Hearing Loss: Come introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Feb 5, 2019

Welcome to the Hearing Loss group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with hearing loss, and friends and family supporters. Whether you were born deaf or hard of hearing, experienced hearing loss after birth or with aging, it helps to connect with others. Together we can learn from each other, support one another and share stories about living with hearing loss, coping with challenges and celebrating milestones.

Let’s chat. Why not start by introducing yourself? What is your hearing loss experience? Got a question, tip or story to share?

Interested in more discussions like this? Go to the Hearing Loss Support Group.

barbb | @barbb | Jul 28, 2020

In reply to @arrowshooter "InnoCaption displays text on my cell phone. It's free!" + (show)

How well does Innocaption transcription work? I ask because while I do have a CI, with my cell I rely on texting and have not arranged for the phone function because I thought it might be ineffective for me. Even with the CI, my hearing is not great e.g. with my landline phone I am very dependent on the transcription of my Captel phone.

tonyinmi | @tonyinmi | Jul 28, 2020

In reply to @barbb "How well does Innocaption transcription work? I ask because while I do have a CI, with..." + (show)

@barbb, it costs nothing to try. I do not use it that often since both of my hearing aids stream to my phone. When I have used it, Innocaption works well.
Tony in Michigan

JK | @contentandwell | Jul 28, 2020

In reply to @julieo4 "Hello Tarheel. Welcome to this discussion group on Mayo Clinic Connect. You are typical, as far..." + (show)

@julieo4

Hello Tarheel.

Welcome to this discussion group on Mayo Clinic Connect. You are typical, as far as hearing loss is concerned as most everyone in their 70s has some degree of hearing loss. Choosing to follow through and get hearing aids makes you 'unique'. Seriously, it's unfortunate that so many who could benefit from hearing aids, do not have them. You'll find that a well fit set of hearing aids will eliminate some of that stress you mention. I'm your age, but have been using hearing aids for many years. Long enough to know how much they have improved over the last few decades. I agree with arrowshooter on checking out the HLAA website. The organization has done outstanding work to make hearing loss an issue of concern in many ways. http://www.hearingloss.org

Further, I would suggest you not make 'invisible or small' your descriptive choice. Get a pair of hearing aids that allow you to control them. A manual volume control is a must. They should include both bluetooth technology (BT), and active telecoil technology. Insist that the provider demonstrate what a telecoil can do, and don't let her tell you that it's 'old technology'. It is technology that can connect you to many things that BT cannot connect to. You want both. (Note: A telecoil adds about $25 to the cost of a hearing aid while BT adds hundreds.) Ask her to include a neckloop with your purchase. You'll be able to connect to audio devices you use regularly. Your computer, iPhone, radio, etc. BT can also do that, but the telecoil will also connect at many public venues where you want to hear to participate. Depending on where you live, you may or may not have many venues that have installed hearing loops that connect with those telecoils. It's an ongoing project. More information at http://www.hearingloop.org Hearing loops tend to be in locations where there are hard of hearing people actively advocating for them.

There are many good brands of hearing aids, but each person's hearing loss is unique, so testing and fitting are very important. If you are fit with something you don't feel is helping you enough, ask to try something different. You are entitled to a trial period. Be sure you understand how long that trial period is so you can return the hearing aids if you need to. Use that trial time in every possible setting. Also, be sure to ask for a copy of your audiogram. That is your information. Should you want or need to go to a different provider you would already have your test results. I prefer behind the ear hearing aids because they are easier to manipulate and more comfortable to wear. They are also capable of including more of the technology options you will want to have.

Hearing aids cost way too much and are rarely covered by insurance. Consequently, it pays to do some research before you make your purchase. Good that you are doing that. With proper testing, proper fitting and your desire to hear better, that stress monster will dissipate. So will the typical fatigue hard of hearing people experience when they struggle to participate in conversation; especially in noisy social settings. Good luck to you.

Jump to this post

@julie04 @tarheel I believe most states have laws that you must be given a trial period when you are purchasing hearing aids. My current hearing aids are in for refurbishing, I guess that's normal after 3 years (they're Oticon OpnS1), but I was also having an issue with one of them not being able to hold the wax guard in, it kept falling out. I thought when she looked into my ear canal there would be pile of them in there but she said there were not any. 😉 I was at my audiologist today and asking her about the latest Opn. She prefers a Phonak but said when I am ready to purchase she will order both for me so I can trial each and decide which works best for me.

I have been going to her for a long time so she knows me well enough to know that I am not about to run out on her.

