I have a cochlear implant in one ear, a paired hearing aid in the other. My implanted ear is deaf without the implant, I understand almost nothing in my hearing aid ear without the hearing aid. I describe myself as deaf without my hearing devices which is true. I do hear fairly well with both devices but not like a normal hearing person.
Great video. I identify as deaf. I have no residual hearing in one ear and a severe/profound loss in the other ear. I am in the hospital now and the board in my room has HOH in large letters on it!
I hope you're not in hospital for anything serious. It's good that the hospital have made sure that the staff know that you have hearing loss. I think the term hard of hearing vs deaf is pretty difficult because I feel that it is more connected to which stereotype you fit into more rather than your actual level of hearing (at least in most people's minds). People think: HoH= Wears hearing aids, speaks clearly but loudly, probably old, doesn't use sign language. Deaf= Only signs, can't speak clearly, was born deaf, hears absolutely nothing, doesn't use hearing aids. In reality, most people don't fit neatly into one category or the other so in my real life, I just switch between the terms. Online, I usually use deaf because that is how medical staff describe my hearing loss and I want to be as accurate as possible.
Hi Nelle💗first off at the time of writing this comment 12th sept her majesty the Queen had passed away on the 8th sept! Such a sad loss! But I did notice she had hearing aids with the thin wires in each ear! So you could be born deaf or have a hearing loss at 96! Also I hope it's going well at university for you! Now back to your latest video,I agree with every word you said! You have had around 18mths of being deaf after having normal hearing,unless your born deaf the vast majority of people lose their hearing gradually over a period of years which leads to them getting hearing aids! When people like you & I say we are profoundly deaf it goes by what the audiology chart shows! It's divided in to I do believe 4 sections on the chart & how many dB of loss without any hearing devices! (1) is mild loss (2) Is mild to moderate (3) is moderate to severe(4) is severe to profound,number (4) is us hence we are profoundly deaf! But it's a spectrum,profoundly deaf does not mean you cannot hear a sound unless your implanted in both ears & your implants are taken out! I know with you Nelle as you say there is nothing once the implant is out,I don't know if you can hear anything once the hearing aid is out? But for you in Apr 21 it was the start of a new life,part of the deaf world,you did not get the chance to slowly lose your hearing! But as soon as some non deaf people see a person with hearing devices they think you have normal hearing! Just like you have normal sight when you get glasses! I have lost nearly all my hearing this year,I have the most powerful hearing aids the NHS has! You have worked hard in almost a year to make the cochlear implant work for you,& now the mic,that's why the NHS has to change the criteria about getting implanted! It should not go by age! Under 18 you get two,over 18 you get one! Unless you have sight issues then you should get two,that's why it's so wrong that Nelle has had to start a go fund me page to raise £30000 to get her other ear implanted! For over 30 years I have had NHS hearing aids in each ear! They get changed every 3 to 5 years they must cost at least 2k each time,so surely it would be cheaper to implant her other ear than give her a hearing aid for the rest of her life unless they find a way to restore hearing in the next few years! Plus when non deaf people see a person with hearing devices they don't know how to communicate with you,plus some think because your deaf you are mentally challenged! I think BSL should be taught in all schools! Being deaf I know I struggle,hearing fatigue trying to work out what's being said! And I am sorry to say since my hearing has got worse so has my speech I have what's commonly termed a deaf accent! I now understand why a lot of deaf people are non verbal & sign as it's hard to speak! I don't know what your speech sounds like now Nelle as I can only hear an odd word & rely on captions! But I do know when I am tired or my hearing aids are out my speech is worse so I am told! Unless you can hear your own voice it's harder to talk like you did before you lost your hearing,so Nelle I hope your doing ok with your speech,before covid I used to have speech therapy which helped! Sorry for rambling again,it was the only way to get my thoughts across but as usual with too many words! My auditory processing disorder is bad tonight! So if you see a deaf person say using a mobile phone they are not faking their deafness! There are some great apps out there! Just be patient with a deaf person,talk clearly,and don't turn your back on them when speaking! And if a person does not answer you they may not be being rude but it's because they can't hear you they are deaf 💗
Hi Nelle, I’ve really been enjoying watching your videos. My baby is deaf and will hopefully be getting the cochlear implants later in the year. I was wondering if you can tell people’s voices apart with the implant, especially family members. I know you could hear before so it might be different for you than it is for my daughter but with the implant does your mum sound anything like she did before?thanks so much x
