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indigosd

Very helpful member
Joined
Jun 22, 2009
Messages
1,805
Reason
Lost a loved one
Diagnosis
07/2009
Country
oz
State
oz
City
RURAL
Most of you are aware of the unpleasantness in the forum that happened yesterday. I felt like someone had broken into my home and robbed me. I have to admit that it ruined my day to be subjected to such vile personal attacks by individuals that are not PALS or CALS. In all of my many months of being a registered member of this forum, I have NEVER had a ugly or a unkind word said to me from a PALS or a CALS. I have sang the praises of alsforums to anyone and everyone. I tell them that this forum is a absolute lifeline of love and support for those of us affected by this horrible disease. I have sent David and the moderators Thank you's for giving us the forum. I even started a thread called APPRECIATION. The experience of being subjected to such hate filled, ugly, personal insults under the guise of Christianity by a repeated posting abuser and her alter egos from the "Do I Have ALS" thread that has now infiltrated our other threads was a true eye opener. I personally do not go to the "Do I Have ALS" thread because it makes me angry and I know that I will not be compassionate to those individuals that are so clearly pyschotic. It makes me angry to see the ugly way that some of them speak to the PALS, CALS and Wright when they are given information and they keep doing repeated postings. It makes me angry when they whine about a "toe" or a "pinky" that doesn't bend. It makes me furious that our PALS take the time to type them a reply with their toes or a eyegazer and they have the audacity to be disrespectful to them! It makes me furious that there are at least 8 sticky notes at the beginning or that thread with a ton of information and NO ONE EVER seems to read it. It is a MONKEY of another color when they slither across to the forums that are so clearly for those of us that are living the horrors of this disease and begin wasting precious moments of the forum family. :evil:

I always read the mission statements because it is the framework for every business or organization. "A mission statement is a formal written statement of the purpose of a company or organization. The mission statement should guide the actions of the organization, spell out its overall goal, provide a sense of direction, and guide decision-making."


This is the mission statement for our forum;



The ALS forum is an all-volunteer driven resource provided free of charge to help anyone directly or indirectly affected by ALS and MND (also known as Lou Gehrig's disease).

The ALS and MND forums are here for individuals like yourself - people impacted by ALS and MND (motor neuron disease).

Our community consists of individuals working together; exchanging information, providing moral support, sharing information and tips - together we can learn to cope with ALS, make friends, and help one another.

We encourage you to join our support group to ask questions, get help with ALS, and to share experiences.

Remember, you're not alone, chat about your journey with people affected in the same way as you.

Together we provide hope, information, support, and friendship to people affected by ALS/MND. Mothers, daughters, brothers, sisters, patients, caregivers and friends alike.


ALL VOLUNTEER and FREE organization! How incredible is that in this world?! :D The word AFFECTED jumped out at me. The definiton as a adjective; attacked by disease. I read that statement to mean that this forum exists for people that are ATTACKED by the disease of ALS or MND. I do not see anywhere that it says for people that are worried they may have the disease or that we exist to reassure people that are obssessed with the disease. Do you?

I love this paragraph because it is soul true about this forum and the forum FAMILY.
"Our community consists of individuals working together; exchanging information, providing moral support, sharing information and tips - together we can learn to cope with ALS, make friends, and help one another. " Those words state explicity to support PALS and CALS. It does not say the people who are researching Dr. Giggle, those who imagine symptoms or those that are [God only knows why] Wanna be PALS.


I sent repeated notices of the abuse by Silverlining and her "friends" and all that was done was a "stop it or time out will be given"....This particular poster has been TROUBLE since day one for so many PALS and CALS and Wright. I suggest that you take the time to read how many people that she has abused. Individuals that behave with such wanton disrespect should be BANNED the first time. Where is the protection, the loyality and the support for the honest to goodness, registered PALS and CALS?

I personally would like to know what the policy is when someone is identified as abusive. There is no reason for these individuals to stop their disrespect or abuse because there is no consequence. I went over there [shuddering] today and looked around, read some of the posts and there seems to be a core group of posters that have become a gang so to speak and they are just so disrespectful, argumentative and mean. How is that tolerated?

Is there a way to not allow the individuals from "Do I have ALS" to post on the other threads? I got a nasty message on my personal wall and no way to delete it. I know of other PALS/CALS that have gotten ugly personal messages.

