Another Update on the New Hearing Aids

I am definitely getting used to them now. I still get a strange echo when the toilet flushes or when the microwave dings. The sound kind of lingers. More feedback.

The doorbell is much clearer. The doorbell for the front door has a different sound than the one for the back door, but I keep forgetting which sound is which so I always get the wrong door.

I can hear the phone ring.

Other than that, the girls' voices are getting familiar again. I can hear the voices on the TV when I am not looking at it or reading the closed captioning. I could have the TV behind me and I could make out what they are saying. Not 100%, but more than usual.

I still cannot localize traffic. I hear vehicles, but I don't know which direction they are coming from. I have to scan for them. Sometimes I hear a car and then see it going in the opposite direction and wonder where it came from because I know it didn't pass me. (Unless it came out of driveway behind me and turned in the other direction.) But because one ear is almost deaf, I don't think that it would ever change. I would always hear with my good ear and think everything I hear is on that side.

I am just glad that the girls' voices sound like, well, like them.

As I am sitting here in front of the computer, I can hear the TV in the next room. I couldn't do that with my old hearing aids.

Now, how about retina aids?

If Only I Had a Brain...

Yesterday was just not my day.

First off, I worked out and prepared to get ready for a shower. I took out my hearing aids and put my wristwatch on the counter as usual. I turned on the shower. I decided to get the blow dryer out of the drawer and set it on top of the counter. The floor was wet. I looked at the shower door and it was closed. Then I spot my water bottle. It got tipped over. With my hearing aids off, I didn't hear it. Usually I would feel it, but I didn't.

My hearing aids got wet.

Oh, crap.

I dabbed it dry and took the batteries out. I put the hair dryer on a cool setting and dried them best I could. I mopped up the counter top and the floor with a towel.

I jumped into the shower cursing myself for not putting the cap back on the water bottle.

After I dressed, I put my hearing aids on. I heard the "ding" and the "on" sensation in my bad ear.

Ok. That one's fine.

I put on the other one. It sounded funny.

Oh, crap!

I turn up the volume. I felt the aid and it was on the T-coil switch. I must have moved it when I dabbed it dry. So I moved it back to the microphone switch.

There. It's fine. It's working.

I email the audiologist. When I get a reply from her, she tells me not to worry, but that it would not be a good idea to leave them in the bathroom while showering. The humidity would damage it over time.

Oh, duh. I knew they can't get wet. You can't go swimming with them on. Good thing my hair is thick so if it rains, it can't get through to my hearing aids as quickly (unless I have it up in a ponytail). I like the moisture-absorber bag thingy I can get for the hearing aids during the humid weather. I should have known better. (blonde moment)

An hour later I start wiping up the counters in the kitchen. I started "cometizing" the kitchen sink. I grab the dish drainer and set it on the counter.

Oops. There goes another bottle. I wipe up the floor, again kicking myself in the butt for not screwing the stupid cap on it. (I do usually screw the cap back on so I don't spill when I knock it over.)

So now I am preparing supper for the girls and me. I had just set my water bottle on the counter. The phone rings. I reach over to grab it and in doing so, I knock over the water for the third time.

Woe is me!!

I grab a kitchen towel and mop it up with my stockinged feet and hear my husband's voice on the phone. "What's in the mail today?"

After that phone call, I take off my now wet socks.

I want to scream!!

Aaagggghhh!!

Every so often, I do accidently knock over my water bottle. Most of the time it has the cap on it. Or it is less than half full and nothing comes out.

Do I need one of those spill-proof sippy cups?

Three times in one day!! Is this some sort of sign?

(Keep the cap on!!!)

Literally.

The "brain" cap, I mean.

There.

Breathing calmly. Sweetly, "How was your day?"

Adjustment City

I went to the audie (audiologist) appointment Monday. Sorry. I meant to post this earlier.

I told her what I am hearing, what I am still adjusting to, what doesn’t work, what’s hurting. (The tips of my ears are a little raw. That never happened before.) It’s not bad, but enough. it could be the tubes are a little too short and it’s tugging on my ears or it’s a little heavier than my old hearing aids or because of the shape and how it fits around my ear or a combination of all of it.

She did something to help eliminate the feedback so it doesn’t whistle so much, especially in my bad ear. I would have it on just so that I know it’s on, but I really can’t get any speech out of it. I would have it on too loud and it would whistle.

It seems that my brain is still adjusting to the new hearing aids. I don’t remember how long it took for my brain to “retrain” itself to hear with my other hearing aids. It’s a different brand, too. And it’s has a lot more “oomph” (power) than my old ones.

