Using the FM with the N5: Revisited

I've been meaning to post an update about this for a while, especially since I've noticed a lot of people have found my blog when they were searching for information about using the Nucleus 5 with the FM adapter. Well, when I posted before, I had no personal experience using it since I had used the MyLink neck loop which, despite its ugliness/cumbersomeness, worked pretty well with only occasional computer interference. Since Cochlear was sending free adapters, we went ahead and ordered two and the school district provided the boots to go with them. I must say I had high expectations, and was hoping that any interference issues would be alleviated since the T-coil was no longer in use.

Not to be Miss Debby Downer here, but I had a horrible experience! I couldn't get through more than a half day with them.. The interference was so awful that I would only occasionally get reception when my head was tilted a certain way and the teacher stood in a certain spot, and that was only in one ear! After dealing with non-stop static for three hours, I gave up and asked for the neck loop back. The school district audiologists didn't bother to troubleshoot and pretty much just said, "Oh well, we tried." It's completely possible that with some adjustments to the FM channels it would have worked fine, but I don't know since I didn't get the chance to try it out. I'm not saying you shouldn't try out the boots with Euro adaptors on the N5 (as long as you can try before you buy!), but if you have small children using them, please be sure they're not just hearing static all day! It was the most terribly unpleasant experience, and I would hate to think that there are some toddlers out there who aren't able to explain what they are hearing that are having to deal with it too!

FM with the N5 *EDITED*

I've found that my blog has had multiple searches about how to use the FM with the N5 processor. Currently, I use the MyLink neckloop instead of a boot (using T-coil) and the SmartLink Transmitter, both shown.

 Recently, I went to look at the Cochlear store's newest items, in search of the microphone covers (I had a mishap in putting mine on, which resulted in needing another set. Cochlear just sent me some more for free. Details in another post!). I came across an exciting discovery..

"The Euro Accessory Adaptor is designed to create a convenient interface for connecting a wireless FM receiver, such as the Phonak MLxS, to the Cochlear Nucleus CP810 Sound Processor. Wireless FM receivers allow the voice of a speaker, often times a teacher, to be transmitted wirelessly to the listener for easier listening in noise." Cost: $90

For those of you  curious of what it looks like while being worn, I found some pictures that someone posted on a Dutch CI Forum. To see more pictures and, I guess if you read Dutch, read more about it, check out http://www.dcig-forum.de/phpBB2/viewtopic.php?p=18445&sid=2a9daa833ba1f71e0d1bf7ce67a859b1

This is not me, see above link for source.

See above link for source

I was worried about it being awkward looking. I'm not sure what I think of it, but it certainly adds bulk at a bit of a strange angle. It could be much worse, though. I'd be interested in hearing any thoughts (or experiences) on using the Euro Adapter. How do you think it looks? My biggest concern is the decrease in battery life that I will more than likely experience.

*EDIT as of  9/9*: Cochlear has information posted on their website about the new Euro Adaptor, and the site says that N5 users will be able to get the adaptor for free by filling out a form (which is supposedly on the website, but I can't seem to locate it). Check it out, plus tons of other info about using the FM here. Also, Cochlear has released an improved version of their Snugfit for the N5, which is pretty much the same as that of the Freedom (except shaped to the N5), so it's no longer transparent but much easier to bend to fit your ear shape. In addition to that, they've released Compact Rechargeable Battery Covers. This is good news for the parents of younger kids who like to use the covers and the smaller rechargeables. All of the items mentioned are for sale on the Cochlear Online Store under Nucleus 5 Accessories, which can be found here

The GED of IEP's- A Guest Post

The following is a guest blog post, as written by "Moxy", a fellow teenage girl with hearing loss. I'm sure she would greatly appreciate any comments! Are you interested in writing a guest blog post? Post a comment or email me with the topic you would like to write about, and I will get back to you. 
 
