Legooooo!

Yesterday was soooo cool. There's an exhibit at the Crown Center here in KC that features sculptures of various concepts.... in lego. YES! My kind of art! I trekked up after work and peered around the room with Kel, wondering at the magnitude of a feat that involves creating some 30-odd large sculptures of little squareish blocks.

Some of these pieces were larger than even me - an 8-foot tall pencil, a blue-colored mannequin putting a "broken arm" back together again (rebuilding would probably be a better phrase - think Humpty Dumpty), a person reaching for a mirror/through a portal.

These pieces looked fragile, and I wondered how much they weigh

ed. I even made the comment to Kel that these pieces HAD to be hollow - it'd just be so

much work and weight if they were solid. I think

I lost that bet - a green mannequin that was depicted as "taking off its own head" had a solid underside where the head was removed from the body. I have various pictures of the exhibit:

The artist is Nathan Sawaya.

Life on the Spectrum

So, when I first saw the title of "Growing Up on the Spectrum (Amazon.com link)," I thought of two things:

"Spectrum? What is this, some kind of color or lights analogy?"

"Well, either that or they're talking about mallrats in Irvine..."

So it took someone who is a little more knowledgeable about this kind of thing to enlighten me - there is a range of psychological conditions classified under autism. I'm studying about this so I can learn more about a family member's challenges and support him in any way I can.

It makes me feel weird, in a way. My family considers me challenged because of my hearing loss. The odd thing is, I probably don't even give it a thought anymore, and am living my life like it has no impact on it. I'm capable of taking on my family's challenges. Even if my Dad's opinion of me is that I should be back in California under his watchful eye, I'm perfectly content to buck his wishes and continue the success I'm achieving today.

So, yeah, I'm going to learn more about Autism/Asperger's. And take some Japanese courses while I'm at it. Kanji characters are just so cool. ;-) I want to be able to go to Japan and at least read the signs while I'm there. Some people say New York has no comparison to Tokyo - Tokyo would be like NYC on steroids. This I gotta see!

Off to bed and a little light reading.

Ever had one of those weeks?

This past week feels like quite the turbulent one. I've had to make sure I stay flexible and fluid as my plans would change quickly. Earlier this week, my mom was supposed to possibly arrive on Sunday evening, giving me some family time that I haven't had for a while. Instead, traffic and a couple of blown tires brought her in late Monday night. I barely had a chance to have dinner and breakfast with her before her schedule dictated she leave to Dix, Illinois. That upturned my Wednesday night plans to get caught up with her, too.

On top of that, later in the week, plans to hang out with some friends got dropped due to various reasons - illness, other plans coming up, a hot date materializing out of nowhere ;-). That's cool. Luckily, I was able to switch up my evenings with some fam time, like taking my bro out to see the wonders of downtown KC.

Last night I scoured the Power & Light district for the perfect location to host Deaf Professional Happy Hour (DPHH). This has been a voluntary responsibilty that I've put off since DeafNation KC in April. I still don't know how the heck I got nominated for the job. ;-) In any case, let me back up. Kansas City has two distinct groups of deaf populations - the South KC club (KSD centric, with people in Olathe/Overland Park/Johnson County) and the North KC crew (centered around MWCC/North Deaf Church/Blue Springs. I've just learned MWCC is shuttering their Interpreter Training Program :-( ). If we really want a good group of deaf professionals and interpreters to hang out together, we'd need a central location. Downtown's as good as a place it'll get.

So, I first step into Flying Saucer - it's gives a kind of a Irish pub feeling to it, with a iridescent glow instead of a gloomy atmosphere that I get from other pubs. It's pretty roomy, and there are tons of saucers on the walls, hence the name. The UFO theme is present, but the saucers are the big thing - if you become a club member and you drink 200 different beers, you get a saucer ceremony where your name gets put on a saucer (plate) up on the wall. There's also a members only area that could be used to get away from the small crowd that was there on Saturday night. Pretty sweet place! Their happy hour is 4-8 on Fridays, so that could work out for us.

Next was the Raglan Road Irish Pub (authentic!). This was a little more posh, more upscale than Flying Saucer. Immediately I thought this would be just a little too high-brow for the initial group I was trying to attract - after all, the majority of people I'd probably bring in would be KSD employees, interpreters in training, and 20-somethings who may or may not be "professionals." So that was out... for now.

