The ALS “False Hope” Thing – One Spouse’s Strong Opinion

Soon after I started working with people to help them solve als, I did a presentation to the care team at a nearby ALS Association Chapter.

I told them about what I have going on and how it is all positive and has essentially no negative side effects and costs little to implement. So really, giving it a shot would be a no brainer.

While some of them were interested, the consensus was that they were rather reluctant to say anything about it to people experiencing als because, among other things, they were concerned about giving people “false hope”.

Since then I have heard this false hope thing repeated over and over.

What is this thing with false hope? I mean it seems something along the lines of disrespectful to withhold information from people, as if they are so weak and pathetic that they cannot handle ideas or make decisions for themselves. Beyond that, the message people are given, the story about als being somehow so called “100% fatal” is not even correct.

I suspect this same false hope thing goes on with problems other than als and, while maybe people feel that they are helping somehow, it can go too far and often tends to be just wrong.

The following are excerpts from an email message I received from someone whose spouse has been diagnosed with als and who has experienced the no “false hope” approach. Her frank response to it hammers the point home rather well.

I keep hearing people defending the doctors and it amazes me.
I hear over and over the doctors don’t want to give us FALSE hopes.
In our situation ANY hope is welcome.
To tell us there is NO hope is irresponsible!!

IT’s proven that positive thinking improves health, mentally, emotionally and physically.
Spontaneous remissions happen.  They don’t tell us that.
To purposely repeatedly plunge us into despair is torture and torture is illegal.

Massage is proven to help with discomfort, increases circulation and promotes healing but they don’t provide anything but a PT to show you how to stretch.

There are people alive! that have had ALS for years that say they have improved their health through holistic means.

What say you and I go kick some Doctor booty – (in a healing loving fashion) and sue their pants off?

By not at least presenting the information the holistic world offers they are promoting a death sentence.  They are lying to us!!!  There by causing emotional distress and possibly unnecessary horrible death.

They should be held responsible for that.

The way the doctors present the diagnosis is horrific!!  It took months for me to get my head back into living instead of dreading dying and I am in the HEALING World.”

“The anti depressants he started on made him so tired he couldn’t move.

They tell you eat all the carbs you want…again making any healthy person sick.

People keep telling me I don’t have time to fight this battle but I hate to think of all the other people who don’t have the mind set or support or education we have.

Enough said.

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2 Comments

  1. Amy said,

    2011/12/18 at 6:48 PM

    Maybe it’s our responsibility to be educating the doctors. Is it possible they really don’t know any better?

    • Marty Murray said,

      2011/12/19 at 12:23 PM

      In some way they don’t know better. In other senses maybe they do. What it comes down to is that this goes on because of something along the lines of a combination of lack of awareness, misconceptions and psycho spiritual issues.

      In any case, I tend to agree with your idea that the thing to do is help people to become more aware and do a better job.


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