Saturday, October 31, 2015

Cochlear implant update- 6 months

Most recent audiogram. Red circles is the residual hearing following CI surgery. Blue c's left ear CI, red c's right ear CI.

What a difference three months makes.

I recently returned to my audiologist for my six month programming session for my second cochlear implant. This, by far, was the most comfortable I felt with my current audiologist.

I had the first appointment of the day on the audiologist's calendar. 7am! Typically the appointments have lasted less than 2 hours. This one lasted 3.

I could tell something was different right away. She was more willing to chat before getting to work on the programming. And during it as well. We were able to cover a lot of ground in how I was hearing and what my concerns were for her to attempt to work on. It is vitally important that a person with Cochlear implants has a good relationship with their audiologist. After all, they are your ears. If you aren't able to communicate with the audiologist about how things sound, they don't know how to program the processor to get to a desirable outcome.  The device in my head, and the processor on my ear, is only as good as the program installed on it. That is just a simple fact. A bad relationship leads to a bad hearing outcome.  Many of my CI friends have made the statement that the person isn't just their audiologist, but a full fledged member of their family.

This audiologist is the third one I have worked with since my first implant in 2013. I haven't had 3 because I didn't like them, I have had three due to situations beyond my control.  The first audiologist retired (although she is back to work part time). She had so much experience and knowledge. She was in the operating room in 1984 when my clinic performed their very first implant surgery. It is hard to lose that kind of knowledge.  The second audiologist happened due to the retirement of the first. We immediately hit it off. And she was brilliant. Some of the ideas she came up with helped me in so many ways on my journey with the first implant. She worked with me right up to the point of ordering the equipment for my second implant. Then she needed to take a leave, maternity leave. I can't blame her for that. She was having twins! So this led me to my third audiologist.  She would be the one responsible for activating my second implant, and she has been the one I have worked with exclusively for my CI's since then.

It was a bit tentative at the start, but after this session I have full confidence from her ability.

The session started in the typical fashion of going through all the necessary steps to get the correct program. Then we headed to the sound booth.

It's interesting that when you are losing your hearing you dread the "booth". You know you are going to fail the testing. It is only a question of how bad you are going to fail.  When you get a cochlear implant the opposite happens. You look forward to the booth!

I couldn't wait to get in there and see how much better I was from the testing 3 months ago.

She also wanted to see how much, if any, of the residual hearing had been preserved through the surgery.  Technique has improved so much that it is quite common that some of the natural hearing will be saved after implant.

So, how did I do?

The improvement has been nothing short of remarkable.

Three months ago (at 3 month's post activation of my second implant) we tried a new test for sentences. A test called AzBio. These are more difficult sentences spoken by different voices. Some were men, some were women, and they were random in who would speak.We used the same AzBio tests this time.

 My results at 6 months are 54% of single words correct. the words are CNC words. Examples are dig, big, dug, bug, rug, such, much, etc. On the same test, I got 74% of the sounds correct (phonemes), meaning if the word was goat and I said boat.

On the AzBio sentence tests I scored 88% of the sentences correct in quiet. 88%!

They also do the AzBio test with background noise. The voice of the speaker is only 5 dB louder than the noise. Think talking to someone in a noisy bar/restaurant, but with no visual cues or context for the sentence.

Three months ago I scored 0% on this test. I could not distinguish the voice of the speaker from the background.

This time I scored 56%! In three months a 56% improvement!  I was actually thinking that it couldn't possibly be the same test as last time. The voices were so clear.  The only trouble I had was on the sentence where the speaker spoke very rapidly or mumbled.

When my audiologist came in the room she had a huge grin on her face.  You could see the excitement she had for me and my improvement. She may have been more excited than I was.

This journey has been nothing short of amazing and I know I have more room to improve, and I will. It has definitely been worth the risks involved for me. And I know that I have a very competent and caring audiologist to work with to get me to where I need to go.

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Friday, October 23, 2015

Pumpkin Bowling

My first baby is almost all grown up! It is bitter sweet. You can't wait for your children to grow into mature, responsible adults. And yet, you want to hold on to them as long as you can. Time goes by so fast.

