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–but hopeful that I had made someone else’s evening go better by approaching those on the fringes.

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 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

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 University, Stanford 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.

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 for specialized populations w/hearing loss is: Decibel Therapeutics. Another company that has already started clinical trials for a more general population 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.

 I would deeply appreciate your help in keeping up with the above companies.  And I would appreciate information on the 41 other companies who are developing therapies for inner ear disorders.

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 us on Twitter–where most of our posts will not be about hearing loss.

ADDENDUM

On Nov. 11, 2021, just as I was getting ready to go to my second PRP therapy for my hip and back, I learned about PRP for the ears. Only one hearing researcher from India, Dr. Tyagi, ENT,, seems to have published anything that is widely available on the web. And he was only allocated a poster session with a five page paper. I’ve read that the Schoen Klinik in Germany has had success with PRP and ears. But they have been in lockdown to any new patients (and apparently not answering their questions) until the surge with the Delta variant subsides.

Another exciting find for me has been Dr.Cliff AUD who helps folks find audiologists who follow the best practices he has developed. He also does product reviews of hearing technologies and expresses other opinions on YouTube. Let me know in Comments if you find anything interesting there.