Yes, I'm Still Here!

Oh, my ... LONG time no post! :o0 ... So much has happened in my life since last Oct.! ... Let's see ...

I love my BTE – I had Jennifer1 set all of the programs to 80 IDR, as that range still works the best for me. The tape didn’t work at all to hold the processor on my ear. Jennifer gave me a skinny little plastic tube with two attachments for the speech processor (the thing kids use to hold their hearing aids on), but THAT doesn’t hold it on my ear, either. ... I’ve had no luck finding something that WILL hold it securely, except if I wear a skinny headband and tuck it behind that ... but that pulls it a bit out of place, so my sound reception isn’t the ideal – and my hairstyle options are very limited! :o( ... Oh, well. ... the BTE still works the best for on the phone and in public settings.

I graduated from auditory rehab in March, but I still try to keep practicing on my own. I’m a bit frustrated that I haven’t seemed to gained any improvement since I left rehab, but I’m sure it’s because most people in the real world tend to speak too quickly, too quietly and/or mumbly, or with an accent of some sort! ... I still depend a lot on lip-reading, and continue to have the challenge of people not facing me when they talk or covering up their mouths! ... Recorded/electronically transmitted voices also continue to be a challenge for me – and understanding speech on the phone. ... However, my dad has let me try using his cellphone a couple of times – and, surprisingly, I understand quite well on it! Too bad I can’t afford one myself! :o/

In April I had my eye muscle surgery on my right eye. My eyes look SO much better, now that both are in alignment! ... I still mainly use my left eye to view things, but my right eye wants to jump in and focus a lot more! Unfortunately, neither my depth perception nor my balance has improved at all – and I’m now challenged with double-vision whenever my eyes focus together!

On Memorial Day Weekend, Jenda and I moved from my apartment in MD to a beautiful 2BR townhouse just 11 miles from my parents in VA! ... I’m scheduled for mappings every six months, now – my next one will be Oct. 23rd – and I’ll continue to go to Hopkins and have Jennifer do them. I’m excited about my next visit – I heard the new improved sound processors are out and I’m hoping mine will be available for me then! ... I’ll post an update soon after, and let you know if I get it and how it goes! :o) ... If anyone has any ideas about something I can make that will hold my BTE in place behind my ear – PLEASE let me know! I’d really appreciate it – it’d be wonderful not to have to wear a headband all the time!

Challenges and Blessings!

Oh, my ... I missed September! Sorry about that ... I’ve had so much going on, the month just flew by! ... It’s been a pretty frustrating month with my CI, actually ... my progress has been slow ... although I AM continuing to MAKE progress! :O)

I began experiencing these extremely frequent, weird vertigo/dizziness episodes at the beginning of the month, and DID go in to see Doc Limb. He checked me over and said my CI site and everything is fine, so he set me up with their physical therapy department, with a therapist who specializes in vestibular rehabilitation – he feels this will hopefully help both my balance challenges and vertigo/dizziness. The therapist’s name ... JENNIFER!! :O) ... I’ll have to call HER Jennifer3! :O) ... Ha! Ha! ... At least it’s easy to remember all of their names! :O)

One of the things Jennifer3 helped me discover is that it helps a lot with balancing if you focus your eyes on something (i.e.: a small "X" on a post-it note on the wall). Unfortunately, my right eye is "lazy", and is difficult for me to focus on the same thing at the same time as my left eye – although I seem to feel more stable when I do! So, I went to the eye clinic, and the eye doc agrees with me that – since I DO use my right eye a lot – if I get the muscle in that eye strengthened (surgically), it MAY just help me with my balance! We won’t know FOR SURE, though, until I have the surgery ... and I can’t get in to see the surgeon until the 28th of Nov.! :O/ ... Oh, well.

