Guide Dog

I decided to apply for some mobility help as I felt that there was a need for a change which was to gain some independent and dignity. I asked my husband Ronald and daughters what their thoughts were regarding the possibility of applying for a guide dog and they were delighted with the suggestion.  I got in touch with the "Guide dogs Association for the Blind" and after several meetings with their representatives, found that yes, a guide dog was an option. At first, it was suggested that I had some training with the long cane but I refused without any hesitation with that option, it really did not appeal to me but later I changed my mind and started my training about a month later. I knew that I should be more independent and less dependent on other people for help but to go out without having to wait for someone to come along when available was very nice.  I have been very lucky to have a friend who often went into town shopping with me.

About two months into my training, I fell down the stairs at our home and I certainly would not recommend that anyone should try it for I was in pain for months and lost a lot of missed mobility training. I really do not know why I fell, did I miss a step or did I misjudge the stairs, I really do not know. I asked my elder daughter to put a message on the private family website for me and this is what she put:

“Just wanted to let everyone know that, although she will be fine, we have just spent the day at A & E with Mum. This morning Mum decided to try for a career change as a stunt woman. She has fallen down the stairs at home - full length from top to bottom, doing a somersault on the way down. She knew she had hurt her back so stayed very still until the ambulance arrived to take her to hospital. She has been incredibly lucky and not broken anything, although she is incredibly sore and bruised. She was looked after very well and fitted with a neck brace, until she was x-rayed. Unfortunately she enjoyed it in A & E so much that when they discharged her and she was leaving she promptly fainted so had to be re-admitted for a couple of hours until she felt she was ready to go home. She is back at home this evening and Dad is looking after her. Joking apart, it could have been a lot worse if she had not acted on instinct during the fall and stayed still until the ambulance arrived - Mum asked me to let you all know. Get well soon Mum XX “

It was several months before I resumed my mobility training and was eager to get on with it. I started on my long cane training but first I did a refresher’s course which was to prove very useful and did help to improve my confidence, then it was the turn of the long cane. Will talk about this next week.

My hobbies

My hobbies are photography, family history, music and computers. I had my first camera, a folding Brownie camera way back in 1952 and I still have it and will not part with it for sentimental reasons, it was a present from my mother and father.

 At present, I have a Canon Power Shot SX 200 which I believe to be a great little camera and I have been able to take some great images, well I think so! One summer, Ronald and I went to the New Forest with Rosie, my sister and her husband, Paul. We all had our cameras with us and took lots of images. One lovely afternoon at Keyhaven, we were sitting on a bench watching some gulls flying around when I told Rosie that I wished that I could take some shots of the gulls but explained that I was not quick enough. Paul called over that he had some cold chips in his bag and that he would throw them in to the air so that I could take some shots of the gulls. My first attempt was a failure because I was not aiming my camera in the same direction as Paul was throwing the chips so we decided to have another go making sure that we both knew what we had to do. This time, I held my camera up and using the wide angle took some shots of the gulls and because of the great fixture “trimming” on my camera, with a few clicks I was able to produce some lovely close-ups.

 From this photo, I was able to obtain the following photo.

 The first time that I became interested in family history was when I was looking at some old photographs, birth, marriage and death certificates and decided that I wanted to know more about my ancestors especially my mother who died when I was thirteen years old and did not know much about her family. For a number of years I have been tracing my family history, visiting archives, libraries, and asking for help from many organisations devoted to family history. It was difficult trying to find my way around the increasing number of resources on the internet but I had a lot of help from other researchers especially Rosie.  I found that using the internet for research was very popular probably because when exchanging information with fellow researchers it was much quicker and more efficient using my computer. I have exchanged information with researched from Australia, New Zealand, Canada, Channel Islands, USA, Ireland and England to mention just a few. My husband and I have been to different Archives and Record Offices, to different Churches so that we could look at the headstones and sometimes we had strangers helping us. We had lots of fun and enjoyed meeting other people who had similar interests and enjoyed talking to some of the vicars who were very helpful. We got wet many times and ended up with muddy shoes but we still had a great time. I have found lots of information regarding my family and my husband's family, and as it is an on-going project I am hoping that other family members will carry on with the work.

