Beyond my comprehension

This post is prompted by a series of comments within the ALS community and out on who is promoting FALSE HOPES, who we call charlatans, what is snake oil etc.

My opinions come from OUR 

(Tracy and my, mine, me???? huh....sorry dear)  experiences but also the experiences of those around me who "warned us", guided us, educated us, took advantage of us, protected us, helped us, believed in us, depressed us, lied to us, inspired us, talked with us, gave to us.....

There is post after post on Facebook, You tube, the internet in general about what is true and who is telling the truth when it comes to ALS and the journey that goes with it.

This is so important because FALSE opinions KILL.  When people in crisis are discouraged away from healing concepts the results are obviously deadly to those with ALS.

Almost without fail when there is a hopeful, encouraging post about how to help those with ALS improve their health there is someone or a series of someones screaming BULLSHIT. Almost violent in their reply.  Sometimes that's it, but sometimes these people will go on to say "if this was REAL certainly the Doctors and medical world would know about it". 

 (Show me PROOF of that statement.  

That is NOT a FACT is it?  It's an opinion based on what?)

When people cry BS- their logic is often times- doctors say that's not true, it can't be, it's impossible.  Doctors say- there is NO PROOF.  If there was proof they would have a test to show that it is true.

(case in point: There is NO TEST to PROVE you have ALS.  How can there be a test that you have healed it?)

How can they test for something when they themselves admit they haven't a clue what they are looking for or at?  Because THEY don't have a test doesn't mean anyone healing was never sick.  That makes no sense does it?

I was one of those who believed this, in the beginning, that Doctors were the EXPERT

S because they told us they were.  

Everyone else told us they were.

I was brought up with the understanding that there is a God, the sun rises in the east and sets in the west and doctors were brilliant over worked kindhearted people who have committed their lives to healing the sick. Next to priests they were the go to guys.  

(I know, look how that turned out). 

I said those exact same words at first.  Tracy said those exact same words.  EVERYBODY says those exact same words.  By why? WHY do we believe the doctors.   Because they say so.  But THEY also SAY to us- We have NO idea why you got this. We have NO IDEA what to do to help you but don't look to see if anyone else can help.  

This mindset is absolutely beyond my comprehension.

Why wouldn't we or shouldn't we look for healing when they tell us they have no idea what they are doing and they have PROVED they are right about that fact for the last 80+ years? 

Perhaps the answer isn't medicine!!! Which is all they provide or test for!

 

What other industry besides medicine could get away with that attitude of we can't help so don't look for anyone else?

If a car repair shop said they had no idea how to fix your car- would you respect their opinion and just not try to fix your car? Junk it?  Or would you say- I'll ask around for someone who has fixed the same kind of problem my car is having?  

They repeatedly tell us they know NOTHING about what to do or how to help but they are SURE that the people who are walking and talking and working 10-20 years after diagnosis have no idea what they are talking about because they haven't met the medical world's requirements of proof.  The people who have healed are not investigated or tested even tho they have offered themselves as lab rats.  Why?  Why are they not investigated?

I am not saying believe me.  I am saying if you are so SURE you are right, and that I am a silly, misguided nimrod- prove me wrong.

Pick up the phone and call these people who say they have healed like I did.  Get on skype.  Ask for their records.  Meet with them like I did.  Give them a polygraph.  

Or just keep believing what you want and spitting out opinions on what is REAL without doing a lick of research.

The reason I am sooooooo pushy about this point is because those FALSE opinions KILL.  

Telling people that they are gullible fools to even consider looking for healing is CRUEL.  

I have had these words spit at me by many a doctor when I made it clear that I was working to heal my husband.

 Either doctors DON'T know about these people that I found (when I had no time or sleep and no education and can barely turn the computer on by myself)  or they won't ADMIT to knowing about it because I know for an absolute FACT, what helped us and their information did.  I may not know why.  I may not know if it is gonna help another person.  But I KNOW it helped, because we experienced the improvements.

I found that help by searching for people who have healed from ALS symptoms.  I CALLED THEM.  They did not solicit me as doctors want you to believe.  They offered their information freely, passionately.  They sent us things at their OWN EXPENSE in order to at least TRY to help us. That in itself was healing.

When I tried to tell the doctors, nurses, staff, clinicians how we improved symptoms NO ONE wanted to hear it.  Not only did they NOT ask questions, they got up and physically walked away.  When I tried to share anything that helped us with other ALSers ASKING US why we were doing so well we were consistently interrupted.  They politely made sure I did not pass any of my info to others.

I know, I know - I am stepping into a big old pile of dog poo by posting this.  I'm not doctor bashing for it's own sake. I am trying to get you to wake up and ASK QUESTIONS before you blurt out an uneducated opinion!!!  I now formally put MYSELF (before anyone else could) into the crazy conspiracy pile.  That's not my goal.  It's a sacrifice I am willing to make to help others suffering needlessly.

Now, honestly- I can understand why a clinic or doctors office would not want me spreading hope where they believe there is NONE to be had-( except that depression added to a nerve disorder can only make things worse but lets pretend I didn't say that for now).  

But, if someone DID improve things you were saying were impossible to heal- wouldn't you be curious?  I mean I'm not saying we had a magic cure.  I am saying we IMPROVED ISSUES they said were impossible to improve.  They said things were symptoms of ALS that we healed after they told us they had NOTHING to help us.  They told us we would have to learn to live with it.  It was part of the journey.

I am saying that the next time you read a post that is hopeful followed by someone's "opinion" that it's crap- ASK THEM- why do you believe it's crap?

If they have NO PROOF tell them keep their opinions to themselves.