Then again, I have experienced a big loss within the last six years.

Things are still tinny, metallic-like. I really miss the analogs. They are not making them anymore. I wanted to go back to analogs (my previous ones were digital, too, but I really missed the sound I got from it-the digitals make things sound more unnatural.) I did get accustomed to them, though. I was talked out of getting analogs because if I needed repairs, the parts would be hard to find. So I am stuck with digital hearing aids. (Digitals cost twice as much, if not more, than the analogs. Makes me wonder if someone just wants to line their pockets? How many people wear hearing aids? The elderly, the children born with hearing problems and grow up to be adults? Hmmm...) I had been using the Siemens brand for a long time. Now I am using the Oticon Sumo DMs. It is made for people with severe hearing loss.

Maybe it took a long time to adjust to my old pair, but I just didn’t pay much attention to how long it took to get used to them as I am now. I do remember how frustrating it was not to have the volume control and the fact that they were digitals. Even though my new ones are digitals, at least I have the volume control back.

I tried to use the phone with the T-coil switch, but it was harder to hear the speaker than it was just with the microphone switch (the switch that I use most.) I will keep trying. Maybe I just have to get used to it.

The kids’ voices still takes some getting used to. They just don’t sound the same. Time. I have to give it more time. And patience. Lots of it.

Maybe this hearing aid just picks up sounds differently than the other ones. After all, it is a different brand and it is stronger than the other ones.

There is a bonus, though. I just got these hearing aids on March 2 and it took 17 days for the hearing aid batteries to die. With my old ones, I was lucky if they lasted more than 10 days. I can’t complain about that. And when it died, it just went “poof.” It was so noticeable. With all my old hearing aids, it would slowly die off and then I would either say or think, “Oh, my battery’s dead.” Most of the time the battery would be running low and I would be taking them off for the night. By morning, the hearing aid battery would have a little bit of juice left in it so then it would slowly fizz out. This hearing aid went, “ding” then poof. Instant death of a battery. (Talk about going out with a bang!!) And it died enroute to the audiologist. How ironic is that? And I didn’t have a spare battery packet with me. I usually leave a pack in my purse…and in my locker…in the junk drawer...anywhere it's handy.

I do have two packs of batteries that came with the new hearing aids. I just haven’t started stocking up so I could have them strategically placed, close at hand for immediate replacement.

The audiologist replaced the batteries for me.

Free.

Cool.

Saying My Piece

I watched the documentary, “Through Deaf Eyes” last night. I knew it was on PBS at 9:00 p.m. I also knew that PBS was on channel 3 and 10 in our area. My daughter turned to channel 3. It already started. Then at 10:00, it was over. Huh? One hour?

I turn to channel 10. It was just showing the part I just tuned in to an hour before. Oh, man!! Most of the time, when a station has multiple channels, the movies they air are on at the same time!! Aaarrrghh. Will have to wait for a repeat or get the DVD.

I am waiting for a Deafblind documentary. If the “Deaf Can,” so can the Deafblind.

Anyway, my thoughts to the last hour of the show-the part I watched.

I could relate to the mentally retarded diagnosis.

My oldest sister was about three years old. She wasn’t talking as much for her age, not like my older brothers did. So my mom took her to the doctor. He said that she was mentally retarded and may need to be institutionalized. My mom was NOT convinced. My sister knew how to tie her shoes. At the age of three! She was “all eyes” (curious). My mom went from doctor to doctor. Finally, a doctor said that she was hard-of-hearing (HOH) and recommended an audiologist.

My brother, then two, was also checked. He was HOH.

The audiologist fitted them with hearing aids and told my parents NOT to learn sign language. “Make them talk,” he said. “If they learned signs, they won’t want to learn to talk.”

Both of them immediately got some speech/auditory lessons.

My mom was pregnant at the time and my sister was born with a high bilirubin count. (It wasn’t until recently I realized I heard the word wrong-it wasn’t a “blue ribbon” count. I can laugh now.) She was given a blood transfusion and is a normal hearing-sighted person. She was close to having cerebral palsy. (When my mom visited recently, I finally told her that it wasn’t Usher-related. It was a different thing. She was convinced that Usher was in the blood. Just the DNA. If it were so, those with Usher would not be able to donate blood.)