So, you've accepted that your child has a hearing loss. Your kid is enrolled in school, and there's talk of an IEP. What can I tell you about your IEP? Not a lot that your audiologist, teacher, or teacher of the deaf can't tell you. I'm not an expert on IEPs. I've sat in on my own IEP meeting once, which, in my opinion, was horrible. It was the first one that I was asked to attend, and I basically sat there, missing class, while teachers, my mother, a school psychologist I had never met, a hearing teacher/psychologist I had met once before, informally, sat and spoke about me as if I wasn't there. I, if you can't tell, am not a fan of IEP's.

A quick background, however, so you know where I'm coming from. I'm a hard of hearing high school student. I wear hearing aids and use an FM system in class (for those uninitiated, the FM is a wireless microphone my teacher wears like a lanyard. There are small "boots" on my hearing aids that pick up the signal. This is supposed to give me the effect of the teacher speaking directly next to me), and I enjoy long walks on the beach (Not really, the sand/ocean "white noise"/ocean spray isn't great for hearing equipment).

The IEP is what, essentially, requires that my teachers wear my FM. It also explains where I should sit in the room, what conditions might be adverse to my learning [Read: bad lighting, uncarpeted rooms, large classes, heavy facial hair/accents], and what (if anything) additional I may require [FM use, captioned media, extra time on testing (I don't get that one either)]. "BUT!" I can *almost* hear you saying, "Isn't your IEP a lifesaver? Doesn't it mean you can relax, knowing you'll have unrestricted access to communication and information, just like everything else?! What a breakthrough!?" But the IEP is not this. Often, unless a teacher knows they will be meeting with my Teacher of the Deaf, they don't read my IEP. On the first day of school this year, I had one teacher ask if "the hearing aids are all, or do you have anything else going on?" What?! My TotD-provided printout, carefully hi-lited with the needs specific to each class, determined by a conversation about this very act of explanation... didn't cover this.

However, being a fairly confident teenager in my own right, I laugh it off, say no, briefly explain my FM (I'll already turn it on when I give it to you, if you need to, you can turn it off, here's how, I can also turn it off from my hearing aids, so if you forget it's fine. Just remember to turn it back on, or, if you for some reason take it off, to put it back on, so I don't have to awkwardly/embarrassingly interrupt the class, telling you I've been lost for the last 5 minutes because you forgot), and take a seat. You seem content. You reply, after a minute, to let me know if you can do anything, whatever. It's all good.

Which is why, a week later, when I walk into the class to see the paused opening credits of a movie, I sit down and relax. In my world, everything is captioned. The TV I watch at home has those friendly black lines scrolling at the bottom of the screen. I'm still on auto-pilot, eyes flickering to the bottom of the screen. The film begins rolling, and I hear garbled noises as a heavily accented actor delivers his lines. I look to you, wondering if you've simply forgotten. You see me trying to grab your attention, and apologize, saying there aren't any captions. I nod my head, but inwardly, I'm screaming. "WHAT about the IEP?! What about the Internet, all of those script sites? What about the e-mail address for my Teacher of the Deaf  (TotD) I gave you, on the IEP recommendations sheet, who you're supposed to e-mail if the movie isn't captioned?! Was I speaking English!?" I sit, fuming for a while, trying to pick up random pieces of info. At the end of class, you assign an essay on the movie, due the next day. Ha! I think to myself.

Which is why you're surprised, the next day, when I hand nothing in. At the end of the class I approach you, reiterating everything about necessary captioning. You nod, agree, whatever.

The cycle begins.

Keeping in mind how often movies are watched at my school, this might happen twice a month. When the TotD approaches you, everything's good, I'm a good student, no, my hearing loss doesn't seem to be effecting me at all.

My parents, friends, and TotD know this to be untrue, however. You're simply resistant to my attempts to advocate, so I silently fume in your class during the rest of the semester.

