New England Newsletter

April 2021 Newsletter

Contents

  1. Next HLAA Plymouth Chapter Meeting on May 19: Hearing Technology
  2. An HLAA member’s Personal Story of Her Hearing Loss
  3. Future Events
  4. Articles/Videos for Future Reference

Next HLAA Plymouth Chapter Meeting

Our next meeting will be held on Wednesday, May 19 from 4:00 to 5:30 pm and the topic will be:  Hearing Technology:  3 reasons to be excited about hearing technology and 3 things missing from the conversation.

The speaker will be Andrea Kaneb, an educator and advocate striving to break down barriers that lead to social isolation for people with hearing loss. She created the website www.gatheringsound.com based on her own lifelong experience with hearing loss and a deep dive into stories of others and the industry. She has completed the Network of Consumer Hearing Assistive Technology Trainers (N-CHATT) program and has an engineering background.

The meeting will be captioned on Zoom using ASR (automatic speech recognition), which is the same thing as Live Transcription, Closed Captioning, or Subtitles. 

Zoom Meeting Link : https://us02web.zoom.us/j/82690617529.

This will be our last virtual meeting of the 2020-21 year.  Our chapter does not meet over the summer.  Hopefully by the fall, we’ll be able to meet again in person. 

An HLAA Member’s Personal Story of Her Hearing Loss

My Hearing Loss Journey by Betsy Stengel, a member of HLAA Plymouth Chapter

Almost 30 years ago, I was diagnosed with Meniere’s Disease, an inner ear disorder that causes vertigo, imbalance, tinnitus, and hearing loss.  My particular kind of Meniere’s is on the migraine spectrum, which made me very sensitive to light and noise, so I had the seemingly contradictory symptoms of losing my hearing while at the same time certain sounds were almost painful to my ears.  While the tinnitus and hearing loss were certainly very concerning to me, for many years my real struggle was with vertigo attacks that would come on suddenly, making the room spin wildly and causing severe nausea for hours.    Unfortunately, in the years when I was going through the worst vertigo attacks, CBD treatments were not available, but they are now used by many to reduce both vertigo and tinnitus. 

Dealing with the progressive loss of hearing was easier than handling my often-spinning world.  My first hearing aid had a “masker” – a channel that offered gentle white noise that covered my tinnitus.  I found it truly relaxing, even comforting, especially after a vertigo attack when my tinnitus was particularly loud.  Several years later I acquired a hearing aid for my other ear and found the pair enabled me to hear in most situations, except crowded rooms.  After 9/11, I was working on integrating the emergency preparedness system of the Boston teaching hospitals with Boston’s police, fire and EMS agencies, and my greatly improved hearing enabled me to continue working in an immensely rewarding job.

About five years ago, I fell while walking my dogs in the woods and lost all hearing in my left ear.  After waiting a few months to determine if the hearing would return (it did, but only slightly), my wonderful ENT at Mass Eye and Ear Infirmary suggested a cochlear implant, and my husband, who had watched me struggling to continue my active life with significantly impaired hearing, encouraged me to take the giant step.  In August 2016, I had the implant surgery and a month later, my audiologist “turned on” the sound.  Immediately, in what seemed like a miracle, I heard her voice coming clearly through the static in my head.  From that day forward for the next several months, my hearing improved on a daily basis, so that at my next hearing test I had 86% hearing – something I hadn’t experienced for many years.  Importantly for my favorite activity as a swimmer, the cochlear implant I selected has a waterproof component that allows me to converse with my friends in the pools and pond where we swim several times a week.  The relatively simple implant surgery allowed me to return to all my activities with greatly enhanced ability to hear. The best reward?  Hearing my grandchildren laughing.

Betsy Stengel

Plymouth, MA

Betsy also sent me some information on Improving Hearing Loss with AudioCardio  www.mindovermenieres.com/improving-hearing-loss-with-audiocardio/

Betsy emailed me: “This is really interesting. It wouldn’t be useful for you or me, but for people who have medium hearing loss it might be worth checking out the app.  The guy who wrote this has Meniere’s Disease – which I do too, and he’s built a business advising people and companies (employers) about dealing with the disease.  He rarely endorses actual labels or companies, so this is probably quite legit.  I think Joe (my husband) is going to see if the app helps him reduce tinnitus and improve his hearing.”

Future Events

  1. Saturday, May 1, 10:00 am to 12:30 pm (GMT-04:00) How to Be That Fabulous Person with Hearing Loss! By Gael Hannon. Organized by HLAA Indianapolis Chapter. This presentation is a humorous but realistic look at how we can live more positively with our hearing loss.
    Google Meet Link: https://meet.google.com/honjtic-dpr
  2. Saturday, May 1, 2021 AT 1 PM EDT – 3 PM EDT Part 2: How to Overcome Hearing Loss & Isolation-You Have a Choice!  Google Meet Link: meet.google.com/chv-ivqe-xdk Facebook event page: https://fb.me/e/1smkmP320
  3. Monday, May 3, 4:30-6:00 ET Music Enjoyment with Hearing Loss: Factors Influencing Music Perception, How Hearing Aids are Designed for Speech versus Music, and Tips for Better Enjoyment presented by Dr. Peg Lisi, Audiologist, Pacific Hearing Services. Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZIoceyuqTgtE9TJayAvOlSWZyG3YiZ8DOUJ 
  4. Wednesday, 12 May 2021 from 6:30 pm to 7:30 pm ET  HLAA Western Wayne County, Michigan. Hearing Aid Common Complaints, Solutions, and Troubleshooting presented by Ben Wightman, Au.D.
    Register here: https://zoom.us/meeting/register/tJckf-yorjsjG9MF5lvPAO725j-hwKHvFPTq
  5. Tuesday, May 25, 10:00 am – 3:00 pm ET. HLAA has received permission from the U.S. Food and Drug Administration (FDA) to host its first ever meeting on Externally-Led Patient-Focused Drug Development (EL-PFDD) for People and Families Living with Sensorineural Hearing Loss.
    Please register for the meeting by clicking here. You’ll receive important meeting updates, including the link to login on the 25th.  www.hearingloss.org/hlaa-meeting-on-sensorineural-hearing-loss/

Articles/Videos for Future Reference

  1. HLAA-Washington State has an article in the 4/25/21 Seattle Times
    www.seattletimes.com/sponsored/ending-the-isolation-of-hearing-loss/
  2. Self-Care During Covid-19: The MCDHH (Mass. Commission for the Deaf and Hard of Hearing) Victim Services Program has created a video on mask wearing and communication tips for Hard of Hearing and Late Deafened people. This project was partially supported by the Massachusetts Office for Victim Assistance through a Victims of Crime Act of 1984 (VOCA) grant from the Office for Victims of Crime, Office of Justice Programs, U.S. Department of Justice.  www.fb.watch/4-ZNNT8PHb/
  3. How to Access and Ask for Zoom Captioning:

https://support.zoom.us/hc/en-us/articles/207279736-Closed-captioning-and-live-transcription

4. Shari Eberts, who writes a Living with Hearing Loss Blog, wrote: Hearing Loss & Beyond – A New Captioning Tool in Chrome: https://livingwithhearingloss.com/2021/04/20/hearing-loss-beyond-captions-are-catching-on/

5. Valerie James Abbott, a mom of two daughters whose youngest child, now almost 16 years old, is hard of hearing. She will be publishing a children’s book in May 2021 (Padapillo) that is based on the true story of how her family discovered and came to terms with her child’s late onset hearing loss.  If you would like to read more of this family’s story, please visit: www.valeriejamesabbott.com/ or Valerie James Abbott’s Facebook page:  www.facebook.com/valeriejamesabbott

6. A guide that provides information about options and for the best medical alert system: www.assistedliving.org/best-medical-alert-systems/. Assisted Living is a community organization that prioritizes helping those who are disabled and the elderly fully enjoy their healthy years and age gracefully.