What aids can help someone with LHON?
Most people affected by Leber He reditary Optic Neuropathy lose their central vision. They have some usable peripheral vision “around the edges”.
This page will give you some idea of what aids are available, but new ideas and gadgets are appearing all the time.
Losing eyesight is a huge mental and emotional blow. If you are affected by LHON you may feel that your life is over, you do not know how to do the simplest things. You can no longer read, drive, watch TV, play or follow sport, socialize with your friends.
Both the affected person and his/her family will take time to absorb and adjust to the new situation. Family, friends and other people who have similar experiences can provide a lot of support at this time.
There is more about this on the LHON and Emotional Support page
Loss of eyesight is a huge mental blow as well as a physical symptom. it can devastate someone’s self-confidence and leave them thinking that their life is stopped. The person may no longer be able to carry on their favorite sports or hobbies. They may feel very isolated, no longer taking part in social activities.
There is a profound grieving process, and social support by friends, family and counselors is important to help get the affected person through this period. This is where the internet information on LHON can be very helpful. It shows that there are others ‘out there’ tackling the same issues and dealing with the same feelings.
James Crawford made an excellent point on the Leber’s Hereditary Optic Neuropathy Facebook group:
“Another thing to help cope was to always be treated normally and not special, being allowed to give things a go without people saying you can’t do that you are blind, rather people syaing have a go, see if you can do it.”
One big problem for people affected by LHON and thir families is that most people who are Blind or Partially sighted are over the age of 65. Almost all people who are affected by LHON lose their eyesight before the age of 50.
A lot of the services for people who have lost eyesight are aimed at people aged 65 and over. That does not mean there are no services for people under 65, but they can be a little harder to find.
Ask your local Social Services about local groups and facilities.
- Financial Benefits and grants available to you.
- Where you can look at low vision aids and try them out.
- Where you can look at daily living aids and try them out.
- Where you can get help for getting into or continuing study
- Where you can get help for keeping or getting employment.
Rehabilitation and Mobility Training
Your local health service and/or your local social services should be able to put you in touch with experts on Rehabilitation, Mobility Training and Low Visioin Aids.
Rehabilitation is about building confidence in daily living skills. How to make a cup of coffee, a sandwich, catch up with the news, keep clean and do the chores. Often a local charity runs courses to help a person who has list sight regain his/her confidence.
Mobility training is not just learning how to use a white stick or a guide/seeing-eye dog. Again it is about rebuilding your confidence in walking around, using public transport, going to the mall or to the coffee shop. Getting around with limited eyesight means using your memory a lot, and making best use of the senses you have, like listening for clues about your surroundings.
Getting help in the UK
Sadly the level and quality of service offered by a charity can vary a lot from one area to another. Charities rely a lot on local volunteers to man their phone lines and offices. You might find that you need to combine advise and services from several charities to get the help you need.
Don’t forget to check out local charities for Blind and Partially Sighted People. They have local knowledge and often hold regular meetings or social events.
A good example is the Royal London Society for the Blind (RLSB) which is based in London and concentrates on helping Blind and Partially Sighted People under age 30.
Charities that do not limit themselves to helping Blind and Partially Sighted people can also be very helpful. There are many of them, but here are a couple of examples.
FIXERS is a UK-wide network of people aged 16 to 25 running projects to make the future better.
PHAB clubs run activities for people of all abilities around the country.
There are many services and products to help someone affected by LHON. New ones are introduced all the time. As well as on-line sites, there are many “Resource centers” around the country where you can see whaty aids are available.
There are also very good exhibitions around the country, such as the Sight Village exhibitions organised by the Quenn Alexandra College each year. . Many companies and organisations hae stands at these exhibitions, demonstrating their products and services.
Getting Help in the USA
Check out the excellent LHON.ORG site for a good starting point.
Major charities in the USA include:
AFB VisionAware resources, tip sheets and blogs to help people with vision loss.
Lighthouse for the Blind Inc – there are many Lighthouse projects, programs and centers around the USA. Check them out with a web search to find what they offer for you.
NFB Blind Net has advise on social security, Education, Employment, Products and many other topics.
Take a look at the page on using a computer.
A computer, tablet or smartphone is a real lifeline for someone affected by LHON, and their family. You don’t have to become a computer expert, just getting onto e-mail or social media like FACEBOOK can connect you to hundreds of other people around the world.
The LHON Community page has some useful links.
A White Stick or White Cane
If you have very limited vision, then a white cane doesn’t just tell other people, it is a vital tool for getting around. You will need some good professional training in how to use a long cane properly, so you get all the help possible out of using it.
Even if you are comfortable walking around your local area without one, it’s a good idea to have a white cane and carry it.
There are times when using a white cane is pretty much essential, like in an airport or other high-security zone!
It does a couple of useful things.
- It lets other people know that you have trouble seeing things.
- It often makes it easier to ask for directions or help in navigating.
You don’t have to use a full-length white cane – there are lots of folding canes on the market. Many of them will fit into a pocket when not in use.
There are very small white sticks called “Symbol canes”. They are completely useless as tools to help you find steps and so on. they are just for waving about when you want people to knnow that you are visually impaired.
Sometimes sighted people get confused by a symbol cane, and don’t understand what it is for. I think a good folding cane is a better idea.
Symbol canes are usually short and narrow. This is a 70cm long symbol cane.
