Member Spotlights feature interviews with fellow Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.
TERESA: What brought you to Mayo Clinic Connect? What motivates you to take part in the community?
@julieo4: I came to Mayo Clinic Connect after the Hearing Loss Association of America (HLAA) notified its membership that HLAA had collaborated with Mayo Clinic and the IDA Institute to create an online support group for people with hearing loss.
I have been active in HLAA since 1983, and was elected to the organization’s first elected board of trustees in 1984. I served for 14 years; which included 2 terms as president. I’ve remained actively involved in the organization at the national, state and local levels for over 37 years. I felt that my experience and knowledge could be helpful for people in Mayo Clinic Connect’s hearing loss support group.
My involvement in HLAA, which was SHHH when I discovered it (Self Help for Hard of Hearing People, Inc.), gave me back my life. I learned I wasn’t alone with my hearing loss. Until I discovered this organization and became involved, I thought I was the only person under age 65 who was living with progressive adult onset hearing loss. I was diagnosed with progressive bilateral sensorineural hearing loss at age 21. I was told then that there would never be a cure or treatment in my lifetime that would change the outcome of my becoming deaf in my 40s. I was told to learn to live with it. I learned about SHHH/HLAA when I was 40. I had retired from a teaching job I loved, and was resigned to becoming a recluse. I do wonder how I found the courage to become involved in SHHH because it meant exposing my hearing loss publicly. It was the best thing that could have happened to me. It gave me purpose. My motivation to become involved in Connect relates to my understanding of the value and importance of peer support.
My involvement in SHHH/HLAA also gave me the opportunity to witness progress in the fields of hearing technology and medicine. I learned to embrace technology that goes beyond hearing aids. I learned how to advocate for myself. I watched the development of cochlear implants and saw analog hearing instruments become digital devices with many enhancements. Today I use both a hearing instrument and a cochlear implant. They work remarkably well together. Had I not watched other people go the cochlear implant route, I doubt I would have done so. Yet, it was the best decision I could have made to help myself hear. My audiology test results show that I went from 30% understanding with only hearing instruments to 95% understanding when using both technologies together in a quiet setting. Noisy settings can be remedied with technology.
TERESA: What motivates you to take part in the community?
@julieo4: I’m comfortable sharing my experiences on Connect, because I know they may be helpful to others. I hope to encourage people. My involvement in HLAA gave me the courage and confidence to complete a master’s degree in my early 50s. I learned ‘I could’ rather than being stuck in an ‘I can’t mode’ for the rest
of my life. I want to point out that other people with hearing loss were my motivators. The hearing healthcare professionals, while being kind, empathetic, and professional, put no value on peer support. Nor did they share information about hearing assistive technology beyond basic hearing aids.
TERESA: What groups do you participate in?
@julieo4: I have chosen to participate in the Hearing Loss group on Connect. I observe the Ear, Nose & Throat (ENT) group. I think it’s important that people who come to Connect understand that peer support is different from medical advice. While we can share what has worked for us, we should refrain from trying to give medical advice.
TERESA: Tell us about a meaningful moment on Connect.
@julieo4: Several moments on Connect have been meaningful to me. There are many myths about hearing loss and a lot of misinformation. Many hard of hearing people have been told by people they trust that nothing can be done to help them. There is confusion about the difference between being hard of hearing (partially deaf) and being culturally Deaf. I enjoy helping dispel those myths and confusions when I can.
TERESA: What surprised you the most about Connect?
@julieo4: Mayo Clinic Connect is about peer support. I really have no surprises about it. I know what peer support can do for someone who is confused or misinformed about a health issue or disability. It’s pretty much what I expected it to be: supportive and informative.
TERESA: What energizes you, or how do you find balance in your life?
@julieo4: I’m energized by many things, including my daughter and my grandchildren, who are all of college age as I write this. I enjoy writing, reading, traveling and socializing. I play bridge. I’ve always been athletic and have enjoyed many years of golf, tennis, fishing, etc. I knit and sew and enjoy a variety of crafts when I have time. My two granddaughters are thespians and singers. I LOVE watching them perform.
Generally, I like people. Hearing loss makes socializing in some settings difficult. However, I have embraced the use of assistive technology for communication access, and work very hard to remain social. I am also energized by educating and advocating for people with hearing loss. I have been doing presentations and in service training on hearing loss for groups who want and need more information for years.
TERESA: Tell us about your favorite pastime or activity.
@julieo4: I guess at this age; I just had my 78th birthday, my favorite times are those when I can enjoy family. Right now with COVID-19, things are different. Learning how to use video conferencing has been enlightening. Once upon a time we dreamed about speech to text technology. Now it’s here! I look forward to the time when my husband and I can do more with friends and family. My favorite quiet pastime is writing. I’ve not published a book yet, but I will. I hope. I publish newsletters for HLAA Wisconsin and also for HLAA Fox Valley Chapter.
TERESA: What do you appreciate the most in your friends?
@julieo4: I appreciate people who accept the reality that I sometimes need hearing help in noisy social settings. I enjoy times when I can be one on one with a friend over lunch.
