One Sick Mother

10 Myths Regarding Autistic Spectrum Kids

 Recently. I was clearing out my inbox, which has stuff in there going back to 2002 (if I haven't responded by now, well, I guess I am never going to!) and I found some hilarious e-mails and exchanges I had in relation to a little fun exercise I ran years ago across some special needs message boards, which were entitled "The Golden Crock Awards" . We accepted nominations from parents of the biggest "crock" they were handed by a professional regarding the evaluation or diagnosis of their special needs child. There were a few doozies in there. Some I found/remembered:

• "He can't have Sensory Integration Dysfunction because he eats potato chips"
   
• "He can't have Autism because he makes eye contact"
   
  
• "She can't be autistic because she smiled at me"
    
• "He can't be autistic because he is affectionate towards you"

Now, all of these comments were made by professionals: psychologists, teachers, therapists and the like. I got to thinking if the professionals are still saying (untrue) stuff like that, there still must be a lot of myths floating out in the general population. So this is my little attempt to bust a few of them. There are a few  "submyths" in there that I thought merited special mention, too.

I know there are a lot of blogs and articles out there about the "myths of Autism" and I read a few of them. I don't want to duplicate anyone's work. The problem I have with most of these other articles is that they talk about this entity "Autism" almost as if it were some kind of entity in its own right.

It isn't. 

When I use the term "ASD Kid" herein, I am referring to children with an Autistic Spectrum Disorder. This could include kids with the diagnosis of Autism, Autistic Spectrum Disorder, Autistic Disorder,  PDD-NOS (AKA Atypical Autism), Asperger's Syndrome and High-functioning Autism. I am not sure if this list also applies to Rhetts Syndrome or CDD because I don't have enough direct experience of those disorders, even though they are also Autistic Spectrum Disorders.

Myth 1: ASD kids are Loners

Submyths:

ASD Kids Don't Make Friends

ASD Kids Can't Make Friends

ASD Kids Don't WANT Friends

These myths seem all to be predicated on a single incorrect assumption: That an Autistic spectrum disorder only impacts introverts (and is then compounded by another assumption that introverts don't want or need friends). Extroverts seemingly get off scot free in this myth. You know, if that were true, we could shortcut a lot of the research and just concentrate on the differences between the introvert and extrovert personality. That way, we would probably have Autism solved in about three years.

But Autism does not discriminate based on personality. Extroverts are just as likely to be impacted. The difference between introverted and extroverted ASD kids is that the extroverted kids will attempt way more social interaction. They just usually go about it all wrong!  Joe's preferred method of initiating play when he was a non-verbal little tyke was to charge up to an unsuspecting kid and bodyslam him/her.  Needless to say, this method -while an excellent way of gaining someone's attention (and their Moms!),  was a poor way to initiate positive interaction. Joe needed to be taught how to approach kids and talk to them. It was not something he inherently understood, as most regular kids do.

The very sad thing about this series of myths is that they can become self-fulfilling. ASD kids can become frustrated after repeatedly failing to connect or bond with other kids. Or they can become sensitive to other kids' remarks about them being "weird" (etc. etc. ad nauseum). Because let's face it: All kids can say mean things, whether intended or inadvertent, and eventually the ASD kid just won't be able to take the rejection and pain, and will opt to stay indoors and play videogames.

Another thing that can happen -especially to the introverted ASD kids, is that they realize a little later in their childhood that they actually DO want friends, but starting late, they have difficulty breaking into the interactions, social circles and cliques that have developed amongst their peers while they were off in AutismLand.

Despite all this, many kids with an ASD can and do make friends.  They often tend to have one or two close friends rather than a large circle of friends, and they generally tend to prefer one-on-one or small group activities as opposed to large group activities.  I am generalizing here (which I hate); there may well be the social butterfly Autie out there who has lots of friends and thrives in large groups!

 

Myth 2. ASD kids have no sense of humor

Submyth: ASD Kids Don't Smile or Don't Really Laugh.

Yeah, right! The kid on the right,who is trying to "sneakily" smoosh the icecream into his sister's face, is autistic.

Many ASDs kid do have a good sense of humor and often respond very well to humor from others. Many of these kids will have quite a dry sense of humor, and while they may not get certain jokes, they can floor you with some other forms of wit: including sarcasm! (I know! Free mythbuster! Some ASD kids understand and use sarcasm!)

ASD kids do laugh and smile. They just may not laugh or smile at you.

Get over it.

Myth 3. ASD Kids Can't/Don't do Sports

While many kids with ASD can have problem with muscle tone and hand/eye coordination, some can be quite sporty and coordinated. Remember Jason McElwain, that kid who scored all those points in basketball?

Of course, a lot depends on the sport and the support of the team and coaches, but having Autism does not mean one is automatically excluded from all sports, ever.

 

Myth 4. All ASD kids Have Special or Amazing Talents (like Rainman)

Submyth: Aspie Kids are "Little Professors"

Wrong on both counts. It is perfectly normal and acceptable to have Autism and NOT have any super savant skills. Yes, some ASD kids have great memories and splinter skills at directions or math. However the estimated number of true Autistic Savants is very small indeed. it is thought that there are approximately TEN (10) individuals in the entire world who are are true savants.

Some ASD kids are very smart, and some will appear very smart when talking about their special interest, but in truth, many ASD kids simply have a regular IQ with a hearty side of Autism.

And some are mentally retarded.

And while many Aspies do use language a little differently than the general population and many will talk your ear off about all sorts of things from lightbulbs to the Milky Way, Aspie kids are kids first and Aspies second. It is a mistake to forget this.

