What have I been doing recently?
Tuesday 11th JuneHillindon Carers Fair, Uxbridge Pavilions, all dayWednesday 19th JuneWednesday Break, Ruislip Methodist Church.
I will be giving a talk starting 2pmSunday 14th Julyat
Rickmansworth Masonic Girls School.
I will have a stall for my charity at the
Middlesex Masonic Family Fayre.
That’s from 11am and free entry.
EAR4U Goes to LegolandMy companion for the day was Belle, she is a lovely girl of just fourteen years old who suffers from Hirschspungs disease this affects her digestive system but also her sight and hearing will, and is slowly decreasing, meaning she may one day have to wear a BAHA. She came to me through her mum as her mum Ellie was receiving no help or support for Belle and her hearing problems.Ellie dropped off Belle at my house, where we were taken by car to the Legoland Hotel, Windsor. Wow! What a surprise, it looked as if it had been made out of lego bricks!! We were greeted by lovely staff who told us to go to our floor by lift, which was worked by a card we were given. The hall and lounge we were to use was lovely. We were greeted by the smell of coffee and hot croissants!The OTICON team were there to greet us, along with a few others that I knew, we all greeted each other and then sat and had coffee and lovely chocolate croissants.The team called us into the hall where there were about eighty people – from babies with the soft band to older wearers, it was great for me and Belle to be in a room with so many people just like us!!The team told us a bit about the new aids that are now available, including the SuperPlus which covers a wider range of hearing loss. Also a new soft band is coming out.The talks were from a young man of approximately Belles age, telling his story his way even to the school having an assembly for him to be able to overcome his worries and help his friends to understand and support him, which seems to have worked, as his mum said he is now happy and doing well, with support from aids used in the classroom.A slightly older boy and his mother told how she felt that having to make the decision for her son’s future without being able to ask any other wearers, other mums or professionals. Again that question of support cropped up!! But the boy told us how growing up with his aid was, and said that his mother had made the best and right choice for him. There was not a dry eye to be seen, it was quite moving.At the Royal Throat, Nose and Ear hospital in Grays Inn Road, London, there is a BAHA support group, to which I am a secretary, where we have a clinic every month, the surgeon will not see anyone before they have seen us. There are over two hundred people on our register. Most people say they found it really helpful to see the BAHA team, where thay can ask ‘silly’ questions, mine was "can I dye my hair" – I didn’t want to be deaf and grey! This is one reason why I set up EAR4U, something that I was able to point-out during the 'Question Time'. I asked the 80 people in the room "how many had seen someone to talk to who was a BAHA wearer prior to the fitting of the BAHA" only one person had, but even she had to ask her consultant to be put in touch with someone!!After the talk it was time to go to legoland Fun Park. What a great time we had! We laughed at some of the group when they were on the rides, then the laugh was on me as Belle said we are going on the spiders web ride Ann! We were spun round and round as if caught in the web with Belle spinning the wheel to make it spin even faster!! We got off and Belle laughed as I couldn’t walk straight as my eyes wouldn’t focus.Finally, after a few more rides it was time to make our way home. We had lots of fun, met new people and learnt a lot! The main thing being that we need more volunteers to come and see the people who attend our clinics, to help and advice them before they make this life changing choice for the future.
The Royal College of SurgeonsMy friend and I were invited to The Royal College of Surgeons of England at Lincoln's Inn Fields, London, to try to get the government to agree for more to be done to help people like myself and many others who wear BAHA.s.We arrived "suited and booted" and very excited. The building was amazing; climbing the steps and passing through high pillars was a little daunting. The inside was fantastic, with paintings and marvellous architecture, we wished we had more time to look around. After finding the room we took our seats. There were talks and group discussions, but it was really rewarding to find later that my friend and I had helped to get a big project accepted and launched!
A day at The Science MuseumMy friend and I were invited to an Open Day for Cochlear and B.A.H.A. users. We accepted the invite as it was to be held in a rather unusual place, The Science Museum in London! My previous visits were as a child and after a memory jogging walk along the length of the museum, we found all our friends from Cochlear UK. We listened to people telling us about the new all singing, all dancing B.A.H.A.s that were about to be launched.I was asked what my favourite first sound was, after being fitted with the processor part of your BAHA. – For me it was "the lady in the lift."On the day my B.A.H.A. was fitted, we were going away that evening for the weekend. We arrived at the hotel and our luggage was taken to our room. We booked in, made our way to the lift, we both stepped in, we were on our own. We arrived at our floor, my partner stepped out, I said to him "where is the lady that just spoke to me? She must have been in a hurry!", "What Woman?" he replied, "the woman that went by" I repeated. By this time he was really laughing because what I had heard was, "First floors doors opening!!"When we got to our room I said I would unpack but make a cup of tea first, I filled the kettle, switched it on, went to open the window that overlooked the sea to look outside. I could hear the waves and the gulls, amazing! Suddenly I heard an odd gurgling sound, the water was boiling!! I was so fascinated by this odd sound, I kept switching the kettle on and off just to hear it!!Being able to hear all these new sounds was amazing, life changing. Hopefully I can help you to hear them too!!
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Drop in at Ruislip Manor Library
Lindon Avenue, Ruislip HA4 8TW
Registered Charity No. 1129338