Living with Retinitis Pigmentosa: When is it Time for a Cane?

I was diagnosed with Retinitis Pigmentosa (RP) in my twenties. RP is an eye disease that causes the retina to slowly deteriorate. The light sensing cells called rods and cones begin to die off and leave you with tunnel vision, blind spots, night blindness and an overall diminished ability to see. Early on, the visual changes were subtle and sometimes I was unaware when I lost more vision in my peripheral fields. By the time I was 30 yrs. old, I could no longer drive. This called for making adjustments to a new way of living life without wheels!

Seated photo of Audrey Demmitt in a black shirt, blue scarf with brown circles and dots, and blue jeans. Next to her is a golden retriever in leather Leader Dog harness

Audrey and Leader Dog Sophie

Among my biggest challenges as I lost more vision was the ability to move about safely. I started doing some very annoying things like walking into doors, missing curbs, and bumping into people while in public. Sometimes funny things happened, like once I asked a mannequin for help in a store. Another time, I got so lost and turned around in a large public bathroom that someone had to help me find the door out. Awkward, right? Well, the time came when things were not so funny anymore and I had a few serious falls because I could no longer see well enough to detect changes in terrain or avoid obstacles in my path. I sustained several injuries from these nasty falls including a broken ankle, which required surgery. After that, I was afraid to go out without holding on to my husband for dear life. I began to walk like a granny, hunched over staring at the ground and shuffling my feet. And this was my “wake-up” call. I realized I was not merely clumsy, but my vision was affecting my mobility and I needed to seek cane training.

In my state, there was a long wait for vision rehabilitation services, so I took to the internet to find other options. I learned about Leader Dogs for the Blind and their Accelerated Orientation and Mobility Training program. It is the only guide dog organization that offers such a unique training opportunity and I signed up. My week at Leader Dog's orientation and mobility training transformed me into a confident and safe cane traveler. The world opened back up to me as I learned to use this important tool to get around without falls and mishaps. It was the first step in understanding that vision loss changes the way I need to do things, but it does not have to hold me back from doing what I need to do!

If your vision loss is keeping you from going out or you are afraid of falling, it may be time to learn how to use a white cane. Check out Leader Dog's excellent Accelerated Orientation and Mobility Training program before you injure yourself!

Audrey Demmitt attended the Accelerated Orientation and Mobility Training program in 2010. She returned for her first guide dog, Leader Dog Sophie, in 2011. She works for the American Foundation for the Blind and lives with her husband in Peachtree City, Georgia.

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