It has become a tradition at my daughter's school to do a "sounds of the stadium" concert every fall. It is a concert that consists of "pep band" music and an indoor performance of the marching band half time show.

It is also the start of what can be considered a year long celebration of the seniors final year involvement in the band program.  The band director takes great pride in his relationship with his band students and take every chance to recognize the dedication of the upcoming graduates. After 7 years of commitment to the music program, this is the year they get to be celebrated for that commitment.

It has become the directors trademark to interrupt the fall stadium concert for fun and games with the seniors. Every year, the 12th graders are asked to introduce themselves and call on someone they care about to partake in the fun out on the gym floor.  Past events have been marshmallow tossing, with parents and seniors attempting to catch them in their mouths from the other ones toss. A different year they had furniture dolly racing with one on the dolly and the other pushing them around a track.

This year was my daughter's turn.  The trick is, they never know what game he is going to come up with.

My daughter informed him of my balance issues and asked what the game would be. He wouldn't tell. She asked my wife if she would be part of the fun. My wife declined. She asked me if I would consider it. I hesitated.  My biggest fear was the dolly racing. How could I make it around the gym either riding or pushing?  This was all before the concert started.  My daughter was truly concerned for me, as was I.

When it came time for the seniors to step forward, my daughter looked at me in the stands and asked if I would join her. I decided, why not? It is her last stadium concert. So I went out on the floor not knowing what to expect.

I don't know if he took her concern before tonight into consideration or not, but other members of the band rolled out 2 big carts filled with bowling pins and bowling balls.


I can handle this!

Then the twist.  We did NOT get to use the bowling balls. Instead we got to bowl ................with PUMPKINS!

My daughter and I didn't make it to the second round of the bowling contest. It didn't matter. The fact that I got to spend one more time with my (not so little) girl was worth the risk of what could have been. Instead of sitting on the sidelines feeling sad for not participating, I was out there enjoying the moment. A moment that, all to soon, won't be available anymore.

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Friday, October 16, 2015

No words

I hate when this happens.

I have started maybe 5 blog posts this week and trashed every one of them.

It's not that I am out of ideas about what to write about. It is that none of them flow. Nothing.  It is really painful when you type a page or more and when you look at it, it is awful. The only thing I have gotten out of it is typing practice.

It's harder than you may think.

Maybe it has to do with the fact that I have written more in the last 8 weeks than I have written in my life. I had an English paper due. 10 paragraphs, each one eight to 10 sentences long. Total amount of writing- 5 double spaced pages.  Right behind that was another writing assignment. 22 paragraphs, each 8 to 10 sentences long. Total writing- 6 single spaced pages. From that I have been thrown into another assignment due in 2 weeks. Length? Minimum of 13 paragraphs. Yup, each one 8 to 10 sentences long.

That combined with keeping two blogs going has me out of words. Is that even possible?

Something else that may be contributing is the the fact that life with Meneire's disease has been quite good lately. I have no major complaints. I have no burning issues to discuss. No news is good news, right?

But it makes for short or non existent blog posts. And that isn't good.

So how about we try something a bit different this week. How about I turn this week over to you, the readers? Leave a comment. Share a post. Just try to keep it as positive as you can. Post something about your resilience, about how this disease has affected you in a good way.

I AM being serious.  Put on your thinking caps. Dig down into your life and see the positives in it, despite having what is generally considered a miserable disease.

You can do it. I know you can.

Be an inspiration for someone who is struggling. Lift them up. It feels better than you can imagine.

And don't be afraid to leave some ideas for me to draw from for future blogs.

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Friday, October 9, 2015

Like a deer in the headlights

Photo via
Freeze! Stare intentley. Crouch a bit. Which way should I go? Left? Right? Nowhere? How about to the ground?

This pretty much summarizes the exact moment a vertigo attack hits. Many thoughts cross your mind as to what you should do, but you can't do any of them. You are frozen, hoping it will pass.

