Interesting article

[mlb]

This is dated 13th February 2007. Please read carefully - particularly symptoms as many of you here have concerns over.

Anna

[David]

The article was 4 years old; the date you saw was "today's date"

[mlb]

Thanks David. It is nice of you to point out.

Still I think it was worthy of note especially for the newly diagnosed. Many PALS are unable to search for hours through thousands of old posts dating back to 2003 to find information. To "re-hash" is not a bad thing sometimes.

By the way where is the article? Have you or Al deleted it?

[Al]

Not me. I'm not sure which article it was. AL.

[mlb]

Strange that it disappeared. I am surprised that posts are being editied or deleted without the author's notification. There was another person's post as well in response to the article. That too has gone. Can you explain what happened?

Anna

[Al]

I'll check with David. AL.

[patricia1]

what article where is it.:???: :???:

[JACKIEMAX]

:mrgreen: hi. i, too, would like to read any article that would or could be helpful for those of us who are either caregivers or with als themselves. i come to this forum every day looking for any information i can find. al has been wonderful to answer all my questions and has been so helpful.

i would like to chat via e-mail with any of the caregivers who are willing to share some time and information with me.

jackie

[mlb]

Hi Al,

It is worrying that an article that provides information that could be relevant to some people on this forum can disappear this way.

If this forum is for PALS and CALS to share lament and progression of symptoms only, I will have no part of it.

To try and sell "cures" to vulnerable, desperate people for profit is despicable but to prevent these same people from accessing information that might assist them (even if mentally) is criminal. This is precisely the reason why they are on your Forum and why my brother asked me to join: to gather and share information.

Obviously, there is no free speach here. Big brother is watching and policing every single letter written even before it is posted. This paragraph from David on the "Eric" thread disturbed me. It is self-explanatory.

Update/Edit: This message worked for now, two of our "members" were posting a reply but must have decided against it; they didn't complete their replies and have logged out of the forum. A small victory.

Anna

[liz]

Anna -

I'm not quite sure why the jump to the conclusion that you've been censored. I've seen one or two posts dropped which were so benign that I concluded it was accidental. Why don't you just post your article again?

There's tons of articles and links posted on this forum which I've found very informative. And lots of threads focus on coping, problem solving, and getting on with life. So I have to disagree with your characterization of this forum as just a place for people to "share lament ....." Sure some people here do that; but, if that's not what you're here for you can just skip those threads.

Liz

PS - Love your jokes on the Cheering People Up thread. :)

[Al]

No one reads a message until it is posted. I have not been able to be here since sat. night so that anything posted hasn't been looked at except by members. David is the site owner and Administrator and I Moderate. I usually do no deleting and if anyone has a problem please email David. He will be glad to respond. Free speech is welcome here and to say otherwise is very unfair but I and David will not allow the site to be run or directed by malcontents and scammers and this is what you get at some of the other sites. We do things differently here. It's the Canadian way. We're a little different.
AL.

[mlb]

Hi Liz,

It was David's quote on the Eric site which I have highlighted in my post that caused concern. I have nothing that I say on these pages that is worthy of censure, I can assure you. My motive here is to lend a hand as much as I can by doing searches and sharing information that will hopefully empower and strengthen ones resolve to fight back and keep faith alive.

Thanks for your comment re. the jokes. I am glad you enjoy them.

Anna

[ahpeditor]

Al,
Goodness, you sure are full of yourself. National pride is one thing, but you're carrying it a little too far. Please spare us the "I know better than you, I'm canadian" routine.

You can't have it both ways. Either you censor or you don't. I don't think mlb's link had anything to do with scamming anyone. I also don't think she's a malcontent. So why was the original link deleted?

Joel

[Al]

As I have said before if you'd care to read again. I did not delete it. Possibly David did and if you have a problem with the site he's the go to guy. It's his site. We do censor for various reasons explained in other posts. I think we have discussed this issue between ourselves before as well. As for the Canadian flag waving I would say we have something to be proud of here. Universal health care, low crime good climate in some areas and some of the friendliest people on earth. Come on up and see us sometime. You just might like it here. I'd never say the Americans shouldn't be patriotic. Even if I was within my rights to do so. I'm not confrontational by nature. I guess you might be. Type A personality I would guess.
AL.

