← Return to Hearing Loss: Come introduce yourself and connect with others

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Profile picture for Julie, Volunteer Mentor @julieo4

@marem60 I fully understand your thoughts and comments. Hearing loss is invisible. It also creates difficulties with communication. Communication is key to relationships.

I learned more from involvement in the Hearing Loss Assn. of America (HLAA) than anywhere else. That learning came from meeting other people who fully understood what it was like to deal with this invisible disability; on the job, in relationships, and in life in general. It helps greatly to have your feelings of fear, frustration and fatigue validated.

You might want to see if there is a chapter of HLAA in your area. They start because people with hearing loss come together to talk and learn. http://www.hearingloss.org/chapters I have met so many people through HLAA involvement. Many have been research subjects in medicine and technology development. I hope you will share your experience with the bone anchored hearing aid. I know they have been extremely helpful to many. Also that some have not had such positive results.

The same goes for cochlear implants. The large majority of recipients have had positive life changing results. Cochlear implants are now being done for many people with single sided deafness. Should your BAHA not so as well as you hope it will, a CI may be another option down the road.

The best news is that research on hearing loss is being done now, when only a few decades ago very little was being done. HLAA was founded in 1979 and has pushed for research and development. Hearing aids have come a long way since advocacy started. Implantable devices were unheard of then. Many of the test subjects in early trials were encouraged to participate by HLAA.

As someone with bilateral progressive sensorineural hearing loss, I feel fortunate to benefit from things I was told would never happen in my lifetime. I use both a hearing aid and a cochlear implant. It has been a remarkable positive change from earlier days.

Good luck with the BAHA.

Julieo4, Hearing Loss Mentor

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Replies to "@marem60 I fully understand your thoughts and comments. Hearing loss is invisible. It also creates difficulties..."

@julieo4 Thanks to you and all the members of the hearing aid group, I am very happy with my new hearing aids. I first found this group several months ago when I was down to one outgrown OTC hearing aid (had 2 but lost one). I started with an audiologist at the major hospital where all my doctors are. My suspicions were verified that I had outgrown the OTCs and needed to satisfy my severe hearing loss. That didn't help me dole out a big chunk of my SS income. I first wrote to the group asking about non-profits that contribute refurbished hearing aids. That mainly verified some of the non-profits I had already found. I voice mailed a few
but only heard back from one. With my granddaughter's wedding coming up that didn't help my patience level. I turned to family and my daughter loaned me enough to go to Costco. A local audiologist had recommended the Philips Hearlink 9050 MiniRite at Costco. My research indicated these were almost identical to Intent by Opticon. Same manufacturer, same features. $1595 plus Costco membership. I have had them for more than a month and am thrilled!
Thanks again to Connect.Mayoclinic.org. @jutkele