ALS Part 4

My perspective on broader healing issues as they relate to ALS.    <THIS SECTION MOSTLY NOT YET WRITTEN YET>    <for instance prayer, religious practice, accepting the possibility of death, preparing for your impending demise which may turn out to have nothing to do with ALS, making oneself available for healing, taking personal responsibility for your case, learning when to ignore doctors and when to heed them, keeping an eye out for resources, paying attention to what’s happening to your body, taking care of your overall health,  how to do medical research,  understanding how the “system” works against the patient and how to screw it up to work for you, etc. >

PRAYER     Part 1:  Why it belongs as part of this document

In the USA most people consider prayer to be an entirely normal and expected response to sickness, and a part of the healing process, whether prayer for oneself, or for others.   That’s how it really is, and I’m not going to pretend it ain’t so. Therefore  information about prayer belongs in this document. 

Unfortunately, the tragedy of Western history for the last 1600 years is one of religious violence and arrogance encouraged by secular power maintained through class conflict. We’ve learned the hard way that talking about religion can get you harassed or even killed.  In this prevailing atmosphere of fear and denial, religious institutions have rarely felt any need to provide sound religious education. 

Therefore in medical literature, prayer is rarely mentioned.  When it is, it’s usually those silly “controlled prayer experiments”, which keep the cloud of superstition hanging over the whole subject.  

Through the circumstances of fate, it so happens that in matters that most people think of as magical or supernatural, I am well informed, and competent to teach.  So, here’s the sermon on prayer you never heard anywhere else--  not in church, not in a book, and not in the medical literature.

We all live in the immediate presence of the Divine, like a fish does in water, and access is as direct as we are willing to open ourselves to it.  Prayer is a technique for unblocking that access.  Therefore this “sermon” is not about “believing” anything.  It’s about knowing through your own God-given reason and insight how prayer works, so you can use those gifts of reason and insight to lead you to more effective prayer practice.

PRAYER     Part 2:  Theology

In Western theology, there are two approaches:  dogma, which is intellectual hazing material produced by church politicians intended to make you knuckle under; and knowing firsthand, which is of the world of reality that dogma doesn’t want to be a part of.   The religion of “knuckling under” has a long and tragic history of abuse of human beings, serviceable for politics but not for healing.  For healing, the theology of “knowing firsthand”, of personal connection to the Divine, is what works.

The Western world’s best known prophet, Jesus the scandalous Nazorean, taught direct connection.  He called his formula “The good news of the reign of Heaven”, a reign which he invited all to participate in, a reign in which healing is high on the agenda.  A reign of reality in which dogma is powerless and in which obeying rules confers no righteousness.  The dogma of most churches says you can go “to Heaven” after you die--  if you knuckled under properly.  I, like Jesus, say the reign of Heaven is for the living--  of what use is healing to the dead?  

In most churches, knowing firsthand will bring you into conflict with the authorities.  I regret that the question of how to deal with this dilemma is beyond the scope of this sermon. 

I strive here to show you how to know for yourself, firsthand, the nature of prayer, without having to “believe” anyone, not even me. 

1.  UNIVERSALITY    Prayer in some form exists in nearly all religions and cultures, because it works (though not necessarily how people think it’s supposed to work).  God is universal, in all places and at all times.  By contrast, all religions and creeds and denominations are temporary human artifacts of historical cultural evolution undergoing constant revision.   The bad news is that your religion (or mine) is not the exclusive ticket to the Divine:  God doesn’t pander to human ego.  The good news is that you and I are surrounded by people who have tickets to divinity.  Help them ride that ticket and they’ll pull you along with them.

Among the people praying for me are many Roman Catholics, several practitioners of the broader Catholic tradition,  Protestants of various denominations, a big handful of neo-Pagans, a big handful of agnostics and atheists, several Buddhists, several shamans, an associate of the Jesus Seminar, at least one Jew, at least one Muslim, and at least one Hindu.  Two professional panhandlers, a multimillionaire businessman, lesbians, “gays”, lots of thoroughly heterosexual folk of both sexes, ordained priests, retirees, children, and even doctors.   Possibly even my life insurance agent, y’never know.   Not bad for a social recluse like myself.  You could probably do a lot better.

2.  SHANNON’S INFORMATION THEOREM  [A well-known principle of communications system engineering] ….. God, like you, is more likely to pay attention to a humble request from an unexpected source:  therefore the prayer of the atheist and of the sinner is more likely to lead to results than the prayer of the religious or righteous person.  (Atheists may not call it “prayer”, and may not say “Dear God”, but when they make the request those technicalities don’t matter.  Put yourself in God’s shoes and all of this will become completely obvious.)