Who are the current Moderators? I know that Al is one [love big AL] but who is else is there?

Living with ALS is stressful enough without having to be attacked in the forum by individuals that have no reason to even be posting in the forum.

Hoping that there will be some answers and that yesterday's experience will never again be repeated. hugs, Kay Marie
 
Silverlining,
This is what I think,
1. You need to stay in the "Do I have ALS" thread IF you are not banned from the forum due to your repeated postings in various threads asking the same questions ad nauseum.
2. It is obvious that you have an obession with ALS. Someone with an OBSESSION about ALS wastes our time and energy.
3. You are very ignorant and immature.
4. It is obvious that you are in need of help but that help is beyond what the forum can offer.
5. Obviously since you are a single mother your testing for ALS is being covered under the taxes that we pay for Medicaid. Medicaid will also pay for a Mental Health evaluation.
6. I sincerely hope that all of your wishing for a ALS diagnosed will not give you the agony of the diagnosed.7. Get out there and pursue an education, a career, get a job so that you can take care of yourself and your children and enjoy your life.


Mayyybeeee, jus maybe, if ya didnt talk like a White Peice of Trash, You wouldnt be so upset. Seems to me, you're the only abuser here. Read your post! Learn to talk to people. You'd never make it on this side of town. You and your monkeys would be eaten alive!

Im heading back to my imaginary friends now.........(Calling out) Justme!? Shizzy?! Wait up!
 
Kay Marie, I would encourage you to put this all behind you and to not visit that forum. It clearly upsets you and that is not healthy. You don't need that agravation. Please focus on the positive. If you don't respond there is no way to get a response that might upset you.

As far as moderators - David and Al are currently the only ones.
 
Whooaah! I didnt see what Idinosed wrote to you but Hey! Whats up with that ? Those are some nasty comments made to SL.

Anywayz, as JoelC said, if you dont respond, it shouldnt affect you! No reason to respond if you know its only gonna cause trouble. Seems she was inocently asking a question then you riled her up. Just my 2cents,
 
Joel, I HAVE NEVER VISITED THAT FORUM! What forum do you think I am posting on? FYI she is now editing what I posted and reposting it!
 
Okay, don't scream at me.

Let it go or you will come across as bad as she is.

You have the ability to ignore it or fuel it. I hope you choose to let it go and move on. It is not worth your energy.
 
Kay Marie and a lot of us feel violated. Someone has come into our home and disrespected us. Its easy to say forgive and forget, but is it easy to do it? NO! HUGS Lori
 
I have been sad to see the harsh words being exchanged here lately. Kay Marie has been such a source of inspiration, hope and encouragement for me and so many others. Even when she speaks harshly, it is out of love, as she is defending and protecting our forum home.

I was one of the people who came to this site before I was diagnosed, when ALS had been mentioned but only as a possibility. I remember how scared and worried I was, and how friendly everyone was here who welcomed me. Even though I did get my dianosis later, I can still imagine how it might have gone differently. Maybe I would have had a neuropathy, or Lyme disease, something less serious. In that case I would have spent some time here and then moved on. But I would have left with good memories of this forum and the brave people battling this disease who were nevertheless generous with their time and energy and who had been kind to me when I was afraid.

I would like us to try to show this same kindness to everyone who comes to this site afraid they have ALS. Let them leave here with good memories of our community. I know it is not easy to be patient when so often the symptoms clearly do not justify the concern. But no one can know the burdens another person is carrying. I have noticed that we get a lot of mothers with young children, and others who are going through stressful periods of their lives. I can't help but think that showing compassion to these worried souls will do them good.

I'm not saying that we should coddle them or humor them when their beliefs are clearly off base. But I do think that we can encourage them to seek help in a positive way as easily as doing it with a more negative tone. Negativity begets negativity, and can darken the whole forum. I hope we can resolve to try to keep the feelings in mind of the people we are writing to, and to make our communication be a positive experience for everyone.
 
She changed what I wrote! I wrote #3 Name calling is ignorant and immature and she changed it to #3 You are ignorant and immature.
Hal, I do appreciate your words of support. Lori you too. Do you all think that is ok to have someone behaving like this and then support them? HONESTLY? Let them attack PALS and CALS and edit someone else's posts so that it is entirely different?
 
"Im heading back to my imaginary friends now.........(Calling out) Justme!? Shizzy?! Wait up!"