There is nothing I like better than to sit in a comfortable chair and listen to music particularly from the musicals by Andrew Lloyd Webber. A group of us went to see “The Sound of Music” starring Connie Fisher in London, I really enjoyed it though the light conditions made it difficult for me at times otherwise it was fantastic. I have no particular favourite singer, as there are so many that I enjoy listening to such as Russell Watson, Susan Boyle, Lesley Garrett, Katharine Jenkins and Elaine Page. I do intend to have the music on too loud so have started to wear headphone that I find to be so much better.

I do not know what I would do without my computer; I enjoy surfing the web, researching my family tree, being the administrator of our private family web site and doing my blog on Blogger. There is so much that you can do and it is a lovely way to keep in touch with family and friends.

Blind v Deaf

I have often been asked the question “Which do you think is the worse – to be deaf or to be blind?” I find, however that comparing the effect of my handicaps to be rather futile. If one answers, “It is worse to be deaf,” blind people tend to become offended, and if one answers blindness, then deaf people become very defensive. I have found that over the years the sum of my two handicaps creates a greater handicap than either the problem of partial sight or partial hearing does alone.

It must be hard for hearing people to imagine what it is like to be deaf or blind but when hearing and sighted people consider their friends and relatives with these two handicaps, they should try to understand what that person might have done if they had not been so handicapped. For instance, the friend might have been a good pilot or a professional footballer or cricketer.  On the other hand, they have to appreciate that the individual may well have gained tremendous practical skills or insights because of their handicaps. 

Helen Keller, the well-known American deaf/blind graduate, authoress and legend was asked which of her two disabilities was the worse and this was her reply;

"I am just as deaf as I am blind. The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus – the sound of the voice that brings language, sets thoughts astir, and keeps us in the intellectual company of man. "

  Here is another quote;

"Everything has its wonders, even darkness and silence, and I learn whatever state I may be in, therein to be content."

Helen Keller

What is retinitis pigmentosa?

When I joined the BRPS in 1981, I was able to find out more about retinitis pigmentosa.  First of all I was told that retinitis pigmentosa does not describe one disease but a group of hereditary diseases of the retina. The first symptom to appear is difficulty seeing in low light conditions such as outdoors at dusk or in a dimly-lit room and is referred to as night-blindness. This is followed by the narrowing of the field vision which is called “Tunnel vision”.  This information indicated that my field vision was actually narrowing hence why I was bumping into things and not because of clumsiness as first thought. I found it difficult to understand at first because when I am looking around I do not see any objects standing in my way, in other words my brain is being told that there is nothing there but when I do actually bump into them or knock something over, I often end up with lots of bruises as if I have been in a fight!  I cannot see people standing by my side or when young children stand in front of me because I have lost my side vision; it always worries me when there are small children around me.  Furthermore, I can see no point in worrying about objects being in my way until I bump into them because until I do, they do not exist. I regularly check my vision field and I am aware that it is getting worse.

So, now we know that I bump into people because I fail to see them standing near or coming towards me due to a loss of side vision, meaning the area surrounding my visual field; I miss objects above, below and to both sides. The combination of hearing and sight loss also makes it difficult for me to realise when someone is approaching me from the side and often from the front. Imagine what it is like in a supermarket when shoppers with their trolleys are approaching you in all directions then you will realise how difficult it is for me to cope with this. Some people even leave their trolley unattended in the middle of the gangway and that is when I nearly always accidentally bump into them because I do not see them. There I am apologising while the owner gives me a disapproving look until they see my white stick then it is all smiles and they are apologising too! To solve this I push the trolley and whoever is with me hold the trolley at the front and guide it along. As I have got a computer, I decided to try  shopping  online but I was having some difficulty browsing through the items and it took me so long that I decided it was not for me. My daughter, Anthea told me that if I emailed my shopping list to her, she would order them for me and that has proved successful. I miss going round the supermarket but do visit occasionally with my daughter, Sharon. The good news is that since I have been using my long white cane, I have not bumped into anything because the purpose of the long white cane is to detect any obstacles at ground level and to the waist that may be a danger to the user. I know what my Rehabilitation Worker will say if she ever reads this because she knew only too well about my apathy towards the long white cane; she will smile to herself and say “I like it”.