At one point I went to a renowned audiologist at the Center for Hearing and Communication in NYC because my daughter was a grant-writer there and highly respected this audiologist. She wanted to prescribe Widex but when I told her that my audiologist does not work with Widex she changed to Phonak. I think all of those brands are great, along with ReSound. My daughter has ReSounds now and says they are her all time favorite HAs. It really depends on which works best for each individual.
JK

Julie, Volunteer Mentor | @julieo4 | Jul 28, 2020

In reply to @contentandwell "@julie04 @tarheel I believe most states have laws that you must be given a trial period..." + (show)

You are correct. MOST states require at least a 30 day trial period; some even 60 days. It's important to read the fine print. Some trusted providers are lenient on that and will give their patients more support than others will. I've been fortunate too, as my audiologist tried very hard to fit me with a particular brand that was compatible with my cochlear processor. We worked on that for over two months. I ended up going back to the Widex brand that was working best for me. It's definitely an individual experience. Next time I'm going to work harder to adjust to the ReSound aids as I know they have improved since my trial time. It always surprises me that there is such a difference in products, but I know our brains tend to acclimate to hearing as they are 'trained' to be, so changing can be challenging. Definitely an individual thing. The two most important pieces in the hearing aid journey are: 1. To have a provider who is willing take time to make it right for you and 2. To help ourselves by trying those new hearing instruments in every possible setting during our trial period while keeping notes about the experiences so those can be shared with the provider.

imallears | @imallears | Jul 29, 2020

In reply to @barbb "How well does Innocaption transcription work? I ask because while I do have a CI, with..." + (show)

@barbb
Hi,
I have been using Innocaption since it’s inception and I also have a Captel phone. I rely 90% on Innocaption. I find it pretty accurate. What I like about the Innocaption+ (the up to date version) is that, if there are no captioning operators available it will switch to ASR...automatic speech recognition. You also have the option to have your cell phone number automatically forwarded to the Innocaption number when the phone rings. I can hear the voice which helps when you are reading the captions. When you download it from the play store it transfers over all your contacts. It keeps logs of your conversations until you delete them..same as the Captel phone. The voices on the Innocaption are usually female. If you do download it, practice with someone until you get the hang of it. Their support system is amazing. I have a good microphone on my Samsung Galaxy which helps.

FL Mary

imallears | @imallears | Jul 29, 2020

In reply to @judyca7 "I have a Caption Call phone but I can no longer hear on that either. I..." + (show)

@judyca7
Hi,
See my response to @barbb about the Innocaption app which I use more than my Captel phone. I can’t hear on the Captel until I switch my aid to the T Coil setting and use an ear link which is plugged into the phone, over the ear . I don’t think they make these ear links anymore but a neck loop plugged into the Captel jack on the side of the phone can be used if you have a TCoil setting in your aid or CI. I don’t think the Captel was made to accommodate people with hearing loss as regards to “hearing” voices unless there is an external device plugged in...hence the jacks on the side of the phone. I have used Capion Call also but prefer Captel.
I only use the Captel if I need to look at my phone for data while I am calling someone.

FL Mary

barbb | @barbb | Jul 30, 2020

In reply to @imallears "@judyca7 Hi, See my response to @barbb about the Innocaption app which I use more than..." + (show)

Hello Judy. I am interested to learn you use IC more than your Captel phone! Are you saying you can hear better with your IC than on the Captel? Would you mind commenting on any of the challenges involved in using IC? I assume it's not perfect! Quality of transcription? Thanks!

barbb | @barbb | Jul 30, 2020

In reply to @barbb "Hello Judy. I am interested to learn you use IC more than your Captel phone! Are..." + (show)

I see I replied to this comment of yours too soon i.e. before I had read your other very informative comment in which you answered one of the questions I raised. I look forward to reading carefully your first comment (he longer one).

davekoh | @davekoh | Jul 31, 2020

In reply to @imallears "@barbb Hi, I have been using Innocaption since it’s inception and I also have a Captel..." + (show)

Hi.

I agree that Innocaption is great.

Do you by any chance also use Live Transcribe? I have loved it for a year but now am having problems with it.

tonyinmi | @tonyinmi | Jul 31, 2020

In reply to @davekoh "Hi. I agree that Innocaption is great. Do you by any chance also use Live Transcribe?..." + (show)

@davekoh, if you're starting to have problems with Live Transcribe, its probably not the app itself. The microphone on the device may be starting to fail. You may want to look into buying an external mic and try it again. Also, that app requires WiFi. Maybe the signal strength is causing a problem???
Tony in Michigan