Hi Sylvie. That question is surprisingly difficult to answer. I think I definitely have some ability to tell voices apart, but not as much as someone with normal hearing. If I'm in a room with two people with very different voices and one of them starts speaking, I will usually know which one to look at. It's definitely not 100% though. I also struggle to tell voices on he TV/ radio apart from voices in real life, so if someone turns the radio on, I might think they have started talking to me when it's just the voices on the radio. I hope that makes sense from a practical standpoint. I don't know if this is something you're worried about. I just thought I would say because it was something that my mum worried about. Not being able to tell my families voices apart hasn't impacted my emotional connection to my family members at all. My biggest advice for a parent of a deaf baby getting cochlear implants would be to allow them breaks and time to adjust. I think forcing a child to wear implants all day when they don't want to will just make them have a negative association with their implants. I know the audiologists recommend that they wear the implants as much as possible, but I think it's more important that children have a positive association with wearing them. I would also recommend getting colourful stickers for them. You can buy them online or make them yourself. I think that is a really good foundation for your daughter being proud of her hearing devices and encourage her to want to wear them more. I would also suggest learning your local sign language (even if you don't think she really needs it). From what I have seen and read, learning sign language is actually beneficial for children's language development - including speech. It may also make her feel proud of being deaf and allow her access to the deaf community when she's older, if that's something she's interested in. On a practical level, it's probably a good idea to have a way to communicate with her without her processors for when she's in the bath or if she wakes up sick in the night or something. Apologies for the essay, but if I were a parent of a deaf child, I would want all the information I could get so I'm just putting it all out there. If you have any questions or anything, I would be happy to answer them to the best of my ability. Nelle :)
As Nelle said, yes this is definitely right about language development. Whether a deaf baby has cochlear implants or not (first of all, let me say that this is another issue in itself because most of the Deaf community is opposed to forcing implants on babies without letting them make their own choice) regardless it is very important that they get exposed to sign language right away. Please please please don't listen to doctors or "specialists" who say that sign language is harmful or not beneficial to your child. It is the complete opposite. It's extremely important for children to acquire a native language in their early years- otherwise this can result in your child becoming delayed/behind in many areas which will continue to impact them as they get older. The effects of language delay or language deprivation are very sad to see. Also, learning to speak for deaf people is completely optional, but nevertheless learning to sign does not impact their ability to learn to speak at all. In fact it helps, because learning to talk without learning to sign first would be like trying to learn a second language without even having a first language. Remember that a cochlear implant does not make your baby hearing. Hearing children pick up language naturally by hearing it fully, but CIs only transmit robot noise that the child can't make out (or learn to speak themselves) without long intensive therapy. By the time they would be able to actually have some understanding of the spoken language, if they were not exposed to sign language during that time, they would already be years behind on language and therefore behind on the development of basically everything else. Another thing to think about it while they are going through all that therapy, how much are they missing out on actual education or other important things? Many deaf children grow up being forced by their parents to go the "oral-only" route and later complain/feel traumatized etc from being banned from signing/Deaf schools/the Deaf community in general. I'm sure you are already since you're here, but just remember to do your research, reach out to your local Deaf community, and not just believe everything doctors tell you. I am not an expert so just that disclaimer, go talk to the Deaf community yourself and I also recommend trying to find a "Deaf mentor" so your child will have a language/culture model. (Oh yeah by the way Deaf culture is super cool!) I'm so excited for you and your happy, healthy deaf baby. 💕 ~:~
Hi Nelle, thank you an informative video. It's similar with the word blind, where the assumption is all or nothing for sight, or sound, as with you. Your patience and humour, go a long way, I'm sure. Are you at uni yet?
I'm glad you enjoyed the video. To be honest I find it quite funny when people are really shocked when I can hear stuff or start speaking. I've been at Uni for the last week so that's been pretty interesting.