Myth 5. ASD kids Have No Empathy

This myth is bullshit, pure and simple. ASD kids can and do have empathy. A lot of the time their problem lies in determining when empathy is appropriate, because they have such a hard time reading facial expressions and body language. So while an Autie may understand a very clear signal, like crying, he may misunderstand a more subtle (to him) signal, such as a grimace of pain. Once they gain some skills with regard to reading people (or have a situation explained to them), some ASD kids can become remarkably empathetic. I talk a little bit more about this here.

Myth 6. ASD Kids are a Result of Bad Parenting

More bullshit. Many parents of ASD kids also have neurotypical children. So how can that be explained?  Both parents just spontanously decided to use a completely different parenting style on the other kid(s) Think about it. That theory just makes no sense.

Myth 7. ASD kids are Not Affectionate.

Not true, although how they show affection can vary hugely:  Contrary to the sterotypes, some ASD kids can be huggy and kissy.

 

However, most will relate to people differently and will show their affection in ways that are not easily understandable to a neurotypical... anyone.

For example, many ASD kids may relate to people through objects. An ASD child may show you huge favor or affection by giving you something special (to him) or by allowing you to hold or stroke their favorite thing. You just may not appreciate the gesture (which in turn might insult the child, and we are back to the self-fulfilling thing again).

Myth 8. All ASD Kids are Touch Adverse

It is true that some (many) Auties are touch adverse, because of tactile defensiveness.

Yet even the touch adverse kids may like certain kinds of touch. Grace used to jump out of her skin if you gently touched her or even if you brushed against her, but she loved to be held tightly or massaged. As Temple Grandin said "light touch is alerting, deep touch is soothing".

 

Myth 9. ASD kids Don't (Can't) Tell Lies

Most can and will. However, they usually stink at it.

 

Myth 10: ASD Kids Don't (Can't) Make Eye Contact

That whole "no eye contact=autism" equation is a TOTAL myth. For starters, bad eye contact is not exclusive to Autism and is not a hallmark of the condition. I don't have Autism and I had a problem with eye contact as a kid. Heck, I didn't learn eye contact until a Dublin street musician taught me the value of it one summer afternoon when I was 19 (...and yes (Rob) That was all he taught me). I never saw him again. I don't even know his name -but I am forever grateful to him.

And while it is true that many ASD kids can have problems with eye contact, many can develop the skill (or learn to fake it) with training or with people they trust.

And there are some ASD kids who can and do make great eye contact with almost anyone. So don't let me hear anyone say "He can't be autistic because he makes eye contact". It is not a hard and fast rule.

oh and ...Hello?

 

I remind you again: If you've met one kid with Autism, you've met one kid with Autism.

 

Bonus myth: You Can Tell if a Kid Has Autism (or Not) Just by Looking

If you go back at the photographs in this post, -just the pictures, not the text (because the text will tell you). Can you tell just by looking, which kid or kids have Autism and which don't?

Be honest: You can't.That's why it is called a hidden disability.

So the next time you see a "spoiled" and screaming child while out-and-about, please remember -before you judge- that the child could have a hidden disability such as Autism.

Please Note: All text and images in this post are copyright (c) One Sick Mother, 2001-2010 and may not be distributed or re-used without express written permission from the author.

Scamming in The Name Of Religion

UPDATE:  The church did apparently return (some of?) the funds after the story broke (and started to go viral). It goes to show what can be accomplished through advocacy and word of ...computer.

But I'm not changing a word of my original piece, which follows (we may choose to forgive, but never forget):

 

Most of the scam artists I write about are selling "medical" products and they profit off peoples' pain and desperation.  The worst of these -by far, is Gordon's Herbal Research Center, which is supposedly based in New Zealand, but is actually based in Pakistan. 

Today I heard about a new scammer, who is really  
based in New Zealand this time (Napier). This guy is every bit as despicable as the snake oil vendors. His name is Bruce Collingwood. Bruce purports to be a pastor, and is based at this ...  um "church".  Here is Brucey with his wife, looking buff, wearing what looks like a sparkly-accented shirt and a fetching medallion.

You can find the "church's"  website here.  Note how they mention their new building, right on the home page.

So somewhere along the line Brucey came in contact with a gentleman by the name of Whetu Abraham, a man who suffered a serious accident several years ago, leaving him with brain damage and in a wheelchair. Brucey Baby and/or some of his congregation used to visit Mr Abraham in the nursing home where he lives, soliciting donations, leading Mr Abraham to believe that if he didn't give generously, he wouldn't go to Heaven.  It so happened that Mr. Abraham had a nest egg of about $20,000 dollars.

He doesn't have it any more.

Yes, Mr Arbaham's money somehow all made it to the "church" of Bruce Collingwood, "freely" given by the poor man under threat of Hell.

Now he can't even afford to have his teeth fixed, while the "church" got itself a new building.

 

...and -funnily enough- they don't come to  visit him anymore.

Except once this story broke, Brucey suddenly stopped by with a disclaimer for Mr Abraham to sign, and loomed angrily over the poor man's wheelchair until he had to be removed from the premises by staff (I can't make this shit up).

Brucey is a nice guy, huh?      

Here he is, sitting in what looks like a new leather comfy chair, wearing what looks like a silk shirt, while the man who probably helped PAY for those things can't even afford dental care.

...all in the name of "God". 

Really?  Is that how Jesus would behave?

Please let Brucey Baby know what you think of him. His contact details are below.

"The Oasis" 15 Owen Street

Napier 4110
New Zealand

Pastor: Bruce Collingwood
Phone: (06) 835 6480
Fax: (06) 835 6485
Mobile: 027 630 7738
Email: theoasis@xtra.co.nz

I was going to contact the head of the Elim Movement, to which this "church" belongs, and ask if Brucey's behaviour is in keeping with their philosophies.  And then I saw a picture of their brand new headquarters, opened in 2009.

