several training sessions with Lighthouse Guild Orientation and Mobility Instructor, Diane Formoso. Bob said, “Not only was she very nice and helpful, but she also taught me how to use the mobility cane correctly.” 

Dr. Bruce Rosenthal

Bob always met with Dr. Rosenthal yearly for his annual checkup. Dr. Rosenthal would always provide Bob with updates about any research he knew about, and at one point, he put Bob in touch with a doctor at the University of Iowa who was conducting gene therapy research. Bob provided a DNA test to participate in the research study. Unfortunately, the mutant genes they are currently studying are not ones that Bob carries, but he appreciated Dr. Rosenthal’s efforts to provide the latest research options. 

Dr. Rosenthal was always providing Bob the opportunity to try various technology devices when they arrived, such as different types of glasses and reading devices. Though they may not have been the solution to help improve his vision, Dr. Rosenthal never stopped trying.

Bob said, “Dr. Rosenthal was a very warm and conversational man, and what was always clear to me was that he was really interested. I always felt he was going to do whatever he could to help me, and he had his finger on the pulse of what was going on in the vision field. He was in touch with all the new research as well as all the innovative technology. He was very comforting, and as you can imagine, you wander around not knowing which way is up because you have this thing that is out of control, and here is someone who is kind of standing by your side.” 

Bob’s Advice

In terms of Lighthouse Guild, Bob said, “It’s my understanding that RP is not curable, so a person wants to do whatever they can do to manage it, and Lighthouse Guild is that place to go. The Lighthouse Guild team will know how to manage your RP best.”