My hearing loss is 60% or perhaps 🤔 65%. I was born with hearing loss in both ears 👂 👂 . I wear hearing aids 🦻 🦻 in both ears 👂 👂. Perhaps 🤔 why it happens it’s life. 👍
When you suddenly lose all of your hearing & can't hear your own voice after a while you can get what people call a deaf accent! Nelle has been deaf for 16mths so maybe her speech has changed? I cannot hear her voice now as I lost nearly all of my hearing & I am told I have a deaf accent! So maybe your right,but so far nobody else has mentioned it! I know of a lot of deaf people that have speech therapy myself included just to stay oral & make myself understood☹️
My mum said my speech sounded a bit weird in this video. According to her it doesn't sound like that all the time, just when I'm a bit tired or nervous. I was really tired when I filmed this video and had memorised the script and was trying to remember that so I wasn't really concentrating on my speech. I feel like the longer I've spent without normal hearing, the harder I have to concentrate on my speech. To be honest, it doesn't really bother me as long as it's still clear and people can understand me. Also, I film my videos just using my phone's internal microphone so the audio quality probably isn't great to start with. I have got myself a little lapel microphone so hopefully, my future videos should sound better.
Hi, It has never been 100% confirmed. However, my doctors believe that my hearing loss was likely caused by Meniere's disease because I had repeated episodes of hearing loss, tinnitus, vertigo and pressure in the ear for a year before the significant drop in my hearing. Also, I lost the low frequencies of my hearing first, which is more typical of Meniere's disease as most other conditions affect the high frequencies. The doctors have ruled out any severe underlying conditions. They have said that doing further tests wouldn't guarantee a firm diagnosis or impact my treatment in any way, so I decided not to go ahead with essentially unnecessary medical tests just to try and confirm the diagnosis. I hope this answers your question. Nelle :)
@@nellefindlay Yes, thank you. I hope there have been no further Vertigo episodes. From what I've read, once someone has a major hearing loss caused by Meniere's the Vertigo often subsides. I certainly hope this is true for you.
![Starting University with hearing loss [OC]](http://i.ytimg.com/vi/xHzDX1OToek/mqdefault.jpg)
![Starting University with hearing loss [OC]](/img/tr.png)
![I have lost my hearing (bilateral profound SSNHL)[CC]](/img/1.gif)
I am from India and get my CI next month
Love to watch your video
Good luck!
I have a cochlear implant in one ear, a paired hearing aid in the other. My implanted ear is deaf without the implant, I understand almost nothing in my hearing aid ear without the hearing aid. I describe myself as deaf without my hearing devices which is true. I do hear fairly well with both devices but not like a normal hearing person.
Great video. I identify as deaf. I have no residual hearing in one ear and a severe/profound loss in the other ear. I am in the hospital now and the board in my room has HOH in large letters on it!
I hope you're not in hospital for anything serious. It's good that the hospital have made sure that the staff know that you have hearing loss. I think the term hard of hearing vs deaf is pretty difficult because I feel that it is more connected to which stereotype you fit into more rather than your actual level of hearing (at least in most people's minds).
People think:
HoH= Wears hearing aids, speaks clearly but loudly, probably old, doesn't use sign language.
Deaf= Only signs, can't speak clearly, was born deaf, hears absolutely nothing, doesn't use hearing aids.
In reality, most people don't fit neatly into one category or the other so in my real life, I just switch between the terms. Online, I usually use deaf because that is how medical staff describe my hearing loss and I want to be as accurate as possible.
Hi Nelle💗first off at the time of writing this comment 12th sept her majesty the Queen had passed away on the 8th sept! Such a sad loss! But I did notice she had hearing aids with the thin wires in each ear! So you could be born deaf or have a hearing loss at 96! Also I hope it's going well at university for you!
Now back to your latest video,I agree with every word you said! You have had around 18mths of being deaf after having normal hearing,unless your born deaf the vast majority of people lose their hearing gradually over a period of years which leads to them getting hearing aids! When people like you & I say we are profoundly deaf it goes by what the audiology chart shows! It's divided in to I do believe 4 sections on the chart & how many dB of loss without any hearing devices! (1) is mild loss (2) Is mild to moderate (3) is moderate to severe(4) is severe to profound,number (4) is us hence we are profoundly deaf!
But it's a spectrum,profoundly deaf does not mean you cannot hear a sound unless your implanted in both ears & your implants are taken out! I know with you Nelle as you say there is nothing once the implant is out,I don't know if you can hear anything once the hearing aid is out?