Don't get me wrong, the IEP isn't evil. It can be downright helpful, but not in the ways I think it's meant to be. Something, for example, that isn't on my IEP, is group projects. I hate them. I hate them because I can be control freak-ish (that's me, overcompensating for my hearing loss. If I control the group direction, then I'll know what's going on), which leads to me doing a LOT of work. Which is OK, I will do my best for a good grade. But the IEP seems to signal to you that I'm hard of hearing. So, when I approach you, quietly, during class, and ask that our group be able to work in the hallway because with all the other groups talking, I can't hear the person sitting next to me, you allow us. We'll sit in the hallway and get stuff done. Hey! I can hear! But that IEP, yellow flag that it is, let's me ask this of you. It helps.

I had to ask myself why I wanted to write this a few times, during the process. I don't discourage anyone from getting an IEP, if it is appropriate for them. I just advise you that an IEP isn't a magical band-aid. It doesn't make hearing loss (in this situation) go away. It doesn't take it out of the equation at all. Advocacy is still very important, and if you're a teenager reading this, don't be afraid to shoot off an e-mail to your teacher, saying "Dear Mr. Teachy-mc-teacher, I can't deal when you don't do this and that. If you could do this-and-that, or perhaps hook me up with alternate whatever, I can deal. If you've got questions, feel free to hit me or my TotD up. TTYL, frustrated hoh/d student". If you're a parent of a hoh/d kid, don't be afraid to contact the teacher, and/or the totd. Trust me, your kid will thank you for it later, no matter how embarrassing it is at the time. The embarrassment might also teach some self-advocacy. And finally, if you're a teacher? Listen. It's not all your fault. Being hard of hearing/deaf (hoh/d) student is just half of the game. We need to be able to have open communication to make things work.

Quick MAJOR thank you to your fav blogger PinkLam (or MissPink, as I've seen it ;P) for letting me temporarily hijack her blog for a moment. Note that this post is not a reflection of her, or her opinions. She was kind enough to let me stick my nose in this whole hoh/d blogging :D Keep reading; I will.

Announcement....and a contest?

First and foremost...
DeafTeens.org is up and ready for viewing! Take a look around. I can assure you that many hours of planning and perfecting went into this website.

The other thing that I wanted to share with you all is that Phonak  is having a contest for FM users under the age of 19.  There aren't many rules or regulations, but there are plenty of prizes, which include camcorders and an iPhone. All you have to do is make a video about how your Phonak FM helps you, upload it to YouTube, and submit the video to MyPhonakFM@phonak.com. Interested? You can find more information at MyPhonakFMandMe.com. There aren't many videos up on YouTube yet, but you've got until August. The videos that are already are GREAT. I honestly don't know they're going to pick a winner, because I know I love all of them. They are so creative. Here they are, with captions..





This video doesn't (yet?) have captions, so  there is a transcript underneath.

*Music*

This is Andrea reporting to you about my Phonak Inspiro FM system.

There are 4 things I like about my FM. I like to talk into the microphone. It helps me hear my voice. It makes my teacher’s voice sound clear. When it is loud the volume goes up and down. I can take it to different classrooms like speech, computer, and music, but not gym. It is easy to carry. I listen to the story without using the headphones. I can see how it attatches to my hearing aid, and I can do it myself. If I didn’t have my FM, I couldn’t hear better. I couldn’t hear my teachers. School would be hard. I think my Phonak Inspiro is—wait. My phonak and Me.

Question 1:

Well, I like to speak into my microphone.

Question 2:

Well, it helps my, um, teacher’s voice clearer.

Question 3:

School would be hard.

And then?

Not concentrate because it gets harder, and harder, and harder, and I don’t get it!

My Phonak Inspiro changed my life!

Nucleus System 5- My Experience

Well, I finally got my new processors on Tuesday. When they say it takes 6-8 weeks to arrive, they're not kidding! I did get pretty impatient, but the important thing is that they did come. Here are some pictures... *sorry for the blurry quality. These were taken from my phone, since my sister decided to steal my camera, even though she has her own....sisters!*

On the left if my pink Freedom (the beige thing is the FM boot), on the right is my brown N5 with the pink cover.

Left---> Right Freedom, N5 with pink cover, N5 with blue cover.

