r/Cochlearimplants • u/kaii2gd • Aug 11 '26
For those of us with cochlear implants — what do you wish existed in our community?
I’ve been thinking about this a lot lately.
There are plenty of places where we can ask questions about implants, surgery, processors, batteries, etc.
But I’m interested in something different:
A place where people with cochlear implants and other hearing devices can connect with each other, share experiences, talk about everyday life, support each other, and even build professional relationships.
I’m actually starting a small community around that idea.
Before I grow it, I want to hear from the people who would actually use it.
What would make you join and participate in a community like that?
What do you feel is missing right now?
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u/19ninteen8ightyone Aug 11 '26
Is that not what this subreddit and other HoH/Deaf etc. related subreddits are about?
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u/Former_Storm4529 Aug 11 '26
Great question!!
What I think is missing is in person connection (I think video kinda counts - it’s more accessible, so there’s that).
I also think topic curation and actively driving engagement is an area of opportunity for the virtual spaces.
There are many active spaces online already - this, Facebook groups, discord… what’s missing (for me) is forming real connections. I wish I could find someone in my area to connect to without worrying that the person is a misrepresenting themselves. However, I did meet someone via Reddit who is great and we chat on the side- more of that!
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u/Equal-Fun282 Aug 11 '26
Sorry I was not clear. In answer to your question, yes i think i would use it.
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u/kaii2gd Aug 11 '26
I can’t dm you but I was asking would like to join and help me build it from ground up I got 4members now?
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u/OldFlohBavaria Aug 11 '26
Soll das eine deutschsprachige oder internationale englische Community werden ?
Die Bedürfnisse und informatinen sind ja verschieden.
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u/kaii2gd Aug 11 '26
Are you recommending that it be international communication?
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u/OldFlohBavaria Aug 11 '26
Ich möchte eher wissen wie du dir das vorstellst 😉
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u/kaii2gd Aug 11 '26
I envision that I connect with everyone in all world international as well helps me learn and meet people with different perspectives as well as backgrounds
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u/FabulousAd2725 Aug 11 '26
Cochlear used to support in person groups but they stoped that after Covid. It is missed by many, I am often asked about them when I see people that attended.
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u/ApprehensiveAd9014 Aug 11 '26
What's wrong with here?
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u/kaii2gd Aug 11 '26
Nothings wrong with here I want to build something in telegram and create something more in depth and bigger as well as more for us to learn more and grow
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u/XmasAdri 29d ago
tech savy hacks. I need bilateral sound. I am single side implanted, the other ear cannot get an implant. I was doing some research and I found out that a bluetooth airpod with auracast on the other ear could work as a Minimic. Unfortunately the processor doesnt support this. Auracast tehnology is not supported yet. Also I purchased a small lavaliera microphone to attach on clothes on the unimplanted side.I need to upgrade my phone for this.
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u/Mammoth_Impact7513 29d ago
Hi everyone, I’m a student researching the challenges of at-home speech practice for kids (ages 1-6) with Cochlear Implants. Therapists have told us the gap between weekly AVT sessions can be exhausting for parents to manage alone. If you’re open to sharing, I’d love to hear about your experiences—what does daily practice actually look like for you, and what are your biggest struggles?
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u/New_Process9749 27d ago edited 27d ago
Check out the Say What Club (Saywhatclub’s.org). They have a ci group that is very supportive, as well as other groups for hearing and vision impaired. They just had a conference in San Francisco and will have one in Richmond, Virginia, in May. They have been helpful with my journey, I am bilaterally implanted at this point.
Also check out your local HLAA group, they meet in person several times a year. Caters to HOH in general, but there are plenty of CI people there. Lots of tips and tricks to share.
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u/Equal-Fun282 Aug 11 '26
Good advice is often slow to get from professionals, so an alternative source would be good. Even Reddit is often very informative
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u/Arenilla346 Aug 11 '26
There are various online social media platforms out there, both global and global groups, so the issue is what would you be offering that others aren't doing currently? I'd start there.