Thread for those of us that are deaf/hard of hearing?

[flamingo40]

I've looked through the health topics and can't find any particular areas for those of us who are deaf or hard of hearing to turn to if we are after advice or just fancy a chat with people who are in the same situation?
I guess I'm asking firstly if I'm missing something or secondly if there isn't an area we can go to would this be something Mumsnet would think about adding?

Having been hard of hearing for years and now a permanent hearing aid wearer I'd love you get help and advice and talk about experiences to other people

@MillieMumsnet Won't it disappear from Chat in 30 days? Perhaps General Health? There are other very long running threads in there on special subjects - for example the cancer thread has been going for years.

Hello! I have a profoundly deaf son. I looked on the SEN boards here when he was getting ready to start school but couldn't see any discussion about deaf kids. It frustrates me a bit that people think SEN = autism/ADHD and they don't realise deaf falls under that category too and has a huge influence on his behavior.

Anyway no frustration or hearing fatigue for him this morning - he's having a chilled out morning watching telly with his CIs off

I posted my background above.
Thanks to the audiologist who posted! Very useful, the website for connevans looks good. I have often bought spare bits online and there are some very dodgy sites.

I notice several people who lost hearing through childhood measles.

Seems to be a disparity over what is available on the NHS. I just checked and I got mine a year ago. There is no follow up, you are advised to contact them for a review after 5 years.

I was in hospital recently and it was extremely difficult to hear the staff in full PPE even though I had my hearing aids. An illustration of how we all lip read to some extent without realising.

I’m hard of hearing - deaf in one ear and deteriorating hearing in the other. I have Bluetooth hearing aids!

Someone ranted about people doing the ‘pardon’ joke - I swear I may punch the next person to say that to me! I’ve started to point out that they’re making fun of my disability.

At mine they say they recommend a hearing test every 3 years but I had to actually ask that,no one would have told me when I should next come back.
Whenever you need one you have to go to the GP for them to refer you for a test again even though you're in the outpatient system. So you have to explain to the GP I'm just calling cos I wear hearing aids and I just need you to refer me for a routine hearing test.
Strange way of doing it if you ask me

My deafness was cured by a double stapedectomy so jumping on in case anyone has any questions

I just rang audiology for my repeat test

Hi all, interesting thread to read through. My DM is in her late 50s and I’m concerned she’s becoming slightly hard of hearing. When we’re out together I’ve noticed she sometimes mishears what people say/ ask her. She still works full time and is great at her job, but I wonder how much conversation she misunderstands when she’s alone. It’s not that she doesn’t hear people talking to her, it’s that she doesn’t always hear what they’ve said properly. Does that sound how hearing loss can begin?

We have a great relationship so I’ve been able to talk to her about it, she’s adamant she wouldn’t want to wear hearing aids so doesn’t see the point in getting a test.

@themuttsnutts

I just rang audiology for my repeat test

Must with differently depending on where you live Unless they've updated it since last time. It would be good if they had!

@CausingChaos2

Hi all, interesting thread to read through. My DM is in her late 50s and I’m concerned she’s becoming slightly hard of hearing. When we’re out together I’ve noticed she sometimes mishears what people say/ ask her. She still works full time and is great at her job, but I wonder how much conversation she misunderstands when she’s alone. It’s not that she doesn’t hear people talking to her, it’s that she doesn’t always hear what they’ve said properly. Does that sound how hearing loss can begin?

We have a great relationship so I’ve been able to talk to her about it, she’s adamant she wouldn’t want to wear hearing aids so doesn’t see the point in getting a test.

Yes that's different how hearing loss is

It first when I first got them I didn't wear them all the time. But in the end I realised they did make a difference lol
Now if I don't have one or both in I really feel like I've lost my confidence

I'm so glad I started this post!
Let's hope Mumsnet give us our own area soon. It would benefit so many of us

No one wants to wear hearing aids but, in the end, being deaf was more embarrassing

I praised lip reading classes - I did two courses at City Lit which has a special Deaf education department. Looking at their web site (sorry cant cut and paste link - Google away) I see they now offer the courses on line - hooray. The teacher also told us that if you send a printout of your audiogram to your local council you may get free disabled travel pass. I did that and got free travel. Doing the class was so wonderful because you met other D/deaf people and had a laugh at our shared experiences!

@CausingChaos2 that sounds like me. Ive always known my hearing wasn't perfect but around 2 years ago, age 61, it did seem to get worse.
I went to Boots for a free test and they confirmed I had moderate hearing loss and would benefit from hearing aids (would cost about £3k). I said I'd think about it. I really didn't want to wear them so plodded on for another year. Then decided to try the NHS route to try some free ones before investing a lot of money.

Not only are they perfectly fine, they are virtually invisible. Your mum could always try them and just wear when in company?

Thanks @repeatplease. Will take a look

This is a really good idea for a thread/section.

I lost 80% of the hearing in my right ear 20 years ago. It happened all of a sudden and no explanation was ever found. The tinnitus is excruciating.

I've never found an aid that helps and tend to just struggle on. But it can be hard with my job (PR) sometimes as it's just all about communication. Working from home with a headset on has been a blessing and I'm dreading having to go out and about again.

DH and I had a deal that I could give up work when he reached a certain wage and he's gloriously close!!

Hello all. Mine is a strange story of what can happen to a child of the early 1960s born in a backwater to parents in denial.

No-one picked up that I was completely deaf in my left ear (it's what's known as a 'dead' ear.) I also have severe tinnitus in my right ear and some high frequency hearing loss.

I told my parents when I was about 7 or 8. They were embarrassed by it, I could tell, and various doctors couldn't find the cause or fix it, so it was just left. By this time I was unconsciously teaching myself to lipread and compensate in other ways.

I wasn't offered any support at all, ever, by anyone.

Just before the pandemic I finally built myself up, at the age of 58, to ask my GP for an audiology referral. I qualify apparently for either CROS aids or BAHA implant aids. I cried in front of the audiologist! Very emotional.

Unfortunately the detailed fitting appointments haven't happened yet because of Covid. Meanwhile, I also struggle to understand people wearing masks, as I felt on lip reading so much and they sound so muffled.

I got 0 points on a PIP assessment in the descriptor for communication/hearing because the assessor said I 'managed well'! Crazy.

Does anyone use the BAHA? Is it better than normal aids and can you use it with hearing in one ear that's good enough to be useful?

Brilliantly useful thread for me too. I'm in same situation as Mossy bottom up thread was - have to accept my hearing loss is impacting my life too much now, have stopped meeting up with one set of friends as we always meet in a group and I know I'm just nodding along when I haven't really heard what's been said. It's embarrassing and isolating. I'm about to ask for an NHS appointment to see what HAs are like, without the huge expense of private ones. Would love to know what ones Mossy bottom has?

I'd love to hear BAHA experiences, too. I've been approved but not fitted, and tbh I'm anxious.

(BAHA = bone anchored hearing aid system).

A very interesting thread. Aged 4, my son’s hearing was above 50 in one ear and about 20 in the other. Grommets helped a bit but he’s been in complete denial since. He always “failed” hearing tests but asked to be discharged as a teenager because he was fed up of being tested every 6 months.

He’s 20 and for several years has only been able to follow one conversation at a time (can’t hear if any background noise). He’s really against another test or hearing aids because of his job, mainly in water!

Great thread! Thanks for starting

@lostandfoundit. I have phonak nathos auto micro. Pretty basic, come in different colours but unobtrusive.
The advantages- I can hear tv without subtitles.
I can hear my sons without constantly asking for repetition.
I can choose to wear one or both or none.

Disadvantages
I haven't mastered using them on the phone
Cleaning them.
Itchy ears
I still can't hear DH when he talks to me from another room

I feel so much better having subtitles on the tele now
I do that on my tele
But others don't tend to do that. I haven't watched tele at someone else's house since before covid so we'll see about that! 😂