I took a peek at McFadden's sports bar. Wow, way crowded even lateish on a Saturday night. Definitely a hot spot, being right next to the big Sprint Center and being wide open to the enclosed space where all the bars feed into. It didn't look like there was much room for deaf people to mingle with that size of a crowd - I fear it would be even more crowded after work on a Friday. Hmm.

Checked out the space in-between bars - there is a large, tiered, enclosed space where concerts and dances are held in P&L. My bro and I checked out the top floor for a bit. Mike got engrossed in watching the computer screen of the DJ, so I people watched, observing bachelorette parties on the dance floor playing out some dares. PBR Big Sky had a line going into it and had a cover charge, so did Mosaic.

Mike started to need to leave at this point, so I skipped out on Shark Bar, The Indie, and Gordon Biersch. However, parking wasn't bad, there are a couple of specials to get parking down to $2 or even 3 hours of parking free on Fridays. Otherwise the lots were something like $7 to park, not $20 unless there's some silly event going on.

I also found out that OneRepublic's gonna be playing in town on Oct 29th - woot! Now who is the Rob Thomas dude that's on the ticket????

SPDIAR!!!111

As I'm writing my blog, what should happen except a quite not-insignificantly sized spider starts crawling across my desk. Me= not a happy camper. Of course, it scoots away before I'm armed wtih the nearest destructive implement - a pad of post-it notes. My logical mind clearly knows that the likelihood of the beast biting me and doing any real damage to me, are quite small. However, meh, such creatures should NOT exist on this earth and I'll do my darnedest to rid us of them all!

(update - Wham! Got it!)

This morning, I'm thinking about some books that I picked up in the library yesterday - all three of them focus mostly on the topic of Asperger's syndrome. My younger brother has it and it's caused quite a bit a friction between us while living together. In many cases he just cannot deal with logical actions against irrational fears (coincedentially, like my dislike for spiders). For instance - one day, he would be all gung ho and run out and apply for jobs, taking rejection in stride, and coming home feeling good about what he did. Then the next time, his mind would absolutely freeze and get mad and he'd nearly have a nervous breakfown - because he did not want to socialize with anyone anymore. Or he'd come up with excuses as to why he couldn't start going to the gym and working out - citing too much time working (he's part time), being scared he'd be too tired to stand up at work, or that he'll have another fainting spell. Logic and rational discussion would not penetrate his skull - it was no no no all the way.

If I had not had my mom there at that discussion, I would have walked away thinking he was just a dumb, stubborn teenage-man-boy. My mom, bless her heart, had seen him do this enough times and was familiar with his syndrome and was able to at least, grudgingly, get him to agree to a plan of action.

If he's to continue living with me, I'll need to meet him halfway. So I'm willing to take the time to understand better about what he goes through and what techniques generally work. So, I've got about 900 pages of Autism-spectrum reading to go through... whee! Do I get college credit for this?

Books:

More than little professors: children with Asperger syndrome: in their own words
Growing up on the spectrum: a guide to life, love, and learning for teens and young adults with autism and Asperger's
Title: The oasis guide to Asperger syndrome: advice, support, insight, and inspiration

Anyone else have experience dealing with mental challenges?

Facebook vs Myspace

Intriguing article I was reading this morning, about social classes and their preference for which social media they use:

http://www.danah.org/papers/talks/PDF2009.html

I'm digesting the findings and takeaway, but in a sense, I agree with its conclusions - it does matter who is in your social circle, and wherever you start, you're more likely to remain within those social circles, even online. The internet is not yet a "great equalizer" and social media like FB or Myspace will actually take us further from that ideal because we will continue to mostly socialize with those we know vs being forced to deal with the community as a whole. It's not like you can randomly bump into the corner drug dealer or the fancy CEO in your neighborhood when online only limiting your interactions with your friends.

Sleeeeeepy

You know you're in need of a nap when you're halfway through making a blog post and you fall asleep.

My mom's on her way out from the Los Angeles area (here being the great midwestern metropolitan area of Kansas City) via the road with her husband. My younger brother and I took an identical route via LA-LV-DEN-KC a couple of months ago, when there was still snow up at the Eisenhower Tunnel between Dillion and Denver. I took that route with a smallish Ford Focus - let's just say that I don't see it being a whole 'lotta fun manuvering a 30 foot long 5th wheel RV(towed by a coupling in the bed of the truck instead of via a hitch all the way in the back) through the same interstates.

Last I heard at about 1pm CT, she was in Fruita, CO, which is some 1-2 hours west of Grand Junction. It's at least 4 hours from GJ to Denver, and from Denver to KC (which I'm becoming increasingly familiar with) is about 8 or so - at my driving speeds ;-) Guess I won't be seeing her tonight!