Of course, we were misdiagnosed. The doctors thought that the etiology of our hearing problem resulted from ABO blood incapability. So that is why my mom thought that it would be related to bilirubin. My mom was saying I got jaundice, too, and that they used a different treatment with me, but I still became HOH. It wasn't until my oldest sister had problems with her vision in her twenties that we discovered Usher Syndrome was the cause.

Anyway, then I came along a year later. They were prepared. I wore hearing aids at the age of 18 months. Here is a picture of me when I was about three or four years old. These hearing aids were the kind that had wires leading to a box (processor). My mom made me vests to wear with a pocket so I could keep that box in it. When I was nine years old, I got my first behind-the-ear model. No more pulling out the earmolds when a comb caught on the wire or when I got my hand in there-to move the hair out of my way or something.

When I was 18 months old, I was put into what we jokingly called “diaper school.” (You could use that term to mean pre-school or day care, too. That would work.) At that time, I did not talk much. Once I had auditory lessons, my mom jokingly says “You never stopped talking!” It was jibber this or jabber that. Constantly. I bet there were times they wished I didn’t pick up words so fast.

I was enrolled in a public school in the next county where a lot of deaf students were sent. (We all lived a radius of 20-30 miles from that city and were bussed there.) I was segregated in a self-contained classroom with other deaf kids. We did not mainstream with the hearing kids.

We used both speech and signs.

My older sister and brother were transferred to our local parochial school in first and second grades. I was mainstreamed in a few classes in 6th and 7th grades. I remained in the deaf program till 7th grade, then I was transferred to the local parochial school in 8th grade. I was the only HOH student. It was quite an adjustment. It was not the same as being mainstreamed in 6th and 7th grades. I had interpreters. This time I was on my own. I had to use my ears and eyes. I had to pay attention. I was so shy. I couldn’t speak up. The teachers kept me in the front row. This didn’t really matter, since the teachers organized the students to sit in alphabetical order. (My maiden name started with an A.)

Then I went on to a parochial high school. During my freshman year, my brother was a senior. He was HOH, too. So I wasn’t the only HOH student in school that year. My hearing sister was a year ahead of me.

I struggled those last five years. No interpreters. (I can tell you, though, that having the teachers sign like built-in interpreters were a lot easier.) I survived. My hearing was a lot better then. Most of my struggles came from the fact that the material I was taught in the deaf programs were so easy I didn’t have to read it twice. This time it was like jumping two grades ahead and having to study harder. I didn’t like that-not after I had it so easy.

I wrote letters to deaf friends during this time. Some from the old school and some from Lion’s Camp. (At Lion's Camp I met myold peers and made new friends. Most of these kids went Wisconsin School for the Deaf (WSD), a residental school in Delevan.)

I didn’t really hang out with deaf kids again until my senior year in high school. A friend who I met at Lion's Camp and graduated from WSD was going to attend the local tech school. I got back into the Deaf world. My friend told me that Deaf people don’t like it when you don’t use ASL. I didn’t realize there was a difference. I struggle with ASL. It’s a language (though beautiful) that is hard for me to use. I am sure if I practiced at it, it would be easier. I would have to sign things like “I (or me) live in house gray” or “I (or me) drive car blue.” (Don't quote me on it, but that's what I gleaned from it.) It has French origins where the adjectives come last. I did develop a habit of saying “towel paper” instead of paper towel after being with my friend so much.


I did attend the tech college after high school. I figured I went without interpreters for the past five years, I could do without one. I only wanted notetakers.

My friend told me that the other deaf students were upset with me. Because I didn’t want a interpreter.



I dropped out within two months-my heart just wasn’t in it. I was sick of school. I had school up to my ears since I was 18 months old. I wanted to earn spending money. I wanted to work. I wanted to have fun.

I hung out with Deaf friends and attended Deaf Clubs. Some of them got married and moved away. Some got jobs in cities an hour or more away.

I got married to a hearing guy. I lost touch with a lot of them. I kept in contact mostly with one friend and I would drive the 20-30 minute drive to visit her. She also married a hearing guy. We both had oral speaking backgrounds and used Signed English or rather, SEE (Signed Exact English).

I got divorced. I got remarried-to another hearing guy. I was still very much a part of the hearing world, or at least trying to be. If truth be told, I don’t really feel like I fit in either the Deaf or the hearing world, just in-between-especially with my deteriorating vision.

My friend also got divorced.

It wasn’t until my late twenties when I could really notice that I had problems with my vision, but I still managed to hide it from others. It's a lot more noticeable now, though, and I slowly admit to people about it. I can still get by and do most things. Pride-one of the seven deadlest sins.