3.  THE GREAT COMMANDMENT   [also known as “the Golden Rule”]     When you pray, make it short and sincere and straight to the point.  No begging and whining.  That’s how you like people to ask you for things.  Treat God as you would like to be treated: it’s good for the relationship. See it from God’s point of view.

4.  THE PARABLE OF THE SOWER  [scatter the seed, some will land on fertile soil]    If you’ve been diagnosed with a deadly disease like ALS, do not keep it a secret, tell people.  Give them the opportunity to pray for you.  Tell even people who don’t like you:  the situation may bring out the best in them, in which case, what a heckuva powerful prayer!

5.  THE GOSPEL OF ECONOMIC REALITY    God’s got lots of stuff that’s got to get done that may not coincide with what we personally want for ourselves.  And, although God’s resources may be infinite, the resources God is willing to make available to you or I as individual egos are rather limited.  What’s more, our ability to use gifts is a much narrower bottleneck than God’s generosity.  So---  in prayer, we make our request, confident that if it’s meant to be it will come to pass.  And if it doesn’t come to pass, it wasn’t meant to happen.  Either way, we’re grateful.

6.  GRATITUDE, THE PRACTICE THAT MAKES POWER AVAILABLE    Because we accept the outcome of prayer with gratitude either way, nobody can beat us up with accusations like “you didn’t have enough faith” or “you didn’t pray hard enough” or any of that stuff we’ve all heard a thousand times and suspected correctly it was coming from a self-righteous ignoramus.   …..Put yourself in God’s shoes.  Do you like to receive requests from someone who will hate you or hate themselves if you can’t give them what they want?  Of course not.  See this from God’s point of view.  Gratitude is the spiritual discipline which when cultivated, knocks down the walls of ego-judgment that separate us from living life miraculously.

7.  THE THREE TYPES OF POWER UNLEASHED BY PRAYER     The power that God makes available when we remove barriers to the universe’s generosity, comes in several forms.  First, there is the psychological and social power that is made open and available, which can be reasoned about scientifically.  Second, there is the power of synchronicity (or “serendipity”), things beyond human control happening at just the right time. Most of this can be reasoned about scientifically, but some of what I and others have experienced seems beyond our power to reason about it.  Third is the bringing into play of nonhuman intelligence, which most people think of as being “supernatural”.  ..Unexplained synchronicity and the activity of nonhuman intelligence are not necessarily easy to distinguish one from the other and may in fact be different labels for the same thing.  I suppose that a hundred years from now intellectually honest theologians (if there be any) will have accumulated sufficient information to make this distinction.

7.  THE MIRACLE OF THE  ORDINARY WHICH WE’RE USUALLY BLIND TO     If you doubt the occurrence of synchronicity and/or nonhuman intelligence to which I refer, that’s okay, I’m not trying to convince anyone about that stuff if they haven’t experienced it firsthand.  The vast majority of “answered prayer” comes from the psychological and social power unleashed when we express our wants in a way which is agreement with how Reality works.  People usually avoid asking difficult questions about cause and effect, and therefore often claim as “supernatural” events which are in fact within the reach of human understanding.

8.  YOU NEVER KNOW WHO MIGHT CRASH THE PARTY     If you make yourself available to the creative powers which are in the realm of the scientifically knowable, don’t be terribly surprised if power from outside that realm joins the party, because it’s all connected.  What’s scientifically knowable or not is an artificial and constantly changing boundary we construct.  Reality has no obligation to respect our artificial barriers.

9.  DON’T PLAY WITH FIRE   Be careful what you pray for:  if you pray competently you may well receive it.

10.  WHY GOD DOESN’T PLACE IMPORTANCE ON “BELIEF” (and how you can figure this out for yourself firsthand)    In the foregoing, when I say “God”, don’t get stuck on what kind of God you should “believe in” or even whether you should “believe”.  Let Pat Robertson, the Pope, and the President of the Chinese Communist Party duke that one out on their turf.  You’re too busy trying to live your life to be bothered with such trivia.   ……If your favorite niece asks you for $100 to go to summer camp, do you ask her first, “Just a minute here, kid, do you believe that I walk on water, ‘cause if not, forget the hundred bucks”?    Of course you don’t say that.  What she may or may not believe about your water-walking skills doesn’t have anything to do with it.  It’s about your love for her and whether her parents approve and whether you have $100 you can spare for that purpose. And she knows that if you say “sorry, no can do”, it’s not because you don’t love her.  

