Comments for My Silenced Marathon... My Life...

Comment on PLEASE VOTE FOR MY PHOTO ENTRY! (NF) by Anne

Anne — Fri, 10 Apr 2009 20:50:18 +0000

remember u can vote every day! (ends april 28.) but a friend discovered u can vote every few hours! go vote!

Comment on PLEASE VOTE FOR MY PHOTO ENTRY! (NF) by Anne

Anne — Fri, 10 Apr 2009 20:48:37 +0000

Thank you for voting! Please pass it on! I’m in rank 4 now! 1st is still like 500 votes ahead with 18 days left!

http://www.brickfish.com/Pages/PhotosAlbums/PhotoView.aspx?picid=838514_17237979&=PBB_NIKE_418_PPIMEMAIL_PPIMEMAIL&isep=1&pbapi=2134397&pbvi

Run happy!
-Anne

Comment on PLEASE VOTE FOR MY PHOTO ENTRY! (NF) by ChickenUnderwear

ChickenUnderwear — Fri, 10 Apr 2009 12:59:23 +0000

I did just vote for you. I also want to thank you for sending me to that site. Those stories at gonna get me running more.

Comment on I had not talked on the telephone for 3 years! by Anne

Anne — Tue, 17 Feb 2009 15:57:47 +0000

thought what i typed sounded differnt from what i meant… i grew up deaf in right ear. the left got bad and could hear sound but not understand speech, and then that one became totally deaf from another surgery in 07 and got the ABI..

Comment on I had not talked on the telephone for 3 years! by Anne

Anne — Tue, 17 Feb 2009 15:53:26 +0000

Well, i switched the blog layout thing, but not sure if that makes difference. ive used 3 or 4 different ones on here. i might switch it back later, kinda like the darker color background. whatever. yeah, I have the freedom too. I know some people who have broken it by falling off. when you take off hoodies / over-head jackets, be careful, or just take it of and put it back on, lol. sometimes i use the elasticy headbands to hold it more secure when i work out, but that probably looks kinda girl like, so you wouldnt want to do that! (unless its the kind made to keep ears warm or a bandana would do the same thing!) i dont have the ear mold part, but know a couple people with it like that. (because i go to RIT, we have like 1,500 deaf and hard of hearing students, which includes abound 300 or so people with cochlear implant[s]!!) ….dont switch to the body-worn one because of falling off issues! its a pain in the ass! LOL. that is funny about tapping on desk just to hear it, i guess ive done stuff like that! i was mostly deaf from dec. 05 to april 07, and then became completely deaf, and got abi turned on like 2 or 3 months later. maybe yours will work really well with 16, but ive heard that it doesnt make much of any difference after you get above 6 or 8. only reason i asked about HEI is bc that where i went, and continue to go fo r the follow-ups. its a pain to get out there, but oh well! (im from GA and go to school in NY. Dallas is much closer than where i am!!) i will go again next fall i think! I work with an audiologist at school but not on the mapping parts, and she knows steve otto, they even e-mail each other!

Comment on I had not talked on the telephone for 3 years! by Alan

Alan — Tue, 17 Feb 2009 13:37:38 +0000

Okay, when I followed the link from the email notification I am able to see the comments, weird. I have the Freedom Nucleus or whatever. Basically just the bte speech processor etc. Not the body worn version. One thing I dont like is that I dont feel real comfortable with it staying secured to my head/ear. I worry that when I do something active like play golf etc that it will fall off. My audiologist said we can make an ear mold like on a hearing aid and that would help to secure it somewhat. We shall see. I did not go to HEI. It’s kind of a long story but mainly for two reasons. One is that I really like my doctors here in Dallas at UTsouthwestern. The first tumor which was on the auditory nerve on my right side was very large. About 4 centimeters. The neurosurgeon I see basically spent 15 hours removing this. He was careful not to damage the facial nerve. I just put a lot of faith and trust in him and the Otolaryngologist. The other reason for not going to HEI was that it was just the logistics of it all. Traveling out there for surgery, my family members wanting to be there for the surgery, traveling back and forth for adjusting the ABI. I talked to Steve Otto out there quite a bit about getting into the second round of the PABI study but in the end, I just didnt think it feasible having to travel back and forth. I guess also, I just wasnt ready. Just wasnt at a point where my mind was made up. Last year my neurosurgeon mentioned they had a new doctor in the Otolaryngology department and he was going to get an ABI program started here. They had to go through the process of being approved, getting the audiologists trained etc. This doctor had spent time at HEI and had implanted about 35-40 patients. So, it wasnt as if he was new to it. I actually was the first person to be implanted here in Dallas. I think there was a girl who was implanted the day after me. I actually have 16 channels that are active and turned on. You were right, it is a very weird sensation with the sound you first hear. I had been deaf for about 6 years. When they first started mapping the channels, I wasnt sure if I was hearing something or if it was just my head playing tricks on me. Of course, since they are stimulating the brain stem you also can get some twitching etc in other areas. I started to feel this strange sensation on the right side of my face around my eye/cheek. Then all of a sudden, I heard the sound. Right now, a lot of things sound the same. At times, it is overwhelming and you find yourself wanting to just shut it off. But I know that it is a process you have to go through. I think that once you stop depending on what you remember sounds to be like and start accepting and learning what sounds are now like, that is when you start to really benefit. The first day after activation, I probably drove my neighbor hear at work crazy. I just kept knocking on my desk so that I could hear the sound.

