Coping With Retinitis Pigmentosa

Tribulations, Travels and Tennis Balls

Linda Becker stopped playing tennis at night because she couldn’t see the balls coming at her. “Coincidentally, I saw something about night blindness on TV, so I went to my optometrist,” Becker says. He confirmed she had night blindness and sent her for more testing. An ophthalmologist told her: “I’m sorry, but you have retinis pigmentosa, and you’ll be blind some day.”
Linda Becker - coping with retinitis pigmentosa
“As a young mother, I couldn’t wrap my head around that,” Becker says. So she entered a decade of denial until she started to sideswipe other cars while driving. “I drove into my development one day, and there was a thump over the hood of my car. I thought, ‘Oh my god, what did I do? Did I kill somebody?’ I pulled over, and a police officer who happened to be driving behind me came over to my window. I was devastated. I said, ‘What have I done?’ He told me a jogger who wasn’t paying attention had tripped over the hood of my car. But I knew if I could have seen better, I would have stopped. That was the day I put my car keys down.”

Coping with Retinitis Pigmentosa

Encouraged by her kids to get a guide dog, Becker called Guide Dogs for the Blind (GDB). She learned she needed orientation and mobility (O&M) skills, including knowing how to walk with a white cane, before she could be considered for a dog.

“I called the Braille Institute, and it was daunting, to say the least: Thinking about walking with a white cane, having people know I’m blind and feeling disabled. Going through that whole transition — I didn’t want to even face it,” she recalls. “But I went, and I took classes, until I knew it was time for me to have a guide dog. I’ve always been a dog person, and I’d rather use my dog as a mobility tool than a cane. Plus, I wanted the companionship.”

She successfully completed the GDB requirement of walking one mile to and from her home with the cane. She then completed two weeks of on-site training at GDB’s campus in Oregon, where she was paired with Lyla, a yellow English Lab.

Becker started teaching classes at the Braille Institute and helping others navigate their vision-loss transition. She teaches a 14-week sensory-awareness class. “It helps develop and educate your other senses when you start losing your sight,” she says. “It humbles me. I have no sight now. My transition of going to the Braille Institute, learning to use a white cane, then learning to have a guide dog, taught me a whole lot about myself and feeling very independent. I was able to speak about guide dogs and speak about blindness — and be a teacher.”

She became an outreach ambassador for the Braille Institute, facilitating low-vision support groups throughout Orange County, Calif. She also went to work for GDB as an alumni-outreach representative, putting together workshops and helping people learn about the “guide-dog lifestyle.”

Now 66 years old, Becker finds the most enjoyment in traveling. “Being with a guide dog and in the blindness community took me places,” she says. “I was asked to be a keynote speaker here or an ambassador there. I’d never done that type of thing before, and I’d never traveled much. I just kept hopping on airplanes with my guide dog and going to hotels and trying to figure things out. I ask questions and collect tips, so I can share with others how easy it can be to travel with or without usable sight. It is really exciting, and I’m really driven to go different places.”

Since Lyla’s retirement, Becker travels regularly with her guide dog, Anchorage, a yellow lab. “He gives me courage,” she says. The pair is currently planning a trip to Australia and New Zealand. Becker is no longer daunted by learning new skills, exploring new places or even flying tennis balls — Anchorage is quite happy to deal with those when he is off-duty.

For more on traveling with guide dogs, including Becker’s adventures with Lyla and Anchorage, read “Traveling Tails”.


LH1_RESCANLauren Hauptman
Lauren Hauptman INK

Must Love Dogs

Traveling with Guide Dogs

Adam Lawrence was diagnosed with retinitis pigmentosa (RP) when he was 17, but the disease did not have a profound effect on his life until his early 40s. “I sometimes had trouble with bright sunlight during the day, but I dealt with it by wearing dark sunglasses. Then one morning, I woke up, and it was like I was staring through a haze of pepper,” he says.

traveling with guide dogs
Adam with his guide dog, Escort

Lawrence gave up his job in the banking industry, as he could no longer see the contracts he needed to review. “I had to stop working and driving, and I had to figure out how to adapt,” he recalls. “I was great at organization, so my job became running the house, while my wife went to work. I got a scanner and a JAWS (Job Access With Speech) screen-reader for my computer, and I learned to read Braille.”

Lawrence is now legally blind, and his RP had another profound affect on his life about seven years ago, when he and his wife encountered Guide Dogs of America (GDA) at a fundraising event.

“I didn’t plan to get a guide dog, but they had a chocolate Lab puppy on the table” he says with a smile. “They put my hand on the puppy, and there was no turning back.”

Lawrence went through an interview and then an intensive 28-day on-site orientation program at GDA’s school in Sylmar, Calif. He was paired with a black and tan Labrador named Escort — also known as “the greatest dog in the world.”

With Escort, Lawrence feels a sureness and freedom he never experienced with other mobility tools. “When I walk with a cane, I don’t feel as confident, and I’m much slower. He gives me confidence, mobility and ability.”

