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.

Parsley Hay

One summer day, along with another lady who had sight problems, we went with two social workers for a bike ride on the Tissington Trail. We travelled by car to Parsley Hay and then hired two tandems. This is really a great way for two people of different abilities, in this case one with normal sight and one that is registered blind to go cycling together. We set off down the track, my social worker at the front doing all the hard work, I was just pedalling away. It was a lovely warm sunny day and was perfect for cycling; the trail is thirteen miles long and runs from Ashbourne to Parsley Hay. The trail is surrounded by beautiful countryside and is traffic free; it was previously an unused rail track. On our return journey, the social worker suddenly decided to stop for some reason and then turned towards me and suggested that I had a go at the front!  Was I hearing correctly, apparently so and after discussing what signals to use, we set off down the trail with me at the front! The trail was quite wide at this point so there was no real danger of cycling off the track but after a short ride, we swopped places again. After returning to the depot, we went for some lunch and then called at Bakewell to buy some Bakewell Pudding. Some of you may wonder what is special about the famous Bakewell Pudding! The famous Bakewell Pudding was first made in the 1860’s at the White Horse in Bakewell, Derbyshire. The landlady asked a kitchen assistant to make a strawberry tart but the assistant made a mistake by leaving out the eggs and sugar. Instead the eggs and sugar were used to make a filling for the plain pastry case while the strawberry jam was spread out on the bottom of the pastry but a secret ingredient was added hence the Bakewell Pudding was produced

A few weeks later, I took my husband Ronald, sister-in-law Mary and the two girls to Parsley Hay, we all had a wonderful time and returned back home exhausted!

Registered as a "Blind Person"

A social worker for the blind visited me at my home and after a chat, I was asked to register as a partially sighted person but I refused on the grounds that I did not consider that I was at that stage or was I being stubborn? The social worker continued to visit me even if it was only to ask how I was, I went to help with the talking newspaper and enjoyed helping out and meeting the other volunteers.

One day while shopping in town, I fell and badly grazed both my knees and you would never had guessed but the social worker turned up at my home the next morning before going to work, to see how I was doing! I told the social worker that I have had a bad fall but I had a feeling that she already knew and again, she asked me if I would go for registration so that she could help me. I agreed to go probably because I was feeling very vulnerable at that time; this led me to my being registered as a “Blind Person” and not as a “Partial Blind Person” as I expected. I was horrified and would not accept the label “Blind Person”, a blind person cannot see anything and I still had some vision so how can I be registered as a “Blind Person” was the argument that I used. It was just words that were hurting me, nowadays it is sight impaired (Partially blind) and severe sight impaired (Blind), a more acceptable description and does not make you feel that you are heading for the scrap heap.

The social worker wisely kept out of my way for a few weeks and I had no contact with her until the day that I received an invitation to the Derby Branch of the British Retinitis Pigmentosa Society of which I was a member to attend a meeting the next day at Derby. Their quest speaker was Mary Guest, a founder member of the Society with special interest in deaf people with retinitis pigmentosa. I really wanted to attend but realised that it was not possible as at the time we did not have a car. Later that day, I received a phone call from one of the volunteers at the Talking Newspaper and this was followed by a call from my social worker who arranged for some transport to take me to Derby.

I enjoyed the meeting and afterwards was able to discuss my difficulties in accepting my registration as a blind person with Mary Guest, she was very understanding and I have always appreciated that time she gave me. The next day, I went to help out at the Talking Newspaper and saw my social worker who asked if I was ready to talk and after replying that I was, followed her to her office. After thanking my social worker for arranging the transport, we discussed the meeting. The social worker offered me a white cane plus a red and white cane but I explained that I would never use the red and white cane but would use the white cane when I was ready.

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 indicated, people know that a white cane indicates that the person carrying the white cane is vision impaired but did not know that a person carrying a red and white cane was deaf as well as being vision impaired. I believed that I would feel more secure using the white cane rather than the red and white cane. At the time, it was the correct decision for me.

Our family

I met Ronald who was to be my future husband at a hockey tournament at Rampton, he knew that I was deaf and had an eye disease that could lead to blindness as one of our mutual friends had told him. I explained to Ronald in more detail what it entailed, he was very understanding and sorry that I had these problems but told me that it would make no difference to his feelings towards me. We talked about our future together and asked each other if our love would be strong enough to cope with the problems that my deafness and sight impairment would bring; he was adamant that it would make no difference. Ronald is from the hearing world and had no experience of deaf people; he had to learn that one of the hardest things that many deaf people face is socializing with hearing people.

We married at my village church on 25th September 1971 in front of many family members, friends and people from the village.  Our first daughter, Anthea was born in 1972 and Sharon in 1974. Ronald and I decided that I should be a full time mother instead of returning to work, we believed that staying at home with the children during their formative years was very important. I was there to witness their first smile, their first tooth, their first word which was dada and their first step, such precious moments that I will always treasure. When they were ill, I was there to care for them and to play and read stories but their father was the one that took them to bed and read the bedtime stories.  I was there when they arrived home from school;  I certainly enjoyed being a mother to Anthea and Sharon. Their father enjoyed playing games and singing nursery rhymes with them. When the girls were older and learning to play their guitars, their father went out and brought a second-handed violin so that he could join in with the fun but it was a complete disaster! Can you imagine what it was like with the two girls playing their guitars, their father playing a violin that he did not know how to play and our two family dogs howling loudly, well that was what it was like and I soon put a stop to that! I may be deaf but the noise that they were making was horrendous!