I’d been experimenting more with the accessory microphone, and discovered I really like to use it when I’m conversing with people – especially on the 70:30 ratio. One Fri. evening, I went to a seminar at church, and sat on a chair right in front of the speaker’s podium, clipping the accessory mic right onto the podium. I COULD UNDERSTAND PRACTICALLY EVERYTHING THE SPEAKERS SAID!! :O) ... I was SO amazed and thrilled!! I still had trouble with the music/singing and the people around me when they asked questions – but everyone who stood behind the podium I could understand – even though I’d never heard them speak before! :O) ... Unfortunately, shortly after that experience, the accessory mic began deteriorating – it increasingly gave me a lot of static and muffled sounds and even seemed to turn off and on intermittantly. Jennifer2 let me plug in a different accessory mic that she had at the clinic, and IT worked fine – so I’m quite sure that MINE is faulty. :O( ... I’ve been very careful about taking care of it and putting it into the Dri-Aid kit every night ... so I guess I’ll just need to buy a new one ... unfortunately, Jennifer1 told me my insurance doesn’t cover the CI accessories. ... Hopefully the next one will last longer! :O(

Mostly this past month I’ve just been practicing listening and pinpointing what areas are more difficult for me to hear/understand. For example: I’ve determined that the lower male voices are difficult for me to hear, and certain letters/sounds such as "i’s", "e’s", "m/n’s", etc. ... I’m still doing well with Jennifer2 at auditory rehab, progressing through three different lists of words (the latest list has two-syllable words with more of the letters/sounds I’m having difficulties with, so I only got 15/24 and will have the same list next week) and doing well with increasingly difficult sentences and paragraphs! The telephone is still a struggle, but I do well with HER. I guess it still has a lot to do with my lack of confidence that I’m actually understanding correctly what I’m hearing – on the phone AND in person! :O/

Yesterday I had my 4-month mapping with Jennifer1, and I talked with her about the IDR’s and Pulse Widths and Paired/Sequential settings. She confirmed we HAD tested the Paired vs. Sequential – and I prefer the Paired. The Pulse Width I’m set with is the narrowest/fastest(?), which works best with the paired for the most natural sound. ... I admit, I’m still a bit confused and overwhelmed by it all, so I’m going to take her word for it and go with it and get used to it for now. ... She DID widen my IDR’s (sound window) for me so I can see if it helps or not – Prog.#1 is at 65 IDR (up from 60 IDR), and Prog. #2 is at 80 IDR (the maximum). Program #3 is set up for my accessories – whenever I get my new mic! ... I’ve got three more months to work with these programs until my next mapping! :O) ... I’m already noticing that I AM picking up even more sounds with the 80 IDR program – it’s taking me back a bit to when I was first activated – have more sounds for my brain to sort and put into the background (or not)! I’m confident I’ll be able to do it, though! :O)

Then I got my Birthday/Christmas present from AB – my Auria PowerPak processor had arrived!! :O) ... Jennifer1 brought it out and went over all the little parts with me (oh, my – I’m overwhelmed!), and programmed it with the same three programs I have on my body-worn processor! I even got another nice bag to carry it all in – just like the one they gave me with my first processor! :O) ... The BTE is a challenge to keep in place behind my flimsy ear, though, so she recommended I try using one of my earmolds from my H.A. and possibly some hair tape (which people use to secure wigs on their heads) to hold it more securely. I found some of the tape at Sally Beauty Supply this morning, and also got some Energizer Batteries (AB recommends those or Duracell ... what a promotional gimmick for those guys!) at Walmart for my Power Pak – so I’m ready to roll! I’m SO excited! It’s FUN to have choices! :O)

CI Woes

I’m sorry I haven’t updated this in so long. My session with Jennifer2 on the 11th didn’t go so well, and I was too ashamed to write. :O( ... First, I was missing most of the sounds, so she did them for me three times without covering her lips so I could see what they were as I heard them. THEN I was able to identify them. Next, I was only able to identify 1/4 of the individual words and needed the paragraph broken down into individual sentences/groups of words. Jennifer2 told me I may need to go in and see my surgeon, Dr. Limb, to make sure nothing is going wrong with the implant site – esp. since Mom had pointed out that my balance seems to be getting worse, again. I told her I was extra tired that day, too, from spending the previous week with my parents, not getting enough sleep the night before, and an especially-long drive there and waiting period before. So we decided to wait until my next session, to see if I’d improve – and I’d try and practice more in the meantime ... and get more sleep.

