RE: BLOG POSTING - "WHAT IF?": This posting... - Cure Parkinson's

Cure Parkinson's

26,582 members27,897 posts

RE: BLOG POSTING - "WHAT IF?"

JonStamford profile image
28 Replies

This posting has elicited more complaints than any posting to date.

The contention of the complaints is that this is self promotional, not scientific and potentially dangerous.

We at PM uphold these assertions. The posting will therefore be removed in the morning.

Written by
JonStamford profile image
JonStamford
To view profiles and participate in discussions please or .
28 Replies

Thank you John

regards

Alan

Want2Help profile image
Want2Help

Just so I can learn, what was self promotional?

Mentioning my site? I was simply trying to be efficient since the whole dialogue was carried on away from my computer I chose not to copy content from there to here.

It seems odd to me that a PD site does not want to entertain the idea that their mind may behind their disease.

There was no request for any money, it was strictly an honest offer to help.

My apologies if I offended anyone... Specifically, my apologies to Alan if I seemed to him like a phony. I'm not.... and I understand he must have his experiences and reasons for thinking that.

With kindness

Want2Help

in reply toWant2Help

Dear Mr Want2help, with respect you are very especially unhelpful. We can all remain open minded and free thinking we would be dumb not to. After all some of the greatest discoveries of mankind were unexpected and left field. However you have missed one crucial point in all of this. You cannot mess with people who have a chronic degenerative condition meaning, it is wrong to suggest to anyone that a solution exists as tenuous as you propose. I am vulnerable, yes I am, emotional, in pain. My life once fell apart, I lost everything, my home, my job, my car, my life. For 4 years I didn't earn a dime and for 3 years I didn't eat. Somedays I struggle to walk, other days I can wet myself. I can be insecure, have low esteem and be confused. If you truly 'Want2help' don't toy with me, don't tell me things you don't know to be true. This is serious. Deadly. If your Dad has PD he will need a son, not some kinda Magician with rabbits and hats.

Kindest

C

Oh and P.S. guys don't be concerned I am 100% good and kicking ass today! Drums are calling me! x

MagicMax profile image
MagicMax in reply toWant2Help

Hi want2help,

I did not get a chance to see your post before is was removed. Please send a copy to my e-mail at w_a_bergman@yahoo.com

Thank you

I'm lost with this one!

Yogibear profile image
Yogibear

Dear Moderator, I would like you to block or ban "Want2Help" from this website.

He has no place on here.

He is promoting his business and no doubt there is a charge involved in there somewhere. I cannot tolerate this it feels like he is trying to cash in on our condition and I would prefer if he could not read our very personal postings on here.

"If we want to avail of the service you are offering we will come to you through recommendation" and following discussion ON OUR FORUM WITH OUR GROUP.

I personally am really struggling at the moment the last thing I need to read when I log on in the morning is someone like you obviously promoting a product and who DOES NOT have PD.

Jbcourcy profile image
Jbcourcy

I think that Want2Help might be onto something and brought a new thought into light for me. Don't ban him from this site. If you don't agree with his ideas or opinions, move on and don't comment on them. But please don't ban him and prevent him from presenting his thoughts to other open minded parkies.

DeParkiePoet profile image
DeParkiePoet in reply toJbcourcy

I agree! I did not read the post in question, but unless it was really OFFENSIVE, I say we should be able to make up our own minds. Like everyone else, it's only my opinion...

But where do you draw the line? Who decides what is appropriate for me to read? I hope me!

PatV profile image
PatV

Esp if they don't have pd or are a caretaker.

sjannie profile image
sjannie in reply toPatV

i do not think it is correct tomove somebody from the side only because he has a different opinion about the disease. and if he was right? do not forget that untill today nobody knows exactly the reason why we become the disease!

