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Deafness and hearing loss > Where is emotional support for those facing deafness?

#1 Posted : Tuesday, June 04, 2013 12:49:13 PM
Rank: Newbie

Joined: 6/4/2013
Posts: 1
I have Idiopathic Sudden Sensoryneural Hearing Loss (ISSNHL.)

My left ear is considered profoundly deaf and my right ear has several frequencies that are simply non-functional.

That leaves a few frequencies in my right ear that are functional but have declined due to typical age related conditions but, more significantly, have suffered a lot of damage from being a drummer in a rock band in my youth.

State of the art hearing aids do not compensate for the above condition very well at all. And, I do not qualify, yet, for a cochlear implant.

The ISSNHL part of the conditions above emerged over the past five years but has accelerated over the past two years. And, frequencies vanish within a 72 hour period or less (hence, ‘Sudden’ in ISSHNL.) There is no telling how much more or when more frequencies will become non-functional.

I am 69, very healthy, otherwise, and have been very social, with a healthy sense of humor, in the past.

I am now frustrated, isolated, depressed without a clue what to do with my retirement. (Please, only thoughtful suggestions … I have heard all the rest.) I can hear slightly and that is, ironically, the bad part because, if I hear anything, people assume I can hear everything. Besides, people cannot ‘see’ my hearing loss. I look normal.

I am looking for emotional support more than ‘guidance’. I have done a lot of Web searching and have found very few decent forums that focus on the emotional experience of going deaf. And, having been in the software development business for 40+ years, I know my way around the Internet. I believe that, if I were more positive through support and communication with those of similar experiences, etc., I could probably figure out what to do. Right now my drug of choice is sleep.

So, I am looking for people who have had or are having a similar experience as mine
#2 Posted : Tuesday, June 04, 2013 7:28:14 PM
Rank: Senior Member

Joined: 6/24/2011
Posts: 424
An appointment with the Hearing Therapist at your local hospital would be a good place to start. Some of these folks are really fantastic and have an enormous amount of understanding of the effects of hearing loss. (Apologies if you've already explore that route).

#3 Posted : Wednesday, June 05, 2013 7:36:24 AM
Rank: Senior Member

Joined: 6/1/2013
Posts: 445
My friend found the hearing therapist very good when she became profoundly deaf in her 30s. The therapist then gave her good info about other services as well.
Currently wearing Phonak Sky Q70 UPs
Emma (Helpline Officer)
#4 Posted : Wednesday, June 05, 2013 9:53:42 AM
Rank: Senior Member

Joined: 6/17/2011
Posts: 551
Hi Bill

Thanks for your post – my name is Emma and I work on the Helpline here at Action on Hearing Loss.

I’m sorry to read how you are feeling at the moment. Losing your hearing can be a traumatic experience, particularly if the loss is severe. Hearing loss can leave you with a very different experience of the world, which can be bewildering and frightening and people do find it difficult to come to terms with the fact that the loss is permanent. This is a normal reaction to a loss of any kind.

You may find visiting a local hard of hearing group comforting where you can be around others in the same situation as you. If you would like me to try and find you a local group please let me know where you live in the UK.

You will feel better in time and I’m sure you will receive a huge amount of support from the forum community.

I look forward to your reply.

Kind regards
#5 Posted : Thursday, June 06, 2013 5:24:43 PM
Rank: Junior Member

Joined: 7/19/2012
Posts: 34
Hi Bill, I am fairly new to hearing loss myself and have only bilateral mild to moderate hearing loss so I probably don't understand all of the implications of your condition but I do definitely understand the desire for emotional support. I faced, and still face a number of issues that made my diagnosis of hearing loss very frightening and at the time I was fitted with hearing aids I knew no-one who was either deaf or hard of hearing and no-one at the hospital at that point had made any suggestions as to what help was available or how to access it. I searched on the internet to see what help I could find and the one thing that I would really suggest you do is contact an organisation called Hearing Link and click on their Suppport page. They offer a number of alternatives, one of which is connecting you with a Community Support Volunteer. This may be a person to person contact or an email connection depending on where you are in the country. As I understand it all of their volunteers either experience hearing loss themselves or are closely connected to someone who does so they completely understand where you are coming from. I contacted them very soon after my original diagnosis when I was at complete rock botom and in a state of fear and despair. They responded immediately and after a short time they were able to put me in touch with a community support volunteer who I communicate with by email. It is a fantastic relationship. She is able to offer me whatever emotional support I need, whenever I need it, as well as all sorts of practical advice and help and I hope to actually be able to meet up with her soon. She has made the world of difference to my ability to cope with my situation now as well as giving me the hope that I will be able to cope with things if they change.

The other thing that has made a big difference to me has been joining the local lip reading class. I don't know how proficient a lip reader I will ever become but just being with a group of people who all understand the challenges we face and can advise and more importantly laugh about them is a real tonic. Before I retired I really used to look forward to holidays but now I am quite sad as it means the class gets suspended and I really miss it.

Wishing you all the best

#6 Posted : Thursday, August 15, 2013 5:37:52 PM
Rank: Newbie

Joined: 4/19/2012
Posts: 4
Hi BillBowles 1

I am catching up with your news and take on board the fact that you are looking for emotional support. I realise that your drug of choice is sleep and I am hoping that you are now feeling a bit better.

Because you are close to my age group I would like to say that I do not necessarily favour the choice of cochlear implant. I think that it is a drastic solution. You will not be able to hear as you used to but could you become familiarised with your present hearing loss? If you are faced with someone with a good diction and slightly higher and constant pitch, can you hear? A sort of monotonous type of voice. Someone who would make the effort for you. Any hope?

When I lose more of my hearing (but get it back) I change into a totally different person, so I hate to imagine what you must be going through.

We need your sense of humour at the Forum. Can you share it? You are still a social animal. It is like being a catholic, "once a catholic always a catholic". Can you cope on a one to one? Can you cope with three (known to you) people?

Since this forum, have your made contact with anyone worth your while? I know these people are like gold dust, but still.

If I trust someone I say: " I need short sentences" or "I cannot hear the negative form" - would that be a start?

Incidentally, I have read "Deaf Sentence" by David Lodge which is a book which explains my level of hearing loss. It may not be yours, but it is a start.

Retirement is tricky. I see life as a learning process and retirement is part of it. What do you think you would like to explore? Are you ok with music? Have you noticed that it is possible to hear original sounds from You Tube. If you cannot hear music any more, then I can only apologise for this suggestion.

As for hearing therapists' support - I am of the opinion that it is a hit and miss affair.

I shall try to get in touch with Hearing Link myself. As for lip-reading classes - I still need the sound, the face and the eyes. Have you tried? I am hoping that you will be able to hear the attendees.

This forum is very mixed so I am hoping that you will stay in touch.

From one "69 years old" to another.

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