Tuesday, June 22, 2010

HLAA 2010 in Milwaukee

Hotel-Room With a View (Lake Michigan)

Wednesday, June 16-(the day before)

I had gotten a crash course on cellphone usage. I never used a cellphone before. The landline phone was much better for me to hear with than the cellphone is. Angel added all the phone numbers for me.

So, the most I remember is how to send text, just barely.

I was done packing and was ready to head out to Milwaukee for the HLAA (Hearing Loss Association of America) Convention... We got there about a half-hour earlier than I predicted. I tried calling one of my roommates but get dead air.

I try texting one of my roommates to let her know. So I went through all the steps I thought I needed to do to before texting: Push button for menu, go to the icon with the envelope on it, hit “options”, scroll to “contacts” then choose the name you want. I was proud of myself. Then, I get numbers. What? I want to text letters. Nope, numbers…I close the page and start over. Again, I get numbers. What am I doing wrong? OOOOh, that’s the phone number. I have to scroll down to move to the message box. Okay. (I am so glad I figured that out.)

So as I unpacked some shirts and hung them in the closet, I would text back and forth:

Me: In hotel room.

Roomie: Who r u? (Did she forget to add my phone number?)

Me: Shari.

R00mie: I don’t know u. (Hmm, is she messing with me?)

I was proud of myself. I got the texting part down pat. Now...how do I make a direct voice cal? I tried to remember, but my brain was overloaded so I just continue hanging shirts up.
I hear the door open. In comes in my roommates M&M (both have names that start with “M” and they are just as sweet.) I don’t know if I should name names so I’ll call them M1 and M2).) We have been contacting each other for a few years, and one just recently. So it was great to meet them in person. Having Usher Syndrome, we had common ground, though their vision was better than mine.

I ask M1 if she got my text messages. She shakes her head and says no, but she did get the voice call that was "dead air". I repeat the number to her. The last two numbers were off. Somehow, when I tried to type a message and got all the numbers on the phone number section, I must have chunged the number and saved it. I start cracking up because I’m thinking, “OMG!!” because the person who got my texts must really thought I was a prank or something.

You just had to see the humor in it."In hotel room...." (red face)

So we talk a bit then the housekeeper wants to clean up and restock the bathroom with towels and the bed with clean sheets. My roommates were already there for one day. M1 is from the south so I had to talk slower, but it was not easy to remember to do that.

So then we head back to the room and talk a bit more then we leave to meet with a bunch of others with Usher Syndrome (most of us were online friends for a long time) and some brought along their spouses as SSPs (support service provider-more or less like a personal guide), even the keynote speaker (who had Ushers and delivered a great speech the next night) came, which was great. We shared our experiences about our Usher Syndrome diagnoses.

Afterward, we headed out to the Anchorage, a nice restaurant in Milwaukee. We ate outside. We had a lot of natural sunlight and it was very quiet and perfect for us. Most restaurants are noisy and dark. There were about three or four conversations going on at the same time between us, but I managed.

Then some of us headed out to a hotel room that had a lot of people in it and it was shadowy and NOISY. It was hard to be sociable when I had a hard time hearing anything, though some were easy to understand.

Soon it was time for bed.


I got up early and showered and got dressed. I tried texting my oldest daughter because I knew she needed to get up in time to catch the bus for band camp. Like I’ve always said to her when I woke her up for school: Wakey wakey. Her text message back to me was “Yeah, yeah, good morning”. At least I didn’t have to worry about her oversleeping.

The hotel is HUGE and you had to either cross the street or a skywalk to get to another part of the hotel where the main convention was (the exhibit hall and the workshops) and it was just A-MAZE-ING. I was constantly A-MAZED; I was getting lost and making all kinds of wrong turns before I started getting used to some of the routes to and from the skywalk, along with some people who would help me find where I wanted to go. I would later notice signs with arrows above me that directed where certain areas were.

I had a Team Meeting with Cochlear. I volunteered to help out at the exhibit; I was looking forward to it. Breakfast was free. They served fruit, yogurt, and donuts and also offered some orange juice, coffee, and tea.

I was given three shirts to wear for each day I would volunteer. I got to keep them, too. (Since two of them were the same color, I gave one to one of my roommates when I packed up my bags to leave because she loves her Cochlear implants!!) We all had to introduce ourselves and a few of the Cochlear staff spoke about the exhibit, the products, and what to do.

