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Sound Advice Adult Stories

These stories have been collected from both our closed Adults Facebook group and directly from individuals who have a direct link with The Ear Foundation. Each person has been kind enough to share their personal experiences as a way to provide support and information to others in similar situations- we hope you find these accounts useful. 

For more information on our wide range of Adult services please contact Sarah Hoyle at: sarah.hoyle@earfoundation.org.uk or call (0115) 9427 804

 

NEW STORIES - 2018/ 2019

David

I was born with normal hearing,  and was to continue in that happy state for more than 40 years, during which I made one choice of a hobby which was to have repercussions…. Later!

My grammar school was one of a rare few that had an Army Cadet unit, which I joined at the age of 14 – opening up a world of experiences not usually open to teenagers, including firing rifles and machine guns, and exercises with big bangs to simulate grenades.  Since the early 70’s we have taken great care of our cadet’s hearing, but in the early 60’s the long term threat was unrecognised.

The years went by, and I progressed from being a cadet to being an Adult Instructor, and eventually an Officer.  For most of this time I was able to make my hobby a full time job, until I retired at 60, and went back to being a pure volunteer for 5 more years. It was in my middle 40’s when my right ear began to progressively lose high tones, and in a few years it had completely lost its function.

Early into my 50’s, the left ear also began the same slow loss of tones and clarity, but like many men in that situation, I was firmly in denial – “I can manage well enough, but thank you!” One day, however, in my wife’s office, when someone spoke to me behind my back, I just walked away: and was sent packing to our local ENT department.

Given an NHS analogue aid, it helped for a couple of years, and then a privately bought digital followed it, until I was by now 57, and that did not help much either.

By now, with no deaf-skills to fall back on, my life was in a bit of a mess. Phones were a no go area, and only the internet and text messages enabled me to communicate. Had my job not been army based, I might not have kept it, but many soldiers and veterans are members of the “Say again” Club, so allowances are routinely made.

Outside work, music, the cinema, theatre and even the pub were off limits. TV was strictly for use with subtitles, and even group conversations were an exhausting challenge. Life was now a process of withdrawal, from things with which you could no longer cope, and rather depressing.

Quite by chance, my wife was talking to an acquaintance who worked in the local ENT Dept, who mentioned Cochlear Implants.  Some active internet research was followed by a time-saving appointment with a private ENT Consultant, who did the tests and referred me to the Nottingham Implant Centre.

What a difference from the lack of support you had become used to! Right from the start you met expert staff with a positive attitude and a whole new ethos. Back in 2005 the selection process was much more leisurely, as only one adult per month was implanted, so it was months of trips to Nottingham, culminating in the offer of an implant in September. They would even do it into my “useless” ear, to save what little I had left. I chose to have a Cochlear Freedom.

After being implanted at the Queens Medical Centre, without any problems at all, I was scheduled for switch-on in mid-October. My wife and I reported to the Ropewalk that morning, with the patient in the right mental state “hopes high, expectations moderate”. After some explanations, and the first of many mappings, it was time to go live. Yvonne, my audiologist, had said that she would talk to me until, with luck, I might understand her.

Twenty seconds of static was followed by an odd word, and then she was talking to me in clear “Alvin Chipmunk” tones.  “You can stop talking now Yvonne” – “Pardon” – “Watch my lips, I can hear you” (she never forgave me for that, and boy did she exact revenge!)

Two hours later, having scored 78% in a word comprehension test, I drove away home talking to my wife in the car, for the first time in years. Many of us say it, but for me it was certainly true, my life changed, swiftly and dramatically. It took a little time, and a few re-mapping sessions to achieve what seems to be my stable set of maps, that cover most situations.

Fourteen years down the line, learning curve long over, I use phones of most sorts, have braved cinemas, theatres and crowded restaurants, and can hear more birds than the average birder of my age can. There are times and situations when you are reminded that you don’t have two normal ears, but I can happily live with that!

One last thing: not long after getting my life back, a determination was born to try and repay a debt, by helping others in the same situation. I became a Volunteer Advocate, with the backing of Cochlear UK, and now am always ready to offer counsel, advice and mentoring to patients before and after implantation. Will I ever pay off the debt – no, it’s much too big, but if I try hard I may put a dent in it!  


Jess

Jess

Hello, I’m Jess. I am profoundly deaf with a cochlear implant. I haven’t always been profoundly deaf; if you read on, you’ll find out a little bit more about me!

When I was seven, we found out that I was profoundly deaf in my left ear. I remember it well: my mum was so upset but I wasn’t sure what all the fuss was about! She treated me to a McDonalds Happy Meal on the way home. This would become a special treat whenever I had to go for a hearing test. They did not fit me with a hearing aid and my right ear was fine, so I managed. I never saw myself any different to any other person, but I got extra time in my exams, which was a massive bonus!