TERESA: If Hollywood made a movie about your life, whom would you like to see cast as you?
@julieo4: If a movie was made of my life I would like my granddaughter, Colleen, who has a BA
degree in theater performance to be cast as me. ☺
TERESA: What do you love about where you live or vacation?
@julieo4: I love Wisconsin where I reside. I love Minnesota, where I spend my summers. I love the Alabama Coast where we spend a couple months each winter. I love the United States of America.
TERESA: Puppies or kittens?
@julieo4: I’m very partial to golden retrievers although we do not presently own a dog. We enjoy our kids' dogs instead.
@julieo4 @hopeful33250 Thank you for a wonderful, rich interview! My only regret: I wish I had known all this when I first joined the list!) I was so interested in your history with SHHH and then Mayo Clinic. And by the way when was it that HLAA and Mayo connected? I first heard about it in 2019. Another piece of history, both unforgettable and unforgiveable, being told your progressive hearing loss would end in deafness! I am very grateful for your presence on the list!
@julieo4 your knowledge and experience in hearing loss helps a lot of us understand and possible help our own friends who have a hearing loss. @hopeful33250 thanks for all of your hard work on putting the interview together! Julie I'm with you! I love Minnesota, Wisconsin, and the good old U.S.A.. I also really like any coastline and the ocean being an ex Navy guy. That's a downside for being a landlocked Minnesotan, you only have memories of how beautiful they are. Thank you for letting us get to know you a little better!
Back when my hearing loss was diagnosed in the early 60s, there was very little research being done on hearing loss. The prevailing theory was that because the hearing mechanism was deep inside the brain, it was inaccessible to study. Back then, everything was blamed on the auditory nerve being dead or dying. That indicated there was no hope of stimulating the auditory portion of the brain due to the dysfunctional auditory nerve. Cochlear implants were being discussed in the 60s, but they were being dissed as a dream of dreamers. Thankfully, those dreamers kept on dreaming and experimenting.
It's a fascinating history. Because of my involvement in SHHH/HLAA, I had a front row seat watching what was happening to those people who agreed to be part of the research programs. I watched what happened with single channel implants, and then with multiple channel implants. I saw friends who could barely carry on a conversation, go from that status to being able to hear better than I was hearing with my hearing aids. And, it has gotten better with each upgrade available. I feel so fortunate to be a benefactor of cochlear implant research. I had my cochlear implant in 2005. My only regret is that I didn't do it sooner.
I am not sure exactly when Mayo Clinic Connect and HLAA got together, but it was not that long ago; perhaps 2018?
@julieo4 Yes great interview and thank you for your incite to this area that probably doesn't get talked about much. As I mentioned I too have a loss of hearing and even tho I tried hearing aids they did seem to help my ringing so I have them shelved at the moment. I think my problem.is more of a frequency missing issue than audio level. I seem to miss certain words and it gets me in trouble with my wife at times.
I see you are a Golfer and that's one of my passions but haven't been playing. I'm still not sure how safe that is yet. I know its basically outside and of most activities its probably one of the safest. Have you been playing since this COVID issue?
Dana
HI Dana. I haven't played much golf recently, but not due to COVID. My husband and I used to play a lot of couple's golf, and enjoyed playing in events and just for fun. He now has leg issues due to drop foot that occurred following back surgery several years ago. He uses a brace. Wasn't a big problem until he injured the Achilles tendon on the same leg. He now has problems walking on uneven surfaces. I miss playing, and should get my act together and go out and play in the lady's groups. Maybe next year. As far as safety is concerned, I do think that golf is probably one of the safest recreational pursuits you can be involved in right now. If you feel the spirit...go for it.
Sadly, a lot of hearing aids end up in dresser drawers or 'shelved' because they are not properly fit for a person's hearing loss. A shame. Hearing aids don't correct tinnitus, but they may be able to mask it a bit. You should go back to your provider, ask for real ear measurement, and be sure they are fit right for your needs. On the other hand, if they are not working for you, why did they sell them to you?
@julieo4 What do you mean by "real ear measurement"??
https://www.youtube.com/watch?v=cHR0Oa6I-wY This video should explain what real ear measurement is and why it's important.
@julieo4 You are so full of knowledge and experience with hearing loss, Connect is lucky to have you. I enjoyed learning more about your journey. I am impressed by your perseverance and how you have advocated for yourself by becomming involved and learning all you could do (not couldn't), and not being defined by hearing loss. You are a force! I also feel your love and admiration for family. They are lucky to have you as a role model. Something tells me you WILL write that book!
Thank you so much for your kind comments Rachael. I definitely have to get 'that book' published. 🙂 Trying to figure out how to do it on Amazon. How does one find the time to learn the ropes? 🙂
@julieo4 thank you for being here! You bring so much intelligence and common sense to hearing loss. It is a difficult concept for many who do not have hearing issues. You are certainly a champion of the hearing impaired. I love that you would choose your granddaughter to represent you, what a gift.