At the exhibit hall, all the vendors were getting ready to show their products, from hearing aids to services and products for the hard-of-hearing and d/Deaf (the capital “D” is for those in the Deaf culture) to any devices that would accommodate hearing loss, such as CapTel phones (CapTel is a phone that had a screen on it that was captioned so you don't miss anything in a phone conversation), cellphones, interpreting services, and hearing dog services.

At the Cochlear booth I had a few people come up to me, but I had such a hard time understanding them and luckily a staffer was nearby to take over. I felt like I wasn’t much help, but I continued to put a smile on my face.

Two of my online friends I met through CI blogs were there and we said “hi”. I guess I was easy to find with Lancelot, my cane, standing guard next to me as I held it in my hand like a stick.

I went to a couple of workshops. I would bump into a few of the “Usherites” and their spouses in the rooms or in the hallways. Everyone there, coming and going, always greeted me with a smile and some started a conversation with me. We all had one thing in common: We had hearing loss.

Soon, we were going to go to the opening night assembly. Some people came to the podium to speak about HLAA, hearing health, and hearing loss. As usual, all kinds of accommodations were used for everyone with different needs: Sign language interpreters (there were always two of them so they could switch off every half hour because it’s a lot of work to translate and sign for half an hour), CART (this is like a captioned report of all the things a speaker said on one big screen), and ALDs (assistive listening devices which could help you hear the speaker better because it was connected to the microphone for every listener who wore the loop).

The theme for HLAA 2010 was “Come and be Inspired” and the keynote speaker (who we met the night before) spoke about climbing the highest mountain peak in Africa (Mt. Kilimanjaro!!) and spoke about other things, including a planned trip to Peru with a special group of kids. Truly, it was an INSPIRING speech.

After than, M1 and I had to go to a Meet & Greet with all Cochlear implantees. We assembled for a group picture. I was already developing a huge headache and wanted to go to bed. I hoped I wasn’t coming down with sinusitis or something. That would NOT be good. I just wanted to sleep it off so I bowed out of a late dinner with the Cochlear staff and gave my “token” card to M2 to use for Casino Night so she could play more games if she wanted.


It was a little less hectic in the morning. My headache was gone. I didn’t know if I was caffeine-deprived the day before or what. I ate a breakfast bar and some diet cola I smuggled in my suitcase to lessen the expenses of the weekend.

This time I brought along my Zoomlink, my personal ALD/FM system and turned it on just before the Exhibit Hall opened.

I absolutely fell in love with my Zoomlink again. Lately I had been using it only for church and other assembly-type situations and the theater.

I was hearing people better. The hall can be noisy with so many people milling around looking, stopping, talking at the booths and ordering food at a concession stand, which is basically like a quickie food place in a mall. I wore the Zoomlink like a loop around my neck (instead of the speaker) and anyone who came up to me was picked up by the mic in my Zoomlink. Yay!!

I got to ask a lot of questions about my Cochlear Freedom and the latest model, the Nucleus 5. I am SO looking forward to getting the Nucleus 5 when I have my next surgery. It will be great. I had a chance to try it on and see how it felt. Much lighter and smaller. (I hope the insurance doesn’t make me wait too long for an approval for the second implant….)

I took off after my shift was over and went to another workshop. I had an interview at 4:15 and after the workshop ended at 3:30, I decided to just find the place where the interview was to take place.

The Hilton Hotel is an A-MAZE-ING place. It’s literally A MAZE. You can get lost very easily, many turns and corners to make to get from one place to another. So, I wanted to have enough time to find the place.

(A month or so ago, I got an email about a survey for research purposes only. I am all for research. I recently did a research on how the CI/HA combo worked for me. Being bimodular was only just a tad more helpful for me than with just the CI alone.)

This research was generally more about my experiences with hearing loss and my feelings about getting a CI and what I was feeling and thinking about before, during, and after the CI evaluation and the surgery. Yes, a perk was getting some “moola” for my time. I wouldn’t mind doing more surveys.

I was going to make my way back to the exhibit, but it was shutting down for the day and as I was making my way back to the hotel (it was divided on different blocks and you could use a skywalk in lieu of crossing the street and I, of course, would use the skywalk all the time), I ran into “A”, one of the Oochlear staff asking me if I wanted to go to the Harley Davidson Museum. When I first signed up to attend the convention, I decided not to pay the extra cost to go and Cochlear had an extra ticket for me because I was a volunteer. So, I was able to join my roommates to the museum after all.
Here are a couple of pictures taken at the Harley-Davidson Museum: Me on a Hog (note that I am wearing a Cochlear shirt!!!) and "Speedy" a wagon/trailer.

