Coping with deafness

I wonder why so many people are embarrassed about hearing loss. Surely better to be able to hear and join in than just nodding and pretending you have heard.
My 9 month old DGS was born with a condition called Mycrotia ( unilateral ) which means he has a very small ear on his left hand side and no hearing in that ear. He wears a hearing band and will do so until he is old enough to have a BAHA implanted . I certainly hope he will never be embarrassed by something he has no control over.

They are used for people with profound / total hearing loss who cannot benefit from hearing aids. There are tests to find if the cochlear and auditory nerve are damaged. The op is life changing but not suitable for everyone as there are various criteria to be met first.

I think the implants are only used for a particular type, think it's helpful with conductive and not with nerve deafness.

I know someone who's son is five and quite profoundly deaf. His aids are large and have Disney characters on them. Perhaps he'll be offered the implants later or perhaps they're only suitable in certain cases.

My late mother had hearing difficulties all her life due to perforated eardrums. She twice had surgery to repair the eardrum but it was never entirely successful. She finally bought a very expensive and tiny hearing aid which did help but she would never tell anybody about her deafness. She was embarrassed and ashamed - her mother used to hide her specs as she thought they 'spoiled' her, so poor mother grew up believing anything less than perfection wasn't acceptable. How times have changed. I know a young woman who has had hearing difficulties since childhood and wore quite heavy and cumbersome aids in both ears. She often had nasty sores behind her ears and was miserable about the whole situation. Around 5 years ago she was approved for BAHA treatment and has never looked back. BAHA conducts sound through the bone behind the ear, she had two minor surgical procedures a few months apart where the base unit was implanted into the skull. After these units were firmly anchored with new bone growth the digital aids were just clipped on and fine tuned by computer. It's much like a snap fastener sort of idea and she is absolutely delighted with them. I presume this treatment is possibly only offered to younger people??

I am practically deaf in one ear and have mild hearing loss in the other. My nhs hearing aid can be a hit or a miss. It's no use in crowded places with noisy backgrounds. My local council has loaned (given) me a loop system for the TV which is quite good. I was also given a portable loop system which I take to a writers class I attend. It is the size of these small radios we used to have and a small device sits around my neck. It has made a big difference. These can also be bought online I've seen them on Amazon. I've also used the subtitles on to for a long time now as some of the background music I feel drowns out the dialogue.
I think partial deafness is the one thing that annoys people or that they feel they can laugh about, it's no laughing matter it's a struggle when you find it difficult to hear a three way conversation. I do a lot of guessing and I have to be able to see the peron's mouth when they are speaking. And yes,hearing aids can be very irritating and annoying.

Please don't shout ! Shouting is hostile, and distorts speech.
Get the deaf person’s attention before starting to speak. A tap on the shoulder so they are looking at you.
Face the deaf person.
Make sure your face is not in shadow.
Speak clearly, and slow down your speech (no gabbling!)
Don't cover your mouth with your hand.
Have a notebook handy, just in case.
Please be patient.
Never say ' it doesn't matter', if the person asks for a repeat! It does matter!

When I mentioned this thread to my DD she pointed out that it wasn't the hearing aids making things noisy and tinny and ssshhy - my hearing had deteriorated and what I am now hearing is normal!!

Just noticed that Mr Bossy iPad had changed aids to AIDS again. Sign of the times?

silverlining48 thanks for replying - glad I'm not on my own! I guess it could be an allergy, I think I'll go back to where I got them from and try again...
Talking about subtitles, it does annoy me when I stay in hotels - all the lifts and signs are in braille as well as printed to help those with sight problems, but TVs very rarely have subtitles and are often limited to the volume (quite rightly) -I'm sure there are a lot more people with hearing problems than have such severe sight problems that they require braille.

I had also asked my hairdresser to leave my hair longer over my ears (I have it very short) but I don't like it so today I decided to 'embrace' my hearing problems. Using nail varnish I've painted flowers on them (they're silver coloured). They are now a fashion statement!

I've recently started wearing NHS AIDS in both ears as I'm loosing high frequency sounds which is making my tinnitus sound a lot louder. I've always had tinnitus but it's taken until now to find out its caused by something wrong with my inner ear, possibly from birth.

Anyway, after a few false starts due to them making my ears itch, increased catarrh, small sounds like running water, air noise etc seeming too loud and very tinny, I've increased how often I wear them. I started just wearing them to watch tv so we could turn it down. And two nights ago I actually went to bed forgetting they were there! The catarrh has gone. The itching virtually so. The tinniness, I don't notice (although S's still seem ssshy). In fact when I don't have them in everything now sounds decidedly muffled. My soft spoken DH however, I still can't hear - but at least he now can't say I need my ears tested!

My DH's hearing is terrible but he is totally in denial about it. He does have an NHS hearing aid, but has refused to wear it for longer than I can remember. I have to repeat almost everything I say to him and it was nothing more than irritating until last week, when I tripped over the vacuum cleaner on the landing and fell full length landing heavily on my side. I called out to him to come and help me because I couldn't get up, but, though he was only in the kitchen at the bottom of the stairs, he didn't hear me. Fortunately, I was only shocked and bruised, and when I eventually managed to get down the stairs and tell him what happened he was, of course, mortified, but he still won't accept that his hearing is a real problem. We have discussed it at length. I feel as if I am flogging the proverbial.