I guess some things I should mention about my Mom:

She's a very sweet, kind Mom, almost to a fault. I remember arguing with her about her teaching work screwing her over - dumping the hardest, most difficult, and most disabled special needs kids on her without giving the required minimum support necessary to serve them. We're talking about fifteen 3-5year olds with multiple severe disabilities, combinations of autism, deafness, mentally challenged, mood disorders, and vision impairment. And she was expected to teach these kinds with maybe one or two assistants? Each kid requires a full time caretaker, not one woman with a special ed master's degree! But my mom did her best, hopefully getting some minds molded and on the right track.

She's all set to travel the US after she retires - which may be when she's 80 or 90, because of the craziness in CA right now - where she'll trek around in a comfortable RV, setting up shop at various KOAs while seeing landmarks and family.

But most challenging is that she's been in charge of raising me, mostly without the benefit of a good male role model in my life. While my Dad was kinda/sorta around, I didn't get along with her current husband, and so not only was she raising 3 boys mostly by herself, she had to deal with me being deaf and my younger brother showing signs of additional needs as well.

I guess if I had to pick someone in my family who I was closest to, it'd be my Mom. I'm looking forward to seeing her here, and hopefully she'll have a good time.

The quest continues....

Eh, what a week. After surviving the Dig for a Cure charity volleyball tournament last week (http://www.digforacure.com), I had to deal with HLAA and other wackiness. On top of that, my mom's coming out, so I've got to make sure my place is up to snuff!

I found an awesome little gadget for "captioning" music - TuneWiki, available on Blackberry, iPhone/iPod Touch (requires OS 3.0 though), Android, and Windows Mobile. It brings up a "karaoke mode" that pulls the lyrics from online and displays them on the screen. Woot!

Their website is www.tunewiki.com, and I've got editorial access to the lyrics - if only I can figure out how to sync 'em with the song, because there seems to be no, well, timing to the lyrics - so how do I sync the words with the music?! I've put in a few suggestions to the developers. The program is still really rough, but if you like the concept, please do download it, sign up at their

forums, and give them feedback so they can hear what their users want!

KC's Fringe Festival is here! http://www.kcfringe.org. There's like an awesome series of independent works performed all over KC for about a week - music, dance, film, fashion, theatre, even burlesque.... ;-) I've taken in a few shows every year, surveying the local talent, stuff like fighting stunt shows, runaway fashion designs, and graffiti art. This year's lineup doesn't hold anything insanely attractive to me, but I'll keep checking to see if something catches my eye.

HLAA KC-STL chapter meeting

I'm raring for tomorrow to come - why? Because after the close of business, my KC HLAA Chapter will meet with Mary Stodden from the St. Louis HLAA Chapter to kind of put our heads together and make the KC chapter a kick-ass place to be.

Mary's been a great supporter and cheerleader. She's passionate about HLAA - back when it was SHHH and I was living in St. Louis, I had the opportunity to speak at her chapter and there truly a great bunch of people that I got to meet there. So I'm stoked that we may be able to tap into her advice and mentoring to get us up to where we want to be.

I wish we did this sooner - I think a lot of the problems we've faced would have been eliminated with someone who knows what they're doing advising us.

Captioned Music Video #3

The mood I was in last night compelled me to caption the music video "Apologize" by One Republic. However, the video wasn't an official music vid - a fan-made vid of MUCH better quality than the official video was put out and absolutely rocks.

See captions here:

http://www.overstream.net/view.php?oid=r2trtsuwadeh

Alright, now I need to take the 3 I've got and get them perma-captioned on the video itself without loss of quality or sound. I'm tired of not being able to take my captioned vids with me.

On a side note, it's baby fever season - 3 of my friends are expecting in early 2010. After all those celebrity deaths in the news, I'm glad to hear something positive to balance it out. Just as long as I don't have to wear a bonnet at all the baby showers....

Making a mark

Some discussion last night started firing neurons in my head. What is living life to the fullest? Is it doing everything on your "bucket list" before you kick the bucket? Is it being generally happy, content, fufilled? Or is it living life on the edge, teetering to the brink of extinction, never pausing for a breath before being off to the next big adventure?

