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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Scent to the Emergency Room – The Perils of Air Freshener and Other Masking Approaches

What I saw happen last week was a classic case of non healing approaches creating a cascading downhill path to a crash.

It started off pretty simply, with a woman whose house had air quality issues, including those caused by someone’s smoking. She also had some other stressful things going on in her life.

So what did she do? Did she heal the situation? Did she do something about the underlying issues?

Oh no.

She whipped out a can of air freshener, and blasted away, a classic example using of a masking approach, one which covers up problems without really solving them.

“good for me” she said.

Maybe.

Now with the air quality issues buried under a haze of probably toxic chemicals made to smell good and other issues still causing stress in her life, sure enough the woman developed a heavy cough, which kept her up at night.

Did she react by dealing with the underlying issues and healing the situation? To a degree she actually did. She started working to get some of the stress and air quality issues dealt with.

At the same time she hurried down to the local pharmacy to pick up some medication. Once again she was choosing a masking approach.

So,

At one point after taking the medication, she lost her footing somehow and somehow was not even able to break her fall.

Slam, she planted her face on the floor, hard, possibly hard enough to crack her skull, and that’s why she decided to go the the emergency room.

The whole thing seemed connected. Was it the lack of sleep, or an effect of the medication or what that had caused her to fall in a way that she had not fallen in years.

However exactly it worked, it seems clear that masking issues rather than resolving them once again led to a crash as it so often does.