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".
It took a good deal of courage to stand up in front of people and give a talk - well done for agreeing to do it. I do have some experience of deafness as my mother was very deaf from childhood due to many severe ear infections and no antibiotics in her day.
ReplyDeleteI like the photo of Bob the Badger on your sidebar - I assume he's a regular visitor to your garden:)
Hello Rowan, My husband and I were on holiday in the Forest of Dean when I took this photo. We were staying in a small cottage on a farming estate and the farmer's wife told us that if we left some honey sandwiches on the patio, we would have a visitor. Bob, the badger came every night at roughly the same time.
ReplyDeleteI think you were very brave to stand up in front of people and speak for ten minutes. Love the story of Bob the Badger. We forgot to give you a pot of marmalade on Thursday!
ReplyDeleteI was nervous but once I'd started, I was okay. It is surprising what you can say in ten minutes!
ReplyDeleteThe BRPS is a marvellous organisation and helped me enormously and I have always been grateful for that.