 

...nevermind.  I think I probably know the answer.

I should give a shoutout to the nursing home staff, who seem to have really tried to look out for Mr Abraham's interests. Too often we hear bad things about nursing homes, but there are many good facilities out there and a very great many caring and dedicated staff.

They are much needed.

How Scammers Make Money From You

I have been asked how the scams I regularly out on this site can make money if they don't steal your credit card information (and to my knowledge, they don't) and if they refund your money.

Indeed, people have said to me if refund the money, they can't be a scam, right?

Wrong.

• They are scams because they all claim to cure illnesses but don't.
• They are scams because many contain harmful substances, which in some cases are actually contraindicated for the disease they claim to cure.
• They are scams because -in EVERY case- the same set of ingredients is touted as a "cure" for many different unrelated conditions and claims of  "research" and "results" listed on the sites are untrue.

 

Let's break down how some of them work:  I will take a few examples, starting with Oslo Health Solutions (read more about them here,  here, here  and here) and Berlin Homeo Products.

Both companies have almost 300 sites (that I know about). Each site claims to cure a different disease, ranging from Abdominal Adhesions to Wiskott Aldrich Syndrome (no diseases starting with X, Y or Z apparently).  Each company therefore works on volume and makes money in at least three ways:

1. Profit: I guarantee you the product they ship does not cost anywhere near the selling price. They probably resell cheap vitamins (I hope) ...or something (I hope not!)  and have at least a 900% markup on those pills.
2. Fraud: You send the money and they don't send  you any product. Some people won't apply for a refund or will be refused a refund.
3. Investment of takings in a high-interest account: They hold your money as long as possible before issuing a refund, then they keep the interest earned from YOUR money.

 

Oslo Health Solutions:  

I have Ehlers-Danlos Syndrome. Let's assume I order Danlotab  (don't worry, some of the pages are for Angiotab because they are scammers and cut-and-paste everything, but we'll call it all Danlotab, for the purposes of this exercise).  Let's say I order the product on April 15th using my tax refund money, because I am sick and can't afford to spend $80 out of my regular income. 

By May 15th, I haven't received anything, so I e-mail OHS in "Norway" (but it's really Pakistan). I have to e-mail them, because I can't call them. I assume there are several reasons for this, such as:

• No need for expensive, English-speaking phone operators
• It is much easier to fob someone off via e-mail than on the phone
• People may become suspicious when the "Norwegian" company has a Pakistani phone number (and accents)

This is my (imagined) e-mail exchange with Oslo Health Solutions (OHS): I start around mid-May, when a month has gone by without hearing/receiving anything.

Me: "Dear Oslo, I haven't received my Danlotab. You charged my card on April 16th, so I am assuming that product shipped, right?"

OHS: "Yes. it shipped (untrue). It may be hung up in Customs. Give it two more weeks"

June 1: I  e-mail again:

Me: "I still haven't received my Danlotab."

OHS: "Very sorry about that, OSM, we'll ship you out another"

June 14th, I get my credit card statement. I was charged for the additional pills.

Me: "You charged me for two sets of tablets, and I have received none."

OHS: Our mistake. We shouldn't have charged you for that second set. We will credit you that amount. Your new replacement pills are on the way"  The extra $80 is credited, but they still have the original $80.

July 1 -no sign of the second order (because it wasn't sent).

Me: "Dear OHS, I still have not received the second shipment.  I started all this in APRIL! Can you cancel my order please?"

OHS: "We did send it. We don't know why you didn't get it! Maybe someone in customs stopped it because *whine* this horrible blogger has been saying nasty and untrue thing about us. Tell you what: Why don't we send you out another one -free of charge?"

Me: "Oh OK"

August 1: I finally realize nothing is coming and cancel the order. The refund the remaining $80 to my account -after several prompts- around August 15th

 

In this scenario, which is fictitious but plausible (based on the feedback I have received from many, many "scamees"), I was out $80 for 4 months and out $160 for two weeks.  I received no product, but I got my money back eventually.

 

So was I really scammed if I got my money back? 

 

Definitely. 

How The Scams Work.

Did you know what is the base interest rate in Pakistan? No?  Well it is 13% at the moment. It recently went DOWN.

So we'll assume that -allowing for time differences- OHS deposited my $80 in their high-yield saving account on April 16th and returned it on August 15th. Plus they had an additional  $80 for two weeks. They had my money earning interest for them all this time. If we assume they were  earning the base rate of interest plus two points (15%), they made $0.99 per month from me  (actually more, as I just calculated the simple interest rate and the bank would use compounded rates), plus 49¢ for that "accidental" overcharge. That's a total of $4.44.  In return for this, they did nothing at all except answer a few e-mails.  For every day they stalled me, they earned money on my money at a rate of a dollar per month. And I might think it's OK because I got my money back.

A dollar per month probably doesn't sound like a lot to you. This is where volume comes in:

Oslo Health Solutions have 282 sites that I have identified, each one for a different disease. If we conservatively estimate that the company gets 10 orders per site on average, that's 282 x 10 which is 2,820 orders per month. For $79.00 EACH! that works out at $222,780.00 per month in sales -almost a quarter of a million dollars per month, $2.6 million USD per year. The interest return on that lot is a lot better than a buck a month.

Even if they refund ALL of these orders (which they won't);  if we allow for around 4 months to refund,  this means that they will make approximately $1,113.90 in pure profit on interest rates alone. Much more, in fact because the interest rates should be compounded. And that's not accounting for any "accidental" double billing.