The next week I tried to practice a bit more, and tried to catch up on my rest. It must have helped, because my session on the 18th was MUCH better! :O) ... I got almost all of the sounds right – but we noticed I’m having the most difficulty distinguishing the "M"-sound. Since it didn’t USED to be such a problem, Jenniger2 guessed that maybe something got messed up when Jennifer1 adjusted the program – so, I’ll talk with her about it and see if we can fix it when I see her again. I got 21 out of 25 of the individual words correct with no more than one repetition – and passed the list, so next time Jennifer2 will use a different word list! With the paragraph, I needed a lot of repetition at first, but got better towards the end. Jennifer2 gave me a cassette tape that she’d made up for me to practice with, containing similar-sounding word pairs, the individual words on the list I’d just passed, and a children’s story: "10 Little Rubber Ducks"! :O) ... I’ll have Pattie and my parents listen to it with me as well, so they can hear how SHE does it with me.

I fell much better, now, about not doing so well during that last session – I’m quite sure it was because I was just too tired. I HAVEN’T had any "CI Moments" for quite some time, though, and seem to be at a bit of a plateau in my rehab., as I haven’t noticed any changes in the way things sound for quite a while, either. It’s frustrating, but I’m not giving up hope! :O) ... My sessions the next four weeks will be on different days, so I’ll write an update when I can.

Music

The Lord definitely works in goofy and ironic ways, sometimes! :O) ... I talked with Pattie on Tues. about my love for music, and my hope that it eventually will sound more natural to me, again. She took me down to her basement, where she has an electronic organ, and we played around with listening to different notes and note combinations. She told me I can come over whenever I want and play around with it! ... Then we went back upstairs, and she opened a drawer in a big chest and brought out six recorders (flutes) – two big ones and four smaller ones! They were her mother’s, she said, and she and her children had all played them when they were kids. We sat on the couch and she showed me how to hold them and place my fingers to play them, and we tried out different notes. Then she gave me two of the smaller soprano ones (a wooden one and a plastic one), and told me I could take them home with me and practice with them! ... I didn’t get the chance to try them at home, though, until Thurs. morning before going back over to Pattie’s. I sat down on the floor with Jenda and started playing some notes – and she just loved it! She kept rubbing up against it and turning around and rubbing up against it some more! ... I told her I wished I knew how to really play it so I could play her some songs – but I’ve never learned to play any instruments (beyond the very beginning steps of the harmonica and piano), and know very little about reading music! :O( ... When I told Pattie how much Jenda enjoyed the recorder, she went back into the drawer and brought out some lesson books for learning to play them – one of which she sent home with me! And we’re going to incorporate them into my hearing practice sessions with her! ... So, I’m amazed! Not only have I been blessed with a wonderful retired teacher to help me practice my hearing – but I’m going to get to learn more about music and how to play a recorder! :O) ... Jenda will need to be my gauge, though, on whether it sounds good – for now, anyway. I can hear the notes, but have a LITTLE challenge determining whether some are higher or lower pitched than others – and whether they sound the way they’re supposed to. The soprano recorders sound more like tenor or alto to me!