[Al]

And by the way I did not mean to imply that mlb was a malcontent. Her link just had old news in it and I'm sure if someone did a search it could have been found. So it was not censoring per se but a housekeeping measure. Geesh hope spring gets here soon. I think everyone's getting cabin fever and getting testy. Also checked with David and it was he that did the dastardly deed of removing it.
AL.

[David]

I deleted the post - to be harsh, yes ofcourse we delete and censor posts, if you find issue with that, you shouldn't use the website.

If we didn't, every forum thread would have links to porn sites, fake medical news, alternative scam therapies, and every other unrelated product and service you can think of.

[mlb]

David,

The post in question was taken from the ALS Association site. Whether it was old or not was irrelevant. The date the article was posted on the Association's site was the date I mentioned (inadvertently) which was the 13/2/07. For it to appear on the ALS Association's site bearing this date, made it even more interesting and relevant reading.

David, I think you are trying to discredit me and publicly sully my name. I have nothing to sell here or profit from anything on this forum. My motives are entirely honourable. I would prefer that you stop attacking my credibility.

Anna

[ahpeditor]

Oh, you can rest assured that I will not continue to visit this site. I've tried to find support for my wife and my needs here and except for a few members, they've been shot down within seconds. Some "Support Group."

Your moderator doesn't understand that a viewpoint other than his may still be viable to others. I don't know how many times your moderator has added a comment after mine that implies that he removes links to scammers websites, even though I've never posted a link to any site. Several times I've had the same feeling that mlb expressed -- he's trying to slander me -- guilt be association, so to speak. I have no interest in becoming another "Grampal" sycophant. I have my own opinions, and in the U.S. at least, you're free to express them.

Thanks David for admitting the obvious -- censorship is alive and well on the ALSforums.

Joel

[Al]

I've said it before. You can't please all the people all the time. There is not one person among us that can say that they have been liked by every person they ever met, or liked every person "they've" met. Obviously there a couple of people that are using the forum that don't like me or my ideas. That doesn't diminish me as a person and I'm not about to change my ways for the sake of a couple of detractors. I'll file it under Hmmm: but will try to not let it bother me. If that sounds pompous or callous then somebody has a problem and I don't really think it is me. Being in the literary business can fuel feelings of paranoia about censorship and for this we are sorry. So let's drop this matter. The intent of the original post has been lost and this is starting to get into mud slinging. Not one of us really needs that.
AL.

[MtPockets]

AL and David, you have my utmost respect and confidence. Anyone who has been here for awhile realizes that you are trying to help and that is your main motivation in everything you do. Thank you both for doing such a great job. It is greatly appreciated by the vast majority of your members on the forum.

I know there are times when each of us members might get caught up in a subject that we personally feel very strongly about and maybe get off the main purpose of this forum, but consider this people: How would like to spend your day reading EVERY post that is on here? That takes dedication, and a love for people that many of us don't have the time, or want to give the time to do.

Consider this before you criticize the moderator. It's basically a thankless job, with no money. How many of you would take on such a burden and put up with the nasty things that are said about you for nothing in return? Get the chip off your shoulder and show a little respect for the dedication that is being shown.

Capt AL :sad:

[CindyM]

Sorry you decided to leave us Joel. I was always hoping your wife would decide to join us as she will indeed need support as her condition deteriorates. Hopefully you and she can find support and information on how to manage her disease through some other venue. Best of luck. Cindy

[patricia1]

sorry to hear we now lost anna and Joel That too bad if we have a problem with someone on this site we should send a private message. And try and iron out the problem. I hate to see anyone leave pat:sad:

[patricia1]

Has anyone heard of using injections of human growth hormone I heard its being use in Italy for ALS Pat

[Al]

Hi Pat. Is that the one that patients sued the Government to be allowed to be used? I believe it is experimental if it is the same one.
AL.

[patricia1]

AL I KNOW Sylvester Salone the actor was caught with it in his car 65 units for injection he takes then to define his muscle and look younger So even if I dont get cured Ill look good I am only kidding Its very expensive But if it works I would try it .Ill run it by my neuro I am sure if it works we would be hearing about it Pat