Accessibility and Creating Accessibility

Today I have two events.  The first one, The Broadway play Once, is accessible fully accessible thanks to captions by Turner Reporting and Captioning Services. Knowing there will be captions makes it stress free event.   I also watched the movie on DVD the other night so I have the story line down which I hope helps me relax a little more at the play.

Once

Once

A great addition is Kingbury Hall provides an FM assistive listening system with a neckloop.  Through that I hear more musical pitches and catch some dialog.  This makes the whole experience all the better.

Later tonight Ken and I will attend his ski patrol banquet.  This event has no accessibility other than what I fix up myself which requires thinking ahead.  I’m charging my FM system right now and we need to show up a little early with masking tape and explain the circumstances though I’ve attended the annual event enough I’m sure they remember by now.  We then tape the transmitter to the microphone.  It’s not as good as having captions but usually I hear as well as, if not better, than the hearing people there because of the bad acoustics.

FM system

Preparation

For this event I will swap out my Siemens for my old red Phonaks which have the FM receivers built in.   I had the receivers built in because my hearing before the Phonaks had FM sleeves to slip over my hearing aids and one of them had a weak connection.  It took years to figure that out.  Since it was my first FM system I thought that’s the way FM systems were, they faded in and out. The audiologist I got my hearing aids and FM system through didn’t know much about the FM system and suggested I read the instruction book. (I can’t remember if I ever took the time to do t hat.)  By some weird chance one afternoon I pushed the sleeve up into the hearing aid  and found out it stayed consistent.   That was a big ‘duh’ moment.

Phonaks with FM receivers built in.

Phonaks with FM receivers built in.

When I got my Phonaks I insisted on having an FM system built.  The hearing aid dispenser asked me a couple of times if I was sure because it would make them ‘bigger.’  If I didn’t care about having bright red hearing aids why would I care if they were a little bigger?

Accessibility can come ready made and I can also create it at the typical events.  I’ve learned a lot over the years.

Decorating My Hearing Aids

  My last pair of hearing aids were bright red and I loved them.  I loved taking them off to show people and sometimes that shocked them.  No one shows off their hearing aids…except maybe me.

Weren't they great?

Weren’t they great?

Now I have a new pair and since they weren’t in wide release at that time (last summer) I got boring beige.  You have no idea how hard it was for me to accept that after having bright red ones.

So I got red ear molds.

So I got red ear molds.

That’s helped a little and I like that people can see them in my ear and know I’m not trying to hide them but I don’t take them off to show them to others very much.  Boring, boring beige.  Blah.

In talking about this on my SayWhatClub list, another member started blinging her hearing aids and you can read her post about that here: Does Blinging Mean Acceptance. Of course it does and I like that she does this and shares her finished product.

I had such troubles getting my hearing aids adjusted and working properly that for a long time I didn’t care they were boring beige.  I didn’t feel like talking about them anyway but once they were finally working (thanks to a new set of ear molds) I became a lot happier with my hearing aids.  Now I want to show them off so I wrote my friend and asked her for help.  She sent links:

And I was off!  My mind whirled with possibilities and I started looking for nail foils and later fun tapes.

My first try was an attempt, getting used to my hearing aids.  For the first time ever, my behind the ear type of hearing aids are smaller than ever thanks to the receiver being in the ear but this makes blinging them difficult.  They are tiny and it’s hard to work around but not bad for a first try.

20150316_92The foils  had a very acrylic smell to them while applying the.  They stayed on well, too well, and only later when I re-read things did I realize this is the wrong kind to get.  They aren’t peel off kinds but I guess polish remover foils.  I can’t use that on hearing aids so I destroyed several finger nails scraping it off hoping I didn’t ruin anything. I didn’t.  I tried another set of foils I bought and they were the peel off kinds, thankfully.

Friends said they looked like candy corn.

Friends said they looked like candy corn.

Weeeeeeeee!  St. Patrick’s Day was fast approaching so I went out looking for colorful tapes.  I couldn’t find straight green and the closest I could get was white and green tape from the scrap-book section of the craft store.

