A Hearing Loss & Late Deafened Blog

How I joined the Hard of Hearing club

In Hearing aids, Hearing Loss, Life on April 18, 2014 at 5:56 pm

By: Sara Lundquist

 I thought I would share the weekend/week that I lost hearing.  I haven’t talked about this to very many people but I have met some great people in real life and on the computer, SWC, that I see that it isn’t something to hide or pretend it isn’t there it is who I am and that means it is ok.

I was at a TaeKwonDo tournament in Southern MN with my family.  I felt fine that day and had a great time.  That night we went to my in-laws house and we watched a movie on TV.  No big deal just hanging out in the living room.  Well I couldn’t hear the words on the TV.  I could hear an occasional song or loud noises but not dialog from the movie.  I grabbed the remote and turned it up and everyone complained how loud it was and turned it back down.  I just couldn’t understand what was happening so I went to bed thinking I was getting an ear infection and my ears were probably filled with fluid.  Next day was church and again I noticed I really couldn’t hear well at all.  But I didn’t want to say anything to anyone.  I smiled and tried to answer questions but I was more then ready to go home when the service was done.  That night my husband asked me to sit down at the table.  He looked right at me and asked if I could hear ok.  I played dumb and asked why.  He said I answered questions wrong at church like I hadn’t heard what the person had said to me.  I just said that maybe and I was probably getting sick.  Well the next day Monday is what freaked me out.  This is not typical behavior for me, I am not one to freak out.  I was to substitute teach for just a quick 30 minute job at the school.  I just had to read to some young kids.  I love to read so thought this will be fun and will be quick.  I went in and started reading and it was going good till all the kids wanted to ask questions at once.  I couldn’t make out what they were saying and I think I started having a panic attack.  I was able to leave right about that time.  I went out to the vehicle and just sat and couldn’t do anything.  I was in shock.  I grabbed my phone and made a call for the doctor to get my hearing checked.

Next day I got in and had my hearing checked.  It showed a mild/moderate mixed loss. It was a pretty basic test, think elementary school hearing and vision tests.   Mixed meaning I have so much scar tissue in my ear from countless surgeries, infections, burst ear drums that I have a conductive loss.  I also have a sensorineural loss which is what I am guessing came on very sudden. I go home with really no answers but get a call to go to an audiologist a couple days later in a neighboring town.  I went and had more tests then the first time in fact over an hour I was in the booth having test after test.  I was found to have a mixed loss that was down into moderate hearing loss in the frequencies where speech is most important.  I wasn’t getting sick, or crazy I had entered a club of Hard of Hearing.

The audiologist was very nice and explained how hearing aids can’t bring that hearing back to perfect but it would make a big difference.  So I ordered my Phonak hearing aid (only 1 needed to save up for number 2). I laid pretty low the next week or so.  I didn’t work at the school or really see anyone.  I got the hearing aid and the first thing I noticed was I heard the clock on the wall.  I hadn’t heard that when I went into the office.  I have had to have the hearing tweaked a few times and the levels upped a few times also.  My biggest difficulty is in a large group understanding someone talking to me or someone talking soft to me.  I need to work on lip reading for those situations. I have just received the second hearing aid for my left ear.  I hopefully can feel a little more balanced now.  I didn’t notice as much as a big WOW moment with this second aid.  It will need to be upped I have an appt in a couple weeks.  My left ear isn’t as bad as my right so maybe that factored into it also.  Just glad to have both.

Everyday I feel a little bit better about the situation.  It was another thing in life you don’t plan for and don’t anticipate.  I have learned so much from the Say What Club.  I am glad to be able to share my start of a new chapter in my life.

Everyone has a story we just have to let go of our fear of the unknown and let it be known.  You will be surprised how many people have the same one.

A Request for CART, again

In advocating, CART on April 17, 2014 at 11:19 pm

 By Chelle George

  On February 10th, I wrote my writing center, which is sponsored by the local community college, requesting CART for a May workshop they are offering.  (Click HERE to read my post about that.)    I heard back from the manager of the center a few days later saying it would take time to get things together and I might hear from others in the process.

A few weeks ago, I started wondering when I might hear from these other people since it’s now a month away.  I emailed once again and got a very confused reply which said something about “placing me.”  Did that mean CART would be available, I asked?  A few more days have passed and no word.  Am I getting the run around in the hopes I forget about it or won’t follow through?  I’m not going to let that happen!

Tonight, I sat down and sent another email and this time I included the college disability center.  I’m don’t want to be threatening at all but I am going to push my point.  If I don’t, who will????  We, the hard of hearing, deserve equal access.

accommodations

Here is the email I sent out (minus names and specific details)….

 On February 10, I wrote the college writing center asking for accommodations for the upcoming workshop on May 1 and 8.  I wrote way back then so there’d be enough time to prepare for CART (real time captioning) for the workshop.  The last workshop I attended I could not participate in it even though I brought my personal FM system and asked for an outline.  The acoustics in the room were so terrible it wrecked whatever advantage my hearing instruments gave me.  (My original request will be sent after this email.) 

  I moved away for a bit and now that I have moved back, I’d like to attend your workshop but I need accommodations to do so.  When I wrote in early February, I had hoped this would be resolved by now but I can’t help but feel I’m getting the run around after the last confusing email.  I’d like to think an interpreter would be provided if a Deaf person came in.  I’m not Deaf unfortunately and not fluent in sign language which is why I requested CART.
  I know the college provides CART services so I’m wondering why this is such a problem.  It’s also mind boggling that the center offers a publication on human rights inviting people to write for it and another workshop/writing group on writing for change. It would seem the center could be open to change and accommodations.
  Their mission statement reads: “The Writing Center supports, motivates and educates people of all abilities and education backgrounds who want to use writing for practical needs, civic engagement and personal expression.”  Does this not include people with disabilities?  With hearing loss?  Is there equal access here?
  My first email brings up the American Disabilities Act (ADA) which you may re-read after this.  My goal here is not to be mean, to fight or argue.  I simply want to attend the workshop with equal access.   As soon as I know I will be accommodated, I will come down to pay the fee.
  Thank you for your time.
Questions?
 What do you think?
Looking at it I see I should have waited a day to send it so I could polish it up a bit more but I didn’t want to let another day go by.  I think I made my point.  I hope there’s a positive update to post soon.

