Saturday, March 18, 2017

Is this the future?

While I am on the subject of my recent adventures at Celebration!, I feel the need to put a little hope out there for those of us that have had the "privilege" of having Meniere's disease steal, not only our hearing, but also a good portion, if not all, of our natural, inner ear balance function.

One of the sessions I attended was about what was coming in the future for Cochlear brand implants.

Naturally, the main thrust of the presentation was about the hearing aspects of implant technology. To be honest, some of the glimpses are pretty darn cool. Things like direct connect to IPhone with a phone app to control your processor. Or smaller, lighter processors. Or giving a recipient the ability to have their processor mapped without traveling to their audiologist. All the way to the current holy grail of implant technology, the thing affectionately code named TICI. The Totally Implanted Cochlear Implant. Yup, completely inside your head. No one would even know you have one.

Granted, the presenter (a man in charge of many of these projects- direct from Corporate headquarters in Sydney) would not, and really could not, give any kind of timeline for any of these coming out, the fact that they were mentioned means they are on the way. Sometime.

What he could say with certainty is that the N7, N8, and N9 behind the ear processors are all under development as he was speaking, as were the Kanso 2, Kanso 3, and Kanso 4. They need to be. Technology moves so fast that the rate that new, more powerful and complex processors hit development needs to be never ending.

But you know that we ( Meniere's patients) have a bigger, or additional concern: Our balance.

To tie this all together, after the presenter was done with his session, he took some questions and, of course, all of them pertained to hearing. Since the time was up for that session, I hung around for a few minutes to get a chance to talk with him. The first thing I told him was that my question was going to take him on a totally different direction from all of the other questions he had taken. I then explained why I was deaf and asked him if there was any actual research going on in the field of Vestibular implants. He replied there absolutely was, and referred me to some early work that had taken place in the state of Washington. He also mentioned that one of the presenters of a different session, Dr. Blake Papsin, was working with Cochlear Ltd in research on a vestibular implant. He mentioned that there were some significant hurdles to clear in getting one to the commercial point and that VI's were at the stage where Cochlear implants were 30 years ago.

30 years ago, CI's were in the trial stage, or just hitting the market and the long term success was unknown. That seems like an eternity, but in the world of electronics, that is a very short trip. If VI's are able to leapfrog forward due to the knowledge from CI's, development could be rapid. Or it could hit a wall.

When I thanked him for his time, I off handedly said, "I appreciate the information, even though I probably won't see any benefit in my lifetime."

"Don't rule that out", he replied

In case you were not aware, there are trials going on for a vestibular implant to replace person's missing natural balance system. Here is a link to one of the studies https://clinicaltrials.gov/ct2/show/NCT02725463

'til next time

Dennis

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

Sunday, March 12, 2017

It's a Small, Small World



My first trip to Disney World in Orlando, Florida, happened when I was a junior in High School. My oldest sister's first teaching job out of college was in Jacksonville, FL and my parents decided to take the family to visit her over labor day weekend, if memory serves my correctly.

Of course, when you travel like this, and we did it rarely, you needed to hit the sights, so we drove from Jacksonville down to Orlando in a rented station wagon.

Again, if memory serves correctly, the only ride that we took while there was "It's a small world". I have no recollection of how long it took to get through the ride, but I know it took a long time for the song to get out of my head after we left Disney, and Florida. It's one of those earworms that hangs on in your head forever.

My apologies for giving you that earworm. I know I did.

This post isn't about earworms, though. It is about how small of a world we live in. In our everyday lives, we really live in a small world. Chance encounters with people we have never met before, but that have some connection to us or where we live or grew up prove that point. Then when you add in the fact that some have chronic illnesses, or some other limiting thing in our life, the world becomes even smaller. And really, in unexpected ways.

The third weekend in February, I spent 5 days in Orlando, at a Disney resort, for Cochlear Americas Celebration! 2017. While there, those of us with Cochlear implants, or baha technology, have the chance to get our processors "cleaned and checked" by a team of professionals within the Cochlear organization. This is a free service that they offer at all Celebrations. It gives them a chance to look at your equipment and recommend, if they can't do it on site, maintenance on your processor.

As  I did 2 years ago at Celebration, I signed up for the clean and check. This time with two processors that I use every day and two backups. They were also demonstrating their newest processor for those that wanted to test drive it. I did not. Mine are new enough that I am very satisfied with what I have, and I am a few years from being eligible for an upgrade to a new processor.

When it was my turn to go in to the clean & check room, they directed me to a table with one of Cochlear Americas clinical audiologists. I gave her the first CI processor and she started looking it over. She asked me when I was implanted. Then where. When I told her, Mayo Clinic-Rochester, MN, She stopped what she was doing and said "My dad started the cochlear implant program at Mayo!"

