Mobility, Transportation, and Home Modifications
Mobility
When people affected by LHON begin losing vision, they wonder how they’ll get around. Most retain some peripheral vision, which often provides enough sight to walk around without walking into objects, but not enough to see well. Orientation & Mobility (O&M) training is helpful for learning about using a white cane, how to cross streets safely, and accessing public transportation. Many people affected by LHON carry a white cane and use it especially in unfamiliar areas to communicate to those around them that they have vision loss. Some obtain a guide dog, though that can only occur after cane skills have been acquired.
In the U.S., depending on age of onset and location, O&M instruction is provided by a student’s school, an adult’s state’s rehabilitation program, or a local blind services organization. These videos provide an overview of the services provided in O&M instruction, and information about how sighted supporters can provide assistance.
There are a variety of apps that can make navigating with vision loss safer and easier. Some popular ones include the OKO app, which helps with navigation and recognizes pedestrian signs through artificial intelligence. Apps such as Google Maps or Apple Maps that provide audible turn-by-turn instructions are also useful.
Transportation
Transportation is a sudden, significant challenge when LHON vision loss occurs. Initially, with one good eye, it seems safe to drive but it’s actually dangerous because depth perception is impacted. The second eye may lose vision surprisingly quickly which can lead to dangerous situations. While it’s emotionally and practically difficult to give up driving during the acute phase of vision loss, many in the LHON community realize that they continued driving longer than was safe, and in retrospect acknowledge they should have stopped sooner. It’s far better to stop driving a month sooner than necessary, than one day too late. In the U.S. it’s illegal to drive in all states when the better eye is worse than 20/40 except New Jersey and Wyoming (20/50) and Georgia (20/60).
Since driving is not an option for almost everyone affected by LHON, it’s helpful to live in an area where services can be easily accessed without a car. The WalkScore website rates each location.
Public transportation, including local paratransit, and options such as Uber and Lyft, can also be helpful.
Home Modifications
Small, often inexpensive modifications to the home can make life easier. For instance, “bump dots” can be used to identify buttons or dial positions on appliances, and rubber bands can be used to identify shampoo vs. conditioner. Below are some articles for other ideas on how to enhance the home.
