New Resources (to me)

JohnnyMags

Distinguished member
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Joined
Feb 17, 2025
Messages
106
Reason
CALS
Diagnosis
10/2024
Country
US
State
PA
City
Langhorne
Today I was talking to a CALS who I just met. He was telling me about a website he felt was more beneficial to him than the clinics. That in itself is a suspicious statement however he seemed like a level headed individual. The site is HealingALS.org. I'm sure there are people on here that know of this site. I didn't have time to look into the site that much but I saw they are talking some bold claims. Namely reversal and that's about as big as it gets. My main question is this a scam? The site is free so I don't see what the purpose of a scam like this would be.
 
It is not totally free (some of the steps/materials cost, the cheapest fee for the conference is $529 and there are other means, including donations and referrals, where money changes hands one way or the other), but that is not my major concern.

Several of the methods suggested, such as "detox," including various supplements, can cause kidney and liver damage, malnutrition, and medication interactions, among other issues. The hypotheses are a very familiar list from my cancer center days, where quackery enters cancer "treatment," resulting in preventable deaths.

The questionnaire measures they are using to assert success are entirely self-reported and therefore subject to "placebo effects" where hope can influence what a person perceives as truth. Their site is not even proofread, but they are conducting a "study" with N=1000? I think you can guess what the results will be.

I am sorry, I would classify it as a scam. The ratio of junk to real science in naturopathy and the site is uncomfortably high, and false hope keeps P/CALS from seeing tactics with a greater chance of benefit.

We have science- and experience-based strategies, from BiPAP and mobility devices to feeding tubes and social/natural interaction, to live a longer, better life with ALS than without them.

But I do not see that the resources at that site reflect what PALS already have access to, as much as they recycle what I call "Santa Claus guilt" -- have a more positive attitude, de-mold yourself, etc. and you can be a "reversal." Fail at any of the 47 points and you die like everyone except the 60 reversals. Very cynical and cruel, if you think about it.
 
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Laurie I knew you or Nikki would have the facts on this. The fact they are promoting reversal is an immediate red flag. I just wish I hadn't mentioned it to my wife. That was rather stupid on my part I guess I just wanted to give her some good news

While I'm on here I need to ask about something that is worrying me with my wife. At the clinic they seemed to want to say she tests almost the same as 3 months ago. We know her strength is reduced and as for breathing she has been coughing a lot. It's a cough where she can't cough hard but it feels like there is something in her throat. This doesn't seem good. If it is a problem I have no idea what I need to do. For reference she has a BiPap machine but she doesn't use it right. They said use it until you can get 4 hours a day getting use to the machine. She uses it every other day and has not surpassed 2 hours yet. She is kind of giving up and it's breaking my heart.
OK I just told her I was concerned about all the coughing going on and she says she thinks she has a cold ... She has runny nose and she feels lousy. This doesn't change the coughing she has had from time to time and the unable to clear her throat is still a valid symptom for her.
 
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I'm not sure what "use it until you can get 4 hours a day" means. The BiPAP is usually easiest to get used to while watching TV, listening to music, etc. -- not focusing on it. I would point out to your wife that it's just a tool that gives her more time to focus on something more fun than her next breath, just as a dishwasher keeps you from spending all night on the dishes.

It may be easier for her to go ahead and try it for sleep. Even a few minutes might help her see its value more, when lying down.

Coughing is usually due to weaker muscles to clear normal secretions, but if she has a cold, that's more secretions on top of the normal ones. This page may help: www.alsguidance.org/breathing/managing-secretions
 
Thank You again Laurie ...What I meant is they want her to build up to 4 fours a day wearing the mask while not sleeping. The intent was to get her use to it and then switching to wearing it all night
 
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Yes, I thought that's what you meant, but there is no reason to force it like that. For some people, it's easier to adjust when awake and for others, they fall asleep with it. Prejudging which way works for her is silly.
 
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