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March 20, 2006

Activist shares hearing loss battles

Redwood City native Raegene Castle, 64, lost most of her hearing six years ago. The co-president of the Peninsula chapter of the Hearing Loss Association (HLA) — formerly Self Help for the Hard of Hearing People (SHHH) — spoke to staff writer Nicole Neroulias about her efforts to help other hearing-impaired members of the community.

Q: How did you lose your hearing?

A: I got meningitis Jan. 4, 2000. I was in a coma for seven days, and three of those I wasn't supposed to live. Doctors thought the antibiotics might affect my hearing, but I was so sick it was necessary to save my life... My left ear was totally deaf and my right ear had about 20 percent hearing — but, losing my hearing wasn't much, because I wasn't supposed to be able to walk.

Q: How long did it take before you could communicate?

A: I was in therapy for the first several months because I was in a wheelchair, couldn't walk even a step, couldn't remember anything, not even my grandchildren's names. I didn't get my hearing aid until eight months later. ... It took approximately one year to be able to communicate. In the meantime, I had a lot of helpful people around me, family and friends, that tried to talk to me by looking straight at my face, speaking slowly and if I didn't get it, they had to write it down. I went everywhere with a pen and paper. ... I took lip-reading classes, but it's so difficult — so many letters are the same. Q: With hearing aid devices, how's your hearing now?

A: I can hear at parties and dinners and watching television and over the phone. ... The cochlear implant (I got in December) hasn't helped yet, but I expect it to soon. I'm only hearing beeps, not words. I have to close off my other ear totally and my husband reads me six pages of words and I have to tell him what he's saying. I'm not hearing the words, but I can kind of get the inflections. I have to train the brain to hear words, and eventually, I'll be able to hear words. I have to do it four times a day, and I am exhausted when it's done.

Q: What kind of devices do you use?

A: I use a telephone from California Telephone Access Program. I use a PocketTalker, a device around my neck that connects with the hearing aid and has a microphone that goes to a person's mouth, (which costs) around $150. You can get a device from RadioShack for $3 to use four mikes, and there's a mixer that goes on there that uses seven mikes. At my family dinner, I can hear up to 14 people, because I put the mikes on the table. There are TV devices for $33 and $45 that work really well. We have a lot of catalogs at the Redwood City Library to hand out to people to purchase devices.

Q: What does Hearing Loss Association do at the Redwood City library?

A: We call it "The Rocky Stone Hearing Device Exhibit," after the man that started Hearing Loss Association 25 years ago in Maryland. It's at 10:30 a.m. the first Wednesday of the month in the large conference room, which was looped by a grant from the Library Foundation. ... The Danford Foundation gave us the $4,000 grant to buy 25 devices. People come and we demonstrate all the devices and then we have volunteers that work one on one with each person to try them out.

Q: Can people afford all these devices?

A: It's tough — hearing aids are $1,500 to $3,000. We're working on getting a credit from the government on your taxes. My husband (Jack) is in the insurance business, and it's going to be a real uphill battle to get (more) insurance coverage.

Q: What else is Hearing Loss Association working on?

A: We got the San Francisco Airport to post announcements on screens so people can read them. ... We also want to work with schools to install an FM system, a microphone that the teacher uses and speakers around the classroom (use) so the children can hear better.

Source: http://www.insidebayarea.com/sanmateocountytimes/localnews/ci_3620822

Posted by 4HL on March 20, 2006 11:54 AM


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