PhoneBoy Says

As a child, I don't recall giving very many gifts to my parents. One gift that I gave to my dad was a metal "sign" that said the following:

Never get too busy making a living that you forget to make a life.

To be honest, I'm not even sure where I found it. Probably the Flea Market, which I spent many weekends at growing up buying and selling things with my mom. And surely by that point I was starting to become less enamored of my dad, which I did because I didn't understand why he was the way he was¹.

And, of course, when I found out my dad passed away a few years back, one of the only things I wanted of his things was that sign².

This sign today sits in my office in a part I don't use very often. I found it recently and, perhaps for the first time, really started to think about what it meant.

I spend too much time "working." I'll be the first to admit it. Not just stuff for my job but things that might be classified as "busy work." It may be because the cacophony of "life" is often too much to take3. See my last post on the [intense world theory [phoneboy.info]]. "Work," by comparison, seems like an escape--something I have a lot more control over.

What I'm starting to realize, as I get older, is that there is going to be a time where I don't want to work anymore. Whether I can afford that remains to be seen but if I'm going to be able to do that, I need to figure out what that "life" is going to look like.

And heck, even for leisure time while I'm still working, I need to figure out something else.

I've read a whole lot about autism and Aspergers Syndrome over the years. However, I think I've finally found an article that explains the condition to people who don't have it and, more importantly, provides some keen insights about autism's more socially unacceptable symptoms and how they might be reduced or eliminated¹.

IMAGINE BEING BORN into a world of bewildering, inescapable sensory overload, like a visitor from a much darker, calmer, quieter planet. Your mother’s eyes: a strobe light. Your father’s voice: a growling jackhammer. That cute little onesie everyone thinks is so soft? Sandpaper with diamond grit. And what about all that cooing and affection? A barrage of chaotic, indecipherable input, a cacophony of raw, unfilterable data.

Realize that not everyone that has autism or Aspergers reacts the same way to the same stimuli. Even the same person can react differently to the same set of stimuli at different times, depending on a wide range of things. At least this is my own personal experience, which is certainly different from everyone else's.

I can tell you that when external stimuli begins to impact me, whatever it is, whenever it is, I am overwhelmed to the point where rational thought becomes very difficult, as this article describes:

The behavior that results [from autism] is not due to cognitive deficits—the prevailing view in autism research circles today—but the opposite, they say. Rather than being oblivious, autistic people take in too much and learn too fast. While they may appear bereft of emotion, [Henry and Kamila Markram] insist they are actually overwhelmed not only by their own emotions, but by the emotions of others.

A lot of what people on the autism spectrum do in order to cope is to attempt to eliminate or even slow down the constant flow of stimulus from the world. In social situations, this can sometimes seem like uncaring or antisocial behavior, when in fact, the behavior is rooted in being overwhelmed or avoidance.

Indeed, research on typical children and adults finds that too much distress can dampen ordinary empathy as well. When someone else’s pain becomes too unbearable to witness, even typical people withdraw and try to soothe themselves first rather than helping—exactly like autistic people. It’s just that autistic people become distressed more easily, and so their reactions appear atypical.

[…] “The overwhelmingness of understanding how people feel can lead to either what is perceived as inappropriate emotional response, or to what is perceived as shutting down, which people see as lack of empathy,” says Emily Willingham. Willingham is a biologist and the mother of an autistic child; she also suspects that she herself has Asperger syndrome. But rather than being unemotional, she says, autistic people are “taking it all in like a tsunami of emotion that they feel on behalf of others. Going internal is protective.”

The funny thing is I regularly find myself reacting badly to television shows. I can see what the character is going through on the program or predict what's going to happen next, and it can be painful to watch. Same with movies. Perhaps this is why I find little joy in television and movies on the whole².

So now we've established the problem, the question is: why? The Markrams did some research on rats they they were able to make appear autistic by exposing them to valproic acid (VPA) prenatally and look at their brains, with the help of a graduate student. It took a couple of years of research before they saw something that could explain things:

“There was a difference in the excitability of the whole network,” [graduate student Tania Rinaldi Barkat] says, reliving her enthusiasm. The networked VPA cells responded nearly twice as strongly as normal—and they were hyper-connected. If a normal cell had connections to ten other cells, a VPA cell connected with twenty. Nor were they under-responsive. Instead, they were hyperactive, which isn’t necessarily a defect: A more responsive, better-connected network learns faster.

Learning fast is not a bad thing. It's certainly something I've used to my advantage over the years. However, clearly with negative behaviors, it can be a bad thing. In fact, the Markrams observed that the VPA-exposed rats were quicker to get frightened, and faster at learning what to fear, but slower to discover that a once-threatening situation was now safe.

While ordinary rats get scared of an electrified grid where they are shocked when a particular tone sounds, VPA rats come to fear not just that tone, but the whole grid and everything connected with it—like colors, smells, and other clearly distinguishable beeps.