Life Without Hearing Aids

In Assistive Listening Devices, Hearing aids on April 14, 2014 at 10:23 pm

by Chelle George

A few weeks ago my left hearing aid quit working. It’s four years old as of last January and the warranty ran out two years ago. According to my audiologist office, it’s going to cost at least $300 to fix it with a warning that it could be more. For this low income girl, that’s a lot so I made an appointment with my state vocational rehabilitation office. My goal, to send both hearing aids in, one for fixing and the other for conditioning.

People are telling me, “Get new ones!” I really don’t want to. I really like my bright red hearing aids, these hearing aids have a FM receiver built into them so I didn’t have to mess with sleeves/boots. My pretty red hearing aids are only 4 years old.

Then there’s an echo of audiologists saying, “They are only good for about 5 years anyway.” Really, why? “There’s big improvements in technology within that amount of time.” Is it really that big of a difference from what I have now? “Oh yeah, I never have clients say their old hearing aids were better. They always like the sound better with new hearing aids.”

In my experience going from analog hearing aids to digital was a HUGE deal. I will never look back at analog. Until that big of a change comes around again, I can’t see that there will be that big of a difference again. There might be nifty new programs but I have 4 different ones now and I don’t know what else I could possibly want except perfect hearing again.

And my hearing aids were $4,500. That’s a lot of money to shell out and it doesn’t feel like so long ago that I paid for these. I know people who have had their hearing aids for 10 years and they are still happy. I want these hearing aids longer than four freaking years. The longest I’ve had a pair of hearing aids was 6 years and those probably would have lasted longer except one got run over multiple times at the long row of drive style mailboxes. (Took a phone call in the car when cell phones weren’t compatible with hearing aids then forgot it was in my lap when I jumped out of my low to the ground car to check mail.)

That was in 2005 and the last time I had to go without working aids. I worked in a salon and I tried wearing the remaining hearing aid but it felt so lopsided it wasn’t that helpful. I spent around two months not talking while my blow-drying hair, spinning people in my chair to face me or learning to read lips in the mirror. My clients had to repeat often. It was awkward and forced me to be upfront with everyone about my hearing loss. We were all relieved when I got my new, first pair of digital hearing aids. After that, I had no problem telling people I couldn’t hear well.

This time I work in the state Deaf and Hard of Hearing Center which is the most accommodating environment I can possibly work in. I thought I’d be okay without hearing aids as I didn’t wear them all the time anyway but I find myself missing them. A lot. I work at different health fairs around the valley sharing resources the state offers for those who are Deaf or hard of hearing and it involves a lot of talking even if people are in denial about their hearing loss. I thought I’d get by with lip reading and my remaining hearing. Nope! It was tough because some people just can’t look at me while they talk and others don’t move their lips enough. Luckily our table display offers ALDs such as the PockeTalker, Mino and Duett for people to try out. I grabbed the PockeTalker and started using it. The chatting proceeded a lot smoother after that and it also got other people trying it out. Thank goodness for ALDs!

PockeTalker

PockeTalker

Then I went to my first meeting without hearing aids in a long time. I had an ache in my chest as I walked in. I knew I was going to miss my hearing aids here too. The meeting was at work and a FM listening system is available but this time they had a new system in place with fabulous neck loops…and I couldn’t use them. I was able to plug in my earbuds but it wasn’t the same. I survived the meeting missing some conversation all together and concentrating so much that two hours later I was tired. I wanted nothing more than a glass of wine and to go to bed after.

Comfort Contego

Comfort Contego

With my boyfriend’s ski patrol banquet dinner coming up at the end of the week I started to worry about not being able to hear. I talked to my boss, the hard of hearing specialist, about borrowing one of their FM systems to use so I could hear the speeches. I have my own personal FM system I used in the past for this event but it’s a one piece deal that won’t work without my hearing aids. She suggested the Comfort Contego with two pieces and let me borrow it for the duration of my hearing-aid-less-ness. At the banquet, we arrived early to set it up, using medical tape (less sticky) we taped it to the microphone. Viola! I could hear the speakers with my normal 50% word discrimination which was nice because my boyfriend received a couple of awards. The system cut in and out often and there is no treble/bass adjustment. I need more treble so it all had the same deep pitch. I don’t want to complain too much though. It helped, I got through the speeches and I felt connected to the event.

Patroller of the Year

Patroller of the Year award for my boyfriend.

Today I sat through another three hour health fair. This time I used the Contego unit instead of the PockeTalker. It was held in the gym which is usually horrible acoustics but they had acoustic panels on the wall cutting some of the reverberation, hooray! I was so happy to see them. Once again, it presented plenty of opportunity to talk about ALDs.

Acoustic panels

Acoustic panels

comfort contego and me

The last two weeks made me realize how much I depend on my hearing aids, how much I need them and how much they help. Having something programmed specifically to my hearing loss makes a big difference in my understanding speech. I wrongly thought I’d get by fine without them but now I want them back. Using a neck loop to headphones makes for even better hearing and I miss it.

Sigh. My appointment isn’t until the 28th of this month and that’s just to get things started. After that, it’s waiting for approval and if I get approval then sending my hearing aids off to get fixed. It’s a process. I’m going to be one very happy girl to get them back.

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