That is “the merciful justice of the LORD” of which the Judeo-Christian tradition speaks.  I suppose that the same thing is explained with different words in other religious traditions.

11.  SUMMARY:   LIVING THE MIRACULOUS    Prayer is about giving and receiving and about removing barriers to generosity and gratitude.  Everyday life teaches how it works when it’s working well, and what screws it up.  It’s as scientific as you care to make it.  The more divinely we do it, the more we make ourselves accessible to the goodness that lies beyond our personal expectations and comprehension.  The realm we once thought was miraculous but locked away in a distant “heaven” or such, becomes a natural part of our life.

Prayer      Part 3:  Psychology & Sociology

When I realized I had ALS, I didn’t keep it a secret, I told people.  Soon there were people praying for me from many religious traditions-- yep, even atheists (although they don’t like to use the word “prayer” to describe it).  I attribute a lot of the good that has transpired in my life since I told people what was happening, to their prayers. 

I’m not being superstitious.  This is a scientific discipline.

1.  Well thought out prayer produces clarity and focused intent. That focusing of intent helps to maintain awareness and helps to guide action.

2.  When someone prays for me, and they tell me, it’s encouraging.  That prayer might come in the form of a prayer request during the intentions of the Mass, or it might be my co-workers cheering when I dance my ass off with the crutches held over my head at the company Christmas party.  Both those things are prayer. 

3.  When someone prays for me, and it’s unexpected, that is even more encouraging.  It broadens my horizon of expectation, and it confirms that I am living in the world where rules are human constructs meant to be broken by the practice of creative power.  That unexpected path into the world of giving and receiving creates new synapses of social connection that enable information and energy to become available.

4.  When someone prays for me, and I never hear a thing about it, that focusing of their mental and spiritual energy creates the possibility of something concrete happening on my behalf which originated with them, something that never would have happened if they’d been watching “Desperate Housewives” on television instead.  [Yeah, I’ve watched it myself, whaddaya think, I’m a saint?]

5.  When I pray on someone else’s behalf, I’m paying attention to my own need to give.  As I act on that need, I’m creating reciprocity.  Reciprocity is the basis of social prosperity and social justice, which in the end are pretty much the same thing.

6.  When I pray on my own behalf, I’m forced to think through my own situation.  Having thought through my own situation, I’m better able to communicate it with others.

UPDATE 26 March 06:  I have recently run across two articles on prayer in healing:  “Faith Healing” Prevention Magazine, Dec 2005, and “Researchers study prayer’s influence on healing” Washington Post, 24 March 06.  The Prevention article is fairly good.  Washington Post article is basically a sound-bite reporting job written without any insight into the subject matter.

HERBAL & NUTRITIONAL THERAPY:  patients vs. doctors

According to an article in the 4 Feb 06 El Paso Times, 68% of households in El Paso and 65% in Juarez use herbal products.  Other studies put the US average at 13-19%.  [The fact that El Paso is about 80% ethnic Hispanic obviously has some bearing on these numbers.]  Of those who use herbal products, 33% of El Paso patients told their doctors, whereas only 14% in Juarez did.  [I suppose the numbers regarding nutritional supplements would exhibit a similar pattern.]

We all know why patients don’t tell their doctors they’re using herbal and nutritional therapies, don’t we?  Since we all already know, there’s no need for me to explain it.

Some doctors are willing to have the conversation:  drop hints and see how they respond. 

If you’re a doctor reading this, you may be confronted with the flip side of this seeming impasse --  the patient who expects one magic pill to make the problem go away.  When you tell a diabetic or heart disease patient, “To save your life, you have to change how you live it”, I’m guessing only one in five is willing to actually change the way they live.    …….The Rx that’s working for me is not easy, and there’s no guarantee it would work for someone else.  If you were to recommend a treatment plan something like mine, most patients would probably not adhere to it with sufficient discipline to get much out of it, even with their life at stake.  If you invite the patient to talk about herbal and nutritional and physical therapies and find that the patient responds with “I thought you’d never ask!”, that’s a patient who will probably benefit from the considerable effort needed to develop a therapy plan. Good luck figuring out how to get insurance to cover most of it.

UNDERSTANDING NONPROFIT FOUNDATIONS

If you’re old enough to get ALS, you’re probably old enough to remember the “March of Dimes” -- a nonprofit foundation dedicated to the task of eliminating polio, which was then a very common and costly epidemic disease.  President Roosevelt had been crippled by polio.  Public awareness was high.  There was a “March of Dimes” contributions canister on nearly every checkout counter in America.  And they perfected the advertising concept we now call “the poster child”.

