November HearPeers Virtual Coffee Chat

[Mary Beth]

Last virtual monthly chat for 2020

Sunday November  15

9:30 am New York time start time

chat opens at 9:15 for socializing 

Google Meet with free live captioning

All are welcome. Smile 

If you are interested in joining in, just reply here so you are included in the email invite.

 

Reminder:  There will not be a chat in December.  We will start back up again in January.

[Mary Beth]

@Mary Beth

@Dave in Pittsburgh

@Kirk S.

@Tracey_66

@Mary Featherston

@Kylie

@Nikki

@Joan

@Megan L.

@phobos512

@KittKatz

@Jewel

@Valentin

@artkup

@Marion nancy

@MallaRuth

Laura

Shahaff

[Joan]

I’ll be there! Thanks, @Mary Beth!

[Tracey_66]

It was great to see every one!  Look forward to the November chat.

[Megan L.]

@Mary Beth
 

Sounds good MB 😁 See everyone in November 🥳

[Mary Featherston]

Sounds good, Mary Beth, see everyone in November.

[Jewel]

Sorry I missed today's meeting. Hopefully I can make the November meeting even if it's for half hour. 

[Mary Beth]

We missed you @Jewel.  It was a great chat.  Hope you are well.

[Kirk S.]

I’ll be there! Sorry I missed you guys this time. Hope you had a great chat. ... Things area going reasonably well at the hospital. With some luck, I should be home on Friday. 

[Dave in Pittsburgh]

I will be there☕️🍗🍷

[Mary Beth]

@Kirk S.

We missed you and were hoping things were improving.

[tmscarlett10]

OOH! I would like to join!

It would be my first, and should have my CI activated by then!

[Mary Beth]

Awesome! @tmscarlett10

 

There are free live captions.

Go to the top and send me a HearPeers private mail message.  I need your email address to send you the invite on that morning.

And wishing you the best on your surgery!

[Dave in Pittsburgh]

Congrats welcome to the group 

[polyesternapkinstowaway]

I'll be there.

And just as a reminder, my name isn't Bob, it's Matt. Bob Jenkins was an alias I cooked up many years ago (somewhere around 2002) for use online. At one point I even had an email address which was a stylized "Who is Bob Jenkins?" @ whatever site, I think Hotmail when that was still a thing.

I changed the name on the particular Google account now though to a phoneticization of my initials. Which probably won't be confusing at all. 😁

[Mary Beth]

@phobos512

We probably should add HP username and actual first name to our brief intros at the start of the meeting when new members join in.  Smile

GoogleMeet identifies the speaker in the live captions based on the email address used.

[Megan L.]

@phobos512

I feel like you should be able to update your name the way it is displayed in the account settings if you wanted to so it says Matt. 

[polyesternapkinstowaway]

@Megan L. I absolutely could, in the same manner that I updated it this past weekend from Bob to my initials. I just choose not to.

[Megan L.]

@phobos512

I thought so! Be prepared for some confusion in our next chat 🤣 haha

[Kirk S.]

Hi Mary Beth.  

This is just a quick note to say “Hello” and to let you and our chat group know that I was released from the hospital yesterday and am now comfortably back home.

I was in the hospital for 18 days altogether, which was a little longer than expected but shorter than it could have been. The doctors managed to restore a significant amount of the hearing that I lost on my “good side” (left side); I regained from 15dB to 25dB through the low and mid tones. That has restored basic, functional hearing on my left side (I wear my CI on the right side.) So that’s good news. 

On the downside, we were not able to restore all that I lost. So overall, my hearing is about 10dB to 15dB weaker than it was a couple months ago. That’s just good enough for basic communication, but not much else. 

Nonetheless, we’re continuing heavy corticosteroid treatment on an out-patient basis and if past experience applies, my hearing should slowly improve in the months ahead. We’ll keep our fingers crossed about that.

The doctors are still not sure what’s causing my problems. I’ll skip the details. But they are increasingly convinced that I have an unusual form of steroid deficiency, possibly associated with blast damage during the Iraq War about a dozen years ago (which is when my hearing problems began), with one or two other complications of unknown origin. 

