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?! 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
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?! 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