The “March of Dimes” funded patient support measures (purchase of iron lungs, etc.) but also funded the most promising research for an effective cure.  That research led first to the Salk, and then to the Sabin, vaccines.  And thanks to a massive immunization campaign, within a decade polio was virtually eliminated from the USA. 

Then tragedy struck.  Their mission was accomplished, and people stopped putting dimes in the canisters.  “March of Dimes” regrouped around an issue for which there was sure to be no quick fix -- birth defects.  It’s small potatoes compared to polio, but at least it won’t go away.

The other medical nonprofits learned well from the “March of Dimes” miscalculation.  The first order of business of an administrative apparatus it to keep the administrative apparatus employed.   That’s why the huge amounts spent by nonprofits on researching cures for cancer and heart disease seem to be grasping for such an elusive goal, and why the MDA’s website reveals so little interest in inexpensive therapies that may actually work.

BRINGING IT OVER THE BRIDGE

I live within “walking distance” (thanks to effective ALS therapy) of Mexican pharmacies. (But at 5 miles I’ve been too lazy to actually walk it.) There’s a lot of confusion about what a USA resident can bring back from Mexico.  Putting together the pieces of things I’ve heard, experienced, and reasoned about, together with a story in the 15 March 06 edition of the El Paso Times, here’s what I think is a reasonable approximation to reality.

1. Coming back into the USA, if they bother to check you at all, they’ll ask to declare anything you’re bringing back.  Declare any medications prescription or otherwise.  Declaring something you aren’t allowed to bring in, and having it confiscated, is big bunches better than not declaring and being punished for smuggling.

2.  “What’s in a name?”  Medicines and drugs may be the same thing in Des Moines, Iowa, I wouldn’t know, but lemmee tellya, they’re entirely different things at a border checkpoint!  When you’re re-entering the USA, and they ask you what you’re bringing back, for heaven’s sake don’t say, “just some drugs”.  Repeat after me, “MEDICINE”, “MEDICINE”, “MEDICINE”. 

3.  Oh, by the way, if the “medicine” involved is a scheduled drug (narcotic, barbiturate, amphetamine, etc.) in the USA,  you’ve crossed into a gray area that I haven’t trod myself, and can offer no advice other than extreme caution.

4.  If you have a prescription in your possession, you can bring back a 3 months’ supply of a prescription drug for your own use.  It might be possible to cross multiple times in a single day to bring back more, but what with computerized data bases, that maneuver might be risky.

5.  If you don’t have a prescription in your possession (inclusive of the circumstance that you don’t have a prescription, period), you’re allowed to bring back “50 units” of the prescription item for your own use.  Most medicines are 2-3 times a day, which means we’re talking about less than a month’s supply for most items.  The question of what a “unit” is, is evidently left up to the customs officer.

UPDATE:  When it comes to the issue of importing medicines for your personal use, in general the role of Customs is to enforce FDA regulations, as a service to the FDA.  The FDA regs & policies are internally contradictory regarding this issue, but Customs’ job is easier if they interpret the conflicting regs liberally, so that’s what generally happens unless you get an agent who got his ass chewed earlier that week for having too low a rate of snagging possibly illegal medicine.    …….The following FDA website explains their policies on “personal importations” and how those policies sometimes differ from a narrow interpretation of the regulations:  fda.gov/ora/compliance_ref/rpm_new/ch9pers.html

6.  The whole subject of medicines not approved for prescription in the USA isn’t one I’ve researched.  I can tell you that Mexican pharmacies usually know nothing about medications which are in the general category of drug-company synthetics legal for sale in Mexico but not approved by the FDA here.  American gringos almost never ask for such things, so the clerk has never heard of it and can say “no lo tenemos” more easily than to research it. 

7.  In Mexico, raw herbs are available everywhere, but you have almost no way of knowing what you’re getting unless you know more than the herb vendor does.  Natural medicines in processed form such are available in the USA, are far less known five miles south of here, than just a mile down the street.

8.  There are some distinctively Mexican packaged/processed medicines worthy of attention.  I’m embarrassed (not “pregnant”, you Spanish speakers!) to say that I am poorly informed in this area.  One patent medicine which has a good reputation which I have purchased for others but not used myself is “Te Amada”, an herbal tea used for treating upper respiratory symptoms from colds and flu.  UPDATE:  I researched the ingredients in Te Amada and concluded that it is an excellent formulation for its intended purpose.