Brown N5 on my head- side view. Please excuse the messy hair, I just put it up to take the picture :)

The remote...  I definitely think that's more of a personal preference thing. As someone who always has a cellphone in her pocket, it's no big deal for me to carry it around. It's pretty user-friendly once you take the time to figure out how to adjust all the settings. The only thing I wish they would add (possibly with future remote software upgrades?) is the option to have certain settings as "favorites" in the remote (similar to in a cell phone) that you adjust the most, making them quicker and more accessible to get to. Another thing is, it look like an Mp3 player. Or a cellphone. Or some combination of the two... What's the problem?

We're not allowed to use them in school, so I'm always completely afraid I'm going to get yelled at for having my "iPod" out in class, or even worse, have a teacher not listen to me and take it up. I don't adjust the settings too much, but I try to do it pretty discretely when I do- so far, so good.

AutoPhone- Would someone please enlighten me how the darn thing works? I know for a fact I have it, because my audiologist knew I wanted to try it out, and I saw her check off the little box for it. However, it's failed to come on every single time I've been on the phone (and I've used three phones- my cellphone, our landline, and my sister's cell). I  can hear better without T-coil than when I manually enable T-coil, so I don't mind it now working.. I just want to know if there's a way for it to work! My audiologist said it's voice activated, so the person on the other end has to have spoken for a few seconds before it detects it. No luck!

The view from behind- It's much, much thinner than the Freedom. I really like how I can make it stand out with the covers, or I can make it blend in completely. From the front, you really can't see any of it (my hair covers the earhook), unlike the Freedom, which was pretty bulky and noticeable from the front.

Battery Life- With the Freedoms, I barely got a full day of battery life, so I was worried that I wouldn't get very much out of the N5 (which use 1 less battery). The computer estimated that my right ear, which has a very strong map, would last 16 hours. It predicted my left ear, which has an even stronger map, would last 13 hours. Not quite a full day, but close enough. Yesterday was the first day I actually got to wear them all day (Tuesday- I didn't get them until my 9AM appt. Wednesday- I had French Honor Society inductions in the evening, and changed the batteries before  I went just in case, and Thursday I had a ton of reading to do and a very loud family, so the implants came off during my reading time). I put them on yesterday at about 8AM and I didn't get a single low-battery warning, even though I went to sleep at 12:30 AM. I'm pleasantly surprised that they actually appear to be lasting longer than my Freedoms did (weirdly enough, although partly due to my use of the FM boot on one Freedom). I know a lot of people really want the rechargables, but I never used them with my Freedoms, since they died during the school day, so I doubt I'll use the rechargeables for the N5 when they come out.

FM- There is not yet a boot released for the N5 for FM, so I have to use a neckloop with T-coil called the MyLink. While it's nice to have less on my ear, it's not exactly a fashion statement to walk around with a neckloop all day. I put the bottom part under my shirt, but I don't normally wear T-shirts, so a good portion is visible. I had to go a few days without the FM, and it made me realize there were come classes I really needed it for (French, my AP classes) but I also realized there were some that I could hear just fine without it. I think I may just "play it by ear" (heh..no pun intended) and only use the FM depending on what I'm doing in each class each day. When it's not in use, I can just take the FM off, so it's not a big deal.

Hearing- I was MAPped the same day I received the N5s, so my hearing is better than it was on Monday, but I don't know which I can attribute it to. I'll have to try out my Freedom again and see if I notice a difference, but I was told that, if I did, it would be pretty minimal. We'll see.

Funny story... I had taken off my FM neckloop in one of my classes, since we were just doing bookwork. The girl who sits next to me asked about it, and I lamented how I found it kind of annoying, but mentioned it was because I got new, smaller processors. I figured she's noticed since I'd worn my hair up the day before, but I lifted my hair up and pointed it out to show her anyway. "Ohhhh!" she exclaimed, "I was wondering why you hadn't wearing anything on your ears... I see it now!" 