“The fear conditioning was really hugely amplified,” Markram says.

And therein lies the issue for many people that are on the autism spectrum, myself included. Once something is learned to be feared, which happens quickly thanks to the extra neural pathways, unlearning that takes a lot of work. This has caused me a fair bit of challenge in my personal relationships over the years.

Meanwhile, there's hope for those born today. If autism is detected early enough, which it can be, "Early intervention to reduce or moderate the intensity of an autistic child’s environment might allow their talents to be protected while their autism-related disabilities are mitigated or, possibly, avoided."

It sounds really promising.

It's been about a month since I've gotten my CPAP machine. So far, it's been working pretty good for me. Not that it was an issue before, I've pretty much stopped moving in my sleep. This means I'm a bit more stiff when I wake up as I tend to stay still. I also wake up quicker and generally feel like I'm sleeping better. All good things.

That said I have a CPAP that collects data, so why not look at it, right? First I tried using a tool called SleepMapper which is an online service the manufacturer of my CPAP machine Philips does. It reads the data from the SD card in my CPAP machine using a Java app (ew!) and uploads it to a website where the data can be viewed.

Unfortunately it doesn't really show me a lot of data, as you can see. Just my AHI, therapy hours, and mask fit. The app also inexplicably couldn't find new data on my SD card for a three day period.

Meanwhile I found an open source app called SleepyHead that is able to read CPAP data from a number or machines, including mine, and render a report locally. It shows me a whole lot more data:

The breakdown between airway obstructions and hypopneas in my AHI is nice. It's also nice to see that, generally, my mask is fitting well except on one night when I apparently had an issue.

It also looks I needed a little more pressure than normal to keep my airway open than usual at some point. SleepyHead shows me graphs of the raw data. I can see that at around 4:40am I had an obstructive airway event that led to what are marked as "vibratory snores." According to SleepyHead's Sleep Disorder Glossary, a snore is "a loud upper airway breathing sound during sleep, without episodes of apnea."

To be honest, I'm not sure what good all this data does for me at the moment. The AHI number is low enough, which I'm sure is all my doctor will care about. I'm sleeping better, too, which at the end of the day, is why I got a CPAP to begin with.

It's been a week since I got a CPAP machine. I've slept with it on every night since I got it, and I have to say: I've definitely noticed the difference. I'm less tired in the morning and during the day.

My family noticed it, too. More specifically, they've noticed the utter lack of snoring. It was quite loud before I had the CPAP. Now, just the quiet hum of the CPAP machine. I even used an old iPhone app called Sleep Analyzer to record any loud noises that occur when I sleep to prove it to myself. The loudest thing it recorded was me turning over in bed--a far cry from the snores it used to record.

Even better, of course, is my Apnea Hypopnea Index (AHI) number, i.e. the number of breathing events per hour that occur in the middle of the night that interrupt my sleep. Over the last 7 days I've averaged a 1.3, which is a definite improvement over what I had at my sleep study.

Another stat: I'm averaging about 7.5 hours of sleep a night over the last week. This is what my CPAP machine is telling me anyway but it gives a slightly higher number in terms of "therapy hours" which reflects when the machine is actually running.

My only issue at this point is traveling. At the very least this is one more thing I will have to carry with me on the airplane. I probably won't be able to use it on the plane for the really long trips but it's not like you can get really good sleep on an airplane anyway.

After finally meeting with my pulmonologist, getting directed to a medical equipment supplier in my area, scheduling an appointment, and going to said appointment, I finally have a CPAP machine.

The machine I got (pictured above) is a Philips Respironics DS560S, or by another name, a REMstar Auto. The device is an Auto-CPAP, which means it adjusts the amount of pressure needed depending on how well I'm breathing at any given moment. This pressure is designed to keep your airway open while sleeping to minimize the number of apneas (stop breathing) and hypopneas (shallow breathing).

Last night was the first night I slept with it, and I have to say: it made a difference. This morning, I was actually awake when I woke up, rather than my usual grogginess. I can't remember the last time that happened. That said, I woke up several times during the night as I'm clearly not used to sleeping with a mask on.

One stat my machine gives me is my AHI value. This is the Apnea Hypopnea Index, i.e. the number of breathing events that occur in the middle of the night that interrupt my sleep. Since this machine auto titrates, it has to know when I have an event in order to ramp the pressure up.

During the recent sleep study I did, my AHI was 8.9. Last night with the CPAP: 2. That puts me into the normal range and it makes a noticeable difference.

I also got a humidifier with my unit but I didn't use it last night. Compared to my usual non-CPAP sleeping, my mouth was actually less dry so I don't intend to use it unless it becomes an issue.