Pete-1 profile image
Pete-1 in reply tosjannie

Anybody with a genuine solution to the PD problem would not be promoting their solution on this web site. They would probably have won a Nobel prize for services to medicine or whatever.They would be famous, at least they would be in PD circles. So, good people of "Healthunlocked", think about this, nobody can cure PD with an opinion.

in reply toPete-1

I Agree pete , i said this when the blog went out , see 1st reply

Al

Pete-1 profile image
Pete-1 in reply to

Oh yes, I see, so you did.

PatV profile image
PatV

I agree. But I think Health Unlocked has rules or guidelines about selling products, etc. I could be wrong. Anyway I believe I am the cure! :D

reverett123 profile image
reverett123

Boy, there is a lot of stuff on this thread! Can't do it justice so I will settle for the highlights.

1- Want2Help is, indeed trying to sell something and this is not the place to do it.

2- Want2Help is also correct in about 90% of what he is saying. Anyone who cannot see that we have a "special" relationship to stress needs to look again. And anyone who thinks that it is simply a matter of the loss of a few dopamine producing neurons in the substantia nigra should do so as well.

3- Five years ago I did a survey on another PD forum asking PWP to look back over their lives and give a numerical assessment of their stress levels in each of five periods beginning at birth. Ninety people responded and commented as well. I was astonished! As a group we have been through the mill! And the more stressful their lives had been directly reflected their present day symptoms.

pen1 profile image
pen1 in reply toreverett123

This is very interesting. I went through years of extremely intense stress before I developed early onset PD. It's tempting to leap to the conclusion that high stress causes PD to develop. However the above research doesn't really reveal anything about causation . It's reverse logic - we have the people with PD and then we look back and, hey presto, we find they all have high stress levels. BUT what this finding ignores is that there might be just as many people with equally high levels of stress who DON'T develop PD.

In order to scientifically support (we never 'prove' in science) a causal link between PD and stress you would have to conduct a (Very large) longitudinal study of apparently healthy individuals and rate their stress levels over a period of years. At the end of that study you would have a certain number of people who would have developed PD. You would then have to analyse whether thoSe with PD had a statistically significantly higher level oF stress in their lives than those without PD. My guesS is that this would be very dificult to show as stress plays a role in all illnesses and may simply tip us earlier into any illness we are predisposed to develop. A famous study similar to this was done in the sixties whre stress was shown to be a significant factor in causing heart disease in American males. It gave rise to the popular concept of Type A and Type B personalities and thier link with heart disease. It's since been shown to be very simplistic to the point of being almost meaningless.

My guess would be that you would probably find an association between stress levels and illness in general but that PD would not stand out. Incidentally there is definite evidence from many resreach studies that once you have PD stress makes it worse, However, since developing PD ten years ago my stress levels have been even higher than before- divorce, loss of house, career, finance, emotional support etc, but my PD has been far less aggressive in its advance than most people's.

This illustrates the very important point I used to drum into my students, that reserach can tell us only about trends in populations - it can't predict anything about individuals. E.g. a groups of women doing a literacy test will have a higher average score than a group of men. But that doesn't mean that i can assume that any man sitting in front of me is going to be worse at literacy tasks than the women sitting next to him. He might be a professor of literature and she might have never read a book in her life.

I really wish we taught the principles of science better in schools!

JanellenGrimaldi profile image
JanellenGrimaldi

This is so ridiculous. Want2Help just has an opinion, nothing else, and we can chose to read about it or not. He has not committed any crime here. He has not been abusive or malicious. He thinks he is onto something, and we have the choice to follow his line of thinking or to dismiss him as a fraud. He is entitled to his opinion. Why should he be censured?

maryalice profile image
maryalice in reply toJanellenGrimaldi

I agree totally. I don't think Want2Help did anything except offer his opinion and help. I thought that this was what this site was for, not to judge someone's motives for posting something contrary to the norm. We're all adults and entitled to make our own decision about a post. I believe it's important to stay open minded about different options to bring about healing, and I appreciate all of the information that I receive on this site even if I don't agree with it. If it doesn't interest me then I push the delete key or file it in the trash. If you don't agree with a post you have the same options.