9.  MEXICAN PHARMACIES ON THE BORDER:  In general, they have a good reputation for selling the real stuff, not counterfeit, whatever the stuff is;  and the cost is usually far less (typically about half) what you’d pay at Walgreens 5 miles to the north.  Does the clerk understand English?  Maybe not, but if English is necessary to complete the transaction, English will be dragged in by the collar if necessary.  …. Now, suppose you have an Rx and don’t want to part with it, or suppose further you have no Rx at all for this prescription drug NO, SLAP MY MOUTH, “MEDICINE!” that you want, how on earth can they legally sell it to you under Mexican law?

If you think about this question carefully, you will undoubtedly come up with the right answer.  If you’re not sure you have the right answer, you’re in over your head, stay on this side of the border.

I suppose that just about everyone who buys their medicines in Juarez has their own favorite pharmacy.  Of the various Juarez pharmacies I’ve been to, here are several which I consider worthy of your attention:

ISSSTE Farmacia 117

Anillo Envolvente Pronaf 4

(North end of Las Americas, west side of street)

A close friend has done business here for years and says they’re the cheapest in Juarez.  It looked a pretty good pharmacy to me but they didn’t stock the  unusual medicine I was looking for, never even heard of it.  They sent us to Farmacia Del Prado-- that’s good service, eh? ….. Of the various pharmacies we visited, ISSSTE was the busiest, which means that customers had some reason to go there. So it’s probably pretty good.  UPDATE:  I’m told that ISSTE is a Mexican federal government subsidized pharmacy, and that’s how they manage to have such low prices.)

Farmacia Del Prado

Las Americas 1351

(North end of Las Americas, west side of street, a block south of ISSSTE)  Much smaller than ISSSTE but they had in stock the medicine I was looking for, for less than half the Walgreen’s price.  In another instance they were out of stock and sent someone out to snatch it from another pharmacy nearby which did have it.  That’s service.

Farmacias Similares  (many locations in Juarez)

A chain which advertises that they’re the cheapest.  They didn’t have the medicine I was looking for.  It looked like maybe they specialize in generics.  UPDATE:  I’m told that yes, they specialize in generics, but rumor has it that some of their generics are substandard.

Farmacia Munoz  (with a tilde~ over the n)

Carretera Internacional No. 444

(Cross the Zaragoza bridge and continue south on the main highway.  They’re about a mile on the left.)

Open 9 AM to 9 PM every day including Sunday

To call from the USA, dial 01152-656-682-0040. If the person answers in Spanish, ask in Spanish for someone who speaks English, thus:  “No hablo espanol.  Hay alguien de habla ingles?”  Or if you can’t do that, just say “Speak English?” And wait until someone who speaks English comes on the line.  They didn’t have the medicine I was looking for, but wanted the business.  They asked questions about it, looked it up in their books, offered to special order it, no deposit required, several hundred buck’s worth, very expensive stuff.  They got it in the following business day and had it ready for us.  Their price wasn’t rock bottom, but was still far less than Walgreens, and they’d taken a risk by ordering the stuff for us without any guarantee on our part.  Because they’re so close to where I live, they’re now my pharmacy of choice.  UPDATE:  Turns out a gal at church knows Senor Munoz personally and holds him and his pharmacy in high regard.

UPDATE 26 March 06: Chain supermarket pharmacies--   I’m told that S-Mart and Soriano (chain supermarkets in Juarez) have pharmacy pricing competitive with ISSSTE, which they can achieve through their huge buying power and vertical integration of distribution.  I’m also told that the Juarez Wal-Mart is fairly competitive. 

UPDATE June 06:  In Mexico, prescription and over-the-counter medicines have a maximum price under  Mexican federal law, which is posted on the package.  Some pharmacies may charge you that price, but it’s almost always far less than what you’d pay in the USA.

10.  INTERNATIONAL MAIL ORDER PHARMACIES    I believe the law is the same as for bodily transporting stuff across the Rio Grande.  I haven’t used international mail order pharmacies myself.  If I did, it would be because: 1. the pharmacy in question came well recommended;   2. they had something I wanted that I couldn’t get more locally; and 3. a delay of two or more weeks would be acceptable.

                   Don’t Own the Disease

A friend of mine attends a well-known local Pentecostal megachurch (pretty good one, I’ve visited a couple times myself, and watched the pastor on TV).  Like many Pentecostal churches, they emphasize “faith healing”.  In some such churches, it’s mostly superstition and/or show biz, but in others like the one he attends, they actually think some of it through carefully.

My friend constantly reminded me, “Don’t own it.”  It was good advice.

The point is, that if you identify yourself with the disease, you will have a tendency to actually become the disease, making it difficult for healing to take place.  If you visualize the disease as something external to yourself which you do not accept as yourself, your interior self is maintained strong and healthy and your immune system (inclusive of your behavior motivated by psychology) will work to overcome the disease or at least slow its progress.