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This certainly isn’t the best look for them and it clashed with my hearing aid molds.  People said it was more Christmas like instead. If I had known I was going to have this much fun decorating, I might have gotten clear molds so it wouldn’t clash so bad with other colors.  The tape peeled up faster which in a way was good since I was eager to move on.  This project did get me used to decorating on my tiny hearing aids a little more but I still had big ideas.

I post my new decoration projects to Facebook and we discussed the different tapes and duct tape came up.  I know there are many great colors and patterns on duct tape but another friend posted, “Take it from a drag queen, don’t use duct tape as it leaves a lot of goo to clean up.”   Darn but yes, I will take his advice.

Swinging back to red, I tried the red masking tape and the Duck Tape, metallic stars, I found near the yarn/tie dye section of the craft store.  (No, I don’t why they had tape there too.)  The Duck Tape sounded too much like duct tape and sure enough, it was a lot stickier than the masking tape.  In my mind I see all kind of design possibilities but it’s so hard to fit my ideas on my tiny hearing aids.

aids red and metallic

That’s more fun and it matches my molds again.  The masking tape worked pretty well, the metallic tape, not so much.  It is stickier and it’s also stiff which doesn’t allow for the contours of parts of the hearing aids.  The red is sticking well to the hearing aids but the metallic tape is coming off a week later in my hair but that only means it’s time to decorate again!  Practice, practice, practice.

Captioned Plays and Friends Connected

The hearing loss world is a small world…a small, warm and friendly world. Being involved with my local HLAA chapter and the SayWhatClub has put me in touch some of the neatest people all over. Sometimes I forget about those connections and then something comes along to remind me we are all connected.

Last November I went with four other local hard of hearing women to to see the season’s first captioned play, The Grinch. The captions allowed me to ‘hear’ everything which means I laughed when everyone else laughed feeling included. I loved the Grinch’s dark sense of humor, this wasn’t just for kids. His outfit was awesome and his gloves kept me visually entertained alone, I would love having a pair of those long, hairy green gloves. I didn’t expect to enjoy it as much as I did and I couldn’t have without the captions.

How The Grinch Stole Christmas

After the play we got together with our captionist, Vicki Turner, for dinner. The whole group talked about hearing loss issues and every day life. At some point I asked Vicki for her card because the SayWhatClub might be able to use another caption name for their conventions. I carried away that high feeling I get from being around my tribe that night.

Kingsbury Hall with Mamma Mia!

Kingsbury Hall with Mamma Mia!

Yesterday was my second captioned play of the season, Mamma Mia! with Vicki at the helm with captions to guide us through another play. Once again I found myself laughing in time with everyone else in the theater. I expected ABBA music yes but I didn’t expect the story line since I hadn’t seen or read anything about it, a woman who saw three guys in one month and wound up pregnant? In the play Donna’s daughter is getting married and she knows nothing of her father. So the daughter gets ahold of her mother’s diary to find three names and invites them all to the wedding without her mother’s knowledge. I followed the story thanks to the accessibility of captions once again.

Vicki Turner

Vicki Turner

Not only did we have captions but a friend advocated for assistive listening devices for us and we each received a powerful neckloop from Listen Tech to try out. This time I could hear the music better and more of the words especially the male voices which added to the joy of the play. Although I could understand more than usual, I depended on the captions to carry me through the jokes and song lyrics. It creates a warm, welcome feeling when the theater wants us to hear and understand the play like anyone else.

During a slow song with little action I found myself watching Vicki instead of watching the play or captions. She sat straight up, leaning toward her laptop with fingers on her laptop. She appeared to be timing the captions to the play the whole time. Her stenography machine sat off to the side unused. That’s why I could laugh in time with everyone else. Usually with captions there’s a short delay but not this way. The song ended and I went back to the play, who is going to be the father? I won’t ruin it for you.

We all went to dinner afterward, which is as good as going to the show, and I had more time to talk to Vicki this time. The plays are scripted into her computer and most of the time she is timing the captions to the play. I asked her if they ever went off script and yes they do sometimes, like she had to add an announcement with her stenography machine about the university art grants before Mamma Mia! started. The Grinch goes off into his own dialogue while wishing every one a merry Christmas and she knows this so she’s prepared when it happens. If she hasn’t seen the show, she will watch it one or two times before captioning it.

She travels all over captioning plays and her next one will be in Sacramento. She will be back in Salt Lake for us to caption “Once” and I will see her again in San Antonio in May. That’s where the small, hard of hearing world comes into play. She went on vacation to New Zealand and asked a Facebook only friend, where to stay and what to see and the FB friend, with a big heart, invited her to stay with her. This FB friend is a part of the SayWhatClub and she talked about the upcoming convention. Vicki remembered me, contacted my boss, who put her in touch with me via email. Vicki wanted to offer her services to have a captioned play, Newsies a Disney musical, at the Majestic theater while we are there. And it happened! We’re going to have a captioned play while in San Antonio.

Sometimes I get bummed out about hearing loss issues, then something like this happens and it warms my heart all over again. Thank you Vicki for getting into captioning and for all the things you do for the hard of hearing community. It’s truly appreciated.

She may be able to help you caption a Broadway play in your area. If you want to learn more about her, go to http://www.turnerreporting-captioning.com.

HB112 at the Capitol

The Utah State Capitol

The Utah State Capitol

This morning I went to the state Capitol to show support of HB112 which went before a senate committee this morning.  This bill would make all hearing instrument specialists tell their clients about assistive listening technology available when people come in to buy hearing aids.  So many people end up paying big bucks for basic hearing aids without all the options and it drives me crazy.  This bill should help better  inform people right off the bat.  The bill passed the committee this morning and will move on to the Senate floor within the next ten days.

I’ve learned to advocate for myself personally, slowly but surely over the last 6 years especially.  That’s because I started going to local HLAA meetings and hanging out with other people who already advocated for themselves.  Now I’m learning to advocate, slowly but surely, on a bigger level and I’m learning by hanging out with these lovely ladies.

Show of support for HB112 at the Capitol this morning.

Show of support for HB112 at the Capitol this morning.

It is exciting to watch HB112 and learn the workings of getting a bill like this passed.  I’m gaining more knowledge.

The Cat

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Meet Squeaker. He’s my constant companion while I’m home and he’s claims this spot on my desk. He’s catching the afternoon sun while he keeps an eye on me.
Why is he named Squeaker? We picked him up from the vet as a kitten. After a week or so I never heard a proper meow out of him so he became Squeaker. All 3 of my kids accepted his name without question.
Months later I brought up why Squeaker earned his name and all 3 kids looked at me with blank faces. “What,” I asked. One of them explained his meow was fine, maybe it was my hearing? Geeze! Too late to change his name now. At least he talks enough the name kinda fits.
Since he is usually around me, he acts as my ears. He hears the back door (I don’t), lifting his head and looking that way. I know when he hears my 4 year old grandson enter the house too. He’s all claws scritching across the desk surface bunching the towel up against the window. He makes it under the bed well before my grandson gets to my office.
At night, Squeaker generally sleeps next to me. Sometimes I think I hear weird noises and he keeps his head down so I know it’s a common noise and go back to sleep. If he lifts his head and looks after a strange sound, I will get up to explore while he follows me.
He’s my faithful sidekick and my best ever cat. He’s ten years old and I’m hoping I get another ten years with him.

Coming soon…

It’s a quick post tonight. It’s something I want to do, no, have to do. I think about about my blog all the time and I have things I want to share but I’ve run out if time to write. My blog was/is a passion and something I always enjoyed doing never feeling I had to do it. I miss it. I miss sharing.
I’m out of balance and I mean to correct it soon. I have over volunteered myself and I didn’t realize how stressed I was becoming…but my body has a way of showing me. When cold sores pop up it’s a warning, nasty little reminders but that’s what it takes to get my attention I guess. I want to do it all but reality says I can’t.
It will take me a few months to fulfill my responsibilities but then I will take my outgoing energy and bring it back in. There’s other things I want to accomplish and have wanted to accomplish for a long time. This post is mainly a promise to set myself on the path again.
In the meantime, here’s a picture of me that has nothing to do with hearing loss. One taken a few weeks ago on the Colorado River about 9 miles below Hoover Dam. We took the canoe upriver from Willow Beach. Blue skies. Green or blue water depending on you look at it. Me relaxed and enjoying the great outdoors.