Six Months

Today marks the half birthday of when I got my second implant activated :)

I've written plenty of posts on the benefits (and drawbacks) of being bilateral, so I'll try not to get too repetitive.

Bilateral=good

Regrets=none

When I was deciding on whether or not to go bilateral, the rumors about the Nucleus 5 had just started circulating. As much as I wanted the "latest and greatest" there was no telling when it would come out.  It could be weeks, could be years, and my audiologist couldn't squeeze anything out of the Cochlear rep. So, I (obviously) decided to go ahead with the surgery, as the timing was best for me. I had a full summer planned, and there was no way that I was interrupting my plans with surgery, and I sure as heck wasn't going to do it right after I started high school!

So, as you probably all know, the Nucleus 5 came out a month ago. As cool as it looks...

And as tiny/thin as it is...

And as amazing as the remote  may seem...

(Not to mention the bilateral accesories, AutoPhone, and improved mics...)

I'm still happy that I had the surgery when I did. I should be able to upgrade fairly soon, but had I waited, that would have been 6 less months that I would have heard from that ear. It's made life a lot easier. Without my new implant, I would not be able to use the FM (although I still do get some static, at least it works!) I was worried about music, going into my second surgery.  There's still a lot of ongoing research abot the benefits of having two CIs vs. 1+a hearing aid when listening to music. I was listening to music days after my new ear was activated, and I, personally, have found that it sounds much better with my 2 implants. It sounds great when I have it on my everyday ADRO, but even better when I have both processors set on the music program. I cannot even imagine going back to wearing one. When my batteries die on either ear, I wonder how I was ever able to do it with just one! While hearing in noise and in the classroom is still a challenge, it's a lot easier than it was before.

It was so worth it.

Coincidence... or not?

Sooo I've been having trouble with the FM not keeping its charge. I figured the FM itself was broken, since after being charged all night it would still not have a full battery charge. It died at the end of the day  today, so I used the backup FM for my last class. I had kept it charging at school (rather than at home like I do with the other one.)

My phone is now having the same problem. It will not stay charged! Apparently while I was gone at school, the lights flickered on and off at my house quite a few times, for just a split second.

Coincidence?

I'm just hoping my house doesn't explode by tomorrow!

Survivin' and Thrivin'

I've survived my first week of high school.

And I actually sort of liked it. I'm one of those weird people who needs (and loves) routine. The first day was relatively uneventful. I didn't get lost, and was able to get to my classes on time. I feel really lucky, things have worked out quite well (so far.) My schedule is GREAT (well, now that I've changed it twice). My classes are pretty close to each other, I have at least one good friend in each class, and I've never been late (or even almost late). I was originally assigned a bottom locker, but I didn't want to chance hitting my head and breaking an implant, so I requested to get it moved to a top locker. My new locker is on the opposite side of the school, and I was especially concerned because it didn't seem to be near any of my classes. It is actually somewhat close to two of my classes, which is pretty good when you consider that most people are only able to make it to their lockers once a day. The best part is, I got one of the sophomore lockers. While it's not any different than the freshman lockers, the people around my locker are SO nice. Last year, the kid whose locker was next to mine smelled questionably like smoke (I'm not going to jump to any conclusions... but this deaf girl has a pretty acute nose!) and was constantly cussing at me to get out of his way. The snooty girl who had a locker under mine always had her posse standing standing in front of my locker who REFUSED. TO MOVE. Passing periods were somewhat traumatic last year.So, it was such a nice surprise for people to instantly move out of my way if they see I'm trying to access my locker! And they actually SMILE! A little respect goes a long way.

