48 Million Americans have significant hearing loss

Accommodation and Regeneration

Nov. 26, 2020 Thanksgiving Day – PlanGreen

ACCOMMODATION

Most of my blogs these days focus on the main purpose of my business: achieving CLIMATE JUSTICE.  And I’m ever so thankful to friends in the myriad organizations I support who do that work (with or without me,).  Instead, I’m going to spend this blog on what I am (or would be) most grateful for with regard to my mental health.  I’m asking for your help!

Covid-19 restrictions have made most of us more aware how important connection with others is for our mental and emotional health. I thought that the pandemic might be a boon to my mine because large gatherings—especially happy hours with lots of background noise—were no longer any fun for me.  In fact, I often came home feeling depressed.

Image of the small rechargeable microphone that pairs with my hearing aid. The buttons on the side turn it up or down.

ReSound Multi Mic pairs with ReSound hearing aid

Despite my fabulous ReSound Multi Mic that I, or someone else in the meeting, would run around from speaker to speaker allowing me to get something out of some gatherings, I was beginning to feel less and less connected. But it was important to stay in touch by more than email, Facebook, Google Groups, Slack, MapApp  or listservs,

So I started out enthusiastically with virtual or online meetings!  But now I discover that I’m having trouble with those as well. I try to practice what I preach below so I have some really great headphones with an external mic to listen and talk to you.  (Those of you who give me feedback tell me that you can hear me clear as a bell.)  The problem is, with most of you, I don’t UNDERSTAND you!  My online hearing difficulty extends to public meetings too– both those who testify at them–and often city staff and/or Commissioners.

I’m deeply grateful to those few of you who are using best practices for virtual meetings—practices like:

  • USE AN EXTERNAL MICROPHONE close to your mouth
  • Use a front light and avoid backlighting–it’s important to those of us with hearing loss to see your face, even if we don’t read lips
  • Open your mouth and enunciate and keep your hands away from your mouth
  • Fill the screen with your face—as opposed to your ceiling, your ceiling fan, your window(s), your garden, your bed, your bookshelf, your kitchen, whatever. . .
  • Project your voice. Pretend like you are going to an interview for a radio sports announcer!
Editors Keys demonstrates what a difference good lighting, close positioning and an external mic can make in his 3 minute video. It was one of the first and most succinct of the many available.

Editors Keys answers numerous questions w/that name. His 3 minute video was one of the first and most succinct.

I’m one of those 48 Million Americans who have a significant level of hearing loss. You can better accommodate me–and a few others in your circles–by following the suggestions in this 3 minute video: How To Improve Your Zoom Video And Audio Quality .  There are hundreds more videos on the topic, but this was one of the first and most succinct .

Such practices will get you more than gold stars in my book, they will make you look and sound more professional and credible–maybe to your next employer.

Perhaps these facts from the Center for Hearing and Communication may inspire you Hearing loss: Prevalence 48 million Americans have a significant hearing loss; 1 out of 3 people over age 65 have some degree of hearing loss; 2 out of 3 people over 75 have a hearing loss; 14% of those ages 45-64 have some type of hearing loss; Tinnitus (ringing in the ears) affects 50 million people in the United States.

This struggle with online gatherings for me has been going on ever since Portland’s Mayor Wheeler told those of us who showed up at City Hall to testify in person on Portland’s Residential Infill Project on March 12 to go home.  It has caused me extreme frustration, alienating me from organizations I have long supported–organizations that have been an important part of my identity and sense of community. One example is expressed in my May 29, 2020 communication with Abigail Sheridan, VP of the Congress for the New Urbanism:

Abby,
After participating in each of the On the Park Bench sessions, I’m beginning to rethink my registration as there were many speakers that I could not understand–even with Bosch noise-canceling headphones on. I know I’m not the only one as I watched Marcela struggle to hear in the last session too. She was the best of that group–with a good microphone, front lighting and close so you could see her face well and hear her clearly.
Too many speakers are backlit, so that you cannot see their faces. They stand too far from their computer microphones and cameras besides.  That makes it hell for those of us with hearing loss–and probably some who don’t even know they have hearing loss.  . . .
Otherwise, I will need to take advantage of one of the other options for my registration money–requesting a medical exemption from your May 25 deadline.
Thanks,
Mary

For better of for worse, I didn’t  take advantage of one of the other options for my CNU 28.A Virtual Gathering registration money. Instead, I opted to try to get word out to speakers ahead of time via various social media. Nevertheless, I spent 5-6 exhausting days struggling to hear speakers at CNU28–only to be told at the end that my type of registration did not cover the ability to review any parts I may have missed! That would cost me another $50!!!

