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Hunting Down My Son's Killer

matt.might.net

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Re: Hunting Down My Son's Killer

#241

Post by sofal »

run4yourlives wrote: post #228
gcheong wrote: post #204

Earlier quoted context omitted.

Yes, exactly - and where did this idea that they should have kids come from? What I'm saying is that people need a balanced perspective when deciding and all too often it is the "everyone should have kids" voice that is only heard and anyone that states anything to the contrary is summarily dismissed or berated. That is changing, albeit slowly but I will also be the first to say that at the end of the day if decide y…

I'm not sure where you are hearing the "everyone should have kids" refrain in 2012. Perhaps this is from your parents or friends? I'd submit too that perhaps a lot of it is self imposed, as witnessed by your comments in this thread that immediately assumed more than one person was of the opinion that we are somehow insinuating you are a lesser person from not having kids. Outside of your own family, there's not a hec…

It actually feels good to me to see you talk about the idea of society pushing you to have kids with such incredulity. You clearly haven't experienced the religious culture that I have, which pushed my wife and I to have children ASAP, and continually preaches that if you don't find parenthood (particularly motherhood) extremely fulfilling then there is something wrong with you. I assure you that this culture is still very alive and well in 2012.

Re: Hunting Down My Son's Killer

#242

Post by rhino42 »

CWuestefeld wrote: post #165
its_so_on wrote: post #149

Earlier quoted context omitted.

I don't like your tone. I have no horse in the race and am not a doctor, but doctors aren't Gods. They learn certain foundational things (names of bones and muscles; organic chemistry) then they learn thing related to the practice that doesn't necessarily rely on any of that stuff. (Diseases; drugs) For diseases, you should try reading through the Merck manual (available online). Everything from gynecology, oncology,…

I think I know what you're trying to say: that it's not hard for us to learn some facts, but they're less useful without a broader knowledge of human physiology that an MD would be presumed to have, and we don't. And there's certainly truth to that. On the other hand, there really are things the lay person can learn and understand well, even in the complex human body. I have an unusual, if not rare, condition (Crohn'…

First, mad props to you for taking control of your situation. Unfortunately, the vast majority of Americans can't (or won't) do that. If americans had control of their own medical actions, they would be even more susceptable to medical advertisements and would ultimately make terrible medical decisions (like, for instance, not giving their children vaccines due to fears about vaccines causing autism).

Re: Hunting Down My Son's Killer

#243

Post by sofal »

run4yourlives wrote: post #186
gcheong wrote: post #167

Earlier quoted context omitted.

"That is what parenthood does to you." No, that is what parenthood has done to you. And I'm glad for you but you don't have to look far to find people for whom the effect was less than positive and if I relate more to those people than to you then I would do well to heed their warnings than your espousing of supposed absolute truth. Seriously why is it that parents want to convince others who don't buy into the whole…

>than your espousing of supposed absolute truth. Sorry but it sounds as if you have some personal issues. I'm telling you that being a father is awesome because it is. If I told you that skydiving is awesome, would you comment how I was talking about how skydiving is awesome as if it was some sort of absolute truth? Of course it's my experience. All my opinions are my experiences. If you are already a parent and hate…

So the logic is: you wouldn't understand because you're not a parent, but if you are a parent then you're not a good one (i.e "you haven't been able to take the same things I have from this experience").

Re: Hunting Down My Son's Killer

#244

Post by mohawk »

First i wish to say good luck to your family, i hope you can find something.

Ok here's a guess:

Assuming missing deglycosylation and N-Glycanase's involvement in ERAD (endoplasmic-reticulum-associated protein degradation), perhaps there is amyloid fibril formation due to faulty protein degradation?

If yes, you may want to try out green tea or some kind of extract from it, in particular Epigallocatechin gallate sounds interesting. Besides antioxidant activity (which i guess could help with excessive glycosylation causing an oxidative environment), EGCG is thought to help in various diseases where protein aggregation plays a role. You can find lots of papers on this if you search for "epigallocatechin gallate amyloid" on Google scholar. I'm not a doctor, just a grad student (thanks for the guide!), so you should check with one first if that makes sense.

Re: Hunting Down My Son's Killer

#245

Post by kellishaver »

CWuestefeld wrote: post #165
its_so_on wrote: post #149

Earlier quoted context omitted.

I don't like your tone. I have no horse in the race and am not a doctor, but doctors aren't Gods. They learn certain foundational things (names of bones and muscles; organic chemistry) then they learn thing related to the practice that doesn't necessarily rely on any of that stuff. (Diseases; drugs) For diseases, you should try reading through the Merck manual (available online). Everything from gynecology, oncology,…

I think I know what you're trying to say: that it's not hard for us to learn some facts, but they're less useful without a broader knowledge of human physiology that an MD would be presumed to have, and we don't. And there's certainly truth to that. On the other hand, there really are things the lay person can learn and understand well, even in the complex human body. I have an unusual, if not rare, condition (Crohn'…

For some people this would work well, and when you do know a lot about your condition, it is very annoying to have to deal with doctors who have to come to and verify conclusions that you have already made.

I have a pretty dense medical knowledge compared to the average person. My mother had a lot of medical issues that I studied in detail. I have several of my own that I have also studied at great length, and I used to be an EMT. Waiting around and going through a tedious process for a new doctor to "catch up" with you is frustrating.

A lot of people aren't like this, though. I have a friend who, after weeks of not feeling well, had, at one time, read pages and pages of research on a particular disease and had convinced herself that this was the thing she had, this was why she was sick, and this was what she needed treatment for. What she failed to neglect was the title of the paper -- she had diagnosed herself with kennel cough.

