Coping with life in a dark silent world

Evening Chronicle (Newcastle, England), April 25, 2005

Byline: By Craig Thompson

The loss of hearing or sight can have a devastating impact on the life of an individual. But what happens when a person is diagnosed both deaf and blind? Craig Thompson finds out

Life can be tough for anyone living with a sensory impairment.

Whether they are blind, deaf or plagued with communication problems, it can be difficult for both sufferers and their carers.

But when all these factors are combined, people can find themselves isolated in society.

The official definition of a deaf-blind person is someone with a "combined hearing and visual loss causing severe problems with communication, including day-to-day access to information and increased mobility problems".

Those diagnosed deaf-blind fall into four groups.

Firstly, they can be people who are born deaf and blind, often due to their mother suffering rubella ( German measles ( during pregnancy.

Secondly, there are those who are born deaf and then lose their sight.

This is often caused by Usher syndrome ( deafness followed by a decrease in sight because of retinitis pigmentosa, or what is more popularly known as tunnel vision.

The next category is people who are born blind but then lose their hearing.

Finally, there are those who become deaf-blind, most commonly as a result of old age or through illness or accident.

There are about 24,000 people in the UK who are classed as deaf-blind. But there could be many more.

The figures do not take into account the large number of elderly people in the North East who are in the process of losing both their sight and hearing.

Alan Pyle is Deafblind UK's North East region development officer. His role is to support people who are dual-sensory impaired (DSI).

Alan, from East Boldon, said: "We exist to help people with a unique condition.

"If you consider 90% of all information is absorbed by what we see, then the added deafness makes it a severe problem, especially if that person lives on their own."

Many DSI people live by themselves or are completely reliant on a partner for day-to-day tasks, and then there is the additional worry about the loss or death of that carer.

With Alan's help, DSI people can have access to a number of support agencies, like social services and the health service as well as travel companies.

Alan added: "A lack of access to these bodies reinforces the isolation and dependency of DSI people. It is this isolation and dependency that we, as a charity, strive to overcome but we urgently need more dedicated people to train as volunteers.

"Even befriending someone while their carer goes for a break to the cinema provides much-needed respite for both the carer and the DSI person."

Diabetes meant I lost two senses

CHRISTINE Milne is deaf-blind.

The 59-year-old, from Newcastle's West End, is dependent on husband Bill, 75.

Christine has been a diabetic since childhood and, until 10 years ago, was able to manage her diabetes by eating and drinking the right things.

At that time, she had full hearing and vision.

But, in 1995, she started to develop hearing problems. It was a number of years before it became a serious problem but then her hearing rapidly deteriorated.

The diabetes contributed to the problem and she also suffered from arthritis and heart problems.

Christine said: "Without my hearing aids, I can't hear anything. I also cannot read or make out people's faces.

"I know my husband by limited sight, likewise my daughter and her partner and our friends, who live away from the area but visit regularly."

A mini-stroke five years ago set Christine back even further, leaving her without speech and mobility.

She fought back to regain her speech but her mobility remains slow and she now uses a wheelchair. Christine added: "I've always been an independent woman, so it's very frustrating.

"I previously had a job as a doctor's receptionist and liked doing things around the house.

"I can't describe what it's like not being able to make my own decisions about basic things.

"I can't learn Braille because the diabetes affects the fingertips.

"The most disconcerting aspect is that I can't be part of company. If I dribble and Bill's not there, it's a problem, so we rarely eat in restaurants any more.

"It's been difficult for some friends who don't visit like they used to. I think they may be a bit embarrassed trying to communicate with me.

"It takes a long time just to hold a small conversation.

"Like everyone in my situation, I sometimes feel really isolated and have periods when my confidence is low.

"I don't know what I would do without my family and friends."

Christine has recently had tests for a digital hearing aid which may help her.

Offering support

DEAFBLIND UK was started in 1928 by a small group of deaf-blind people.

The charity is currently assisting thousands of deaf-blind people throughout the country to cope with their disability and to lead as independent a life as possible.

There is a 24-hour telephone Deafblind UK helpline for support, advice and information. Contact 0800 132 320 or (01733) 358 356.