My mapping with Jennifer1 on Wed. went really well! ... My hearing test was slightly worse on a couple of the tones than last time, but it was most likely because I was really tired from not getting much sleep the night before and the long drive and wait before the session. Not to worry. :O) ... She tested me with the letter sounds and the individual words, and adjusted my programs on my processor. With Pattie’s help, I’d determined which of the three programs I liked best for understanding speech, and Jennifer1 gave me THAT program (with a few tweaks) as Program #1. ... For Program #2, she gave me a background-noise reduction program – which gets 70% sound from the accessory mic and 30% from the headpiece mic. I can experiment with that vs. the 50:50 ratio I still get with the accessory mic plugged into Program #1. ... Program #3 is a slightly louder version of Program #1 – I may not need to use it at all, but it’s there in case Program #1 gets too soft for me during the three months before my next mapping!

Yesterday’s rehab with Jennifer2 went really well, too! ... I did a little better with the s/sh sounds, only needing her to repeat "sh" once! ... On the common sentences, I got 9/10 – and I did REALLY well with the paragraph, understanding all of the questions and almost all of the words the first time around! (She made a note to give me a tougher paragraph next time!) ... I’m still struggling with the vowels, especially, on the individual words – but I got 12/25 correct this time with no repetition, and an additional 9 with just one repetition! ... Then, after a bit of shifting the telephone handset around on my headpiece to find the best place to hold it, I was able to get 100% of the practice words/phrases Jennifer2 spoke to me! :O)

I expressed to both Jennifers my frustration that I do SO WELL when I’m there in the little rooms at the hospital with THEM – but immediately when I step out the door and into the outside world, my abilities seem to plunge – everything is more distorted and SO much more difficult to understand! :O( ... They both told me that’s normal, and assured me it will get better with time and practice. I do better with them because they’re both professionally trained and communicate with deaf/hoh people on a daily basis – and the rooms are small and have no background noise. When I leave, I’m in more widely-open spaces with background noise, different people’s speech patterns/accents/tones/speeds, and etc. ... so, it WILL be more difficult for me – as it is for ANYONE, with or without hearing challenges! ... And I KNOW all of this ... but it’s still frustrating ... so I felt better after having it confirmed by them ... THEY tell me I’m doing really well! :O)

Next week I’ll be visiting my parents, so I won’t see Jennifer2 until Aug. 11th. I’m sure I’ll have plenty of practice opportunities with my parents, so I’ll write for sure on Thurs. while I’m there.

Voices

I didn’t have my auditory rehab session with Jennifer2 last week, because she wasn’t there. I also postponed my mapping with Jennifer1 until this Wed. I DID have another couple of practice sessions – with my parents on Wed. And with Pattie and Chris on Thurs.

I’m not noticing much difference in my comprehension abilities – but another amazing thing happened! While listening to Mom and Dad talk back and forth, I realized I can hear a TINY HINT of what I remember their voices USED to sound like! It’s above the usual low-toned distorted voice – and so tiny that I can’t even be sure it’s not just my brain teasing me with a memory of their natural voices! I even thought maybe my right ear might be hearing them, so I turned off my CI and listened again – but, no, I couldn’t hear a thing, so it MUST be my CI! :O) ... I also noticed that Pattie’s and Chris’ voices sound different – I can tell when each is speaking because Chris’ voice has a more noticeably lower tone than Pattie’s (as with Mom’s and Dad’s). In fact, now – if I know whether the person talking is male or female – I can hear the lower tones of the male vs. the higher tones of the female! :O) ... Same with singing voices, although they’re still more difficult. ... Donald Duck’s voice has become extremely minimal when I’m listening to individuals, although he’s a bit more prominent, yet, when I’m listening to a recording or a group ... it seems the more complicated the voice(s), the more I still hear Donald’s on top of the low tones! :O)

I re-discovered Jenda’s meow quite by accident the other day! I had been turning the sensitivity level up while at home to hear her, reasoning that it would need to be up in order to pick up her quiet voice – but I was still having to put my head right down next to her in order to hear her! It was frustrating, because I could hear her better with my hearing aid! :O/ ... Well, at Mass I’ve been turning the sensitivity level way down, and that day I forgot to turn it up again when I got home. I was only home for a little while when I looked down and Jenda was standing on the floor below me (I’m also standing), looking up at me – and she opens her cute little mouth and I hear quite clearly a "M-YOW!" ... I was SO tickled! :O) ... So now I always keep the sensitivity turned DOWN while I’m home! :O)

This Wed. I will have my mapping session with Jennifer1, and Fri. will have my auditory rehab with Jennifer2 – so, I’ll most likely be writing something in here about them by Thurs. and Sat.