Because of my eyes, I limited more and more of my driving. No more driving to the next city. I went from driving an hour to visit Deaf Clubs (when I was in my early twenties), other malls, and even other night clubs to only driving locally.

I withdrew. Slowly.

My focus was my kids. My life was my family. And work.

Then the factory downsized after their merger. I knew it was time to move on. I accepted the severance package. I went back to school-the same tech college I attended almost 20 years before.

When I took my first class, I insisted that I went years without interpreters. I didn’t need one. I used the school’s FM system not knowing how much it would help. The drawback to the FM system was that I couldn’t hear what other students were saying during discussions. I could only hear the teacher, because he/she had the microphone. I tried telling the teachers to repeat what the students asked or said. They tried. They forgot easily.

I realized that my hearing was not the same as it was in high school. I had 88% speech recognition at the time. Now it is at 46%.

For the next class, I decided to try using an interpreter. Some signs were different. Some signs I learned were changed. I still understood them. Still, it was a lot easier when the teachers themselves signed. It was hard to divide my attention between the teacher and the interpreter. Talk about trying to do two things at the same time and processing them, too!! (Listening to the teacher and watching the interpreter.) Most of the time, I tried to tune out the teacher so I could concentrate on the interpreter. Sometimes I concentrated so hard on one or the other that I got “lost.”

As far as life goes, I just do what I can. Isn’t that what we all do with what we have?

Closed Captioning

A while back there were exemptions to the captioning requirements that were granted by the FCC.

What does this mean? Changes in closed captioning (CC)? That if movie makers don’t get a profit from CC, then they don’t have to put it in the movies? What? Is there a loophole?

I have watched recently released movies on DVD. I was very disappointed with the captioning. I am so glad that the regular TV shows still have the little black stripe behind the letters. It’s so much easier to read the captioning with the black background.

In the recent videos I have watched, the captions have the white lettering with nothing in the background except for the movie itself. It can blend in with the scenery or the movement of the actors affect the captioning and the colors are always changed in the background. Without that black background, it’s very distracting and makes it harder to read.

I don’t like it. I can be open to some changes, but not this one.

Don't we, the deaf/Deaf*, hard-of-hearing, and/or visually impaired, count as consumers? What's a few dollars in the multi-million dollar market of videos? Think about how many people there are out there that have hearing and/or vision problems-we may not buy or rent the videos because we can't enjoy the movies anymore. How much of the percentage of potential profit is lost because we won't watch movies anymore?

Closed captioning? It's more like "open" captioning.

Please bring back the old closed captioning in the DVDs and videos. Why mess with a good thing?

*When "Deaf " is used as a capitalized proper noun, it means those who are culturally Deaf. When "deaf" is used as a regular noun, it means that the person is deaf, but not culturally
deaf.

Deaf, proper noun: People who use primarily American Sign Language and consider themselves members of the Deaf Culture are Deaf. This differentiates them from hearing-impaired people and from those who rely on speech. Though half a million Americans are "deaf," (they neither hear nor understand speech), no one knows how many people's first language is sign. -Source: Holmes, Hannah, The Skinny on...Deaf People's Inner Voice. <http://www.discovery.com/area/skinnyon/skinnyon971128/skinnyon.html> . Discovery Communicateions, Inc., 1997.

deaf:
A medical/audiological term referring to those people who have little or no functional hearing. May also be used as a collective noun ("the deaf") to refer to people who are medically deaf but who do not necessarily identify with the Deaf community.
Deaf (with capital D):
A sociological term referring to those individuals who are medically deaf or hard of hearing who identify with and participate in the culture, society, and language of Deaf people, which is based on Sign language. Their preferred mode of communication is Sign. -Source: Terminology. <http://www.cad.ca/en/resources/terminology.asp> Canadian Association of the Deaf.

Through Deaf Eyes

If you are interested in watching a documentary called "Through Deaf Eyes" which is about Deaf life and how they view things, it will be on PBS (airing on Wednesday, March 21, at 9 p.m.)Check your local listings. It is about two hours long.

It is a 200-year journey of American Deaf history.

It will explore experiences of the Deaf in regards to family relationships, schooling, employment, and how they interact publicly with hearing people and Deaf people.

It will give you an “inside” look at how Deaf people react to the world and how they look at things.

I am not culturally Deaf. I am very much in the hearing world, but I do respect the viewpoints the Deaf have. I think that learning about Deaf history is so interesting.