My sight problems took a back seat as they were not proving to be too difficult with our everyday life, and as time went by the family adapted to my circumstances in a positive way. Our two girls were brought up knowing that I had a sight problem and that I had poor night  vision and that I could not hear too well unless I had my hearing aids on; the girls knew that they had to touch me if they wanted my attention. I enjoy time-out when I take my hearing aids off as it is so peaceful and calming. When the girls wanted to talk to me they would fetch my hearing aids and give them to me.

  We enjoyed days out to places such as Dovedale, Chatsworth and Bakewell with Uncle Ken, my mother’s brother who adored the two girls. We started going further afield by organising excursions for family and friends to places such as Chester Zoo, York, Blackpool illuminations, Windsor Safari Park and London. For a number of years we went on holiday with the Buckley family, we had lots of fun and laughter.

 There were some problems due to my deafness and my night blindness, and one incident that I do remember was when we took the children to the pictures for the first time. Within minutes of the film starting, our youngest daughter, Sharon decided that she wanted to go to the toilet. My first thought was what we do now as Ronald could not take her and as I suffered from night-blindness I would not be able to take her as I would not be able to see where I was going. Ronald had the brilliant idea that Sharon should lead her mother to the “Exit” so he explained to Sharon that she was to hold her mother’s hand and take her to the “Exit” and he showed her where that was.  Did she take me to the “Exit”? No, she did not but what she did was to lead me down a row which had no way out at the other end!  Ronald realising what was happening  rescued us and took us back to our seats and then took Sharon to one of the lady members of the staff and asked her if she would take Sharon to the toilet.   After this, we decided that whenever we went to the cinema we would ensure that we went with a group of friends or family members.

Photographs taken at the Mary Hare Grammar School in the 1950's



Nature Study: Form 1 with Mr Salt 1952

School friends

School frie

At last a diagnosis

I was about twenty-five when retinitis pigmentosa   was diagnosed and this was after going to see my GP and explaining that I would not leave the premises until he promised to send me to the hospital regarding my eyes. I knew that there had been some deterioration and that it was essential that I saw a specialist. After examining my eyes and asking questions, the GP agreed to make an appointment for me but made it clear that it was purely to appease me; I did not care whether he believed me or not as I was happy because I was finally going to the hospital. On my next visit to see the GP for the report from the hospital, the first thing that he did was to apologise and then told me what he knew about the eye disease which was not a lot. The doctor told me that I had an eye disease called retinitis pigmentosa and that there was no cure and would lead to blindness. This was the last thing that I expected to hear so I asked for a second opinion, I wanted a private consultation so that I could ask questions but, again it was confirmed that I had retinitis pigmentosa. Once again, I was told that there was no known cure or treatment available and that it would get worse but was told that I would always have some vision. Yes, I cried a lot but that was surely a natural thing to do in such circumstances and this was nothing to be ashamed of, at least it helped to get rid of some pent up emotions.

 The first thing that I did was to pack up driving, I was going to buy my father’s car, an Austen A40 but I knew now that this was not going to happen. It was the correct decision for I certainly did not want to be responsible for any fatal accident and I would not be able to drive the car at night anyway. Nowadays, I believe that to obtain a driving licence people with retinitis pigmentosa or any other eye condition should undergo more stringent tests before being allowed to drive on the public roads.

About six months later I was at an all-time   low, I was feeling exhausted, isolated and unwanted. I did not want well-meaning family members to over-protect me but what I did want most of all was someone to sit and talk to me about the eye disease. What do you do when you have been told that you are gradually losing your sight? I felt alone as I did not know of anyone who had this eye disease or who could tell me how to cope with it. Some friends disappeared because they felt inadequate and embarrassed because they did not know what to say to me.  I desperately needed some emotional support but I was not getting any, not even from my father and stepmother.

 Why did I feel so ill, it was fear and uncertainty about the future and with not getting any support from anyone, it became too difficult for me to cope with the feelings regarding a diagnosis of impending blindness which believe me, is a frightening thought especially when there is hearing loss too.  I realised that I had come to a point regarding the eye disease which was restricting me in some way in my everyday life and I realised that I had to make some important decisions such as deciding on what direction I wished to take. I tried to disregard the position that I was in but I was not able to and I was certain that it would be better for me to know what the future held for me rather than ignore it.  One thing was certain, I will eventually have to adjust to a new way of life because of failing sight but would it be that bad, as it was not possible to predict how much vision I would lose. There would be moments of frustration and annoyance with myself but I was confident that I would find the strength to cope. I remembered the advice the specialist in Sheffield gave me which was to accept that I have got a rare eye disease for which there is no known cure or treatment, take care of myself and have fun which was certainly good advice and she gave me hope by remarking that I will always have some vision though others had said that the eye disease could or would lead to blindness. It became important that I found the courage to accept and get to grips with the situation, be positive and have a strong attitude and faith in myself.  It was not the end of the world for I was sure that I could still keep going though maybe not as I have previously been doing and I was aware that I had to sort out any of my problems on my own. For a long time I had to try and put on a brave face, trying to show that I have not got a care in the world but deep down I was hurting.