Now in their sixth year as a team, Lawrence and Escort are virtually inseparable. They even shop together: “A person in the market takes our list, then Escort and I follow them around the store.”

They also travel extensively and have been everywhere from Mexico to New England to Colorado, where they went rock-climbing. “On the way down, Escort chose the more difficult path for himself, and left the easier path for me. He’s amazing,” Lawrence says.

Lawrence is quick to point out that “Escort is not a GPS. I have to plan and know where we are going. He’s there to keep me safe; he’s not there to figure out where to go — that’s my job.”

For more on traveling with guide dogs, including Lawrence’s adventures with Escort, read “Traveling Tails”, an article from our most recent e-newsletter.


LH1_RESCANLauren Hauptman
Lauren Hauptman INK

How to Help a Blind or Visually Impaired Person with Mobility

You as a Guide
As the spouse, partner or friend of a person that has low or no vision, it is hard to know when to step and help. You don’t want to offend them by jumping in and making them feel incapable, nor do you want to stand by and have them stumble along, possibly hurting themselves.
blind or visually impaired person with mobility
Here are few pointers to help a blind or visually impaired person with mobility so you can be supportive and considerate.

  • First and most importantly, never assume the person wants or needs your help. Always ask first and never force the person to accept your help.
  • If your offer of help is accepted, ask if the person would like you on their right or left, then the tap them with your appropriate elbow so the person needing help can grasp slightly above the elbow.
  • Relax and walk at a comfortable, consistent pace, about a half step ahead.
  • When navigating obstacles, guiding signals, along with verbal cues, are helpful. Examples:
    Curb – brief pause and state “we are approaching a curb and it is slanted upwards.”
    Narrow door or passage – you enter first moving your guiding arm behind the small of your back and let them know you are moving through a doorway or narrow space and which direction the door opens so they can move to the appropriate side.
  • Stairs – stop at the edge of the first step and let the other person know if the steps are up or down, where the railing is (make sure it is on the side of their free hand), and if there is anything special about the steps (they are uneven, very steep, have an overly wide tread, etc.). If there are just a few steps let them know, “you will take 4 steps down.” The will follow one step behind you, with one hand on the handrail and the other holding your arm. Pause after completing the stairs.
  • Escalators and revolving doors – Use similar guiding cues as you do for the stairs. Let them know when to step onto the escalator and when to get ready to get off. If the person you are guiding is uncomfortable with escalators or revolving doors, use the elevator and regular doors which all buildings are required to have.
  • Chair – when approaching a chair, place the hand of the person being guided on the back or side of the chair, letting them know which direction the chair is facing.
  • Never leave a person who is blind or visually impaired in “free space.” Make sure they are in contact with a wall, railing or some other stable object until you return.

If They Use a Guide Dog
Guide dogs are invaluable to people that are blind or partially sighted. They allow their owners a sense of independence. But how should you respond to a guide dog who is working?blind or visually impaired person with mobility

  • Never distract the dog from its duty, so don’t pet the dog without asking.
  • Before asking a questions of a person handling a dog, allow them to complete the task at hand.
  • Remain calm when you approach, never teasing or speaking to the dog.
  • Do not offer the dog food or other treats. They are fed on a schedule and follow a specific diet to keep them healthy. Deviations from their routine can disrupt their regular and ad relieving schedules, seriously inconveniencing their handlers.
  • Do not offer toys to a guide dog. Though they are treated as pets when they are not in their harnesses, they are only allowed specific toys. In their harness they don’t play with toys.
  • Do not call out to the guide dog or obstruct its path, as it can break the dog’s concentration which could prove to be dangerous to its handler.
  • In some cases the person with low or no vision may prefer to take your arm above the elbow and allow their dog to heel instead of lead. Follow the same instructions as in the first part of this blog. When approaching stairs, ask how the person how they wish to proceed, as they will be holding your arm with one hand and the guide dog with the other, making it impossible to grasp a handrail.

Giving Directions To Someone Who is Blind or Visually Impaired
If a person is on their own with a guide dog or white cane, giving complete accurate directions is necessary. While you may be used to pointing or saying “it is over there,” or “go around the next corner,” if you can’t see you have no idea where “there” is or the “next corner.”

  • Always refer to a specific direction from the perspective of the person you are advising. Your right is their left.
  • Indicate the approximate distance in addition to the direction.
  • Give the approximate number of streets to cross to reach the destination. Even if you are off a block or two, it gives the person an idea of when to stop and ask for further instructions if needed.
  • If possible, provide information about landmarks on the way. Remember that sounds, scents and ground textures can be landmarks. You can hear an escalator, smell the scent of fresh brewed coffee and feel the difference between grass and a sidewalk.


Susan DeRemerSusan DeRemer, CFRE
Vice President of Development
Discovery Eye Foundation