As much valuable information as there is available on the internet, I also feel like the internet breeds hypochondriacs like nobody's business.

So I don't really think we need a change in the way healthcare is delivered, exactly. I think what we need is more education for would-be doctors about how to better engage and involve a patient in their own care and how to talk to a patient sincerely about their condition and evaluate the people who just googled something vs. the ones who genuinely know what they're talking about, and then how to work with the latter.

Good doctors will do this naturally, but a lot of doctors will take the attitude that they are the doctor, they know best because they have been to medical school. They may well have a better overall understanding of things, which can very well be extremely important when looking at how diseases and medications interact in conjunction with and affect one another. However, there simply isn't enough time for them to become experts on everything. There should be more emphasis on this fact and more instruction on how to work with the patients to make them the experts so that they can be more involved in their care.

I feel like I'm not making my point well, but this is starting to ramble a bit, so hopefully that makes sense.

Re: Hunting Down My Son's Killer

#246

Post by bhickey »

mattmight wrote: post #56
waffle_ss wrote: post #38

Thanks so much for the fascinating and emotionally stirring article. I will definitely be passing this on to others I know. The thing I kept thinking during the article is, "Is there something that I, as a programmer, can do to help people like Bertrand?" Is there some way that we programmers could use our talent to augment or advance existing technology in this area? I realize that the science involved here is non-t…

Computational biology is a field with much room to grow. Finding a mutation is just the start of the journey for someone like Bertrand. Once you find the mutation, you have to figure out what the mutant gene does versus the normal gene. Duke had to work with a lab, culturing cells from my son and poking at them to figure this part out. If we were better at predicting the structure of proteins from the DNA that encode…

I've spent a bit of time waffling about writing this. I hope I'm not crass.

There's a major problem with incentives in attracting people to research. Why should supply and demand behave differently at universities? I believe that research is an example of the tragedy of the anti-commons.

If I were to jump back to computational biology my lifetime wages would conservatively decrease by $5 million, non-inflation adjusted. Many people are unable to accept lower wages for more interesting work. The wheels of scientific progress will turn slowly as long as it is the sole realm of those able and willing to accept substantial economic sacrifices.

I want to help, I'm just not able.

Re: Hunting Down My Son's Killer

#247

Post by sofal »

mcmatterson wrote: post #133
aidenn0 wrote: post #47

Earlier quoted context omitted.

A non-parent could similarly argue that you don't get to pass judgement since you are under the influence of cognitive dissonance. Regardless, I have met parents who feel that way, and it can often turn out poorly for the child, though it really depends. One person I know who feels this way is a DBA who earns more than enough for his wife to raise the kids. She works part-time more to escape cabin-fever than to earn…

This is already a busy topic, and this is as good of a chance as I'll have to get something off my chest, so here goes... There's an obsession verging on dogma in much of the hacker world that rationality is the only path to correct action; that by virtue of being hackers we are all somehow divested of otherwise human frailties like emotion, love, and irrational behaviour. As one of the commenters on this thread so w…

You're entire rant against rationality is misplaced. "The only objective truth is that there are no objective truths." Please. You may argue that your feelings of love and devotion as a parent are irrational in nature, or even that they're somehow outside of the realm of time and space, but that is neither here nor there when talking about whether parenthood is so consistently fulfilling, irrational or not, to the point where we should recommend it for everyone.

Re: Hunting Down My Son's Killer

#248

Post by nitrogen »

arn wrote: post #223
CWuestefeld wrote: post #180

Earlier quoted context omitted.

I do keep the same GP and GI docs. I'm not allowed to have the relationship I describe. Even when I really do know the right answer, FDA laws require me to go to the altar of the MD to get a signed prescription. I'm forced to wait two weeks to get that appointment, even though I know the right answer. (In reality, the doc is generally willing to call in the script on my say-so over the phone, but he's not supposed to…

I don't get it. You are saying you don't actually have to go see a doc "in reality" then how are you complaining that you have to see a doctor before getting treated.

It sounds like CWuestefeld is complaining that the only way to get by is to bend the rules, and therefore, the rules are wrong and getting in the way.

Re: Hunting Down My Son's Killer

#249

Post by waterlesscloud »

jakejake wrote: post #137
altrego99 wrote: post #20

Earlier quoted context omitted.

Sorry, not worth it at all. Years 1-10 - you will loose all your time - cleaning diapers, making the child eat, making it study, teaching it values - waking up at night - and doing a lot of things for it. Yes you'll see it learn, smile, grow up and you're genetically conditioned to like it. But you will not be able to play your games, go to your parties - read book or contemplate on life, or code without expecting in…

I think a lot of people start out this way including myself. As you hit your late 30's I think is when even some hard-core no-kids people start to re-evaluate their thinking. I still don't have kids but I'm not anti-kids anymore so if one day it happens I'll be ok with it. What changes is that you go around year after year and you start to see things become a bit repetitive. Holidays with the family, celebrations. Yo…

In my 40s, and I'm just happy people have stopped questioning my no-child choices.

Re: Hunting Down My Son's Killer

#250

Post by nitrogen »

sevenstar wrote: post #127
GigabyteCoin wrote: post #104

Earlier quoted context omitted.

No, it won't. http://en.wikipedia.org/wiki/Medical_uses_of_silver#Adverse_...

Thanks, it looks like the medical industry is trying to bury my post.

Just so you are aware, your posts on this thread have probably gotten your account automatically banned for excessive downvotes and flags.

You are probably being downvoted because you are giving potentially life-threateningly bad advice, not because "they" are trying to bury your post.

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