But for you in Apr 21 it was the start of a new life,part of the deaf world,you did not get the chance to slowly lose your hearing! But as soon as some non deaf people see a person with hearing devices they think you have normal hearing! Just like you have normal sight when you get glasses!
I have lost nearly all my hearing this year,I have the most powerful hearing aids the NHS has! You have worked hard in almost a year to make the cochlear implant work for you,& now the mic,that's why the NHS has to change the criteria about getting implanted! It should not go by age! Under 18 you get two,over 18 you get one! Unless you have sight issues then you should get two,that's why it's so wrong that Nelle has had to start a go fund me page to raise £30000 to get her other ear implanted! For over 30 years I have had NHS hearing aids in each ear! They get changed every 3 to 5 years they must cost at least 2k each time,so surely it would be cheaper to implant her other ear than give her a hearing aid for the rest of her life unless they find a way to restore hearing in the next few years!
Plus when non deaf people see a person with hearing devices they don't know how to communicate with you,plus some think because your deaf you are mentally challenged! I think BSL should be taught in all schools!
Being deaf I know I struggle,hearing fatigue trying to work out what's being said! And I am sorry to say since my hearing has got worse so has my speech I have what's commonly termed a deaf accent! I now understand why a lot of deaf people are non verbal & sign as it's hard to speak! I don't know what your speech sounds like now Nelle as I can only hear an odd word & rely on captions! But I do know when I am tired or my hearing aids are out my speech is worse so I am told! Unless you can hear your own voice it's harder to talk like you did before you lost your hearing,so Nelle I hope your doing ok with your speech,before covid I used to have speech therapy which helped!
Sorry for rambling again,it was the only way to get my thoughts across but as usual with too many words! My auditory processing disorder is bad tonight!
So if you see a deaf person say using a mobile phone they are not faking their deafness! There are some great apps out there! Just be patient with a deaf person,talk clearly,and don't turn your back on them when speaking! And if a person does not answer you they may not be being rude but it's because they can't hear you they are deaf 💗
Hi Nelle, I’ve really been enjoying watching your videos. My baby is deaf and will hopefully be getting the cochlear implants later in the year. I was wondering if you can tell people’s voices apart with the implant, especially family members. I know you could hear before so it might be different for you than it is for my daughter but with the implant does your mum sound anything like she did before?thanks so much x
Hi Sylvie. That question is surprisingly difficult to answer. I think I definitely have some ability to tell voices apart, but not as much as someone with normal hearing. If I'm in a room with two people with very different voices and one of them starts speaking, I will usually know which one to look at. It's definitely not 100% though. I also struggle to tell voices on he TV/ radio apart from voices in real life, so if someone turns the radio on, I might think they have started talking to me when it's just the voices on the radio. I hope that makes sense from a practical standpoint.
I don't know if this is something you're worried about. I just thought I would say because it was something that my mum worried about. Not being able to tell my families voices apart hasn't impacted my emotional connection to my family members at all.
My biggest advice for a parent of a deaf baby getting cochlear implants would be to allow them breaks and time to adjust. I think forcing a child to wear implants all day when they don't want to will just make them have a negative association with their implants. I know the audiologists recommend that they wear the implants as much as possible, but I think it's more important that children have a positive association with wearing them.
I would also recommend getting colourful stickers for them. You can buy them online or make them yourself. I think that is a really good foundation for your daughter being proud of her hearing devices and encourage her to want to wear them more.
I would also suggest learning your local sign language (even if you don't think she really needs it). From what I have seen and read, learning sign language is actually beneficial for children's language development - including speech. It may also make her feel proud of being deaf and allow her access to the deaf community when she's older, if that's something she's interested in. On a practical level, it's probably a good idea to have a way to communicate with her without her processors for when she's in the bath or if she wakes up sick in the night or something.
Apologies for the essay, but if I were a parent of a deaf child, I would want all the information I could get so I'm just putting it all out there. If you have any questions or anything, I would be happy to answer them to the best of my ability.
Nelle :)
As Nelle said, yes this is definitely right about language development. Whether a deaf baby has cochlear implants or not (first of all, let me say that this is another issue in itself because most of the Deaf community is opposed to forcing implants on babies without letting them make their own choice) regardless it is very important that they get exposed to sign language right away.