Before moving on from Accommodation, I do want to call out one organization that has demonstrated excellent online practices.  In a Sightline Institute webinar this summer, every speaker had headphones with an external mic and used the other best practices that I suggested above.  I understand that this was largely due to their Operations Manager, Riley Kent.  Their professionalism showed them to be highly worthy of my small monthly contribution.

BEYOND ACCOMMODATION

For more than ten years now, I have known about the research into hearing regeneration. With due consideration of their precious time, I’ve been seeking, hoping, cajoling, pestering researchers ever since.  I did get into one clinical trial on the hormone aldosterone–and that was somewhat effective in my case. But it became harder and harder to obtain supplemental aldosterone after the study. After a couple years, when the Canadian pharmacy in BC discontinued it, I stopped looking.

Until today, I did NOT know that 43 companies have therapeutics for restoring the inner ear under development–as reported in this issue of the Journal of Otology & Neurotology. I was only aware of 3-4 of them in the US and acupuncture with traditional Chinese medicine (TCM) in China. (I’m getting  at least one LAc here to try some of the techniques and to prescribe Er Long Zuo Xi Wan) but my hope of getting into a clinical trial in China has been put on a back burner!)

HEARING RESTORATION PROJECT CONSORTIUM

The Hearing Restoration Project Consortium is composed of 14 senior scientists working collaboratively on scientific research towards inner ear hair cell regeneration to accelerate the time frame for developing a cure for hearing loss. The HRP brings together researchers from Harvard UniversityStanford University, Oregon Health & Science University the University of Washington and elsewhere with the goal of researching and developing a genuine cure for most forms of acquired hearing loss. They seek to do this by regenerating the inner ear hair cells that enable hearing.

I started out corresponding with Ed Rubel at the University of Washington about UW’s research, but then Ed told me there was a whole consortium of researchers and that its director was here in Portland!  I then switched the focus of my correspondence to Peter Barr-Gillespie Ph.D., Scientific Director of the Consortium and Professor of Otolaryngology at OHSU.

Screen shot of Hearing Restoration Project's YouTube video: A Cross S[ecies Approach to Hair Cell Regeneration. It reads "Learn more about our work hhf.org/hrp. Donate to advance hearing loss cures uhf.org/donate. Thank you!

Donate to advance hearing loss cures uhf.org/donate

PRIVATE COMPANIES

Until recently, Dr. Barr-Gillespie was on the Scientific Advisory board for one of the private companies currently doing clinical trials: Decibel Therapeutics. Another company that may be a step ahead of Decibel is Frequency Therapeutics. They are both in the Boston-area. I follow both companies on Twitter (@DecibelTx  and @frequencytx) and have learned a great deal about hearing loss through them.

Screen shot of Decibel Therapeutics @DecibelTx Twitter home page. "Pioneering inner ear research to deliver life-changing medicines for hearing and balance. Boston, MA decibeltx.com

 

Screen shot of Frequency Therapeutics @frequencytx Twitter home page. "Working to advance regenerative medicine and develop a therapeutic to restore hearing for those with the most common form of hearing loss. Cambridge, MA frequencytx.com

I am not a frequent Twitter user, so, for those of you on Twitter, I would deeply appreciate your help in keeping up with the above.  And I would appreciate information on the 41 other companies who are developing therapies for inner ear disorders. Writing this blog post has already helped me learn a great deal by searching different topics and/or following links.  BTW, most of my images link to the URL where I “grabbed” them .  I hope you will check them out–and share them with your friends and relatives who just might have hearing loss themselves. I’m thankful for your attention–and I hope you will follow  PlanGreen on Facebook, connect on Linked In and follow it on Twitter.