I'm pretty satisfied with how far I've come since college - I take the view that every day just gets better and better. No time to rest on my laurels, there's plenty of more challenges and obstacles to take on. But I never did heavily seek out going hiking, or white water rafting, until I found people who wanted to enjoy that kind of stuff. My life goals were to go to Deaflympics for volleyball, visit a bunch of English-speaking countries, (and Japan. Definitely Japan!), see a space launch, maybe be IN a space launch ;-), invent something great for humankind, and otherwise generally be at peace with the world.

The reason why I'm living where I'm at is because of my job. If you had asked me about my identity 5 years ago, I would have answered somewhere along the lines of "I am my job." These days, I'm more and more coming to realize that jobs are temporary; no one was ever lying on their deathbed saying "I wish I worked more." My boss a couple of years ago started a philosophical activity - he filled up a fishbowl with marbles at home. Each Saturday, he takes out one to represent just how much time he has left and how precious the remaining marbles are. It's given him a perspective on how important his time with his family is, and how fragile life is.

I guess what I'm coming down to is -- I'm pretty sure I know what I want out of life. But how did I get so confident, know for sure that's what I want. THAT's what's confounding me. I'll need to reflect on that a little more, perhaps with a little introspective music. "Savin' Me" will do, as will some White Stripes.

Fire done!

Mmm... smores goodness.

Now to get back on track with captioning vids. I've got to queue up Rockstar and All the Small Things, then also get them perma-captions - y'know, the kind that are integrated with the video file, so that they're "always on" - then I can use 'em in my Zune player on the go!

There's a video and a couple of websites floating around touting ways to do this, I'm going to link 'em here:

Looks promising - http://www.vidmex.com/tutorials/insert_subtitles.html

Video of another way to do it: http://www.youtube.com/watch?v=_O1ftKTSprw

One website: http://www.videolan.org/

Leftovers

Now that I'm back from Colorado, and need to put together the photoblog, I'll start off with what's left over from the trip:

1 big bag of marshmallows
14 bars of hersheys
1 somewhat consumed box of graham crackers
1 mostly intact pack of 50 wooden skewers
......

Excuse me while I go make a fire and eat some s'mores. ;-)

Cochlea Hair Cell Regeneration - completed

Here are the notes I took during the HLAA Hair Cell Regeneration Symposium in Nashville, TN. This information is accurate to the best of my knowledge, and I have done as much as I could to leave my opinion out, or at least, clearly show where my opinion and interpretations lie. I would like to qualify that I'm not an expert in this field, and I'll be happy to make any corrections to misinterpretations I've made. That aside, here is the meat:

1) What timeframe are we confident that we will begin human clinical trials on hair cell regen?

The estimate that the panel professed was that it would be 25-50 years before we'll have something for humans. It was not clear if that was clinical trials, or a commercial product, or some other milestone. If they got $50 million in funding today, that would go a long way to being helping have something closer to 25 years. But all agreed it was at least "decades" away.

This $50 million, to put it into perspective:

a) is equal to only a tiny drop of the stimulus funds the US government is putting into the US economy;
b) with 30M deaf and hard of hearing Americans, if they all donated $1.50 or so today, that would equal $50M.


2) What trials are being done on animals or pre-human testing today?

Three animal tests were mentioned by the panelists - chicken/avian cochlea regerneration (started in 1986), mouse cochleas/vestibular systems, and guinea pig cochlea restoration via implanted matter. One panelist was working towards getting approval for an ape/monkey trial. Human trials are still quite a ways off Even once human trials are in effect, getting FDA approval could take 7-15 years.


3) How does one participate in such human clinical trials? What are the costs, requirements, and circumstances around such a trial?

This is a question that, frankly, isn't ready to be answered yet. Researchers are nowhere near enough to trial circumstances that any answers to this question can only be pulled out of thin air. In my opinion, there are quite a number of people who would throw their life savings, their bodies, and their lives at this chance to hear better. There will not be a shortage of people volunteering for trials like this when they're offered.


4) Assuming human trials are concluded and approved, what kind of hearing improvement could one reasonably expect from such a procedure? What hearing level, post-procedure, is realistic?

Again, this is a question that isn't ready to be answered yet. We don't even know what the actual solution is right now - to me, it sounded like 3 possible vectors were being analyzed:

1) Manipulation of the components of the affected ear to replace hair cell loss (via supporting cells) - this is a challenge because unlike chicken cochleas, the human cochlea is extremely complex and has a large number of interactions between components. Small changes can wildly disrupt the entire ear infrastructure, rending one unable to hear at all. We do not yet fully understand the interactions, more research needs to be done to map this.