I said, yeah, Dr. #####! And I looked at her name tag. Same last name. But here is where it gets to be a small world. Although her father started the CI program, he did not do my implants. He had long since retired. But, what he did do was diagnose, and treat, my Meniere's disease! 24 1/2 years after being diagnosed with Meniere's disease, the disease that would steal my hearing, I am sitting there having my Cochlear implant processors cleaned and checked by the daughter of the man that diagnosed me!

It is a small, small world!

Especially in the world of audiology and Meniere's disease.

'til next time

Dennis

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

Sunday, March 5, 2017

Definitely not how this year was planned


Hard to believe that the first quarter of 2017 is almost over. When the new year starts, many people partake in the making of New Year's resolutions. Mine certainly would not have looked like what has happened so far, if I would have made any.

Most of the these resolutions are made in an effort to improve one's life over the next year. Things like lose weight, stop smoking, stop drinking, find a mate, get married, etc. None of them involve a 6 day stay in a hospital. Yet that is where I found myself the month of January.

It becomes easy to not take care of yourself over time and then find yourself in need of a medical re-boot. It also is quite likely that a person will experience something that they never saw coming. And that is exactly what happened with me.

Now, I 'm pretty confident that you are thinking this has to do with the loveliness of Meniere's, but it doesn't. But it does have to do with my life, and really, the fact I am still living.

As usually happens in winter, there are bugs that go around. Some worse than others. I thought I had one at the beginning of January. Cough, chills, tired. It had to be a virus, so I blew it off. It will pass.

As this winter had been progressing, Tuesday had become the day of the week for winter weather. This year was more ice than snow, but if it came, it was on a Tuesday. Tuesday, January 10th was no exception with a round of freezing rain. As has happened more times than I care to count, my wife ended up staying at work and pulling extra shifts. I guess it is better than having to be concerned about her driving home on the ice. Staying safe is a good option. It also gives the road crews a chance to get out and clear or sand the roads to make travel safe. Since our driveway is a bit, well, quite a bit, of a slope, I figure I should get out and sand it before she headed home so she could get home.

So out I went and I grabbed a bag of barn lime to sand the drive. As I carried the 50 pound bag, I developed intense tightness in my chest and by the time I got to where I needed to sand, it felt like the bag was on my chest after I set it on the ground. Then I started coughing. Remember the virus thing? It had to be a virus, so I continued to sand. When I finished, I broke into a sweat and was extremely tired.

The next morning I couldn't breathe after getting dressed and decided a trip to the Dr. was in order to confirm the virus thing, or maybe bronchitis, or at worst, pneumonia. My primary care thought otherwise and ordered a full work-up of my heart. Everything came back negative until the very last test. This was a test to see if I was at risk for blood clots in the lungs.

Are you kidding me? Blood clots in my lungs?

After the radiologist confirmed that was indeed what was going on, I found myself a resident of the local hospital for the next 6 days, and I find myself on blood thinners for six months, minimum.

Being the information junkie I am, I looked up pulmonary embolisms and was greeted with the statement that 33% do not survive without immediate medical attention. I waited 24 hours. Talk about a reality check.

As the week in the hospital went on, I learned more about the clots. They seemed to have started in my calf. I thought I had a cramp, I guess it was the clots. I didn't just have one clot in one lung, I had several in both lungs, and they were pretty big. On my follow up with my primary, I got a big hug and was told I should be grateful I was still here.

Trust me, I am. Yet at the same time, I never really felt as though I was in a life threatening situation. I kept up on all of my homework for school while recuperating, I started working immediately after release. Really, other than being told I had them, and the one day I had trouble breathing, I did not feel like anything was wrong.

After release, my next concern was a trip I had planned to Cochlear Americas Celebration! 2017 in Orlando. I had resolved that if I got medical clearance, I would go and have a blast, but if I could not go, that was the way it was. My health was more important. Thankfully, I was cleared to travel. And I did have a blast. This was my second Celebration, and it was much more relaxed for me.

The thing about these gatherings of 1000 or so people who have benefited from Cochlear implant technology, is that you laugh until your face hurts, then you meet someone new and hear their story and cry with them, both tears of joy and tears of empathy. Then you laugh with them until your face hurts. It is an emotional 3 days surrounded by people who become your lifelong friends, and by staff that are more than employees for the manufacturer, but also friends.

And this, finally, leads to the picture. On the last day of the Celebration, at the closing session, they honor a few of the recipients from the previous year. This year they awarded 8 young ladies scholarships. They awarded a couple with the Lifetime Volunteer Achievement award, and they awarded me with the volunteer of the year award.

Not in my wildest dreams would I have ever thought 2017 would start out like this.

I'm thankful I am here to see it, and how the rest of 2017 goes.

'til next time

Dennis

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