5 thoughts on “Accommodation and Regeneration

  1. Garlynn Woodsong

    Thanks, Mary. While my hearing loss is nowhere near yours, I do suffer from tinnitus, and am thus also watching this research with interest.

    On your advice, I did have my company purchase a Yeti podcast-grade mic that I have used ever since for any video-conference where logistics allow for it. Having an onboard gain control on the mic is amazing — total game changer in being able to have control over my own broadcast volume. The rest of the kit is pretty high quality, as well — even my Dad commented on how high-quality the mic was, before he passed.

    I don’t expect everybody to be able to spring for a Yeti, but everybody can beg, buy, borrow, or steal a set of iPhone-grade corded headphones, and those honestly are pretty OK for video calls for most people.

    cheers,
    ~Garlynn

    Reply
    1. Mary Vogel Post author

      Garlynn,
      I have to confess that I am late in seeing this reply and it means a great deal to me! I hope you will also practice keeping your hands away from your mouth. I’ve never had any training in lip-reading, but I guess my brain does that automatically because I can hear people better when I can see their lips.

      You might appreciate this update on Frequency’s drug, FX-322: https://tinnitusmag.com/fx-322/. I don’t have tinnitus, so would not likely see this, but it came up in a search when I looked for Phase 3 trials.
      THANKS!
      Mary

      Reply
  2. Mary Vogel

    Hearing Loss Meets Eyesight Loss
    I happily revised my blog to accommodate the request of Katie Durden in her My View piece in the Dec. 9, 2020 Portland Tribune: https://pamplinmedia.com/pt/10-opinion/490430-394085-opinion-websites-shouldnt-leave-visually-impaired-individuals-behind. In the print copy, it was titled “Alt Text is Important for accessibility.”

    I hope you will take the few minutes to read Katie’s suggestions too; then be diligent in helping folks without sight feel included.
    Mary Vogel

    Reply
  3. Mary Vogel Post author

    Since I wrote this blog, I’ve been through a couple of online webinars with FrequencyTX aimed at investors (they are publicly traded). As far as I could hear, neither webinar mentioned anything about a Phase 3 trial, but the otolaryngologist (ear doctor) who was willing to actually do his own research on Frequency’s drug FX-322 told me that he read about Phase 3 on the web. When I searched myself, I found this: https://tinnitusmag.com/fx-322/. The entire article is quite worthwhile because it also discusses pricing, but here’s what I learned about Phase 3 trials:

    Fx-322 timeline, if the Phase 2a clinical trials returns positive results, then it is expected that Frequency Therapeutics will begin Phrase 3a clinical trials and apply for breakthrough designation with the FDA. Fx-322 fda Breakthrough designation is given to drugs that are intended to solve an unmet medical need, where there are no other drug therapies available. This can speed up the clinical trial process similar to the fast-track designation that Frequency Therapeutics have received for the Phase 2 trials.

    As there are currently no drugs available to treat sensorineural hearing loss, Phrase 3 will not focus on FX-322 in comparisons to other drugs, it will just compare itself to a placebo to determine its effectiveness. Phrase 3 of clinical trials is expected to be even larger and will help determine whether or not the FDA approves FX-322 as the first ever drug to treat sensorineural hearing loss.

    Reply
  4. Mary Vogel Post author

    My hearing loss got decidedly worse during and after my trip to Hawaii. I believe that was because of the flights. Unfortunately, I didn’t know about these little inserts called EarPlanes https://www.earplanes.com until after I got back and the damage was done. Hope you will learn from my experience and protect your ears.

    I seem to have lost my ability to hear the consonant R very well. Instead of Portland, you sound like your saying Pawtland. I sound like that to myself as well. I’m trying to turn things around with acupuncture, traditional Chinese medicine TCM and a YouTube site: Divine White Light’s Reiki for the ears and Reiki for cell regeneration.

    Reply

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