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Correctly Fitted Hearing Aid Molds Make a Big Difference

Who knew hearing aids could were so important? Most all of us have experienced old, cracked tubes which reduce hearing aid output and moisture in the tubes can play havoc with our hearing aids too. Other than that, I think we take our hearing aid molds for granted but lately I’ve learned bad fitting ear molds can make or break or a hearing aid’s potential.

Last August I received new hearing aids, Siemens Carats and I’ve posted some about my problems with them. One of the biggest problems was bad fitting ear molds made my Siemens. Right from the start my ear molds kept working out of my ear and I kept having to push them back in. Then I noticed if I pushed them in and held them in tightly, I heard differently…better. So I went back to my audiologist who ordered another pair and they didn’t fit well either so he suggested using fingernail polish to thicken it up a little. I applied 2 coats of red fingernail polish(my favorite color) and it helped some. I really liked having red mold since I couldn’t have red hearing aids. My new pair of ear molds came in with the same problem so I painted them too.

Other problems included a software update that crashed my t-coil program along with making all my programs sound the same. I continued to have feedback problems when going to hug people, which made me pull back. Who likes to hear squealing hearing aids? There were troubles with the bluetooth and not hearing right through that program. There’s a huge disappointment in the iPhone app for the EasyTek which at first seemed cool but ended up feeling more like a tease. (I hardly ever open that up anymore.)  Then my ears started getting sore on the inside from constantly pushing them back in so I let my audi know I just about hated these new hearing aids. This is my fifth pair of hearing aids and the only ones I haven’t had a ‘wow’ factor when getting new hearing aids. I couldn’t recommend them to anyone and didn’t feel like talking about them. I don’t like being a complainer so I quit writing about them too.  

My audiologist listened to my complaints and offered to order me new hearing aid molds from another company. We agreed on the soft rubbery ones which I remember working with my Widex hearing aids 10 or so years ago when they had to crank up the power after a big drop in hearing. He knows I like red so he ordered me red hearing aid molds too.

We switched out the hard plastic molds for the rubbery, soft, red molds a couple of weeks ago. There was a little of the stuffed up sound that I remembered with the old molds back when but it wasn’t as bad because there is a little vent hole. They felt comfortable right away and had a snug fit.

Now I have to back up a little. With my Phonak Naidas my best word discrimination score was 50%. With the Siemens I had 60% right away but with all the troubles I had, I couldn’t get excited. With the new, better fitting rubbery molds my word discrimination shot up to 72%. That’s a huge jump! I haven’t seen a 72% word discrimination score in years. Six months later I can finally see what my audi kept bragging about with these hearing aids. They have a lot of potential with a proper fitting ear mold.

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Now as I watch tv, I pick up words here and there. That hasn’t happened in years either. I noticed in a classroom setting the other day I could look down and take notes and still understand most of what was being said. Finally, after 6 months, I get my wow factor and I’m excited about wearing them again.

We worked out a few more bugs on the programs adding a specific bluetooth program to my aids because last week I realized I could not understand my mom on the phone without captions. My mom has a strong, clear voice and usually I can understand her above anyone else. Not through the bluetooth program and I even tried the bass from the iPhone app (another tease, it wouldn’t let me). Last night I called my mom as a test and talked to her for over an hour without captions and only needed a repeat about 5 times. Another major improvement.

I wouldn’t trade my audiologist for anything. He’s been very patient through the whole thing and he can program like no audi I’ve ever known. Maybe now I can start going back every 3 months or so instead 2 or 3 times a month. That would sure be nice. I have one more visit first. My right ear mold works out still but not as bad as with the hard plastic kind. I’m pushing it in maybe 3 times a day compared to 3 times an hour. He’s making me a thicker mold on that side to help keep it in. I must have the strongest ear muscles in the world.