When I went to university at eighteen, I started to suffer with bad tinnitus. I started to notice that sometimes I would struggle to hear. When I went for a test, they gave me an in-the-ear hearing aid on which I could adjust the volume. I loved how discreet it was. As the years went on my hearing would fluctuate quite a lot with the tinnitus really affecting what I was hearing. Although my hearing did decline gradually over time, I was adamant I was just having good days and bad days. By my mid to late twenties I was wearing my hearing aid when I felt I needed it.

Summer 2016 I had a miscarriage. After this my hearing declined from severe to profound deafness. At the time, I was working in a primary school. I remember watching the children’s Christmas play in the afternoon and following it okay with a script. By the evening performance I could barely hear anything at all, even with the script. I could no longer hear children younger than seven. I found being in busy places unbearable due to the noise. I could no longer work in a classroom setting and could only function one-to-one. I lost the ability to hear music. I couldn’t use the telephone. I couldn’t have a conversation in the dark as I was reliant on lip-reading. The list is endless! My hearing aid was no longer helping me as it wasn’t providing me with the sound I needed to function in my daily life. I withdrew from social settings and I watched people withdrawing from me as communication was becoming a real barrier. I began to feel incredibly isolated, frustrated and scared.

After meeting with my local cochlear implant centre in early 2017 and completing tests, it was decided that I was suitable for a cochlear implant. I was over the moon but apprehensive about what was to come. In September 2017 I had the implant and was eventually switched on four weeks later. My switch-on was amazing! I picked up voices straight away, although at first, they sounded very much like chipmunks! I remember going back to the car and calling my mum; I heard every word perfectly and it was incredible! When I arrived home, I put on some music. It was ‘Hello’ by Adele and I heard every word clearly and it sounded just the same as I remembered. When she said the line ‘Can you hear me?’ I screamed ‘YES!’

Having a cochlear implant has given me my life back. I was able to return to work doing what I loved: working with children. I do remember a woman visiting me when I was deaf saying I would never work with children again. I proved her wrong! Nine months after my operation, I had an interview to be a peripatetic Specialist Support Assistant working with children who are deaf/hearing impaired. I got the job and I was over the moon! I now work in lots of different educational settings, with children and young people who have different levels of hearing loss. I immediately have something in common with them as I have an implant. I love my new role and my implant as it has given me my life back and nothing is difficult anymore. I recently started learning to play the guitar as I won the Medel grant. This is something I have wanted to do for years. I am so pleased to have music back in my life again. Anything is possible if you are positive and believe in yourself.


Sue

SueI caught measles when I was approximately 5yrs old which damaged the nerves in both my ears & left me profoundly deaf. I got my first hearing aids when I was about 10yrs old, the old box types with the dangly wires, which I hated with a vengeance (My mum found them many a time in the back garden). 

When I was 16yrs old my mum purchased for me a private hearing aid (she could only afford to buy one) this worked for a while but it was obvious that I needed to have two, which my parents couldn't afford. I had to wait until I was 21yrs old for these. My family all put together & bought me two for my 21st birthday. They were good for a few years, but then my hearing deteriorated to the level that I had only, 5% hearing in my right ear & 3% hearing in my left ear. I managed to get along for many more years as I'm a very good lip reader. In 2009 I started to feel a bit down on myself as I was starting to feel "Excluded" from a lot of things. The manager at my hearing centre noticed that I wasn't my normally happy self & put me forward to be a Cochlear candidate. This was in July 2009. After having many appointments at Nottingham Ropewalk I was accepted to have an AB Cochlear implant.. I had my operation in November 2009, four months after being referred. I was switched on 4wks later and on the way back home in the car, I was repeating everything that
the Satellite navigation was saying... I couldn't hear a word of it before... The radio was on, I could hear the music... I could even make out some of the words being spoken by the DJ... One of the most wonderful things to happen, was that I could finally hear my Grandchildren talking to me.. The most precious was hearing "Momma"... I have never looked back since...An amazing world has opened up for me & I love every moment in my AB hearing world...x

 

 

 

 

 

Wendy

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Hi I’m Wendy  I guess l am one of the older implantee’s having had mine 21 years ago.  I lost my hearing on holiday when l was just 13 years old.  It was an awful time. I tried hearing aids but they didn’t work for me at all.  I had to move schools to one where there was a unit attached for deaf children.  I was never taught to sign and had to rely totally on lipreading. My parents were great and corrected and corrected me on pronouncing new words that l came across…I remember seeing a sign on the motorway once saying Fatigue kills, I had to ask my dad who is this person Fategoo ? Its been a family joke ever since !

From having 25 years of just lipreading l was talked into having a cochlear implant by my dad who had read about them in the local paper.  I had total reservations about having one, but in the thought l had nothing to lose and it would nice to hear my family if it worked.  From the minute it was switched on l was astounded at how much l could hear, I think the audiologist was too.  Going home and listening to my children chatting and laughing was fabulous, l think there were quite a few happy tears in our house that evening.