A folding guide cane can be as convenient as a symbol cane to carry. When you unfold it and hold it out it is more obviously a white cane.
It is important to get the right length cane. One that is too short will be no use at all as a guide, and one that is too long will be too clumsy and cumbersome to use properly.
Talking Books and Newspapers
There are commercial companies like Amazon’s Audible who sell spoken-word books. These are usually well read by professional actors.
You can also use text-to-speech on many e-books. You can do this with a Kindle’s text reader or with VoiceOver on an Apple phone/tablet. This uses a computer-generated voice that can be irritating. Even the most exciting piece of fiction can be dull, lifeless and boring when read out by an emotionless computer voice!
For people with difficulty reading, because of dyslexia or vision impairment, there are organizations who provide spoken-word books, magazines and newspapers.
Ordinary spoken-word books are usually on CD or MP3 format digital files.
DAISY is a special format digital file for spoken-word material. It has much more powerful navigation and search features. This is a lot better if you are using a non-fiction reference book or school book. You can quickly find the item you want without having to read from the beginning.
DAISY books and other material is usually posted out on CD but you can sometimes download it.
You need either a DAISY reader program on your computer or a specialized DAISY player to use the extra features of a DAISY format book.
DAISY format can be on a CD or downloaded from the internet.
Example DAISY talking book players by Humanware, Booksense and Plextalk.
There are also DAISY format readers for Windows computers such as DOLPHIN EasyReader. JAWS and Supernova screenreaders come with a DAISY player program so that you can access the training material in DAISY format.
BOOKSHARE is an on-line library of spoken-word material available to anyone in the world with a “print disability”, but you must provide evidence of this disability to join.
LEARNING ALLY is a lending library for print disabled people resident in the USA. It has tailored resources for parents, educators and students.
RNIB Talking Book Library
TALKING BOOK LIBRARY provides a lending service to spoken-word material in the UK. This can be by mailed CD or on-line downloads through the OVERDRIVE service.
CDs are in DAISY format but OVERDRIVE downloadeded material is not in DAISY format.
Clocks and Watches
Talking Clocks and Watches
There is a wide variety of clocks and watches available.
They mainly fall into two groups, alarm clocks and wristwatches. Some of the kitchen timers also have a talking clock featture.
Some talking clocks and watches have digits or a clock face., some just have a speaker and buttons.
There are radio-controlled clocks and watches. These pick up a daily radio signal and reset themselvesautomatically to keep good time.
Braille / Tactile Clocks and Watches
Some people do not like a talking clock or watch, especially in public. They prefer to be able to check the time without others hearing.
These watches don’t usually use actual Braille, they just have a hinged cover so that the wearer can open it and feel the position of the hands.
Fitness and Sport
Many sports stadiums have special commentary facilities for fans with visual impairnents. Contact the stadium or team directly to ask what facilities they have.
Many fitness gadgets like Pedometers have Talking varieties.
Talking Bathroom Scales
There are several makes of talking scales now so it is easy to keep track of your weight.
If you want to do some personal fitness, you can try a wearable fitness monitor like Fitbit. This connects wirelessly to your smartphone. You can then check all of your stats via the phone.
Fitbit also sell a compatible body fat monitor /scales.
Around the Home
Colored Elastic Hair Bands
You can buy elastic bands from a stationery store like Office Depot, or buy a selection of colored elastic hair bands.
These have various uses.
In the shower, you can slip the bands over shampoo, conditioner or other bottles so you can easily tell them apart. One band for shampoo, two for conditioner, three for the expensive perfumed body lotion and so on.
In the kitchen, you can slip bands onto bottles or jars so you can tell them apart, one band for ketchup, two for hot chili sauce.
They come in a variety of bright colors and thicknesses, are long lasting, waterproof and cheap.
For those with some usable visioin, a piece of brightly colored tape or a bright stickly label can be very helpful.
Again you can get cheap stickly labels at stationers, or hi-vis stickers for bikes and motorbikes.
Sticky Dots / Bumpons
A simple idea, but adding a couple of raised sticky dots can make a control much easier to use.
You can use them to mark the settings on a cooker, a washing machine, anything with a dial.
Dots come in a range of colors and sizes.
In the UK there are charities like RNIB who will arrange for someone to do a home visit and attach aids like these to your applicances.
Be imaginitive and creative and you will find all sorts of uses.
Help in the Kitchen
Liquid Level Indicator
A simple idea makes a big difference!
This little gadget sits over the rim of a glass, cup or mug with a few metal wires poking into the container. When the water level reaches the wires, the gadget beeps so you know to stop pouoring. Some models vibrate as well as making a noise. Some models have an intermittent beep at the first level, then a continuous beep at the second. Useful for adding milk or cream to your coffee.
Talking Kitchen Scales
Not just useful for visually impaired cooks, these can avoid the hassle of finding reading eyeglasses while cooking.
This Board holds bread or other food to be sliced, and has a guide for your knife.
Small and easy to use, these gadgets are essential for any timed piece of cooking.
LS&S Products, NY – products for the blind, v isually impaired or hearing impaired.
A2i Transcription service – transcribe material to accessible formats
COBOLT Systems aids for Visually Impaired People
Load2Learn – Accessible Learning Resources
NNELS – National Network for Equitable Library Services
India and Indian sub-continent
This page was last updated September 7 2015