Costs

OK, we know they do ship some product, so they do have some costs. If we assume they ship for around half the orders received, at a cost of $3 per unit and $5 S&H, which makes $8 cost per order shipped.  For half of the orders; that is $40 cost per site per month. Therefore 40 x 282 = $11,280.00 in direct outgoing costs per unit There are more costs too: personnel, website costs, advertising etc, but I am going to concentrate on direct costs relating to YOU.  

Refunds

Scammers rely on a very simple premise: A certain percentage of customers won't even request a refund. This is especially true of people who are sick, because they don't have the energy to fight; or who have an embarrassing condition. This is the true evil genius of these scams who target the sick. Some people are too sick (or have died) and can't demand a refund!  Free money for the scammers! Even if they have shipped their shitty product, they are only down a few bucks. Except they often don't ship anything, so they get all the money AND the 13% interest! Yay!

We will assume that 5 people out of 10 will not request or will be denied a refund. This is a conservative estimate. My guess is that it is more like 7 out of 10. So In our little scenario, refunds  are approximately $111,390.00 on the higher rate of refunds. If I assume a much lower refund rate of 3 returns for every 10 orders, that number goes down to $66,834.00. So OHS are incented to hold your money as long as possible and deny refunds as often as they can.

To recap, I reckon OHS could easily be clearing the following figures (more if their sales are higher)

 

Price per unit	$79.00
Number of sites	282
Units ordered per month*	2,820
Monthly income/deposits	$222,780.00
Interest earned 4/mos	$1,113.90
Estimated costs (50%)**	$11,280.00
Assume refunds @ 50%	$111.390.00
Net profit	$111,249.00

 

Wow! 100 grand profit per month, =$1.2 million profit per year. And like I said, these estimates -all of them- are very conservative. If I assume that all orders are refunded and they "only" make money off the interest; the number is $13 grand.

Berlin Homeo Products: 

If I apply the same principals to Berlin Homeo Products; those of the dodgy green stuff that is supposed to cure 285 different diseases, including Cushing's disease, Parkinson's disease and some forms of cancer and who sell these "cures" for $85 apiece (they have a cheaper, 30 day supply, but all the sites recommend at least 60 days, therefore I chose the higher number) the numbers look like this:

Price per unit	$85.00
Number of sites	285
Units ordered per month*	2,850
Monthly income/deposits	$242,250.00
Interest earned 4/mos	$12,112.00
Estimated costs (50%)**	$11,400.00
Assume refunds @ 50%	$121.125.00
Net profit	$101,075.38

 

But wait: As both these companies are covered by SPAH, These two companies could conceivably be linked. And if they are linked, to each other, they are linked to Botanical Sources. The other company usually found on the SPAH list of "independent evaluations".

Botanical Sources

This um... "brand" has 186 sites (that I know) and they also sell two sizes. I chose the smaller size here, because -although there was no timeframe specified for treatment, that size corresponded to the grace period for the refund.  Applying the same figures to them gives us a potential income for them of $1.45 million per annum.

...and when we add all three of those together, using the original assumptions, we get much more interesting figures:

753 websites

$76.33 average price for each product

$7 million per annum, of which 3.5 million is profit.

Someone in Pakistan is living very high off the hog indeed. And all of it made off the sick and desperate.

Please please don't be sucked in to these scams. Even if you do get your money back, an evil person will profit.

My Blog, My Rules

I leave the comments open on this blog; no moderation prior to posting and I do encourage people to comment honestly.  I often get comments that are blatant advertising (one good thing about Typepad: there is EXCELLENT spam filtering) or that are not blatant, but contain links back to sales sites. I delete these as soon as I find them. OSM has a very strict policy against advertising and endorsements (OK. I just endorsed TypePad, but it is not claiming to cure your Granuloma Annulaire). This policy has lost me some income opportunities, but I would rather maintain the integrity of the work and research than gain an extra few bucks per month. 

And I really can't endorse stuff I don't use anyway

In the past two months or so, I have noticed two interesting trends:

1. I started getting comments that reflected positively on the scammers. One or two people on a post might claim that a scam product had worked and their illness was cured.
2. Several of the scammers have disappeared from Google; -both from the advertising stream and the search engine (Let this be a lesson to scammers that they should pay their bills)

The "positive feedback" received has all been for those disappeared scammers!  Co-incidence?  I suspect not. Some of my posts have been up for almost a year; -not a single positive comment. And then all of a sudden, I start getting "well it worked for me/my aunt/my boyfriend/my cat" comments on the scam posts.  I am good at spotting patterns and this looks like a pattern -not a random happening- to me.

I am pretty sure these events ARE connected. I am not sure if the scammers are posing as legitimate people to post endorsements on this site, or if they were asking legitimate people to do so.  My radar was triggered and my guard went up. However, on the basis of fairness, I decided to give these comments the benefit of the doubt and to keep the conversation two-sided. But I also decided to keep an eye on the situation.

Then last Thursday, I received the first of 10 ranty and barely coherent (comments from a person who claimed that one of the products was a miracle cure and I was somehow (singlehandedly):

• Condemning this person to a life of pain (like I had somehow given them the disease)
• Policing the Internet (Superhuman powers: I has them, apparently)
• Influencing people to steal the product from their mail; that misguided individuals -presumably in the Postal Service thought they could "protect" the Angry Commenter by taking their Scamaton before it ever reached the house. (Ha! I would LOVE to believe my charisma is so strong that I can make people I have never even met commit a federal crime!)

The commenter also made several arguments that had NOT been raised in that post (and I saw no evidence that the person had viewed any of the OTHER posts on scams), which raised a big red flag with me, and then they degenerated into abuse towards me; threatening to slap me, and wishing a chronic illness on me so "I would know how it feels" (Too late! Times three!). Clearly they have never actually read this blog.