I find sub titles necessary when the music is louder than the speech on some programmes

I wear NHS hearing aids and have had to go back several times because of 'whistling' Now working really well. Do others sometimes find it frustrating when the subtitles are not in time with the picture? I find I need the subtitles more and more when a regional accent is involved.

Thank you mrsmopp, wouldn't have thought about an allergy. I have already mentioned the other problems I had with them and they were adjusted but conversations were still tinny and the amplification of nearby sounds was very disconcerting. Will check it out next time. Thanks again.

Silverlining48, may I make a suggestion about your hearing aids as I have a life time of wearing them. If you are experiencing itching and irritation, it's possible you may be allergic to the ear mould material, and you could be issued with a non allergic type that might make all the difference. While you are with your audiologist, tell him about the problems you have hearing, even when wearing your hearing aids. Modern Aids are digital and can easily be adjusted in Audiology and it could make all the difference.
It does take time to become accustomed to the different tones and sounds so it's worth persevering with them. They are expensive instruments and it's a pity if you are not getting the best from them. Please give it another try.

grandmakt I have the same problem as you, particularly the itchiness and irritAtion and the amplification of distant sounds while not always helping me hear conversation when more than 2 are present. Also sound is distorted and is tinny. I tried but failed I couldn't get on with it and have not worn my hearing aid for a long time. I manage ok but struggle when others are talking nearby.
My husband wears his every day and has no problem other than professing not to hear almost everything I say and he is less patient with me if I fail to hear what he mumbles ...? My children all say I should wear my aid, and I would if I felt it helped, but I don't think it does.

DH has very bad scarring of his auditory canal on the right side (repeated childhood infections and one very traumatic syringing) and consequently there is no lumen for a hearing aid to be put into. He has had a specialist one made but he hates it and it hurts him and basically I am very frustrated with having so say everything twice if not thrice but I am trying hard to understand how much he hates it too. Our real problem I think is that he is not actually listening to me- not sure what we can do about that.

Here in Kent we have a charity called HIKent which supports people with hearing loss to get used to their hearing aids and provides other equipment such as louder telephones, doorbells with flashy lights, vibrating alarm clocks etc.

I would suggest whether you have something similar in your area that could support you both

With regards to the TV being too loud try swiching on the sub-titles. My elderly mother discovered them many years ago when they were first available and it made such a difference to the enjoment she got when viewing. This also helps when programmes have very broad regional accents.

I think loss of hearing is a bit like a mini-bereavement, you have to go through denial and anger before you finally come to acceptance and seek help. I had many years of having to repeat everything for DH, being accused of mumbling all the time, TV up uncomfortably loud, his reluctance to go to social occasions. I hated it when travelling, I would want to share experiences with him eg 'look at that bird' etc and by the time I had repeated it, the moment was past.
Eventually a combination of his children and grandchildren got to him, and he went off for a hearing check. Spent some of his savings on digital aids which fit inside the ear, the only visible bit is the fine wire, which looks just like a grey hair, running out of his ear to the tiny behind the ear controls. I can tell instantly when he has forgotten to put them in, and so can the grandchildren, who have no hesitation in reminding him.

It is a relief, because he couldn't hear what the little ones were saying, and when he was looking after them, that was a bit dangerous. It has transformed my life, I had got to the stage of ceasing to talk to him about anything but essentials because I was fed up having to repeat everything. Do ask others to explain to him the benefits of using aids, because he probably won't take it from you!

I've worn hearing aids since childhood and now have only 10% hearing left so I do understand the problems faced. I can only manage conversation on a one to one basis so if a third person joins in I cannot follow unless they are clear speakers and face me.
I wonder why there is so little sympathy for deafness and people being irritated when a deaf person is struggling to follow a conversation. Do blind people get on your nerves as well?

Although my husbands deafness meant that we couldn't do many things together such as listening to music or socialising very much we learnt to live with it and count our blessings. Two lovely children. He was always making jokes. Couldn't have a row because he would turn his aid off. We were in love til the end and I miss him so much even though it is twenty nine years since he died. Those who grumble about their husbands are lucky to still have them.
My hearing is not too good now and I have to use the subtitles when watching some dramas or films.

I have some NHS hearing aids that I got from Specsavers. I must admit I haven't persevered with them as much as I should have for 3 reasons:
1. When I wear them, people's voices sound 'tinny' and all the background noises (e.g. water in plumbing, traffic noise) seem to be amplified more than the voices.
2. After less than an hour, my ears get very itchy and irritated.
3. I am embarrassed that I need them. Even though I now wear glasses and am fine with that, for some reason, having hearing loss is less 'acceptable'. I never told my husband I had them ('luckily' he isn't very observant, so has never noticed when I have worn them).

Has anyone else had the problem of the inner ear getting irritated and would private hearing aids be better in this respect and also at amplifying speech rather than background noise?