JanellenGrimaldi profile image
JanellenGrimaldi in reply tomaryalice

Right on maryalice!! There is always the delete key option! ;-)

Babygirl profile image
Babygirl in reply toJanellenGrimaldi

I agree. The freedom of speech is still alive, and one has the right to exercise their ignorance or intelligence. If the one reading it does not have the wisdom or intelligence to disagree, dismiss it and keep it moving, then they have a problem. We have the freedom to dismiss. In life, one must learn how to agree to disagree, because there are too many differences of personalities and opinions. What offends one person may help another. So if is not abusive, malicious or criminal minded, then dismiss it.....get over yourself and keep it moving!

JanellenGrimaldi profile image
JanellenGrimaldi in reply toBabygirl

Right on Babygirl! :-D

DeParkiePoet profile image
DeParkiePoet in reply toJanellenGrimaldi

Right on! J!

If I want to learn about alternative therapies I am more then capable of researching those on my own and making those decisions also on my own. Yet I do not need someone showing up at my door trying to sell me something - not so long ago these type of people would have been be called snake oil salesmen. Whether or not what this gentleman (and I use this term loosely in this case) says is true is not the point at all, it is that he has no business doing his business here.

Apologies for a strongly worded note but I am annoyed with people feeling that they have some right or duty to tell me what is wrong with me or how to fix myself - I have PD but I am not an idiot nor incompetent.

WW.

parkie-Al profile image
parkie-Al

Snake - oil sales man , this guy is nouthing more than a scammer

Trixiedee profile image
Trixiedee

Is everything that isn't funded by Big Pharma (that are just looking to make huge profits) 'snake oil'? I take homeopathic remedies and supplements, have acupuncture, practise yoga and meditation. None of these approaches are scientific but they all help. Want2help practices EFT - do any of you know what that is before you dismiss it? It may not be scientific but it's another thing I have tried that has improved my wellbeing. And Bruce Lipton (who he mentioned) is a scientist although not part of the establishment. Have a look at his cv brucelipton.com/curriculum-... and some of his YouTube videos. He is certainly not a snake oil salesman.

in reply toTrixiedee

I as well have an excellent acupuncturist, do yoga and meditate; I also have an RMT and a chiropractor but I do not believe this is the point. Neither do I support only "Big Pharma" as you call it but rather I think everyone has a right to chose their own path to health and pharmaceuticals may or may not be a part of that plan. My point is that I do not need nor want someone "at my door" trying to sell me something, if I want to buy a service then I can go and research it myself; and make my own choice whether to buy or not. I do not feel this person was just offering an idea nor assistance but rather he was selling a service.

WW

Trixiedee profile image
Trixiedee

PS one of the rules of this forum is not to be abusive - I see a lot of abuse directed at this man who was nothing but polite, even in teh face of the insults thrown at him.

DeParkiePoet profile image
DeParkiePoet in reply toTrixiedee

Now I really want to read this posting!

Not what you're looking for?

You may also like...

What if?

I am new here and I am from Croatia so my english is not very well. Please, yuo have an experiance....
KokoLu profile image

Clinical severity in PD is determined by decline in cortical compensation

In Parkinson's disease, the cerebral cortex can take over tasks from a deeper part of the brain...
Esperanto profile image

new Blog

Hi guys and especially caregivers. I have written my first blog at beingnella.com. I would...
nellie58 profile image

IF YOU HAVE BEEN READING, BUT NOT POSTING, THIS IS FOR YOU.

Hi Everyone! This is joint post from MBAnderson (Marc) and Art/chartist. A few days ago someone...
MBAnderson profile image

Site Q: Blog vs Question -- what's the difference?

Since I started using this Parkinson's site about 2 months ago (typically several times a day),...
Paul_Dineen profile image

Moderation team

See all
CPT_Aleksandra profile image
CPT_AleksandraAdministrator
CPT_Anaya profile image
CPT_AnayaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.