I initially left some of their initial posts up, thinking it was maybe OK to air the other side of the argument.  I do like to be fair and keep an open mind, and I have on occasion (OK once) gone after an organization, intending to flay them alive (figuratively, of course) and have discovered in my research that the are not half bad.

So I slept on it.

And slept on it some more.

And then today, when I was thinking about it. I realized that these comments are fucking endorsements! If I impose an anti-endorsement policy on myself, why should I break it for random commenters, who are probably in cahoots with the scammers?

So I went through and deleted all the positive comments about the scam products received in the past two months. Which was all of them. The scammers clearly didn't care about what was on here until they were in some kind of trouble with Google (I have been watching the search engine trends).

Now some people may say this is unfair of me, and I am not presenting a balanced viewpoint. If someone was helped by one of the products, why NOT let them post here? I have to say I agreed with that until today, but when Abusive McRantyPants started in on me. I thought fuckit.  This is MY site. I make the rules. And if someone wants to (respectfully) contradict me,they can do it here. If someone wants to lavish praise on a scam company or scam product, they can.

But not here.

Find somewhere else to do it, because this site does not support endorsements.

Or abuse.

If you don't like that, you can leave.

Slow Progress, Some Good News

Some people have been calling/emailing me about my health, so I guess I owe some updates on that front.

So #30 (who specializes in ..um  ...I forget the name but it has to do with metabolic processes) and I have been speaking for a few weeks. It turns out that he didn't BELIEVE me when I said that my seizures happened when my blood sugar is "high" (for me that means like 104 =bang slap happy normal for most people), and when my sugar is low (mid-40s to 70s) I feel a lot better. I guess repetition worked because he finally started to think about what processes in the brain might be causing this reaction in me. He said that the problem will be testing for these theories, and pointed out that whatever it is, it is likely very rare. I pointed out that if whatever-it-is ISN'T rare, then one of the 29 other doctors -none of which  are stupid, would have figured it out already.  I have wanted to document and chart this blood sugar thing a little better, but I can't find my feckin glaucometer anywhere. I think I put it in a 'safe place', which means my heirs will probably find it after I'm gone and they are cleaning out me house. Or it will immediately show up right after I buy a new one.

So #30  talked to a few colleagues (bless him)  and he wants to do an MRI specstroscopy of me brain. Fine.  I call the MRI peeps. I need pre-approval. OK. I call the insurance peeps. They need to get the request from the doctor, not me or the MRI people. OK I call #30's office and ask about it.

....and hear crickets.

I call back the next week. More crickets (and it's only May!).

Eventually, I call and manage to get the doctor himself. THEN shit starts to happen.  I don't understand why in a top hospital in NYC, a highly respected and highly sought specialist has to do his own administration. Talk about a waste of resources!

So after at least two weeks, we are now close to getting the pre-approval for the MRI. Then I will have to schedule it and actually go have it done. School is out in a few weeks so this is cutting it fine. I asked #30 if I should be in a seizurey state for the test. And he said something like "I didnt' know you had such control over it. Well, yes. I can get them to start no problem. I usually just have to eat a large meal or in take a big chunk of sugar, fast. It's getting them to stop or -better yet-  not occur that's the trick.

I am curious to see what shakes out of this test, if we can ever make it happen.

Good News

I saw Matinee Idol Doctor the other week to check on the early Glaucoma he had said was there back in 2006. I am supposed to go back every six months and it had been over two years. I got my wrist slapped for that. However, the good news is that my eyes have not changed at all since then and I can go to yearly visits. Hurray.

It was funny, because this guy seems to have a rather spoiled clientele and he seemed to think I would be put-out leaving empty-handed; no prescription, no Dire Warnings (he likes his Dire Warnings, that guy), no additional tests. In contrast, I  was delighted!  I fairly bounced out of there, unencumbered by prescriptions, Dire Warnings or additional tests. It is a rare doctor's appointment where I leave without at least ONE of those, or else a shrug and an "I-don't know-why-don't-you-contact-X-obscure-specialist?".

So yeah. good news.

...and then George, my favorite cat got sick...

More about that next time.

Why, Indeed?

Recently, I was talking to someone who has read a lot of this blog, particularly  the pieces I wrote on herbal remedy scams. This person knew that these pieces (most of which are listed in the top left column of this blog, if you are curious) involved hundreds of hours of research and documentation and they asked me the simple question:

Why?

Why put so much effort into this?  It wasn't my job, I didn't get paid and -apart from the people who commented or e-mailed to thank me (and some to challenge me)- I got no real recognition for this effort.

Funny, but "why" It isn't an easy question to answer.  I could list plenty of things I didn't want out of this work: I didn't want payment. I didn't want thanks (although it is nice to receive), I didn't want recognition. I guess I wanted...

...Justice. 

That's probably the best single word for it, but it still doesn't really explain it all, because justice for whom? And how does putting this stuff on the Internet achieve that aim?

Hmmm.  I was at a rare loss for words.

I have been pondering these meaty issues a lot; -questioning my own motivations and the workings of my own mind, which are not always very obvious to me (and I pity my friends). After a day or two,  this poem I learned in high school came meandering into my head. The first line did, anyway:

"Since the wise men have not spoken, I speak that am only a fool"

That's sort of it. I had to speak because nobody else could or would.  I dug up the rest of the poem, to see if it fit, too. it is below. I think it is kinda-sorta-not-really suitable to my situation. At the time of writing, Pearse was in prison facing execution for his role as a leader of the 1916 Easter Rising in Ireland, when the Irish equivalent of the Declaration of Independence was um... declared. Actually It was proclaimed.  By Pádraig Pearse himself, if you don't mind. Not sure the difference, exactly but there you go. If he was still around, he could probably tell me. And correct my punctuation.