Please please please don't listen to doctors or "specialists" who say that sign language is harmful or not beneficial to your child. It is the complete opposite. It's extremely important for children to acquire a native language in their early years- otherwise this can result in your child becoming delayed/behind in many areas which will continue to impact them as they get older. The effects of language delay or language deprivation are very sad to see. Also, learning to speak for deaf people is completely optional, but nevertheless learning to sign does not impact their ability to learn to speak at all. In fact it helps, because learning to talk without learning to sign first would be like trying to learn a second language without even having a first language.
Remember that a cochlear implant does not make your baby hearing. Hearing children pick up language naturally by hearing it fully, but CIs only transmit robot noise that the child can't make out (or learn to speak themselves) without long intensive therapy. By the time they would be able to actually have some understanding of the spoken language, if they were not exposed to sign language during that time, they would already be years behind on language and therefore behind on the development of basically everything else. Another thing to think about it while they are going through all that therapy, how much are they missing out on actual education or other important things?
Many deaf children grow up being forced by their parents to go the "oral-only" route and later complain/feel traumatized etc from being banned from signing/Deaf schools/the Deaf community in general. I'm sure you are already since you're here, but just remember to do your research, reach out to your local Deaf community, and not just believe everything doctors tell you. I am not an expert so just that disclaimer, go talk to the Deaf community yourself and I also recommend trying to find a "Deaf mentor" so your child will have a language/culture model. (Oh yeah by the way Deaf culture is super cool!) I'm so excited for you and your happy, healthy deaf baby. 💕
~:~
Hi Nelle, thank you an informative video. It's similar with the word blind, where the assumption is all or nothing for sight, or sound, as with you. Your patience and humour, go a long way, I'm sure. Are you at uni yet?
I'm glad you enjoyed the video. To be honest I find it quite funny when people are really shocked when I can hear stuff or start speaking.
I've been at Uni for the last week so that's been pretty interesting.
My hearing loss is 60% or perhaps 🤔 65%. I was born with hearing loss in both ears 👂 👂 . I wear hearing aids 🦻 🦻 in both ears 👂 👂. Perhaps 🤔 why it happens it’s life. 👍
Big fan from India!
Thank you :)
Hi Nelle. Are there profoundly deaf people who could not even hear a car horn just a few feet away? Thanks.
Yes, absolutely. My right ear if I don’t have my cochlear implant on is like that.
@@nellefindlay Thanks
Your speech has changed.
When you suddenly lose all of your hearing & can't hear your own voice after a while you can get what people call a deaf accent! Nelle has been deaf for 16mths so maybe her speech has changed? I cannot hear her voice now as I lost nearly all of my hearing & I am told I have a deaf accent! So maybe your right,but so far nobody else has mentioned it! I know of a lot of deaf people that have speech therapy myself included just to stay oral & make myself understood☹️
My mum said my speech sounded a bit weird in this video. According to her it doesn't sound like that all the time, just when I'm a bit tired or nervous. I was really tired when I filmed this video and had memorised the script and was trying to remember that so I wasn't really concentrating on my speech. I feel like the longer I've spent without normal hearing, the harder I have to concentrate on my speech. To be honest, it doesn't really bother me as long as it's still clear and people can understand me.
Also, I film my videos just using my phone's internal microphone so the audio quality probably isn't great to start with. I have got myself a little lapel microphone so hopefully, my future videos should sound better.
Hello Nelle, Did you ever learn the cause of your SSHL?
Hi, It has never been 100% confirmed. However, my doctors believe that my hearing loss was likely caused by Meniere's disease because I had repeated episodes of hearing loss, tinnitus, vertigo and pressure in the ear for a year before the significant drop in my hearing. Also, I lost the low frequencies of my hearing first, which is more typical of Meniere's disease as most other conditions affect the high frequencies.
The doctors have ruled out any severe underlying conditions. They have said that doing further tests wouldn't guarantee a firm diagnosis or impact my treatment in any way, so I decided not to go ahead with essentially unnecessary medical tests just to try and confirm the diagnosis.
I hope this answers your question.
Nelle :)
@@nellefindlay Yes, thank you. I hope there have been no further Vertigo episodes. From what I've read, once someone has a major hearing loss caused by Meniere's the Vertigo often subsides. I certainly hope this is true for you.