Comment on I had not talked on the telephone for 3 years! by runnerchick

runnerchick — Mon, 16 Feb 2009 21:23:19 +0000

by the way, if you get sweat or humidity into the battery compartment… use the rechargeable batteries at those times (they are quicker to change and dont need so much air, like the call batteries need) I did that and still it was shutting off when I worked out and I just got “cochlear cordless model” (the “corded” kind is mainly for bilateral implants or kids that do dumb things like through an implant out a moving car window!) from gearforears.com , and it seems to help a lot.

Comment on I had not talked on the telephone for 3 years! by runnerchick

runnerchick — Mon, 16 Feb 2009 21:15:26 +0000

Good luck with that! it takes a lot of patience and practice, so try to not give up! I know some friends with ABI who hardly use it, and the audiologist that i work with an hour a week here, says that she thinks my case is rare, she keeps on challenging me, making it harder, because she doesn’t know what i am capable of! Like she would hold a black cloth thing up covering mouth, and say sentences with common words! I don’t know what is wrong with the comments section, I can see the whole thing. try re-loading the page, and let me know if it is still messed up. I havn’t posted in a while, been busy, but saw the email about your comment. I gotta go to the gym! …been sitting at computer for past hour! By the way, out of curiosity… how many electrode sounds do you have on? I have 10. Do you have the Freedom processor? Its great, I got it in November. Did you do to HEI or somewhere else?

Comment on I had not talked on the telephone for 3 years! by Alan

Alan — Mon, 16 Feb 2009 20:44:06 +0000

I had my surgery on Dec 29th. They removed a factial nerve sheath tumor and at that time, they implanted the ABI. They turned it on Feb 9th and so far so good. I am hearing sound. A lot of it seemed like kids opening presents on Christmas morning. Just rustling paper sounds. Over the span of last week I am starting to to differentiate some sounds. Back in November I met with the audiologist and she showed me the components of the ABI and also did a lip reading test. Ou of 10 sentences I managed to get two words correct. Last Friday I went in and got a tune on the ABI. She did another lip reading test and now I am getting 2 – 3 words per sentence correct. She was surprised at how well I am progressing. So, it appears I will be getting pretty good benefit out of the ABI. For some reason your comments section of your blog posts is hard to read. . The category menu covers half of the comments section.

Comment on “You need running, friends, and me to make yourself whole.”, said the Lord… by Anne

Anne — Mon, 02 Feb 2009 00:40:40 +0000

well, she wants it to all work out again. the whole situation is so frustrating. i wrote a letter as addressed to God… it was long (full page typed single space).. and then wrote on it that i wanted to share it w/ you, and slipped it under door, before leaving for run…. i had both sweat and tears on my face…

i havnt found that movie. lol, i have forrest gump and some other run movies, also have pre and bannister movies.

i did. i ran full loop around campus. its about 3 miles, finished off at store to get hot coco and banana. so that topped it off and i felt fine.

the surfaces:
indoor track – softest, warmest, tight turns, most risk of getting cut. he didnt say id get cut if i ran. he said he’d cut me if i asked him that again before he said so. (currently i am on the team as injured athlete. there are like 5 others in the same boat.)
treadmills – same as above minus the tight turns.
roads- harder, colder, solo for now.
snow – well its wet, and probably not very safe for running on top of!
trails, grass, and outdoor track… are not currently options. (and the “sidewalk” is ashalt, to same deal as saying road.)

i need to do homework!