This forum is great, but some need to take a chill pill

[jellis86]

In the short time I have been a member of this forum, just over a year, I have noticed quite a change.

At first people would give good advice and try and be as helpful as possible...(Those people are still on here but less of them).

Lately I've seen the trend of trying to convince people what they take, or don't take, for ALS is the way to go.

Arguments for or against natural remedies and scrips are fine.

On the other hand, telling people that something is snake oil and a waste of time and money is NOT okay.
The same if people try and convince others that they have found "the cure".

We all know the adage, "everyone with ALS is different." How very true that statement is.

Recently we have started to attend our local ALS support group.
There is one PALS that was diagnosed in 2002 and still on non invasive ventilation, just a step 2, or stage 2..can't remember the nomenclature, bipap.
He has taken Rilutek ever since diagnosis and believes it's played a role in how slow he's progressing.

There is another guy who was diagnosed 3 years ago and you would never know he has the disease. He walks, talks, uses his hands, etc. all without assistance. He swears by a "bean diet" that he has slowed his progression down.

There are others with varying degrees of progression but one thing I really appreciate there, NO ONE tries to convince you that what they take is the magic bullet! Nor does anyone try and convince people NOT to take something.

Also a former CALS attends and her husband passed away after just a few short years with ALS. He was taking all the home remedies prescribed by a person educated in holistic medicines.

So, back to my original rant...it's okay to let people know what has or hasn't worked for you...but IN MY OPINION, it's NOT okay to try and talk someone out of taking a particular drug or home remedy or trying to convince them TO take them!

Okay, I'm done now!

 

[ottawa girl]

A debate on treatments - is a debate. One makes up one's own mind. But I hear what you're saying.

My fear is a repetition of the CBS 60 minute segment in which two PALS were really taken in by a sophisticated stem cell scammer. Don't know if you saw the episode; I remember it vividly... I watched it before ALS crashed into my life.

I've read of a few PALS who were divested of thousands of dollars. It's great if you can afford it, but in one case the family lost their beloved PALS in addition to everything else. It's a sad reality that the unscrupulous prey on the sick and elderly.

Personally, I am wary of things which sound to good to be true; I also do not arbitrarily discount theories emanating from outside of our western ideologies. Although, I did draw a line in the sand when told by an acquaintance that I "could will the ALS out if my body if I really wanted to because it's just a question of mind over matter".

So... About that bean diet - do you have details?

 

[bowser]

I found it strange that neither of the reputable neurologists my wife had perform a diagnose showed enthusiasm for Rilutek.

After realizing VERY FEW people taking it had seen great results, I can understand why.

 

[Cricket]

Thanks jellis! I believe pals need to do what they think is best for them. But like ottawa girl pointed out, so many are willing to do or sacrifice just about anything to get the upper hand on als. Throwing judgements and taking away someone's hope can be hurtful. I guess, once diagnosed with als, we automatically earn the right to decide how we will deal with it... "whatever floats your boat". Nice to know that we are not alone when visiting the forums and that we can count on each other for help to stay afloat.

 

[sadiemae]

I too have seen MANY families financially devasted by unproven and questionable t reat mants. ALS Untangled is a good resource, but they are very conservative. We do not have to pay for Rilutek, so we take it, but I always advise folks not to go broke taking it. As far as Stem Cells, I always tell them not to waste their money, and that it can be very dangerous.

 

[MaxEidswick]

There is another guy who was diagnosed 3 years ago and you would never know he has the disease. He walks, talks, uses his hands, etc. all without assistance. He swears by a "bean diet" that he has slowed his progression down.

Okay, I'm done now!

Bean diet?

Max

 

[Cricket]

Beans, beans, the magical fruit... The more you eat...

 

[ottawa girl]

.... The more you toot.

I thought such a diet could relieve me of ... And maybe do for me what it's done for jelli's friend - slow progression.

I'd be willing to try it.

Jelli - please PM me details if you have them. Seriously. What harm can it do?

 

[MaxEidswick]

beans, beans, the magical fruit... The more you eat...

lol! ...

 

[jellis86]

Look up Karen Hurd on line.

She has a book too, The Bean Queen's Cookbook