It’s just too bad that there was, and perhaps still is, some oppression. (Like there is with so many other cultures because of their religion or customs.)

Sense of Humor Gone Haywire

You know these kinds of people…the ones who turn words into something literal (or should I say, technical?) or a joke/pun, such as hearing someone say, “Give me a hand,” and you hear this retort, “If I give you a hand, then I will only have one left.”

Or if someone says, “Is today Friday?” and then the smartie pants says, “All day.”

Or “She wouldn’t give me the time of day…” and the smartie pants would look at her watch and say, “It’s ten after two. There. I just gave you the time of day.”

Or if you are ordering food at a restaurant and you have a choice of baked potatoes, new potatoes, or fries. You choose “new potatoes” and tell the waitress that you certainly don’t want “old” potatoes.

Well, I am one of those smartie pants.

My kids would roll their eyes at me. They think I should be serious. I admit I deserve some “boos” here and there. It’s corny. It gets old fast. I don’t know why I am this way.

Today my oldest tells me that she cleaned out her desk at school today. She says, “Mom, I took half my desk home with me.” She points at her bulging backpack.

“How did you manage to fit half your desk in there?”

She gives me a blank look.

“Are you going to be able to get your desk back together again?” Straight face.

“Mo-om!!” Her eyes roll. With her head shaking, I hear her muttering. “Only my mom would say that. Only my mom.”

I am so baaadd. I really have to get serious...

Sign Language

I use sign language websites to brush up on my signing. Most of the signs I have learned are 30 years old. Some signs have been modified over the years.

This website is good for looking for a word you are not sure of. It's also great for beginners, too. I enjoy using this website to verify a sign for a word. You simply click on a letter at the bottom of the web page and then scroll (on the right) for the word you want to look at.

This website is also a fun one. I use the "QuizMe!" to check my knowledge. There is even a section for teaching babies sign language. I remember teaching the girls signs for 'mommy," "daddy," "more," "please," "thank you," "drink," and "milk." This enabled them to tell me what they wanted-especially at mealtimes.

I think it's important to learn the manual alphabet before learning the signs. This is because when you don't know or aren't sure of the sign for a word, you can fingerspell it. Believe me, though I know a lot of signs, I couldn't believe how rusty I was. I didn't use sign language for a long time until I went back to the tech college. A lot of the signs stayed with me, but there were times when I didn't realize a sign had been modified or updated or I just didn't know a sign for a word.

Here is a website to practice your fingerspelling.

ASL (American Sign Language) is not the same as as BSL (British Sign Language) or signs in other countries. There may be similarities, but I really haven't taken the time to compare and really look at the signs used in other countries.

I just thought that I would share the websites with those who are from the States or the UK (BSL).

I will be looking at BSL and look at the differences in ASL. It's interesting.

I want to make a note here that I am not the best at ASL as I am with SEE (Signed Exact English) or maybe even PSE (Pidgin Signed English).

I don't know when or how I will practice tactile signing. This would mean touching the other signer's hand(s) as he or she is signing. It would be another step I don't want to think about. It would be like giving in to Usher Syndrome. It's hard to explain. I know that it's best to be prepared for blindness and learn all I can, but there's still this part of me that wants to hang on to hope that a cure would be found. Maybe I am still in denial. I am continously going through the grieving process (denial, bargaining, anger, depression, and acceptance). I take steps backwards and forwards all the time. I have to keep adjusting to the disease so I start going through the process all over again. I don't just want to sit around and wait for it to take away all my sight. I don't want to give up.

Then again, it could come in handy if I did know tactile or even Braille. I have met so many wonderful and seemingly strong people who have Usher Syndrome nationwide. They are all supportive. They give helpful suggestions and share experiences. They keep me strong.

More Updates

Well, I am surprised that it's taking longer to get used to the hearing aids (HAs).

I am, for the most part, used to the environmental sounds. They are still somewhat tinny.

The voices are still lower to me with that funny "echo." I can't wait to go back to get them tweaked a bit to listen to things better.

As for the bad ear (the left side), I can hear the "ding, ding" as soon as I turn it on. I didn't mention this before. The HAs have this feature that when you first turn it on, it goes "ding, ding" then the sounds kick in. There's also a new feature that will "ding" when the battery's low. Kind of like when the smoke alarm battery gets low. Then you are more prepared to change the batteries. I like that.