Again, I was treated like royalty. They just guided me around. “A” sat with me on the bus on the way to the museum. “A” is very bubbly and friendly and helpful. She must be about 5’ tall so often when I hear her call my name, I’d scan left to right but don’t see anyone because she’s way under my nose. She’d just laugh about her height.

Once inside the museum, Immediately, I noticed “Cochlear” logos all over the place. Cochlear was sponsoring this event. I was guided to the table where my roomies were and everyone was taking turns posing on a Harley motorcycle for pictures.

Some of the staff were exclaiming about how great my interview/survey went. The researchers/surveyers were from Cochlear!!
Below is a picture of my roomies and me.

The food was being served buffet style. Once again, A and another Cochlear staff (one of the surveyors who was about 6’-the irony of the tallest and shortest of the staff-leading me and guiding me to the buffet and helping fill my plate and carrying it back to my table. (Thank you, girls.)

I had my Zoomlink on ALL day. It died in the middle of dinner. My Zoomlink takes about two hours to charge up and it can be used for up to 10 hours. It must have been aobut 8 ½ hours.

Soon, we headed out to the museum part and looked at all the early motorcycles.

Suddenly, I got some static coming from the Zoomlink. Was I getting a little “juice” from the Zoomlink? I look at it and it’s off, dead. So then I turned off the receiver in the bottom of my hearing aid, but couldn’t turn it off my CI processor. There was no switch for it and I certainly didn’t want to turn off the CI completely or I wouldn’t hear anything. Then, I heard a speaker. Was the section of the museum I was in have a recording talking about the motorcycles? I could hear, “This is the army….I am to your left…to your left” and on and on. I told M2 that I must be picking up a signal. Someone else had a Zoomlink. Just because my Zoomlink needed to be recharged didn’t mean my receivers wouldn’t pick it up from another one. I heard, “This is the 1936….this is the 1933…” I said to M2 that knew that this person was talking to someone who may have Usher or at least didn’t see well and I wanted to find the 1933 bike.

When we got to the bike, a tall, thin man was standing in front of the plaque of the bike and his wife was taking pictures of it. She was indeed wearing the Zoomlink. I told them abut how I picked it up and could hear her and that I couldn’t turn it off but had to find them and meet them. We had a bond, you know, because of the Usher’s. We chattered a bit and then parted.

I was glad the weren’t “whispering sweet SOMETHINGS in my ear as they talked. I told M2 that I was glad they weren’t lovey-dovey. LOL. I definitely would have just had no choice but turn off my processor because I wasn’t carrying my other battery rack with me.


There was a workshop I wanted to attend that started at 8:30 a.m. and I first stopped to borrow an ALD that was being passed out because I wanted to save my charge on my Zoomlink.

The ENT who did my CI surgery was gong to be presenting a workshop about CIs at the same time as the other workshop I wanted to attend, which I was a little late for, but better later than never.

So then, after the workshop was over, I decided to pop into the room where the ENT was and just say “hi” and tell him how my CI was doing for me and that I was waiting to hear from the insurance company about a second implant and that he WAS going to do the second implant, right? He nods and is smiling about it. (And I thought for sure he wouldn’t remember me because he must have hundreds of patients-how can he remember them all??)

So then I am volunteering at the booth again and another long time online friend came to visit and chat with me a bit. She and I went through the insurance wait (hers was approved and mine was denied, but appealed) and then our surgeries were one day apart and we just kept in contact, sharing our CI successes as well as our family goings-on and basically kept each other up to date. I was glad to see her and her family, too.

After my shift was over, I proceeded to order a grilled chicken sandwich and another Cochlear staff invited me to eat with her. She told me that my meals were expenses paid and save the receipts. (I had no idea. Wow, the perks of volunteering. :) -I didn't have receipts, though. )

I had intended to attend one more workshop about the tips of CIs and she was the presenter. Cool. Four panelists shared their experiences with hearing loss and getting a CI. (Made me think of my interview of how I shared my experiences.) One young man had interesting similarities to my experiences (once the CI was adapted, the hearing aid ear seemed to not work so well anymore) and then the opposite entrance in the Deaf world-my was in elementary years till I was mainstreamed in 8th grade and high school. He was mainstreamed all through school and then learned sign language in college at NTID (National Technical Institute for the Deaf in Rochester, NY). I shared with him about my schooling history and that it was a separate classroom from the hearing kids and he asked, “Was it self-contained?” and I nod yes, surprised. Then he added, “Did you ride a short bus?” Again, yes, I nod. It was nice talking with him. It was so cool to share like that.