Hearing-wise, things are great! At lunch, thanks to now being bilateral, I am able to follow most of the conversation with ease! It also makes it much easier to hear in the hallways. The FM is a HUGE help in my classes (I don't use it in the cafeteria because of spills and such), especially the larger ones where we get into groups often. One of my classes is a two-year class for those in the gifted program that is a mix of History, Humanities, and English. Since it's two years, there are also sophmores in my class and I get an AP History credit in addition to that an Honors English credit, which is pretty good. It's known for being really difficult, but also for being a lot of fun and the teachers are awesome. Apparently I'm in the "small" class (a mere 40 students!) On the first day, one of the teachers took a minute to quickly explain what the FM was, how it helped me, and that any time someone was speaking and I needed to hear it, they needed to speak into it. We then had to go around the room and tell things about the person sitting next to us, and the FM was passed to each person in the classroom before they could start speaking. This set a great precedent for the rest of the year, and already we have gotten into multiple groups and it has made it SO much easier on me. I am so grateful that my teacher did this, and he said it pretty eloquently and didn't make it seem like too big of a deal. Another thing that helped is the actual design of the FM. The SmartLink vaguely resembles a cellphone/TV remote/ iPod and doesn't seem quite as fragile as the Campus FM did. Everyone is comfortable just holding it up to their mouths like a microphone.

The second day I did have a problem where the FM died halfway through the day, even though it had been charging all night. I noticed a big difference when it wasn't working. The FM I am using is a temporary (and sort of old) loaner, and I will be getting a brand new SmartLink as soon as the order arrives. However,  on Wednesday I was given a backup SmartLink to use in case the other one dies again. It hasn't, and now I have two temporary FMs to keep up wit1h I do still get a little bit of static, but not enough to make me not want to use it. I am going to trial using the FM in my right ear one more time. I don't think the results will be any different, but we'll see

I haven't had too much homework, but I'm apparently taking 2 of the 3 most difficult classes at my school, so I guess that won't last long.

Well, that's all I've got to tell! This first week has been really great, and I hope the rest of the year is the same.

A New Sound+Another CI Moment

I pretty much never post about a "CI Moment" or new sounds that I hear, because after having my first implant for over two years, I've pretty much heard it all- or so I thought. Today I was sitting down eating a banana. Our house was relatively quiet (for once), and I became acutely aware of the delicate ripping sound you hear when peeling a banana. I peeled it just a little bit at a time just to enjoy it! I have probably had hundreds of bananas in the past couple of years, but I am left handed and usually hold the banana in my left hand while peeling it with my right. My left implant is still relatively new, so I can only assume that is why I am hearing it for the first time- too cool!

After getting this far along in typing this post, I saved it as a draft because I had some last minute back-to-school organizing to do. While in the middle of labeling my supplies, my phone started ringing (well,vibrating). It was one of my good friends, who I had mentioned in another post when she called me and I could not understand her at all. This time I understood every. single. word. I'm on a roll- two CI moments in one day! I'm really liking this new MAP! I might also add that this time I spoke to her using my new ear, rather than my older ear. While I did figure out how to use my cellphone with the FM via Bluetooth, (I have the Phonak Smartlink FM) I did not have the FM on when she called. I will have to try it out, though.


Well, starting tomorrow I am officially a freshman. I haven't "gotten sick" in the past 24 hours, so I'm hoping I will be fine tomorrow. Otherwise my first day would be a little too memorable! Cross your fingers!


I want to thank y'all for all of the comments and for those of you that voted in the poll. Keep 'em coming!

High School Starts Monday

And I have..

• lost my mind
  
• more pencils than I will ever use
  
• enough binders to last me through all four years of high school


• a big, ugly backpack (apparently in HS they don't wear colorful backpacks anymore..)


• a bundle of nervous energy


• a working FM


• some awesome new clothes and makeup (yay for tax-free weekend!)


• a new MAP so I can hear my best at school


• more batteries in stock than Energizer


• a cute new haircut


• met with all of my teachers that wanted to talk to me


• memorized my schedule and locker combination


• decided I'm going to enjoy myself and have a good year


• killed a good acre of trees with the amount of paper I bought
• added a poll to my blog to find out more about my readers (since you lurkers are so darn stubborn!)
  
• a stomach virus. Or some sort of digestive system issue. (for a week and counting...)
  
  

I'm just lucky like that.