In this poem, Pearse is defending a lifetime spent as a campaigner and a rebel and his decision to lead a rising against the British. And here I am trying to justify a bit of research. Our situations aren't very comparable, really. Yet I can definitely identify with Pearse's idealism and willingness to speak out against perceived wrong.

The Fool

By Pádraig Pearse

Since the wise men have not spoken, I speak that am only a fool;
A fool that hath loved his folly,
Yea, more than the wise men their books or their counting houses or their quiet homes,
Or their fame in men's mouths;
A fool that in all his days hath done never a prudent thing,
Never hath counted the cost, nor recked if another reaped
The fruit of his mighty sowing, content to scatter the seed;
A fool that is unrepentant, and that soon at the end of all
Shall laugh in his lonely heart as the ripe ears fall to the reaping-hooks
And the poor are filled that were empty,
Tho' he go hungry.
I have squandered the splendid years that the Lord God gave to my youth
In attempting impossible things, deeming them alone worth the toil.

Was it folly or grace? Not men shall judge me, but God.
I have squandered the splendid years:
Lord, if I had the years I would squander them over again,
Aye, fling them from me !
For this I have heard in my heart, that a man shall scatter, not hoard,
Shall do the deed of to-day, nor take thought of to-morrow's teen,
Shall not bargain or huxter with God ; or was it a jest of Christ's
And is this my sin before men, to have taken Him at His word?
The lawyers have sat in council, the men with the keen, long faces,
And said, `This man is a fool,' and others have said, `He blasphemeth;'
And the wise have pitied the fool that hath striven to give a life
In the world of time and space among the bulks of actual things,
To a dream that was dreamed in the heart, and that only the heart could hold.

O wise men, riddle me this: what if the dream come true?
What if the dream come true? and if millions unborn shall dwell
In the house that I shaped in my heart, the noble house of my thought?
Lord, I have staked my soul, I have staked the lives of my kin
On the truth of Thy dreadful word. Do not remember my failures,
But remember this my faith
And so I speak.
Yea, ere my hot youth pass, I speak to my people and say:
Ye shall be foolish as I; ye shall scatter, not save;
Ye shall venture your all, lest ye lose what is more than all;
Ye shall call for a miracle, taking Christ at His word.
And for this I will answer, O people, answer here and hereafter,
O people that I have loved, shall we not answer together?

Of Spammers and Vitamins

When you write a medical blog and talk about herbal remedies and ingredients and alternative medicine -even if it is usually to bash them, as I do (it's absolutely NO fun to write about the good shit that works -not that I have really found any, anyway), you start to get all sorts of interesting comments and e-mails regarding herbal remedies and cures.

It make my job a lot easier when the scammers start to come to me directly. It saves me going out to look for them.  I have to laugh though, thinking that if they only took a little time to research me, they wouldn't walk both feet into the lion's bitch's den.

I had reason to open my Spam folder yesterday, and there were tons of e-mails promising me cheap Viagra, illegal Adderal and all manner of prescription drugs from Canada. I have to laugh at all these mails, which are so obviously scams they are not even worth mentioning here usually. 

The other big spammer I get is for Russian porn. For some reason the Russian pornographers seem to think there is a healthy market here on this site for their wares. I have no idea why this might be. Rightly or wrongly, this is what I think of when I think of Russian women:

 

Here is my sterotypical image of Russian men:

 

So the thought of Russian porn is not a happy one for me ('specially when looking at the guy second from the left!). OK so I know these probably aren't shining examples of current Russian pornstars, but I wouldn't be willing to take that chance. So Nothankyouverymuch, Russian pornographers. You should program your spambots to target somewhere else. It would save us both some time.

In addition to fake prescription drugs and Russian porn, I get the traders in "supplements" and other "natural remedies", with lists of mad stuff; single ingredients- that they will happily sell to me from overseas.  I sometimes look at these lists, idly wondering how much might be poison. Some of the entries really make me wonder what kind of fools they usually deal with. And I am by no means an expert!

A list from one company had a lot of vitamin-and-nutrient-sounding stuff thereon. Fifteen pages of them, including some vitamins I hadn't been aware existed. Primarily, because they seem to have made them up! Yes, folks: Makey-up vitamins seem to be the very latest in preventative healthcare. These are fun for me to explore, especially when I combine them with slang "vitamin" definitions from the Urban Dictionary...

We have Vitamin M, which the vendor claimed was Folic Acid. However, "Vitamin M" is also slang for money!  So here's me thinking, I could order this and get a bunch of capsules full of those shredded manky old dollar bills you can get from the US Mint.  Yum! Or if it is really Folic Acid, I wonder what comes in their B9 capsules?  And I'm sure the Urban dictionary could come up with a good alternative for Vitamin B9. It's not there yet, but suggestions are always welcome.

Vitamin P in the urban dictionary is ...well, you can go look it up (While OSM is not exactly PG13, there are some terms of which I am not fond). According to the jokers who e-mail me, their "Vitamin P" contains Rutin, a type of flavinoid. I could easily see SNL doing a pretty good sketch on confusing those two terms up.  Not enough that I would actually buy any, though.

My erstwhile providers had two different version of Vitamin U: One was Methylmethionine sulfonium chloride, which I have seen referred to as "Vitamin U" elsewhere. But until someone with a medical degree tells me it is good for me, I am disinclined to try it. I am even less inclined to try their other Vitamin U: Chlorine.  Isn't that toxic?  Didn't chlorine gas kill a bunch of soldiers in World War...Something?  And isn't it a tad irresponsible to have two things with the same name,  one potentially good for you, and the other potentially harmful?  Yeah I thought so. because that won't cause any confusion at all...

