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@bdzwahlen

Hi Rosemary, I noticed that you are a volunteer mentor. Please tell me more about what you do as a Mentor. Since I retired 5 years ago I repurposed myself to be a Hearlng Well Advocate . I am also an HLAA N-CHATT Trainer. N-CHATT is a Network of Consumer Hearing Assistive Technology Trainers. The HLAA N-CHATT volunteer program is a partnership with Gallaudet University and the American Institutes for Research. It is being implemented under the Gallaudet-led Deaf/Hard of Hearing Technology Rehabilitation Engineering Research Center (RERC), which is supported by a grant from the U.S. Department of Health and Human Services, National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR).

I help educate the public, friends, family, and speak at conferences to professionals and students of audiology. I never had support in my life and know how difficult it is to get the support you need. I pretty much self-educated myself. I have progressive hearing loss and have used hearing aids for over 40 years. It was only recently that hearing technology has caught up with my hearing needs. I had no support thru my entire education thru college so can really relate to those with hearing loss. I also worked in many challenging environments. I hear normally below 500 Hz with an extreme steep slope loss to 120 db on the left and 110 on the right. I will be having cochlear implant surgery on the left in June with an AB Slim–J which is the most appropriate for preserving low frequency hearing. I will also use the AB Naida Link Bimodal external components.

Back to the topic, Medical Care is very problematic for those with hearing loss. I very much self advocate and encourage others to do as well. Many health professionals mumble, look down, or don't face the patient when speaking. The general medical profession has little education regarding hearing health and hearing loss. I hope that changes soon as it's a major medical issue with many implications if not treated. It's great that many offices now give you a paper copy with appointments and followup instructions. I also ask medical professionals to write information down. I get a copy of all medical tests, MRIs, films, etc. and maintain my own medical records. I also use all the online medial websites to communicate with my care givers, request refills, make appointments, etc., and for them to have my medical history. My medical summary is a much quicker way to bring new doctors up to speed but they also have access to most of my recent medical history online as well.

Another good topic is how to communicate when you are in the hospital and what are hospitals doing to help those with hearing loss. I am lucky that my husband helps me. Hospitals in general need to be more proactive in educating patients with hearing loss so we know what both the patient and hospital can do to reduce the stress related with not hearing or understanding what is being said.

Ok, it's time to get off my soapbox! We have many, many opportunities to help those with hearing loss maximize their hearing lifestyle!

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Replies to "Hi Rosemary, I noticed that you are a volunteer mentor. Please tell me more about what..."

@bdzwahlen, Please - No apology! I want to extend my thanks and appreciation to you for what you are doing. No one should have to go thru life feeling that they have no support! I think that what you are doing with your retirement is amazing - doctors and patients, and even the general hearing public need continuing education about living with hearing loss.
I live in Danville, Kentucky - Home of the Kentucky School for the Deaf. So I know first hand the barrier that can exist between the hearing and non hearing population.

Yes, I am a volunteer mentor and I am happy to share more about what the Mentor do. I think that the most complete way is to share the Mayo Connect Pages>About Connect: Who, What & Why. I invite you to read about the role of Volunteer Mentors https://connect.mayoclinic.org/page/about-connect/
-You can also scroll thru the Newsfeed where you can read some of our stories. I'm in there, too!
A Passion for Transplant Patients: Meet @rosemarya
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/a-passion-for-transplant-patients-meet-rosemarya-1/
-This is why I became a Mentor -
Meet Rosemary: Transplant Recipient and Mentor
https://connect.mayoclinic.org/page/transplant/newsfeed-post/meet-rosemary-transplant-recipient-and-mentor/

@bdzwahlen Beverly, I applaud you for learning to advocate for yourself with the hearing disability that you have, and your willingness to share what you've learned with others. So many of us walk alone through our health challenges and have to learn to advocate for ourselves. That is the reward of the effort we make. I hope your upcoming implant surgery makes a big difference in your life. I've been taking my elderly mom for hearing aid appointments recently and she has some profound loss too. I'm so glad you found a purpose in your life from your experience. I kind of feel that way too about my experiences as a surgical patient and that's why I joined Connect.