So, SL are your friends really imaginary?

I have been coming here for a year and a half now and I have never seen a more vile post as the one that the above quote is taken from (except for maybe all of your other recent ones). If some of us cared about your toe at one one time I doubt that there are many that do now. I know that I sure don't.

I am not going to say much more except, please go away and take your imaginary friends with you.
 
Hal,

AMEN! Couldnt have said it better myself!

You have (among so many others) always extended that "kindness" that will make me leave (one day) LOL with only good memories of this community. :grin:
 
Kay Marie,
Simmer down girl! I think you need to stay on the yellow brick road and stay focused to why you are here. Yes ALS is very personal so why do you let someone who does not have any association to als as a pals or cals rattle you so much. This is agree to disagree situation, there are no winners or losers. All this is doing is drawing a line in the sand and seeing who chooses your or her side. There is no sides the adults on this forum have involved themselves in a disagreement between the two of you. This has gone from disagreement to personal attack of who each of you are. I hate seeing posts go in this direction, you have made you complaint to the moderators they will decide what they need to do based on their set of guidlines. They who yell loudest are seldom heard. Please go back to the lady who gives such positive and encouraging advice. When you read a post not your to liking let it go and move on to another we all have stressors in our personal lives why add stress for someone you don't even know.

Dorothy will prevail with the support of friends and the wicked witch will melt away when we let her.
Big hugs Ruby Red
Judy
 
Barry, I just fowarded you a message from SL.

She left here VERY UPSET! Indigosd? She asked me to send Barry a PM because she feels shes been ganged up on. She said she wrote here in confidence that she was indeed a single mom, who had gone without food for herself & her children & your comment really hurt her.

She wont be back. For your info, I met her on this forum & shes had a really tuff time this past year. She lost her mom, dad & brother tragically, just recently & is alone.

Perhaps her toe seems like a joke to you but I can tell you from our previous conversations, its not to her.

Sometimes words can be our worst weapon,

Take care
 
OH WOW! I am sorry, but I CANNOT believe that "Sybil" and her alters have not been kicked off of here! Joel, I know it would be hard to prove multiple personality disorder, but the "alter ego" at the very least named "Silver Lining" and the 70 year old alter if she reappears needs to get the boot! She, well those "alters" keep attacking our Kay Marie. How can you stand for that? The other "alters" seem more tame. If each personality remains their own personality then we shouldn't have anymore problems. I know a lot of you have no idea what I am talking about, but it is so clear. I would go on and on about how SL says she is going to be some big shot lawyer in NYC and can't even spell, or how she slams Kay Marie that she would never make it on "her side of town". But she is clearly ill. Her side of town should be in Bellevue Hospital. (and if that ego is actually from there, she will know hopefully where that is - if not I will map out the directions - or better yet let me have that "egos" address, the people to meet her there would be dressed in white.)
Other than that, Hal hun, this started over in the "Do I have ALS" topic, where it belonged. I am glad you and others have gone there in the beginning and gotten the support you needed before your diagnosis. As you know, we welcome everyone. Our forum as stated above is for people with ALS, PLS and MND and those caring for a person who does. It is for information, support and making friends who all share in this nightmare of a disease. But the line needs to be drawn, when people infiltrate other topics even AFTER they had responses and support from the "Do I have ALS" topic. Perhaps that is what the moderators could work on. If you see someone repeatedly posting the same questions in the wrong topic, then just "move them" back to the correct topic. Then people would not get so upset over things like the same repeated question over a damn TOE! We would leave it to the kind people who go over to the "Do I have ALS" topic.
That all said, Kay Marie the "alters" are fixed on you, so sorry hun. Just ignore them. Keep the monkey's on protective alert, and my bear claws are on the ready. Hopefully this will get resolved. I PERSONALLY will NOT tolerate anyone, sick or not, slamming any of my friends here!
Blubear
 
If I still had moderator rights I would have dealt with this a long time ago. I do not think this should have been left to go this far. But since there is nothing I could do about it the best advice I can give is to ignore it and it will eventually go away! I am sorry that is not acceptable to you but what more can be done? Al has had a very bad week and does not need to have to deal with this right now so please let it go and ignore what has happened. Is that the right thing to do? No, but in light of the present situation I see no alternative.

I hope you can understand what I am saying and respect it for Al's sake. Thank you!
 
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