Practice

This morning I went to Mass, and they had fellowship afterwards ... Pattie asked if I'd like to start the auditory rehab. practice with her today -- of course, I said yes! ... I took Pattie home so I could see where they live, and then I went home to get my materials and change my clothes -- and then went back to Pattie and Chris'. ... I tried to make one of the rings like they use at Hopkins, but I can see through mine! I'll have to double up the material and see if it works better -- it was too easy to cheat and open my eyes so I could read her lips! ... We talked and practiced for about an hour or so ... I did worse with her ... she talks a little fast and the paragraph/story she read had long sentences and unusual words! She's a retired physics teacher, though, so I'm sure she's pronouncing everything correctly! :O) ... I'm going back again on Tues. and Thurs. mornings. :O)

Auditory Rehab Session #1

My first auditory rehab session was a little scary, but fun! Jennifer2 is really nice – I’m going to enjoy working with her! We talked about how I’ve been doing, and I briefed her a little bit about the things I’ve mentioned here – and also asked her about the accessory microphone. Sure enough, she said she’d spoken with Jennifer1, and Jennifer1 DOES have it set so when I’m using the accessory mic, I’m getting 50% input from it and 50% input from my headpiece mic! So, that’s good! :O)

All of the activities Jennifer2 did with me, she spoke from behind the ring so I could not see her face (unless it was to give me instructions or clues!). Our first activity was with the letter sounds: Mm, Ah, Oo, ee, sh, s. I was able to identify 4/6 – the s/sh are the most difficult, but I figured out that "sh" has a slightly lower tone than "s", so hopefully I’ll do better next time around! :O)

Next, she spoke some common, everyday, conversational sentences to me, and I was to repeat them to her (and give her my answer if it was a question!). I was able to identify 39/41 words without any repetition! Then she read me a paragraph (without telling me the topic, first), and I was to answer questions about it. Although I needed some repetition for the paragraph, I was able to accurately answer all of the questions! The most difficult activity came next: Jennifer2 pronounced random 1-syllable words, which I was to repeat. I was able to get 3/15 without any repetition, and 8/15 with just one repetition.

Last but not least – and scariest of all – Jennifer2 went to another room and called me on the telephone! I carefully put the receiver up over my headpiece mic ... afraid all the while that I would get the high-pitched feedback like with my HA’s – but it never happened! She randomly pronounced the numbers 1-10, which I was to say back to her. I got them all – only needing to have her repeat two of them – plus "hello" and "goodbye" (she said a few other things I DIDN’T catch, though)! :O)

She gave me a list of the activities we did and the words she used – and my results for today. I can use these when I practice with my friend from church and whoever else I can talk into helping me! :O) ... I won’t see Jennifer2 next Fri, as she won’t be there – but I’m set for my next session with her the following Fri. This weekend I’ll listen to my books on tape/cd from the library and try out the phonics CD-ROMs and the Beethoven piano cd. ... Speaking of which, I’ve discovered that if I know whether it’s a man or a woman singing, I can distinguish the slightly higher pitch of the female’s voice vs. the slightly lower pitch of the male’s voice, now! And songs that are familiar to me sound a little smoother and I can distinguish more fluctuations in tone than songs which I’m not familiar with ... slower music is a bit easier to distinguish than faster music.

So, I’m pretty happy with how the rehab session went. I think it gave a little bit better representation of how I do in the real world – although it was still in a small room with no background noise or other distractions. I’m sure that will come later! :O)