I have third-hand information about an ALS patient who received a copy of an earlier edition of this report, who took no interest in it.  Why?  Because he already “owned the disease” and was not willing to let go of that ownership.  He’d been told to be helpless, he’d accepted that helplessness, and now it’s mentally easier to remain helpless than to reject helplessness and do something. 

That might seem irrational to you, but this is typical human behavior.  That this is such common behavior, is one of the reasons that “faith healing” actually works.  Faith healing practice by its very nature includes rejection of ownership of the disease.

How to buy nutritional supplements & herbs etc.

A lot of stuff out there is substandard quality and some is outright fake.  How do you know what to buy?   Here are my rules of thumb.

1.  Pay attention to supplier reputations.

2.  If an herb is something that is somewhat rare and harvested in the wild, and if there’s lots of media attention about it, the temptation to sell substandard or fake stuff is hard to resist.  On things like that, stick with highly reputable suppliers.

3.  If a non-herb supplement is generally expensive (for instance CoQ-10 and SAMe), mistrust product offered at price far lower than that of reputable suppliers.

4.  If the material in question is cheap and something that any rudimentary laboratory can assay  (zinc, mag citrate, vitamin C) a broad range of suppliers can be considered with reasonable confidence.  However cheap product can often be obtained from highly reputable suppliers.

5.  If the material in question is relatively cheap and has not been the subject of a spate of recent media hype, a generous range of suppliers can be considered.  Example:  St. John’s Wort. 

6. In the case of herbs, standardized product is usually preferable to nonstandardized.

7.  Pay attention to dosage.  Some stuff is sold in dosages too small to be effective. 

8.  Pay attention to form factor.  Large tablets and “softgels” can be hard to swallow since they can’t figure out which way is down.  Caplets and long softgels once they get started down the gullet don’t try to tumble on the way down, and slide down much more easily.

9.  Many products, especially antioxidants (but generally not minerals) will start to deteriorate as soon as the bottle is opened.  Therefore on such product it is preferable to resist the appeal of “giant economy size”, and to buy it in the smallest bottles available within reason.  A few products are available in foil pack which protects the product until the moment it’s popped out for use.

10.  In the case of herbs, make sure you know what the “active ingredients” are (if that’s been established scientifically), and when shopping look for products described by the herb name as well as by the active ingredient name.  Then make your choice.  Example:  turmeric, turmeric extract, curcurmin.

11.  Some herbs are fairly predictable in nonstandardized form, whereas the therapeutic value of others is highly dependent on variety, growing conditions, timing of harvest, part of plant harvested, method of processing, etc.   If you don’t know enough about the herb to trust anything less than standardized product from a reputable supplier, don’t.

12.  If it’s advertised on television, mistrust it.

13.  In general I’m cautious about house (store) brands, which are almost always private label products manufactured by an independent manufacturer.  Some stores simply go with the cheapest supplier they can find, and take the supplier’s word for it on quality.  Others realize that with the store’s name on the bottle, the store’s brand name is at stake.  If you look carefully at what kinds of products carry the store brand, it’ll give you a clue as to whether they’re staking their reputation on the product or not.

14.  If you read the fine print on the house brand product you can often identify it through peculiar details as a private label product from a reputable manufacturer which is identical to the manufacturer’s own brand name product.

Now:  here are my preferred suppliers based on about 10 years’ experience. 

TOP TIER:  Nature’s Way, Rain Tree 

SECOND TIER:  Twinlab, Solgar

THIRD TIER:  Source Naturals, KAL, Solaray, Natrol, Jarrow

FOURTH TIER:  Safeway, Vitamin Shoppe (both of ‘em store brands)

The absence of a brand name from this list does not necessarily imply I don’t like it.  It may merely imply that I’m not sufficiently familiar with it to report confidence in it.

I frequently buy stuff from other suppliers if it’s stuff I figure that this particular supplier can probably get right, either because its easy to get right, or because it’s a specialty product that the supplier is building their reputation around and it looks like they’ve invested as much in the product as they have in the advertising.  In the former category are some store brand vitamins.  In the latter category are products from Food Sciences of Vermont, and Lane Labs (of Australia). 

Lane Labs stuff can probably no longer be imported because they were busted hard by the FDA.  I didn’t follow the case but I suspect the underlying problem was that the products worked too well, having used one of their products (“SkinAnswer” sandbrier extract) myself.