British Retinitis Pigmentosa Society

I joined the British Retinitis Pigmentosa Society in 1981, the Society was founded in 1975 by a group of people that had retinitis pigmentosa (RP) or had a special interest in the eye disease. This group of people were very concerned by the lack of knowledge regarding retinitis pigmentosa (RP) in the medical profession and the lack of support given to people that are diagnosed with retinitis pigmentosa (RP) that they decided to do something about it. Their aim was to do two things, to find a cure by raising funds for research and to provide information and support for people diagnosed with retinitis pigmentosa (RP) and their families. I applied for membership and within days received the much awaited reply; I have waited a long time for this information but the information about the eye disease did not make comfortable reading.

Our family went to several conferences and meetings and it was good to meet other people who had the same problems. We went to a Weekend Away which was just for people with retinitis pigmentosa (RP) and deafness. Mary Guest asked me if I would give a short speech about how I coped with RP and deafness and noting my reluctance explained that there would be four of us talking about how we cope and there would only be about twenty people there and the speech should only last for about ten minutes. I decided that I would do it but Mary miscalculated as there were a lot more than twenty people there, for once I was glad that I had got tunnel vision; it helped that by looking at my husband who was sat in front of me prevented me from seeing any  of the other people!

During the “Weekend Away”, I had a go at doing some braille and found it fascinating , when I returned home I asked my social worker if I could learn how to do braille and so I did, even though I did not really need it at that time but you never know it may be useful one-day. At the Weekend Away, I saw some members that had Usher Syndrome being led around by escorts or maybe they were friends. To communicate, the interpreters would sign on their hand using the Deaf/Blind Manual.  The members appeared to be very cheerful and I admired them very much and their attitude did have a lasting effect on me. I believe it was while I was there that I obtained a copy of the Deaf/Blind Manual Alphabet. It did make me realise how important it was for Deaf/Blind people to be able to communicate with others hence the Deaf/Blind Manual that is easy to learn, a tactile method of feeling, along with sign language and finger spelling are extremely important for people with dual sensory. I am confident that technology will continue to provide help for people with hearing and sight problems and that the BRPS will continue with their magnificent work to" fight blindness".

My hearing aids

Every morning, I reach for my hearing aids and put them on, they are always in the same place in front of my alarm clock  so that I know where they are should I need them during the night. The first one was an analogue hearing aid that I was fitted with when I became a pupil at the Maud Maxfield School in Sheffield, now I wear digital hearing aids.  Without my hearing aids I would not be able to hear the everyday sounds that most hearing people would probably take for granted, such as the alarm clock, the click of the kettle when the water has boiled, the bleeps on the microwave and the knock on the door. Yes, there are many challenges that I have to face ranging from using the telephone and even watching the television and thankfully, there are many devices that can help to overcome these difficulties.  I regularly look at the Royal National  Institute for the Deaf and the Royal National Institute for the Blind catalogues or visit their online shop to look at their problem solving products and I have found both organisations to be very helpful and useful.

 I have an alarm clock that is loud and has a vibrating pad that is put under my pillow. When the alarm goes off the pad will vibrate and wake me up, it is brilliant. A representative from Camtad demonstrated some doorbells at my home and I am delighted with the chosen one which has an excellent door chime and a flashing blue light which are activated when the push button on the front door is pressed. I purchased a large button telephone with pictures which is very easy to use from the RNID. The phone contain direct dial buttons into which I have inserted photographs of family members that I contact regularly so all I have to do is press the photograph  of  the  person that I want to contact. The phone has a volume control to increase the sound but with being a hearing aid user I use the “T” setting when using the phone.

