Tuesday, November 29, 2011

NEW MTA PROJECT MAKES SUBWAY EASIER FOR HARD OF HEARING

Check this out! I have noticed more and more subways in the city have Telecoil.



MTA Project makes subway easier for hearing impaired


The video itself DOES NOT have captions but below the video has the entire transcript.




Hugs,
Danielle



The nightmare continues....

Friday, I started using the Freedom processor since my N5 cochlear Implant hasn't been working well. Saturday all day the processor was fine and all of a sudden I hear the " ch ch ch" and then it powered off. For a second I thought I was dreaming.  All day this happened and the crazy sound just wouldn't go away. Then the silence ( off) then right back on within seconds happened most of the night. I started to get upset but tried to remain positive as my audiologist is doing everything she can to figure this out and so is Cochlear.  GOD she problem hates me although she keeps apologizing. It is strange this is happening with the FREEDOM. Sunday I woke up around 11am to put up the christmas tree with my niece. The processor was fine for about two hours and then my voice was disappearing and I wasn't able to understand what everyone is saying.I was missing out most of the time. The processor kept turning off. This keeps getting worst.

I just cant believe this is happening. I emailed my audiologist on Monday morning and even called her the moment she walked in the door. She then emailed me to say that this has been happening to long we need to get to the bottom of this but to keep wearing the processor for now. My audiologist emailed me back and said Cochlear will be coming on December 14th,2011, again so I will have to race back into the city. Cochlear is going to have to do some more testing or something else. Apparently when I saw them a month ago the integrity test was normal nothing showed up.

With that being said I am trying to remain calm as finals are happening in college and Christmas which is my favorite holiday. I really cannot wait for Christmas this will be the first Christmas hearing all these new sounds. On Monday the processor was fine then at 2pm it started to act up again in college.The crackly noises( ch ch ch ch ch) and hearing echos while my professor is talking when I know this is not his voice and my voice sounded awful. I was  also talking and signing to my interpreter explaining to her my implant is not working properly still.  I sounded like a robot and echo. Thats a new one because I heard myself talk three times. So I had to take the processor off at 2pm because I just couldn't take it anymore. I was about to walk out of class but didn't.  This is just frustrating....  I came home around 6pm and immediately took off the processor because nothing has changed in the last few hours. I gave up and just wore my hearing aid in my Left ear.

What a difference from going back to my hearing aid because I need " SOMETHING" to help me get by at this point. Im supposed to be wearing my aid in my Left ear all the time but I dont. It was amazing that I missed almost everything that was being said with my hearing aid on which isn't unusual.  I havent worn the hearing aid in so long I forgot all about that. Then I realized I cannot hear myself TALK with my hearing aid in my ear because a friend of mine on the phone said " WHY ARE YOU SCREAMING." Then I started to get emotional because I then realized I cannot live without MY COCHLEAR IMPLANT. The cochlear Implant has helped me so much the past 10months I been activated.  I cant believe its already 10 MONTHS since activation.  The implant is something I rely on the moment I wake up. Today I am going to put on the implant to see how it is.. if it starts making noises I am going to leave it home and wear my hearing aid in my left ear. It does suck but I dont know what else to do at this point. The more I hear those crazy sounds and my voice changing the more im going to get upset and I cannot be stressed when I have so much to do for school.




**Please Note** This is my personal experience. Technology is Technology things happen. Dont let this Discourage you please. I am writing here on my personal blog to vent and also share my experience with all of you. This doesn't mean you will have this problem or shouldn't get a cochlear implant. You do what's best for you. I wouldn't trade it for anything in this world. Because my implant is the best thing that ever happened to me. I finally fit in. My audiologist is an amazing understanding individual and Cochlear is working so hard to get this resolved.



To be continued.....




Hugs,
Danielle





Friday, November 25, 2011

Freedom Processor Trial

This morning, I went to NYC to see my audiologist because the Freedom processor I received in the mail " wasn't working". There was no sound. Turns out the processor that was sent from cochlear was never mapped. That was why I couldn't hear anything and started to panic.

 Today my audiologist programmed a new "mapp" that is slightly different. I also had to listen to high pitch beeps/tones, say some words with the freedom processor. My audiologist wants me to use the Freedom for one month  to see if there is any difference. I will ONLY be using my Nucleus 5  for Music and for the Noise program since I dont have that option with the freedom. I have to keep a log of how this freedom is working the entire month. I will be going back on Dec 30th for a followup.  If the freedom works then she will have to tell Cochlear and we will go from there. Right now its just a waiting game. I hope that I will be able to go back to my N5. It's just not the same. The freedom is pretty heavy, falls off my ear with the ear mold, runs on 3 batteries which Im not used to. I also miss my remote more than anything. I CAN HEAR SOUND!!!  I am going to stick it out and be thankful I CAN HEAR! At this point thats all that matters to me is being able to HEAR.  This just has been frustrating.


Next week I will be back to tell you how the freedom is working...


In the meantime I found one of Gallaudet University's " Quiet Campus" episode. The video is short and captioned.