2) Regeneration of hair cells via genetic science (cell mitosis) - studying the development of hair cells in mice, this may be possible via the introduction of medicine that causes cell regrowth. The issue is a) how much medicine; b) making sure the medicine gets to the right parts and c) making sure that the cell regrowth stops and does not become cancer.

3) Stem cell implantation. Mice and guinea pigs were subjected to noise damage then injected with stem cell matter to restore hearing. Results were that the matter injected found places where there was damage, but it's not clear if any hearing was restored. So it's not clear if any research being done in taking stem cells of ear parts and manipulating them into the cochlea directly is being successful . They did state that the idea of "transplanting" a functioning cochlea from a hearing person into a deaf person is probably impossible, again, because of the enormous complexity of the ear.


5) What kind of candidacy requirements are expected for such a procedure?

That isn't ready to be answered yet. It is expected that the first tests would be with people who lost their hearing to a specific kind of instance such as ototoxity (hearing loss from drugs). In nearly all noted research cases, the animal subject's hearing loss was caused by chemicals wiping out their hair cells.


6) How will one's existing hearing loss affect the expected improvement to one's hearing?

Unknown. A couple of things of note:

Diagnosis for the reason for hearing loss is the first step. If the hairs of the cochlea are not the only problem a patient faces, this specific therapy would not solve the hearing loss problem. Even though Math1 genes have been able to promote balance hair growth in mice, who knows if it'll have the same effect on human cochlea hairs?
An interesting article I've found post-symposium: http://www.audiologyonline.com/theHearingJournal/pdfs/hj2008_06_p46.pdf

The panel answered a question from the audience that they believe that having meningitis and ossification of the cochlea would render the nerves connected to the hair cells useless. Therefore, patients with that kind of problem would have no benefit from this treatment.



7) Will such improvements start in the low dBs, or to the highs, or across the board?

This was not mentioned in any of the discussions. All tests appeared to address across the board hearing loss, not any specific frequency field.


8) Is the procedure repeatable to continually improve one's hearing, or will it be a "one shot" deal?

Unknown.


9) What kind of costs are expected with this procedure? Will it be cheaper than getting a CI? Will it be affordable or only available to the rich?

Unknown, and far too early to tell.


10) What kind of insurance implications will take place with this procedure? Will it compare to what it is like today to get a CI?

Unknown.


11) What risks are expected for such a procedure?

One clear risk covered was that it is not yet known how to control the cell regeneration cycle. If too many hair cells are regenerating, then there is a risk that it will become a cancer.


12) Are there risks that may impact more than just the ear and hearing?

Cancer was one mentioned risk.


13) Is it expected to be safer than a CI, from both a surgery and lifestyle perspective?

Unknown. Too early to tell. One advantage to biological means of restoring hearing is that there would not be a need for providing battery power, for example, to CI equipment.


14) In such a procedure, would someone with some existing residual hearing run the risk of losing such residual hearing, i.e. go completely deaf if the procedure is not successful? Or will that hearing be left intact and the procedure simply supplement one's hearing loss?

In one instance, sound damage was used on mice and guinea pigs. Then neural stem cells were implanted into the animal's cochlea. A number of stem cells did survive and move to the correct location of cell damage. It was not clear from the presentation, however, whether this indicated the animal regained their hearing. Only that the stem cells did seem to do the "right thing."


15) Will having a CI already implanted complicate the procedure? Is it better to have "virgin ears" with residual hearing and no CI to remove?

This was not addressed at the presentation.


16) Would someone who has been deaf for a long time benefit from this procedure? Would it be better for someone to have a CI for a long time and have this procedure, or be deaf for a long time and have this procedure?

This was not addressed at the presentation.


17) Will CIs become obsolete shortly after this becomes available?

This was not addressed at the presentation.


18-NEW) Does it make a difference in the procedure's chances of success depending on whether the patient lost their hearing due to the environment, or due to their genes? I.e. what impact does this have on Connexin 26 patients?

The example of the ossification of the cochlea, where bone or other hard material make it impossible to connect cochlea hairs to nerves, does negate the benefits of hair cell regeneration. There must be other, similar circumstances, such as if no nerves are connected to the cochlea, or no way for the hair cells to regenerate in a cochlea. The nerves must be present and the cochlea able to transmit data to the nerves in order for hair cell regeneration to be effective.

Back

Eh, I'm back from the mountains. I need another vacation.

Off to work I go. I owe, I owe, it's off to work I go. Well, I do owe some people the rest of my notes re: Cochlear Hair Cell Regeneration, so if I have time today (hah!) I'll get right back on 'em.