In 2016 l woke up one morning and put on my 'ears’ (which is the first thing l do every day and the last thing at night is to take it off), going downstairs l thought this doesn’t seem quite right, the quality was playing up and the volume up and down.  I changed the coil, the battery, the headpiece, turned off turned it on put it back in the drying box and sat and fretted. Calling Ropewalk they got me in fast, changing the processor, changing the mapping. Integrity tests, specialists came in and did more tests but it became quite clear the implant was failing so what to do next.

Eventually it was decided to take it out as by this time no sound was coming through, on operating it was found that due to scar tissue a new implant couldn’t be inserted. Dark days, but l had my Cochlear Implant friends from the Ear Foundation who supported me and sympathised and willed me on.

A few months later l had a brand spanking new cochlear implant in my other ear, a different brand this time and just as good as the one before, not bad for an ear that has had zero sound for 44 years.

Technology is so wonderful

 

Judith

Judith.A_Headshot_2018

I was born profoundly deaf (possibly due to a virus my mother picked up), wore hearing aids at 10 months old. My mum was very proactive in teaching me to speak and lipread, practising for many hours every day. She eventually went on to become a teacher of the deaf! I went to schools for the deaf in Bradford and a boarding school in Newbury after being tested for the normal hearing grammar school, but I would have struggled if I had gone there. I have lifelong friends from that boarding experience, and one of them suggested I try a cochlear implant when I was in my mid-40's, and after initial fears I'm so pleased I went ahead, it has proved much more powerful than my hearing aids. I did struggle at first as I hated the sound of my voice, but found I could follow a group conversation much more easily and can pick up some common phrases or numbers without lipreading. I do still hate the test when I have to work out what is being said behind a blank screen....I was implanted ten years ago and still pick up the occasional new sound :) And I enjoy meeting new and old friends at the Ear Foundation events and sharing experiences.

I'm grateful for the monthly coffee morning’s mid-week, and the evening events like the recent fashion show and pamper evening. I have met old and new friends at The Ear Foundation, and some of us club together to go to the theatre for captioned performances which are well organised in Nottingham.

 

 

 

 

 

Abigail

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Hi I'm Abigail Greenwood. I was born deaf with a severe hearing loss due to rubella and grew up wearing hearing aids in both years. My hearing deteriorated gradually over the years and then had a further decline following a virus and bad time with tinnitus in 2008. As a result of doctors telling me hearing aids were no longer of benefit to me and would I consider having a cochlear implant I went ahead with it. I was implanted in September 2008 and switched on October 2008. It was the best decision I had made in my life and it certainly helped me deal with the fresh challenges that came my way. I have been a volunteer at the Ear Foundation for a number of years and am regularly seen on the refreshment stall at the annual BBQ and doing a few speeches at events. The Ear Foundation has opened up a new world and new friends for me and I feel really blessed by it all.

 

 

 

 

 

Stella

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Hi everyone, Stella Thorley here. I had full hearing all my life until I became very ill in August 2011 and was in a coma for 5 weeks in intensive care unit. When I woke up I was severely deafened which later progressed to profound deafness. I used hearing aids successfully for 3yrs but in 2014 I started to really struggle at which point I started thinking about having a cochlear implant. My BSL teacher told me lots about her CI and told me about the ear foundation bbq which I went to and met some lovely people who advised me to go of a Facebook group for advanced bionics (which was the implant I had hoped to receive) where I met lots of others. I had my CI surgery on Friday 13th Feb 2015 and from my switch on it changed my world and has helped me so much to enjoy a hearing world again! I'd like to say a massive thank you to ear foundation for having events where we can meet each other.

 

 

 

 

 

 

 

Nick

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Hi, I'm Nick Tedd- I've been attending events for a couple of years now. As a result of this and mixing with others I am now much more confident regarding my hearing loss when asking for support, getting my needs met or challenging perceptions- while I still struggle I am growing much happier with myself.

 

 

 

 

 

 

 

 

 

 

Abi

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Hi my name is Abi, I am 20yrs old and I am going to tell you about my experiences with my cochlear implant.

I was born hearing, at the age of 10mths I had meningitis, I didn't lose all of my hearing, so I had to start wearing hearing aids on both ears. When I had hearing aids, it didn't help that much, especially in primary school. I didn't have much help in lessons and my education was poor. When I moved house, I started to get some support in year 4/5, and then when I was 8/9 years old I lost the rest of my hearing. Once I lost the rest of my hearing we were told about cochlear implants.

When we heard about cochlear implants, my mum and I began our research and attended the Ropewalk in Nottingham for more info and how it worked, what equipment and many more questions we wanted to ask. We were happy with it and could see the benefits it would bring, I decided to go with it. I had my operation in April 2004 and switched on a few days before my 10th birthday. When I was switched on, it made me jump because a loud beeping noise came through. I'm glad that I went for it because I can hear a lot better now. When we left Ropewalk, I heard some sounds that I never heard before and it was birds singing, and that was my best moment. After having my first cochlear implant it was hard, scary, with a lot of loud noises, but after a while these noises have become sounds which adapt to every day noises. One thing I love about it, is that I can switch off my implant and ignore my mum asking me to do jobs and my brother shouting whenever I want :-)

As the years go by with my cochlear implant, I went to a youth club that was held on Tuesdays nights for Deaf children and young people, I met deaf people that I hadn't met before and became great friends. I noticed that they were signing and I hadn't got a clue how to communicate. That was when I was talking to one of them  and they were signing back to the other person to translate from oral to sign and back again.

I started to learn sign language in secondary school with a unit for the deaf and having extra support in lessons.

When I was in secondary school, my hearing, my speech and my education improved because of my implant and with the correct support. When I was 14 years old I heard about having bilateral implants, so again my mum and I attend the brief meeting on how that was going to work, so I went for it.

When I left secondary school, My G.C.S.Es were brilliant, I have gained 5 Cs and 1D and I was so pleased. I went to college to studied child care and completed level 2 and 3, while I was in college I had the same support as in secondary school which helped me a lot.

When I was doing my level 2, I learnt how to drive and passed both my theory and driving test first time. Theory was hard because the English was so complicated and I had an interpreter with me, which helped.

When I was in level 3, I remembered that I hadn't heard anything about my bilateral implants, so I had my mum ring up about it because they only offered it up to the age of 19, and I was 18 at the time!

When the cochlear implant centre rang back they bumped me up the list as because of my age, we went to the hospital to have tests to make sure I could have another cochlear implant because I had meningitis, my hairs inside the cochlea were damaged and they needed to see if the wire could go through and we had been told it was a 50/50 chance, but we went for it anyway! I had the operation in November 2011, when I woke up after the operation, I was told the good news, the wire had gone in all the way, so I was pleased with it. A few weeks after the operation, I was tuned in, it sounded weird without my left implant because my right ear wasn't active over the years.

As I got used to it, the sound was clear with my other implant which made it a lot better. 

I had a job after I was 18 years old, I used to work at Blockbusters and I really enjoyed it, the staff where great, we had great laugh and my signing skill were very handy because we had a few Deaf customers come into the store and we just signed and signed. Sadly I lost my job because it went into administration and become unemployed, so I looked for another jobs and woth no success. I became a volunteer at The Ear Foundation at Dukes Barn trips, Crèches, and the Teens activities, I love going because I really enjoy taking part, and became a role model for the Teens, someone they can look up to. Whilst I volunteer I was still looking for jobs and last year in November to December I had a temporary job at Mark and Spencer's. After working at Mark and Spencer's, I was still searching for other jobs and I am now working at New Look and I'm loving it, the staff are amazing and I am really enjoying it.  

 

Margaret

"After a long and rocky road (I won’t bore you with incidentals but to me were horrendous) I was offered a cochlear implant but refused it as I had a lot of health problems Eventually my hearing deteriorated so much I was declared profoundly deaf hearing aids no longer were doing anything for me.

I had to rethink my situation and it was then I was offered a cochlear implant to which I gave serious consideration and accepted. I had my operation at Bradford Hospital on February 25th and the after effects were minimal

I had to wait the statuary four weeks before I could have the implant switched on four weeks off silence and lip reading and also the passing off notes. A time off reflection off what was to come.

Then at last came the day when the implant was switched on, what an emotional time it was.

I could hear the audiologist voice loud and clear not the electronic voice I was told to expect but her voice, my husband’s voice, my son in laws voice all loud and clear (tears all round).

Now the work begins!

I am now hearing and identifying noises which I have not heard for years i.e. the microwave, the kettle, running water in fact most kitchen noises but the best noise is once again to hear the birds singing.

As I have mentioned earlier the work continues and every day brings new noises and sounds I can identify.

By far the best I can now communicate and hear what other people are saying and can converse.

BLISS!"

 

Elizabeth

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My name is Elizabeth Fisher and I have been wearing hearing aids since 2002. Over the years I have gone from moderately deaf to profoundly deaf.

I have known The Ear Foundation for over a year, and they have been of great help to me with the services they provide. One being recommended Phonak Nathos SP hearing aids, which I have been wearing over a month now, after being fitted at Ropewalk Audiology. Since having these hearing aids, it has opened the world to new sounds I have not heard for a long time, as well as improving one to one conversations.

Attending Sound Advice Adult Days has helped me with learning more, and meeting other people like myself. It’s given me more confidence and my independence back.

 

 

 

 

 

 

 

Adult feedback

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