Hugs,
Danielle

Tuesday, November 22, 2011

Received the Freedom Processor today

I received the freedom processor in the mail today. I put it all together coil, cable etc. A friend showed me how the freedom processor since she is a bilateral freedom user. I only have P1 on the processor and there was NO SOUND. I was suppose to have all  programs P1-P4.  She even tried it NO SOUND. I left a message for my audiologist who I will be seeing Friday. Maybe it was never mapped. I dont know why there is NO SOUND. I am a bit worried. The point of getting the freedom was to try it out to see if it works....

I just dont get it. I called cochlear and they said " Wait for your audiologist."

In the meantime... My N5 is working and has been fine for two days. All of this is just STRANGE!

What a difference which each processor the N5 is amazing.  I dont care for the freedom ( my opinion). Its just to big for me and It falls off my ear.  I am just getting nervous because Finals are coming up in college and I just hope everything will be okay.

To be Continued on Friday.......

Below is a picture of my N5 and the Freedom Processor.



Monday, November 21, 2011

Graeme Clark wins an award

Graeme Clark is the one that invented Cochlear Implants. This man saved my life because my entire life I struggled getting by with hearing aids and then I lost all of my hearing suddenly. This year I am so Thankful for my cochlear implant without my implant I would be miserable. Being isolated my entire life over my hearing loss was a set back for me. I was always shy and nervous when people where around me.  My N5 has opened many doors for me. I am able to communicate with ease. I may not catch 100% of what your saying all the time times but remember one thing nothing is perfect. This has been the best few months of my life. Regardless of some technical problems im experiencing now. I wouldn't trade this for anything in the world. I am able to hear for the first time in college, hearing students all the way in the back of the room is amazing. Hearing a two year old is priceless. Hearing on the telephone is amazing.

Graeme definitely deserves this awards and I hope someday I can meet him.


Check out the article below.


Cochlear Implant Scientist 



Have a great day!

Thursday, November 17, 2011

Newest Update with my Nucleus 5 Cochlear Implant

I havent been around because college is keeping me really busy. I barely have time to  relax anymore. I cant wait till this semester is over. 

The lastest information about my Cochlear Implant is not so good news. I am very upset. Unfortunately, my Audiologist knows the on and off has been occurring way to much and we replaced the Nucleus 5  five times now. Every piece over and over again. Its not even a year yet with the cochlear implant so its a bit strange and confusing as to why this is happening. We just dont know why. We are trying to rule out every option like a few weeks ago when I met with the cochlear rep, when she did the test. 

Anyway, The ch ch ch ch ch sound is so annoying that there are days I cant understand speech and the worst part of this all is most of the time all this happens when im in College when im sitting in class. Thankfully I have an interpreter and knows ASL. The implant is completely fine when I wake up in the morning and I take it out of the Dry and Store. I put it on get on the bus either twenty minutes into class or 45 minutes into class I get ch ch ch ch ch and then it shortens out and goes completely SILENCE. At first I thought the battery died and I missed the beeps but no I was wrong (OFF) then right back ON,  That is the pattern all day long. The same pattern but worst at this point. Has been going on for quite some time now. Its the same thing everyday. Im getting used to it but its frustrating when the implant shuts off for a long period of time and that has started weeks ago and hasn't stopped since. The remote stays home and heres why because every time well most of the time its on my head its fine and then when it does the ch ch ch sound its fine. No trouble shooting to do. Then sometimes I see that it said my implant is off when I hear sound when its not its clearly on my head. So thats why I just keep it home.

So heres whats happening now in the next week. My Audiologist  emailed me yesterday and decided that she wants me to try the FREEDOM processor. I have seen the Freedom processor because my friend is a bilateral freedom user. This will be my first time using this processer so I am nervous because I need to hear. I will be getting the processor on Tuesday 11/22/2011. The point of getting the freedom processor is to see if the Freedom works. If the FREEDOM processor works, well.. I dont want to know what happens next. That is the next question I will ask my audiologist when I see her Friday on November 25th. The processor was suppose to come over night but its coming Tuesday night instead so I hope two days is enough time to figure out if the Freedom is working or not. First I have to figure out how to use it that will probably take me a few hours. 

I am upset and disappointed but I am thankful that I can hear each and everyday with my implant. Even though I am having problems with the device I can still hear. Honestly I cannot live without my implant. This is something I rely on for the rest of my life.  I am going to leave this with a happy ending. 

CI moments and New Sounds....

-  A CI Moment before class on Monday morning I was sitting in the hall in college and all the way on the other side of the hallway there was a student and I heard her music from her Ipod. Not the exact song but I heard music.  The coolest moment ever! 

- Acorns if you step on acorns makes a noise. When Acorns fall from the trees makes a noise when it touches the ground.  I was trying to figure out where the noise was coming from. 

- The wind is so loud. When it is windy out and the leaves are blowing with the wind. What a sound! I heard that on Monday.

- spraying perfume makes a noise.


Tomorrow is my Birthday and I am looking forward to spending time with my niece all day! This will my first birthday with my Implant. :)

I am looking forward to Thanksgiving and Christmas which will be my first time with my implant. I am excited to hear new sounds and Christmas music!


Have a good night

Hugs
Danielle

Tuesday, November 8, 2011