 I do not particular enjoy watching television programmes as much as I did at one time because of the background noise as it makes it difficult to understand what is being said by the main characters. If I cannot hear or understand what is being said then I cannot see any point in watching the programme as I would not be able to follow it. I love to watch shows on the television but even then there is a lot of background noise and flashing lights.

 A few years ago when Ronald and I were on holiday in the Yorkshire Dales, I heard a thrush singing, it was beautiful. Ronald called me over to the large bedroom window at the Bed & Breakfast place where we were staying , it was a beautiful day and the windows were open, he told me to sit by the window and listen carefully and that was when I heard the thrush singing. I was so excited and I asked Ronald if he knew where the thrush was and he pointed out where it was. Some weeks before the holiday, I was given two digital hearing aids and I am sure that was the reason why I could hear the thrush singing: I will always treasure that moment.

When I had my new digital hearing aids, I found that I could hear much more. There were many sounds that I did not recognise, sounds that I have never heard before or probably not have noticed them. It took a while for my brain to recognise and remember these sounds that I was now hearing such as the sounds of the birds singing.

What is it like to be hearing? I do not know but I can imagine that some hearing people must sometimes wish that they were deaf! I do not mean it literally but I have heard people say that they wished that they were deaf like me especially when the children are making so much noise and driving them up the wall.  There are certainly some pros in being deaf, for example I do not wake up because my husband is snoring but when I am snoring he wakes up and then cannot get to sleep again. I sleep through thunderstorms and any outside noise such as rain, it does not disturb me. When people phone our home and ask if they can do a market survey and that it would only take a few minutes, or explain that they would be in the neighbourhood in the near future and ask if they can call or if we want some new windows or whatever, it is usually someone with a strong accent that I cannot follow or someone talking very quickly as if they are in a hurry. I start telling them that I am deaf and that I do not understand what they are talking about then suddenly, they hang up on me

A white cane

The reason that I would not use a red and white cane was that I found there were not many people aware of what the red and white cane was used for, people knew that a white cane indicated that the person carrying the cane was blind or what we would say severely vision impaired to-day but did not know that a person carrying a red and white cane was deaf as well as being vision impaired. Many people have stopped me to ask how I have managed with the white cane, mostly by people who are vision impaired and because it has been suggested that they should try using a white cane. The first white cane that I had was a guiding cane, a folding one; a straight cane that can be folded into four sections and held together by an elastic chord.   White cane is used by vision impaired people as a mobility tool and as a courtesy to sighted people.  Courtesy is just as important, as carrying a white cane lets others know that you have a sight problem and warns them to be careful.  I understand why some vision impaired people are reluctant to use the white cane because I did not want to use mine at first, mainly because I could not accept being registered as a blind person when I still had some vision and I did not think that I needed it.

The first time I went out carrying my cane, it was not long before I folded it and put it in my bag explaining that I did not need it while I was with my husband, Ronald. It was some weeks before I went out with it again and I felt embarrassed and uncomfortable and worried about being seen by relatives, friends and neighbours. I found that no-one took any notice though some of my friends and relatives expressed admiration at my courage and it did take courage to go out especially when carrying a white cane for the first time. I was even told that I looked well with the white cane and though I knew that they were trying to help me, I did appreciate their encouragement. The white cane , like my hearing aids soon became part of me and it went everywhere with me making me feel safe, this was much better than bumping into people, falling down steps or tripping over kerbs resulting in some people probably thinking that I was clumsy or drunk.

You may be interested in how the white cane was developed though blind people have been using their canes for centuries; the white cane was not introduced until after the First World War. In 1921, John Biggs of Bristol who was a photographer became blind after an accident and because he was uncomfortable with the amount of traffic surrounding his home, he painted his walking stick white to make it more visible.  Ten years later in 1931, Guilly d’Herbemont of France launched a national white stick movement for blind people.