And to add insult to injury, there is no good Urban Dictionary definition for Vitamin U. I needs to find me one, as that may become the only valid definition for the term.

These guys also have two versions of vitamin H. The first they claim is D-Biotin (isn't that really B7?). The second is blank, which make me very curious to know what might really be in there?  The Urban Dictionary definition of "Vitamin H" is Heroin, which made me giggle at the thought of what might happen if Grandma took the wrong vitamin...

I was disappointed to find the list of vitamins that my would-be suppliers provided was incomplete when compared to the Urban Dictionary, because I really want to try some Vitamin Q, which according to that revered tome is defined thus:

A vitamin so elusive it's found in the subtle recesses of the alphabet... Also the secret ingredient used to make Gatorade, clones and Chuck Norris.

 

I really need me some of THAT! (where can I get it, I wonder?)

 

What Is a "Cure", Anyway?

People e-mail me through this blog all the time -for many reasons- and I am very glad that they take the trouble.  I try to reply to everyone who e-mails, even moreso than those who comment. Every now and again, I'll get into an e-mail conversation with someone about scams or healthcare or something, and they will make me think.  Yesterday it was a comment from somebody who was pro natural remedies and anti- Big Pharma (and pissed with me for exposing so many 'natural remedies" as scams), who made a comment along the lines of  (paraphrasing) "the medical world wants to keep us sick (so they can make money). No disease has been cured since polio".

And this latter comment got me thinking: Polio?  Really?  I didn't even think that was cured.

And I started to wonder seriously:  Which diseases have been cured?  Actually CURED?  The answer was quick and surprising:

None.

Not one single disease on the planet is listed as cured. Those fucking doctors and researchers, epidemiologists and scientists have clearly been sitting on their arses, twiddling their thumbs for centuries.

So old diseases, the ones we don't hear much about anymore. What are they if not cured? Let's have a look at them: Scurvy, Pellagra, Beriberi, Rickets and Pernicious Anemia are virtually unknown in the developed world these days. But they haven't been cured. They have been prevented by a knowledge of nutrients and balanced diet (and maybe fortified cereals).  

Diphtheria,  Measles, Mumps, Tetanus, Whooping cough, TB and even Polio are all under control in most of the developed world, too. Again, None of these diseases have been cured (no, dear e-mailer, Polio is not cured), but they have been  prevented through widespread vaccinations and inocculations.  And in some cases, helped by proper knowledge of hygiene. (handwashing is probably the #1 preventative in the developed world; even more than vaccines).

Cholera is much diminished as a cause of death, too, thanks to modern water treatment methods. And it is treatable now that rehydration techniques are understood and have been taught to many at risk. But it is not cured. 

Bubonic plague; the Black death, was a huge global problem for centuries and is now mostly gone, thanks to pesticides and antibiotics.  But only mostly. There was a famous case of a couple with Bubonic plague in New York City in 2002, although they contracted it in (I believe) Arizona, where infected fleas apparently still abound. After hearing that story, I made a mental note not to go hiking in Arizona. Ever. (There is no vaccine for the plague, although it is a bacterial infection and treatable if caught early.)

Fewer people die of snake and spider bites these days, thanks to anti-venom.  But is that a cure? Snakes are not considered a disease.  Hmmmm.

Far fewer people die of things like appendicitis and abcessed teeth these days, thanks to modern surgical techniques. But neither are these considered a cure. 

ADHD and several mental illnesses can be helped by drug therapy. But if you stop the drugs, the symptoms come back. Therefore: treatment. not cure.

Only one disease is said to be eradicated (is "eradicated" the same as "cured"?  Nope.): 

Smallpox. 

That was the first disease for which a proper vaccine was developed using a relatively harmless pathogen (methods involving the actual smallpox virus itself go more than a thousand of years); invented in 1796, and gaining recognition in the 1800s, when they started vaccinating people on a wider scale. Even then, it wasn't until 1980 that Smallpox was declared eradicated.  Almost 200 years later!  I guess it takes a long time to eradicate a global disease. Mind you, the whole process of safe vaccine development and the idea of widespread preventative healthcare had to be invented too (and not without a lot of mistakes and setbacks), so it's understandable that the first takes the longest. But it is also kind of cool that it worked so well. 

One area in which many strides have been made is in cancer treatment: Cancers can be shrunk, removed and beaten into remission by several different powerful drugs and treatments. Many forms of leukemia and lymphoma are 100% treatable. Inatinib was thought to 'cure" Chronic Myeloid Leukemia, until people realized that if they stopped taking it, the cancer returned. Not a cure then; a treatment. Many cancer patients go into full remission and are declared well or "cancer-free".   But not "cured".

Why is that, I wonder?  what does "cure" actually mean?  I decided to look at this as pertains to me. I have had numerous colds. I don't have them now.  Were they cured?  No.  They just ran their course, treated with tissues and Theraflu. And antibodies.  Because our own bodies recognize viruses as intruders and build antibodies to attack them. Those same antibodies stop me from getting that same cold virus ever again. Unfortunately, unlike the smallpox virus, which has only a few variations, there are about seventy gajillion different cold virus variations.  So immunity does me only little good.  And is not a cure.

If I seriously look at what "cure" means, -At least to me, "cure" If means that someone who was sick would get better and be back to the 100% health, with no fear of the illness ever coming back. Preferably with no side-effects, either; which rules out most drug therapies as cures.

"Cure" doesn't mean prevention though. So if I was to offer a cure for cancer or the common cold, it would mean that people would need to have Cancer or the common cold first, and then I would cure it. And to me, that's not the ideal scenario.  I'd much rather they never get it in the first place. You know, like we have been doing with Smallpox and the like?  Ask anyone who has suddenly been saddled with Tetanus or an unlooked-for pregnancy and they will tell you that prevention is far better than cure.