I buy most of my supplements and herbs from VitaminShoppe.com.  They have a vast selection and a rather ignorant but still useful search engine.  They also have a print catalog, which helps to establish their bona fides, and you can order by phone or by mail if you don’t have or don’t trust the Internet.   But…don’t underestimate their ability to screw up anything having to do with shipping -- go with their cheap standard parcel post shipping to the same address as your billing address, unless you’re feeling in a risk-taking mood.

I frequently visit local “naturistas” (natural products stores) to see if there’s anything on their shelves that provokes my interest, and/or to pick up something that I ran out of.  My local favorites are Rainbow Natural Foods and Sun Harvest, but I visit others as well. Wan Jia Le Supermarket (5901 Gateway West) probably has the best local selection of Chinese herbal medicines, and RV Grocery on Mesa St. stocks a few raw Ayurvedic herbs.  I consider it important to patronize local naturistas (rather than relying entirely on Internet suppliers) in order to keep them in business for my own convenience, and to keep them visible for other people who are new to natural health products and wouldn’t know how to order what over the Internet.  Some naturistas have employees or owners who are quite knowledgeable in natural health & medicines, and can be very helpful in selecting products from their shelves or special ordering items.

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<lots more material goes here, that hasn’t been written yet>

Resources

You may have noticed that unlike an academic journal, this report doesn’t have a lot of references.  The reason is simple:  Google. 

I mention here what I consider to be some of the key resources for anyone with ALS.  They run the gamut from narrowly mainstream sites with little information for a patient other than advice on how to die, to resources which do a poor job of distinguishing natural therapies with some warrant for confidence, from pseudoscientific quackery.   The web resources named below have enough information to keep you overwhelmed for as long as you like, even without following them to external links.  And of course if you plug  “Lou Gehrig’s Disease” into a search engine, you’ll get more links than you could study in a lifetime.

lef.org   Life Extension Foundation.  “World’s largest nonprofit organization dedicated to investigating every method of extending the healthy human [lifespan].”  Publishes Life Extension Magazine.  Several search engines.  Online store.  If you believe as I do that being healthy is cheaper than being sick, and feels better too!, then you really ought to check out LEF. 

lef.org/protocols/neurological/als_01.htm   LEF’s section on ALS.  Probably the best single online source of ALS nutritional and herbal therapy information.

lef.org/protocols/abstracts/abstr-008.html  LEF’s collection of scientific abstracts pertaining to ALS.  Note:  Scientific abstracts can be frustrating teasers:  they’re in effect advertisements for the journal article they summarize.  Most journals are expensive and many have restricted distribution.  A few however are available online either free or for a reasonable charge.  Sometimes if you can track down one of the original authors he or she will provide you with a copy of the publication.  Note:  see the Warning! below about medical scientific research publications.

mdausa.org  Muscular Dystrophy Association, well known for their fundraising efforts.  A lot of their emphasis nowadays is on ALS.

als-mda.org  The MDA’s ALS division.  If you’re planning to die, or to research the biochemistry of ALS, it’s a good resource.  If you’re interested in therapies that work, they’re not much help. 

mdausa.org/publications/als  The MDA’s monthly ALS newsletter.  Lots of recent scientific research. 

WARNING!  Most medical research in the Western world is either funded by drug companies, or done in such a way as to pander to drug companies in hopes of cultivating a business relationship.  When natural (unpatentable) therapies/substances are researched, there is often a strong incentive to structure the research in such a way that the researchers can report with a straight face that the natural stuff didn’t work.  (A report that says the natural stuff works is bad for business, and therefore unpublishable-- so why bother?)  ……In all fairness, it must be said that most natural therapies are not very effective-- a distinction they share with mainstream medicine.  Because of patent law and the way government agencies are funded and directed, the well-moneyed mainstream is in the artificial stuff, and the research will naturally tend to follow the money.  Meanwhile, some research is also done by manufacturers of natural stuff, and you can expect them also to publish the favorable outcomes and to not publish the unfavorable.  SO WHAT AM I SAYING?  In the research, there’s lots of useful information, but be skeptical, be skeptical, be skeptical!    ……….So darn, how about Dave J.’s research?  Yes, be skeptical.  I don’t earn my living in the medical field, and do want people to be healed, but just because I’m so damn squeaky clean and holy doesn’t mean I have no biases and don’t screw up. Become your own expert on ALS therapy, relying on information wherever you find it and sorting it all out with healthy skepticism and insight. 