A little longer now. Slowly move. Nope. Wrong way. Try the other. Not that way either. Freeze again.

Meanwhile your life is waiting for you to do something, anything. Life continues on around you. Walking, talking, moving. Yet you can't.

Finally you pick a direction and brave the move.

Too much, too soon. Here comes the nausea. This is not going to end well, we can tell. Trust us.

If only it would pass as quickly as it arrives. Here in an instant, gone in an instant. But that isn't what happens. Instead every step for the next several hours is an effort. Even looking at something, somewhere, hurts.

But back to the beginning.  Don't we feel like a deer caught crossing the road in the dark of the night?  Headlights are so bright. And scary. We were simply trying to get to the other side. There is better food there. Or water. Or the rest of our herd.  We only want to get across the road. We only want to live our lives.

But there we are, caught. It was though we are some kind of thief that does his work in the dark. As long as we aren't seen, we can get away with it.

Why do you have to have such bright headlights? Why did you have to find me?

We should have done this. Or not done that. Doesn't matter now, you caught us. So here we stand, terrified, petrified, and completely clueless as to what we should do next.

'Til next time


Just a guy trying to live with an invisble, potentially debilitating illness

Thursday, October 1, 2015

The Ultimate Compliment: Part 2

On the heels of the amazing compliments I received on my writing came another, but this one on a completely different aspect of my life.

Part of my career change led me to visit with a close friend in October 2014 about the possibility of going to work for him as a tax preparer. I had heard through the grape vine that he was looking for an additional preparer for his independent office. So I gave him a call and set up a time to go visit him.

Being friends, he knew a bit about my health situation, and being a friend, I was completely upfront with him about what could happen concerning attacks and the need to quit work for the rest of the day on a very short notice. I also told him about my struggles with hearing. To say he was understanding would be an understatement.

He explained what the position would entail and encouraged me to sign up for a continuing education course to learn as much as I could about preparing taxes. I knew I would have no problem on the tax prep part. My concern was dealing with the public on a daily basis.  He assured me I would be fine and said that he wasn't hiring me for this tax season, but to train me for the future.

One of his preparers is a lady in her 80's.  Her knowledge of tax law and tax prep is second to none. But she is in her 80's! At some point, by her choice, or because she has to, she will need to quit and he didn't have any extra space in his client list to pick up her clients.  He stood the risk of losing them if he didn't find a replacement for her.

He told me he did not expect me to be real busy the first year, which I must admit was a good thing.  He also said that he would send some of his clients my way and another preparer would have no problem sending some of hers, and I would get the majority of the new clients.  But as for the preparer who is 80, don't expect any from her because she is very "territorial" and will not give up her clients.

As the tax season progressed, I noticed this lady was starting to ask me tax questions. ME?! The rookie!  Then she was asking me to check over some of her returns because she wasn't sure she had covered everything and didn't want to miss anything for her clients. Then she actually gave me a couple of hers.

After the tax season ended, I didn't really stay in touch with my friend about the future of my tax prep. I had other things on my mind.  I did talk to him when I was considering going back to school for accounting, but didn't discuss the tax office.

A couple of weeks ago, I met with my advisor from college to set out the path for my degree completion and talked about the upcoming semester. The semester that will take place during tax season.I needed to figure out if and/or when I could be in the classroom and if/what courses I would need to do online to keep my degree on schedule.  I decided I had better talk to my friend/boss to see if he was losing a preparer and how it would affect my coursework.

He had recently talked to the 80 year old and she told him she was planning to work this year again and had signed up for the continuing ed course, but she didn't want to work as much as last year.

Then she gave me the ultimate compliment.

He told me that he has had a few different preparers over the years and she would never give up her clients to them. She told him that she was completely comfortable with me taking her clients over.  In all her time working there, I was the first one she has ever said that about. 

Talk about being honored.

If and when she does hang up her pencil and calculator, I will have some big shoes to fill.  But knowing that she has expressed this much confidence in me tells me that I will be able to handle it.

Now if only my illness will let me.

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness