For Those of us who are Deaf or Hard of Hearing Part 2

[Violinist64]

The original thread is almost full and I have found it extremely helpful so have started this new thread.

@MontyDonsBlueScarf and @PotOfTulips thank you for your kind words and insiders' knowledge. I think l am still in a state of shock because of how much my hearing has deteriorated in a short space of time and, l suppose, I am mourning the loss and coming to terms with it. Obviously, in real life I am doing what I have done all my life and that is to Get On With It, because that is all I can do. It is also the fact that I am sixty and the potential for losing more and more hearing over the next twenty plus years, or however long l live, is daunting. However, as a Christian, I believe that God is in charge and that there will always be help for me. Like you, @MontyDonsBlueScarf, I have a fairly unusual type of hearing loss and l am pleased that the conductive element will finally be addressed. I have to say the the National Deaf Children's Society is now my favourite charity, especially as they do a lot of work in mainstream schools to promote understanding and support. It was only founded in 2010. I was a deaf child because of my mastoid problems but in the seventies one sided deafness was not considered a disability as it was assumed that the other ear would compensate and hearing aids were not advisable for mastoid patients. Get On With It was the order of the day so Get On With It l did. There was no other option and at least I developed resilience and determination. I also learned to lipread by default. Despite this, I think a bit of support would not have gone amiss.

I went to the theatre yesterday
But it didn't sound any different when I switched it to the t link 😞

@purpleme12 I don't have a T link program because my audiologist says that venues don't usually set the system up properly, or if they do, you have to be sitting in very specific places to use it. I would have expected the sound to stream directly to your ears so you should have noticed a difference, even if the quality was no better. Perhaps my audiologist is right and it's them, not you.

I think you might be right
I guess it makes sense what your audiologist says because most of the places (eg counters at shops etc) don't work when I switch it, no. But on the odd occasion I've switched it on and it's worked it makes the world of difference to me and I actually love it.
So it makes me a bit sad actually.
Unless I did need to be sat in a specific place which might be the case. Maybe I'll email them to check actually

But I do love the T link when I'm able to use it

Good idea to check. Perhaps book by phone in future? When my DH was ill I found our local theatre was great at suggesting seating that met his needs. I did have to ring and ask for the accessibility team though, nothing showed up online.

I did ring them and mentioned about if it had T link. She didn't mention anything about sitting anywhere in particular. And I didn't ask myself because I didn't think till you said actually. Maybe I also have to ask for the accessibility person as well?

Will perhaps be more probing next time actually!

If I'm honest I missed a lot of what was said
Which is a bit sad really isn't it
I think sometimes I think my hearing is better than it actually is and then you go to the theatre and miss a load of it and it makes you think

I am loving my new aids, which I received on Thursday afternoon. I am hearing sounds l had either forgotten or didn't know existed. I am particularly enjoying the music element as, particularly the lower sounds that have been missing for years. I am getting the full benefit of the harmonies, which I have been missing for a very long time. I was awarded my music degree in 1986 but, because of the one sided deafness I then had, I suspect l have always heard a much "flatter" sound. Ithink l am hearing in stereo for the first time in my life and I am loving it. I have always loved music. I am now more determined than ever to take my diplomas on the piano and viola. Realistically, despite these wonderful hearing aids (which cost an arm and a leg), l only have a finite time in which to do so as my residual hearing will deteriorate further and I already have a moderate loss in the right ear and a moderate to severe loss in the left. I have a fairly unusual type of hearing loss as it a mixed loss of both conductive and sensioneural hearing, which is being properly corrected for the first time ever. I also have both high and low frequency hearing loss with the middle range being less affected. My audiogram looks something like a hill.

Excellent news, @Violinist64
Would you mind sharing what sort of aids you have?
I am currently trialling Oticon Intent and initial views are that they are great for speech clarity but less so for music. My audio gram seems the opposite to yours, it has a big dip in the middle

They are Phonak Sphere i90. If you can hear better at the high and low frequencies, it might not make such a difference. Your problem is more with speech, l would imagine, as it is the middle frequencies that are your biggest problem. I understand that you have what is called a cookie bite loss whereas mine is a reverse cookie bite loss. It's actually very interesting, l think. It's a shame that we have to live with the effects, though.

Sounds like life has improved with them @Violinist64 where did you get them from if you don’t mind me asking?
I’m really struggling with my hearing. I have Bluetooth Oticon NHS hearing aids. However, because I have lost the high frequencies and not the low ones, it just amplifies everything really, which does help somewhat of course but I really struggle with speech. The audiologists just say oh well it’s difficult to correct your particular type of loss.
I feel very down about it and isolated. It puts me off any kind of social gathering 😕 well anywhere where there is background noise, I even have problems with just one person sometimes.

I bought mine from a company called Healthy Hearing. They are a small company with a handful of branches, mainly in the East Midlands, but there are also a couple of branches in the south. My new aids are making a tremendous difference, partly because, for the first time, the conductive element of my hearing loss has been addressed. As your type of hearing loss is the most common, it is terrible that you are being fobbed off. I was told that many people start out with NHS aids and, while they certainly do a good job at a fairly basic level, expensive private aids are the only way to have them tailor-made for your particular needs. Even then, no hearing aids can ever perfectly replicate normal hearing but they can be much better than you are presently experiencing.

Thanks @Violinist64 there are none in the North West sadly.
Yes I do feel very fobbed off! They also sometimes speak to me as if I’m stupid.
I don’t mind looking at costs if it will actually make a difference. The NHS audiologists always claim that it won’t but I think it may be time to trial some.
I know it will never be ‘normal’ hearing but any improvement would be wonderful as this is a stressful way to live. That makes me sound dramatic doesn’t it but I’m finding it harder as I’m getting older and probably worse.

Hi @Polgara2 I have been having similar problems with speech, e.g. in a pub /cafe / restaurant - I don't mean hugely busy, noisy places but fairly quiet smaller places. The frequency of normal speech seems to be difficult for me to hear against any background noise or reflected noise from hard walls / surfaces / floors. It is much easier in places with soft furnishings (e.g. at home- carpets, curtains etc)

I found the NHS said that they could not do anything further for me - and this has led me to trial some private hearing aids (provider is Hidden Hearing). I'm not yet sure if it's worth the money to me, or not - I'm on a 2 month trial and it's early on - but I thought I would give this a go as I was becoming increasingly frustrated with not being able to hear properly / take part in conversations and in general, this led to me feeling I didn't want to go out to places where hearing would be hard work and an uphill struggle.

Best wishes if you decide to trial any private options.

@Polgara2. Please give it a go if you can afford it. You may well have some independent hearing specialists nearby. If not, some of the chains are excellent. Do you know anyone locally who has private hearing aids and is happy with them? If so, you could ask them where they bought them. It is so frustrating, isn’t it? It is only now that I have these new aids that l realise how much I have been struggling with inadequate aids for a very long time.

I got some hearing aids privately that cost around £3000 but didnt get on with them and am now trialling Signia in the ear which I need as the over the ear ones that I had from NHS kept falling off.

I am not getting on with the trial ones either as speech is not clear, just louder and i just need more clarity and am already on the highest volume. It seems I would like blue tooth and rechargeable and both the two i have tried had this but anything else they offer is either or. I suppose i would prefer to have rechargeable over bluetooth as long as I have the clarity but feeling frustrated that after spending so much I am still not happy.

I am going back to the hearing centre this week to see what else they have to offer.

Having worn hearing aids for past 60 years plus (have high frequency and later in life loss frequency loss and am profoundly deaf,,.) I am saddened that audiologists arent explaining that hearing aids dont work like glasses which do restore sight - hearing aids cannot restore hearing to areas where there is no hearing. Delighted for the musicians who have had such success with their aids. I was offered a cochlear implant - but told still wouldnt be able to hear in crowded areas so said thank you but no since that is the place where hearing becomes impossible. Lip reading classes have helped - but you can still only read 40% of what is said! being deaf is hard work!

Place marking

@PotOfTulipsyes that’s exactly it. It’s so frustrating and isolating. I hadn’t thought about the hard vs soft difference though so I shall investigate!

@Violinist64no I don’t know any other hard of hearing people but I am going to investigate my options. I’ll go back to nhs first and then look at private. I did try amplifon once but the only advantage they provided at the time was rechargeable batteries, my hearing seemed no different but that was as a while ago. Ironically I need my hearing to get worse to be corrected better sigh.

@repeatpleaseagain I want to look into lip reading classes, where did you do yours? I do try to do this more but I suspect some pointers would help! Even 40% is a help.
The audiologists have always pointed out that fact but it’s about finding how to get the most out of what you do have, which is failing currently i think.

I was very lucky - live in London so could do them at City Lit. Cant recommend them enough. AAnd it means all your class mates are deaf - so you realise how wonderful we are and how hard we work to cope! I also did an online lip reading class frm pure interest - will look for link and see if it lets me add it later

Lip reading - In case useful, have a look at this (from Hearing Dogs) https://www.hearinglink.org/living/lipreading-communicating/how-to-lipread/

I attended a hearing information day held in the Hearing Dogs organisation - they have a cafe as in the link I put below, and one of the most interesting things for me was that they have installed "sound clouds" on the ceiling which seem to soak up noise, making it far easier to manage. It was a nice cafe too ! (Buckinghamshire)
https://www.thegrangesaunderton.org.uk/welcome/

I lip read. I learned as a toddler so don’t even realise I do it. It was when I first got glasses in my 20’s I realised I couldn’t hear without my glasses on!

I can lip read accents which I find interesting.

in recent years my biggest issue is lip filler and Botox. It changes the natural face movements and “blurs” things. Weird experience about 10 years ago when I was talking to a school mum and took me a while staring at her before I realised why I couldn’t “hear” her properly…