If you missed our December 2023 HOPE virtual hearing loss support meeting, here are the notes. Our topics at this meeting included a TV feature for a cochlear implant, the impact of hearing loss on family, and how to cope with tinnitus that occurs through a cochlear implant.
- Adjusting to a New Cochlear Implant
An attendee inquired about how long it takes to understand speech after getting a CI. The experiences of the other attendees varied widely. One attendee said they had immediate understanding post-activation. Another person experienced a significant delay, taking about a year and a half to understand speech clearly; they mentioned using a program called Angel Sounds for aural rehabilitation. Another participant shared that understanding speech took about two weeks. One participant described their experience as initially hearing sounds like “Charlie Brown’s teacher“, but then speech became comprehensible after a few days. A suggestion: Books on tape as a rehabilitation method, which one of the attendees found to be effective.
- CI Processor with TV Feature Enjoyment
An attendee is enjoying a new CI processor feature that allows direct audio streaming from the television, which is particularly appreciated in a condominium setting in order to avoid disturbing neighbors.
- Thanksgiving Experiences Success!
The meeting organizer shared a success story about how they managed a family gathering during Thanksgiving. They requested that family members take turns speaking to facilitate better communication for hard-of-hearing individuals, which resulted in a more inclusive and less exhausting experience.
- New, Unusual Tinnitus Heard Through a CI
An attendee discussed a recent onset of unusual tinnitus that affected their hearing through their CI. They expressed frustration with the lack of effective treatments and the advice they received, which was to ignore the tinnitus. Another attendee mentioned a new FDA-approved treatment for tinnitus, which may offer some hope; Dr. Cliff Olson’s discusses this treatment in a recent video.
- The Impact of Hearing Loss on Spouses/Communication Partners
An attendee mentioned the impact of hearing loss on spouses and communication partners; the attendee shared personal experiences of being perceived as rude or as not acknowledging others due to not hearing them. The attendee also mentioned an article from Seattle Met magazine that addressed similar issues and highlighted the need for better awareness and legislation for hearing aid coverage.
Another attendee shared one way her hearing loss was impacting her husband. Because of her many communication challenges in social situations, the participant confided she was reluctant to attend parties; it’s tiring to strain, to always have to explain what’s needed for good communication, to ask people to move to a quieter space to talk, all without out the support of her husband, who is elsewhere talking to others. The attendee explained how she and her husband talked this through to problem-solve the concerns. They then developed a partnership strategy for parties.
- Learning ASL Online
The organizer shared information about a free online American Sign Language (ASL) learning resource, SignSchool.com, and encouraged others to join in learning ASL for improved communication in the absence of hearing devices.
- Telehealth Captioning Challenges
An attendee brought up the lack of captioning in telemedicine appointments. Participants discussed various workarounds, including using voice recognition software on personal devices and the legal requirement for ADA accommodations.
- Student Observer’s Gratitude
A student observer expressed gratitude for being able to attend the meeting and mentioned that their experience would be shared with classmates. The student will highlight the importance of advocacy and understanding hearing loss.
- Discussion on Accessibility in Healthcare
Attendees expressed frustration over the lack of accessibility in healthcare settings, especially with the resurgence of mask mandates. They discussed the importance of advocating for universal design and technology, such as iPads with speech recognition software to aid communication. The discussion also touched on the need for training medical personnel to be more accommodating of patients with hearing loss. Attendees were reminded to ASK for CART Captioning as an ADA accommodation when scheduling the appointment.