The mask I got, for those who are interested, is a Fisher and Paykel Simplus. It's a full face mask and it fits me comfortably--more so than the masks I tried on at the hospital. That said everyone is different as to what works for them and their are many choices available.

So far I'm liking the results.

From The Internet, social media, and me.:

When I look at my posts on my blog from 11 years ago I feel as though I’ve lost something vital to my writing because of social media services. My posts on my site resonate with me much more than my posts on Facebook do. And that’s assuming that I can even find my posts on Facebook. What I realize is that I no longer feel like a creator, I’m back to feeling like a passive user. It’s not that I don’t make things and put them on the Internet, but I don’t feel as though I own them. They don’t feel as though they are mine. I am making content that either is transitory by design in the case of microblogging, or enriching a company’s product. The feeling of ownership is a subtle and tricky idea, especially when it comes to things on the Internet, but I miss it.

In the early days of the Internet, there was no widely used thing like Facebook where you could share whatever it is you wanted to share. You had to build a website, either by hand in HTML (which I did several times) or, later, using some sort of content management system (of which I tried many over the years).

I remember when my son was born and my wife and we wanted to share photos with family and friends. The way I achieved this back then was to set up a hidden URL on my website that I didn't publish anywhere except in email to those I wanted to share it with. The photos were on my server and I could easily take them down anytime I wanted. Obviously my family and friends could have reshared them, but in those days, that was much more difficult.

These days, of course, we'd use Facebook or a text message. Mostly because that's what everyone we know uses and convincing them to go use some other site they weren't already using is just too high a barrier to entry.

I've been thinking lately, perhaps along similar lines as my friend Isaac that I quoted above. While I don't see myself necessarily getting rid of social networking altogether (though the mix of services I use will change over time), I do want to feel closer to that which I create. Rather than simply pumping content into the various social media machines, with no expectation of seeing the content again, I want it all come from a single canonical location where I can take back of the control from the Twitters and Facebooks of the world.

In practice, this is going to be tough. Even this blog post is coming from a platform on a server someone else maintains, but at least 10 Centuries aligns a lot closer to my philosophy (and I pay to boot). Version 3 of the 10 Centuries platform (hopefully out soon) will bring me closer to where I want to be.

I have no issue federating some of my content to other platforms. That said, the critical stuff I want stored on my primary, central platform, whatever that ultimately will be. That way I have some assurances that I can access it again whenever I feel the need.

I've been pretty consistent that I view the monies I've paid to App.Net (ADN) as an investment. However, like every investment, you have to evaluate what you've put into it compared to what you think going to get out of it. Eventually, you come to a decision: do you continue to invest or not?

I know ADN is a whole lot more than Alpha, the thing everyone compares to Twitter. I know ADN as a social platform is superior in many ways to other things out there. It is, unfortunately, lacking in one very critical thing that becomes apparent more and more with each passing day: people who actually use the platform as it was intended.

Plenty of people that used to be on ADN have already made the decision to retreat back to Twitter. I never left Twitter and, as my Alpha stream is showing contributions by fewer and fewer unique voices every day, I am spending more and more time on Twitter and Facebook.

Further, I really don't have any idea what, if anything, the ADN guys are doing beyond keeping the service running. Given the number of people I've seen not renew, I have no idea if the money coming in covers the costs, much less the time it takes to keep things running.

And the other things that ADN is good for that aren't Alpha? Most of the devs that were building apps gave up, mostly because the people just weren't there to justify the effort.

The investment I made in ADN did pay off. I met some great people that I wouldn't have met otherwise, I got exposed to some new technology, and I learned a great deal about myself in the process.

Unfortunately, with the trajectory things are on, and the likelihood that trajectory will change for the better anytime soon, it really doesn't make sense for me to continue to pay for ADN. Sure, $36 a year is not much in the grand scheme of things, but the continued returns on that investment just aren't there.

So, yes, I'm planning to drop to the free tier, but unlike a lot of people who have come to a similar conclusion, I am manually pruning my follow list now to get below the 40 user limit so I know who I'll be following when the time comes. I intend to remain active to the bitter end.

It's going to be another week or so before I am able to see my pulmonologist to discuss treatment options for my sleep apnea, but today I received the notes from the doctor that observed the sleep study I had last week.

First, let's start with the actual diagnosis: mild obstructive sleep apnea syndrome.

What is obstructive sleep apnea? This is when you stop breathing in the middle of the night because your airway is obstructed. This happens because, when you sleep, all your muscles relax, and this includes the muscles in the throat. The soft tissue surrounding these muscles can obstruct your airway. Clearly, this is happening for me.

When you're sick, say, with a cold or a throat-related infection, even people without sleep apnea can have temporary issues with their sleep. This is because things in the mouth and throat are inflamed or have additional mucous that can restrict the airflow. This might be one reason why sleep may not do as much for you when you're sick--you're not able to sleep as well as normal!