Clearly they are working hard on it. They’ve gone through the whole SNHL playbook, with limited success, and now they’re filling in the blank pages in the back. It seems that my hearing remains relatively stable as long as I’m taking at least 5mg or so per day of Prednisone. But once we reduce below that, my hearing seems to fail quickly. Then they need to pump me full of the stuff for a few weeks or months, then slowly reduce to a manageable level.

Corticosteroids can produce a range of side effects in large dosages, so that’s why they want me under close hospital supervision during the initial phase. Japanese hospitals are not a major hardship, by they way: Modern, well-staffed, well-maintained. Low cost. Good food. Can’t complain.

So, I’m back home now. Tokyo’s summer heat has been replaced with cool autumn temperatures. We’re getting glorious sunsets behind Mount Fuji in distance. COVID remains a lingering threat, but nowhere near the disaster in the States and EU.

So, this week and returning attention to my Rondo 2, which is implanted on my right side. We’re still using the default settings, which unfortunately produce little more than garble. My “initial activation” was in January and my “second activation” was in July, at a different audiology center. Little success with either, so far. 

I have an appointment with my new audiologists later this week and we hope to do an actual custom mapping. But I have my doubts. The audiologists are not English-speaking and experience so far tells me that CI recipients need to have the mapping done in their native language with native speakers. Otherwise too much gets lost in translation, and mispronunciation. It seems likely I’ll have to wait for the COVID crisis to pass before I can head home for the States and get an effective mapping done there. We’ll see. 

If you or any of our chat group have an opinion on that, please let me know.

I promised that this was going to be a “quick note”, so I guess I’ve already exceeded my limit. I look forward to seeing you and the rest of the group during our next chat in two weeks! 

Best,
Kirk
 

[Kylie]

Thanks for the update Kirk. So glad you have some gains at least.

[Mary Beth]

@Kirk S.

I am so glad you are home and that some of your hearing has been restored so far.

Take a picture of a sunset and post it. We can all use some extra beauty in our lives at the moment.

I am baffled by language complications with setting threshold and setting most comfortable loudness on each electrode as they are only beeps.  Audiologists use a picture chart when working with young children which is a scale from too quiet to too loud for setting most comfortable loudness.  It is available on the Med-El website.

I sure do hope you can get a workable MAP soon.

Keep us posted and welcome home.

https://s3.medel.com/downloadmanager/downloads/bridge_2013/scale_charts/fr-FR/24280.pdf

[Kirk S.]

Hi Mary Beth.

Thanks for the quick reply! Yes, I’m a bit baffled by the process, too. Indeed, the Japanese audiologists use the same MEDEL scale charts that you linked to me for setting the sound levels per channel (though not individual electrodes, so far). But the sound quality through my Rondo 2 remains poor, nonetheless. Basically, it’s just garble and static, both through the air and the through the telecoil. In other words, the sound “quantity” is fine, but the sound “quality” is not. I have no idea why.

I had thought the problem might be with the word recognition process. I’ve seen YouTube and MEDEL videos in which audiologists play a recorded sound or phrase and then ask the patient, “How’s that sound?” And together the patient and audiologist make adjustments until they agree on something that sounds about right.

I’ve tried that with the Japanese audiologists, but it’s difficult for me to figure out how a specific Japanese or English word or phrase is supposed to sound to the audiologist. And it’s difficult for the audiologist to figure out how a specific Japanese or English word or phrase is supposed to sound to me.

For example, the Japanese pronounce the word “coffee” as “KOH-hee”. And they pronounce “beer” as “BEE-roo.” “Strawberry” is “stu-LAW-belii”. So they expect me to pronounce and perceive them the same way, and no amount of explanation will convince them otherwise. It gets rather confusing. I would give anything for an audiologist with a Midwest accent!

In any case, we’ll give it another try this week and I’ll let you know how it goes. If you have any other ideas, please let me know. Thanks!

Best, Kirk
 

[Megan L.]

@Kirk S.

Glad to hear you have some improvements and are now home. Sending you good vibes 😁 Would love to see a picture of that sunset you are talking about!!

[Joan]

@Kirk S. Welcome home...and yes, please post a picture of a sunset! 
Just wondering if it would help to have your wife with you when doing your MAPping. Perhaps having her help with the Japanese/English pronunciations and responses to your audiologist would help? Just a thought.

See you on the next chat. In the meantime, enjoy those sunsets!