Soon we are getting ready for the Oktoberfest banquet. We had assigned seating and four of us with Usher got to sit at the same table. Waiters with WHITE gloves serving us. I never experienced this before. This must be what it was like to be super rich, eh? We had bread sticks. A man with Usher’s (another one with the first letter “M” in his name) handed me the bread basket and I put my hand over it to take one out and he says in a stern voice that made my heart stop, “Why did YOU put your hands all over MY bread?” I froze. I looked at the bread basket again and it certainly looked like it was supposed to be handed around. He then laughs and says his friend does that to him. Whew.

Then we were served a spinach salad with various toppings-raspberries, blue cheese, some kind of nut, and some other item I couldn’t determine by taste. Then we were served scalloped potatoes (or something similar to it), broccoli, and some kind of chicken that was stuffed into what looked like a large dinner roll. I didn’t know if it was like a chicken sandwich or not. Dessert was some kind of apple topping on a round, thick crust (similar to the bottom of a hamburger bun). It was very good.

Some more speakers came on and then there was polka dancing.


We had a free breakfast at the Awards Banquet. There were orange slices, strawberries, and watermelon; there were also some muffins. Mmm. Then we had some hashbrowns and omelets with sausages on the side.
M1 was going to receive the Spirit of HLAA 2010 Award. And I was happy for her. She is a true champion of encouragement, recruiting people to anything involving hearing loss and low vision. I can see why she was chosen to receive it.

Every time she spotted a person with a cane;, it was like a magnet, drawing her to them and she’d talk about Usher and other blinding causes that had nothing to do with Usher.(Some people can have low vision and have hearing loss that has other etiologies.)

I had a great time meeting long time online friends and I thank the Cochlear staff for their help and accommodating me.

The End

Monday, June 07, 2010

Back In Jail

Er…the sound booth. Actually, the sound booth at this center isn’t as small as others are so it didn’t feel like “jail".

Went to get a second evaluation for the other ear to see if it was a candidate for the cochlear implant (CI).

Tests galore (single word, sentences, sentences with noise in the background, sentences with a million conversations going on in the background, and on top of that, a whopper of a challenge-different voices (male and female-deep, high, “normal”, etc.). That was hard, but more realistic, too. It’s like being in a group and listening to them all speak you know?

I was given an audiogram again (beeps and tweets) and had to raise my hand every time I heard something.

It took two hours. Hubs expected this so he brought along newspapers to catch up on his reading and opted to sit out in the waiting room rather than the audie’s office because the chairs were more comfortable. He did finish all his reading, btw. LOL.

They tested my unimplanted ear unaided with the audiogram and aided with the tests.

The end result was that ol’ Petey (my first implant) is going to have a new baby brother, “Repeat” after all. .

Paperwork on the candidacy will be submitted to the insurance company for approval for the cochlear implant.

Nucleus 5 from Cochlear

While I wait for the insurance approval (again), I’ll look at the packet Cochlear sent me regarding the new Nucleus 5 processor. I am not sure about the remote, but I guess I'll mange. The processor colors are mostly hair color color themed (black, white, sand, brown, and charcoal), but look at the processors covers that can be put on to express oneself. Cool.

For some or most, the “better ear” (which for me is the unimplanted ear because it’s the one I was hearing with before the worse ear was implanted) does even better with an implant. If that’s the case, the hearing level with the second implant could be even higher than the 20-25 decibel average I have now. Of course, first things first: one step at a time…insurance approval, then surgery, then “keeping expectations low”.

On the home front: Kids are out of school now. Hoping to keep the kids busy and keep them out of trouble. Angel's got Volleyball Day Camp, Jump Rope Day Camp (cool, eh?), library summer reading and activities program, and swimming. Flare's a color guard in Vanguard for the marching band and will be busy half this summer rehearsing and participating in parades and working on getting her driver's license by the end of the summer. Go, kids!!!