Anyway, as I was saying, I can hear that start-up "ding, ding" and some sort of static, but I don't get any useful sound out of it. Sometimes that staticky (is that a word? If not, why not?) sound stays with me. Again, it's probably as good as it's gonna get. I will see what the audiologist has to say about it. Like I asid before, maybe there's another hearing aid I can try. Or maybe there's always the cochlear implant (CI).

I am always hearing sounds more, but I am not getting the location. I cannot tell which direction the sound(s) is/are coming from.

Yesterday, I made a concious note to listen to sounds as I walked to the school yesterday to walk my youngest home.

I can hear a car. I still have to look for it. It's a lot clearer, though. As usual, the newer models are quieter. (Is that better to have a quieter car if no one can hear you?)

Voices are still the hardest to understand. If they are too deep or low, I don't understand them too well. If they are too high, I don't understand them. I can't expect everyone to talk in monotonous voices, either (Snore, snore).

It makes me wish I could get the HAs adjusted earlier. I have to wait till next Monday for the tweaking.

Will keep you posted on more updates.

Deafblind or Deaf-blind?

Is deafblind a compound word? I have often thought about it. If it is not, then it should be. That way I can be more consistent about using that term without the dash.

Read this article.

And this one.

The way I look at it-it's a condition that is. by itself, unique. It is not a deafness and/or blindness thing. It's a way of life. Two different disablities wrapped up in one. If it's hyphenated, then it's lumping the deafness and blindness issue together, but separately. If it's a compound word, it's a combination of both-it's unique. A deaf person and a blind person has different coping mechanisms than a deafblind person has. Unlike a deaf person, a deafblind person cannot rely on their sight. By the same token, a blind person relies on his or her hearing. A deafblind person does not. Why should it be a hyphenated word?

I hope that somewhere down the line, it becomes consistent and corrected. We already have too many "is it one word or two words" in the English language. When you read it in context, you understand how it's meant to be used. For the compound words; however, it's just a matter of how much it's used and/or changed, I guess.

I just hope deafblind does, if it hasn't already, become used without the hyphen.

Deafblind Triplets

I missed the Dr. Phil show the other day. There was an episode about the Deafblind triplets. (I really don’t make a habit of watching all these talk shows or even soap operas, for that matter. I guess it’s a habit from all those years I worked 1st shift. )

But apparently this show was all about entertainment, for the most part. Many who are deafblind were disappointed with the show. But that’s show biz for you, huh?

They had a woman on the show that was blind since the age of 15. There wasn’t a deafblind adult offering some feedback, although she may have had some perspective to offer, but how about the deafness part? Isn’t this what it’s about? It is said that Dr. Phil spent more time discussing the parents feelings about the costs of the care of the triplets and the time they had alone. From sun-up to sun-down, their lives revolved around the triplets. Granted, it’s not an easy life.

I don’t know about you, but I would think that an adult deafblind person on the show could have offered a much better perspective for the parents.

Thanks to all parents who stick by their disabled child(ren). Again, it's not easy. I give them a lot of credit for standing by their child(ren) and making the most of the blessings God has given them.

Update on the New Hearing AIds

I am picking up environmental sounds more than I am picking up voices.

I hear more details, such as the humming of the refrigerator. I swung the back door to close it and heard it's "groan" (It creaked!) as it shut. Freaked me out. I thought someone was there.

The voices, though, are more...it's hard to describe....lowered. It's like I am hearing it at a distance, but at a lower pitch.

It may take more time to adjust the brain to "hear" with these aids. I do have that follow-up in twoo weeks. The audie may have to tweak it some more. Sometimes it takes about four "tweaking" appointments to get it just right.

My bad ear: Well, the roar is more like a long never-ending dong of a bell. Keeps vibrating, never stopping. It's on full power and I test it once in a while by turning off the other hearing aid to check if I can pick up anything with it, but....nothing. Nada. Zilch.

I am still giving it time. Sometimes it just doesn't happen overnight.

I think that these hearing aids work up to 132 Dbs (decibels). My hearing loss in that ear can go into the 110-120 Db range.

Who knows? Maybe I will try other brands until I find one that works.

Then again, there's always the Cochlear Implant, but only as a last resort.

I look back on how much I was able to hear in that ear when I was younger. It's amazing that it dropped that much.

When I found out I had Usher Syndrome, I thought that I would rather lose all my hearing than lose my eyesight. I was used to the frustrations that came with hearing loss.

Now that they are both declining, I feel like I jinxed myself.

The more my eyesight goes; the more I want to hear. But I will say it again, given a choice, I choose deafness over blindness.

Still praying for a cure for RP...