Therefore, As far as I know the only real cures I have heard about are in the New Testament.  And I'm pretty sure none of those were followed up scientifically.

But here come the naysayers, bitching and moaning that nothing has been "cured" yet and therefore Big Pharma and the medical community are all out to get us.

Pul-eese!  I ask anyone making such claims to me, to please do your research first. And to remember the the expression "an ounce of prevention beats a pound of cure". So  yeah, The medical community hasn't been curing Polio. It has been focusing on what's important: Prevention.

...Not that the medical community is perfect, mind. There are still many diseases out there that don't have adequate prevention or treatments. Muscular Dystrophy is one that comes to mind. Research is very well funded, thanks to Jerry Lewis and his dodgy-but-effective technique, but there are still no big breakthroughs in treating or preventing the disease. They can help some symptoms; they help people get wheelchairs and needed equipment. They do fund a lot of research, but it has borne little if any fruit. There is no way to halt or reverse the progression of the disease itself.  And no way to prevent it. It can be argued that these things take time, and they do, but still, one can't help but wonder...

...about a lot of things, really.  But not about a cure for Polio.

"Our Race"

It's a long complicated story, but Joe has been having an ongoing misunderstanding with two typical girls at school. These girls were assigned to 'buddy" one of Joe's friends, we'll call him Danny, a special needs kid who is lower-functioning than Joe. The problem is simple: Joe always took it upon himself to look after Danny, who he has known since the first grade. Now here they are in middle school and the status quo has changed. So it's a little bit of a turf war, a little bit of hurt confusion ("why didn't  Mrs P ask me to look out for Danny? I've been doing it for years) and a lot of pre-teen bickering.

Joe was talking about this to me recently and he came out with the statement "I think I'll just stick with people from my race from now on".  OK, that raised a huge red flag with me: Race? HELLO?   So I asked Joe 

"what do you mean, 'my race'?   

"Oh sorry Mom, I mean 'OUR race'"  (Nope.  The red flag didn't go anywhere with that!  In fact it climbed a little higher.) I tied again:

"You mean Irish people?"

No. I mean people like us. People who are different.

"Ooooohhhh" (phew)

...And we started to talk about differences and acceptance.  It's funny how Joe is almost a reverse snob. He will merrily accept kids with all sorts of difference and special needs, but he has -on more than one occasion- made some exclusionary comments about "normies" -which makes me laugh a little because the word I use too, and I'm pretty sure I never used it around him (maybe he is a reader?).

I am working on this with him, and I expect it will take some time for Mr Black and White to start to see any glimmer of grey.  But he will.

I hope he does.  After all, not ALL normies are awful!

De-Cluttering by Numbers

You know how sometimes, I think to add two elements of my life together in an unexpected way and I realize that maybe that was a good idea (and why didn't I do it years ago?) Well, recently I added my accountant and the show Hoarders together in my head, and it returned a result which pleased me.

Not that my accountant is a hoarder, you understand. He is a very nice man.

I'm not sure why I like "Hoarders" so much. Maybe it is because I am a terrible housekeeper and I feel better looking at the state of the hoarder's houses. (I can tell myself "at least I'm not that bad!"). Or maybe I view the show as a kind of warning to myself (and Himself) that there are definitely hoardy tendencies at work in this household, and if it isn't nipped in the bud, we may end up on that show ourselves in 20 years' time.

Or maybe I'm a sucker for a good makeover.

The other part of the equation came from the accountant. Himself often works from home, so the accountant was calculating what percentage of our house was taken up by this and what value that percentage has.

...and that got me thinking a rather obvious thought.

How much does it cost me to keep all the junk I keep?

Of course it's not all junk, but having been raised by parents who were born during the Depression and grew up in Europe during wartime rationing, I do have a tendency to hang on to more Stuff  than I should for three primary reasons 

1. In case I might need it someday. How may times have I gotten rid of something, only to find myself needing it three days later?
2. It's too good to just throw out/ It might be worth something.
3. It has sentimental value.

...which may be all well and good, but the accountant planted the seed that I am paying ...something for every square inch of my house. I wondered if I calculated the actual value of that space against some of the objects that occupy it, would this inspire me to throw more stuff out?

So I set me up a wee spreadsheet with some rough-but well-in-the-ballpark figures.  I factored mortgage, property taxes, utilities (except phone cable and Internet, because the Stuff doesn't use it, but it goes get heated, cooled and maybe watered) and maintenance. I calculated the square footage of the house.  Then I tweaked the square footage a bit.  I decided closets, dressers and other such areas were to be reckoned at half value, because they are there expressly for storage and we don't live in them.  I had originally decided they were free, but they are not. Junk kept in a closet will prevent non-junk from being stored there and tops of dressers are major clutter magnets for me. So half-price seemed a fair compromise.

When I had tweaked and jiggled, I came up with a number: $1.12 per square foot, $0.09 per square inch. Per month. So that bottle of expired eyedrops in the medicine cabinet is costing me roughly 4.5¢ per month to house, heat and cool; with absolutely no return value. Because it is EXPIRED.  And my taxes pay for some big burly men to come and haul shit away a few times per week. I really ought to be using that service more and I might have more house to actually live in.

Those eye drops opened my eyes in a way the manufacturer never anticipated.

Unfortunately, this revelation coincided with a bit of a symptom escalation, so I haven't been able to do much about it. Yet. I have set a bunch of books and videos aside for donation. however, I have been looking at objects in the house in a whole new light; eyeing them more suspiciously, wondering if they are worth the cost of their keep and the tiny percentage of my living space they occupy?

I figured the Elmo videos have definitely outlasted their value.  But my yarn: well, that's going nowhere.