alsnetwork.com  A sort of clearinghouse for information on ALS.  They have a forum. Probably an excellent site although I haven’t used it much myself.  Don’t prejudge it by what I’m about to say next…….I clicked their link “Ten ways to avoid being quacked”.  The content of that link is itself mainstream medical quackery, and finds no fault with the fact that mainstream medicine offers no effective treatment for ALS, a disease regarded by that same mainstream as being 100% fatal!  …… In religion, this would be like attending a church that promises its own members that they’re going to hell guaranteed, meanwhile warning about those other heretical churches whose promise of heaven is suspect. Not one church on the entire planet is so delusional as to teach doctrine that stupid!  But mainstream medicine is that delusional-- click the link and see for yourself.

alsa.org   ALS association affiliated with the National Health Council.  Mainstream medicine approach, lots of money.  Good information on how to die, but of little use to anyone seeking information on how to live.

ALS Research Digest   This is an email digest of scientific research to which I subscribe.  Online archives:  als.net/research/hubben/archive/asp .

To subscribe:  als.net/research/hubben/signup.asp .

als-options.com  Emphasis on non-mainstream methods.  Big on detoxification.  Many of their suggested therapies appear to have no scientific basis.  To put this in perspective, remember that lack of a scientific basis doesn’t mean a therapy doesn’t work, and meanwhile there are plenty of mainstream therapies for things other than ALS which have a rational basis and yet have a bad track record.  This is a very useful site if you are skilled in the art of skepticism. 

ericiswinning.com   Book by Eric Edney, who is successfully treating his own ALS.  His success was part of what inspired me to do what I have done. 

Tuesdays with Morrie  by Mitch Albom.  A true story.  Couldn’t find a website for the book, but if you Google “Tuesdays with Morrie” (in quotes) you’ll get reviews and booksellers.  Morrie received no effective treatment for ALS, and died:  this story is about how Morrie used his impending death as a creative act to pass on the gift of life.  …..The story was so compelling that it was reported on CBS television and made into an award-winning movie, now available on DVD.  The movie site is:  imdb.com/title/tt0207805/ .   ………A friend gave me a copy of the book in the summer of ’05 when I was headed downhill fast and there was little reason to believe that the therapies I was exploring were going to do much good.  The book helped to confirm the diagnosis itself, and helped me to adjust to my likely impending demise. 

Principles of Neurology, 8^th Edition  Ropper and Brown 2005 McGraw-Hill.  Found this at Barnes & Noble for $125.  It’s been worth every penny.  The Web doesn’t make good textbooks obsolete.

                                     DIAGNOSIS

The development during adulthood of both upper and lower motor neuron pathological signs and symptoms, in the absence of other neurological signs and symptoms, and accompanied by muscular atrophy, is generally regarded as definitive of ALS, ruling out other diagnoses.  The international El Escritorial criterion used by most doctors is a little different, but is based on similar reasoning. A doctor can in principle diagnose ALS if the patient exhibits motor neuron disease and if the signs and symptoms don’t warrant any other diagnosis:  however most doctors won’t do it until the patient’s condition has become pretty bad.  One way out (which I learned from neurologist N2) is to offer “possible early ALS” and not suggest any alternative.  That way everyone who wants to know, does, and anyone who wants denial has some still available.

Not all ALS cases exhibit this upper-and-lower pattern initially.  Early ALS often manifests as signs and symptoms of only upper or only lower motor neuron disease.  Either way it normally progresses to involvement of both upper and lower motor neurons.  So to say that a patient has (for instance) primary lateral sclerosis (upper motor neuron disease) or middle-age onset spinal muscular atrophy (lower motor neuron disease) but not ALS is telling only half the story.   “Progressive bulbar palsy” is a form of ALS which manifests itself first in the face, jaw, mouth, and pharynx.

Hyperreflexia, fasciculations, and spasticity are usually prominent in ALS.  These features are absent in most other neuropathies and the combination is virtually unique to ALS.

Since government-standard mainstream medicine offers no therapy for ALS other than the nearly-worthless Riluzole, and since the conventional wisdom is that ALS is a death sentence, doctors generally won’t make the diagnosis until telling the patient has become a real necessity.  Even if a medical doctor is aware of alternative-medicine treatments which may be helpful, the doctor may not be willing to discuss them out of fear of accusations of quackery.

The real tragedy of delaying telling the patient, is that while the delay is occurring, the patient is suffering permanent damage which there is as yet no known way to repair.  (Or, at least I haven’t come across that knowledge.) Through the circumstances of fate, I was able to know what my problem was and to begin therapy within a few months of the first symptoms, and so the only damage which was both obvious and permanent was to my right quadriceps.  Even the quadriceps was not totally gone, and what’s left of it is in pretty good shape now.

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