One thing that can create or exacerbate issues with sleep apnea is your weight. It might explain why, more than 10 years ago when I was thinner, my snoring wasn't quite as bad and why I feel I'm sleeping better now that I've lost some weight. Being over 40 and having a large neck are also risk factors for sleep apnea.

Some symptoms of sleep apnea also include: hypersomnia (otherwise referred to as excessive daytime sleepiness, something I'm sure I have) and morning headaches. I've had morning headaches on and off for most of my adult life. The last few years, they occasionally turned into migraines, which have thankfully not been an issue in the last 6 months or so.

So what is "mild" sleep apnea versus, say, "severe"? It comes down to the number of events per hour in a given night where you either stop breathing entirely for longer than 10 seconds (apneas) or you breathe more shallowly because your airways is restricted (hypopneas). Per the Harvard Medical School, having more than 30 respiratory events per hour is considered severe sleep apnea. Less than 5 events per hour is considered "normal" (or at least not sleep apnea) with "moderate" sleep apnea being between 15 and 30 events per hour.

The number of events I had per hour? More than 5 but less than 15. That puts me in the mild category. Hopefully, this means anything I can do to treat my sleep apnea will probably help a lot. There are lots of possible treatment options, but the most common one to start with, because it is the cheapest and most effective, is a CPAP machine. Which, as I noted earlier, I already know is in my future.

On a recent podcast, I pointed out some of the dietary guidelines we've had been given in the last few decades was full of crap, more specifically the ones that said we should eat a low-fat diet. It generated some discussion on my Facebook timeline.

At various points in my life, I have tried to eat differently in order to lose weight. The only thing I did that approached success was Atkins, but I could not sustain it long term. Many other things I tried either didn't work at all or did only for a very short period of time and probably weren't healthy for me in hindsight.

Now that I know I am diabetic, it turns out a diet lower in carbs is what I need to not risk complications from uncontrolled diabetes. I know that being as hardcore about carbs as when I was on Atkins is simply not realistic, but I can see very clearly in my blood sugar numbers when I have too many of the wrong carbs on any given day.

Lowering my carbs, along with keeping an eye on my caloric intake and being more active has improved my weight situation. So far I'm down about 30 pounds since October, which is nothing to sneeze at, but I could lose a whole lot more.

In general, I would be wary of any dietary advice with the possible exception of the dietary advice provided by Brazil's Ministry of Health. Ultimately, you have to figure out what works for you.

From Democrats seek relief from health law penalties:

WASHINGTON (AP) — The official sign-up season for President Barack Obama's health care law may be over, but leading congressional Democrats say millions of Americans facing new tax penalties deserve a second chance. Three senior House members told The Associated Press that they plan to strongly urge the administration to grant a special sign-up opportunity for uninsured taxpayers who will be facing fines under the law for the first time this year. The three are Michigan's Sander Levin, the ranking Democrat on the Ways and Means Committee, and Democratic Reps. Jim McDermott of Washington, and Lloyd Doggett of Texas. All worked to help steer Obama's law through rancorous congressional debates from 2009-2010. The lawmakers say they are concerned that many of their constituents will find out about the penalties after it's already too late for them to sign up for coverage, since open enrollment ended Sunday.

Even though I don't regularly watch my evening news, I paid attention to enough things to know two things about Obamacare (or what is more formally called the Affordable Care Act):

• Obamacare would change the healthcare laws in the United States to allow more people to have health care coverage. Though some may debate that actually happened, I'm not really interested in debating it one way or the other.
• Obamacare would essentially require everyone to have healthcare insurance, placing a mandatory tax on those who chose not to participate for whatever reason. While some would debate the constitutionality of such a tax, the US Supreme Court said it was constitutional.

Now Obamacare is the law of the land and the very same Democrats who pushed Obamacare through Congress are now realizing what they signed their constituents up for--a tax they may not be aware they have to pay and may only find out about it while filing their federal income tax. And, due to the fact the Open Enrollment period is now closed for ObamaCare health plans, constituents who aren't covered by a health plan have no way to get covered. Democrats are asking for a special enrollment period to give these people a chance to get covered.

I'm not a lawmaker, nor do I play one on TV, but wouldn't anyone reading the bill before it was a law think, maybe, this would have been a good, common sense idea to incorporate? Or even better, making the Open Enrollment period coincide with tax season? Did they think their constituents would be happy with a mandatory tax for choosing not to have healthcare insurance?

Of course, with the Affordable Care Act clocking in at nearly 1000 pages, I doubt any one member of Congress actually read the entire thing, much less could accurately articulate everything it implements. Is it too much to ask to expect our Congress critters to actually read the legislation they vote to pass into law? Are there any other unintended consequences hidden in this law that haven't yet been brought to the surface? I'm sure we'll find out, I just wish we knew before it was the law of the land.