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Please Read - Intro and Guidelines for Family Member / Caregiver Forum


#1

This is a a Support and Discussion forum for people who are family members or caregivers of someone who has have been diagnosed with schizophrenia, or who might have schizophrenia (or who have a closely related disorder or symptoms, or who suffer from hearing voices).

Site User Guidelines:

Our web community actively encourages the following values:

Respect and Compassion

In order to encourage respect and compassion in our web community, we ask that community members refrain from telling others how they should live their lives (e.g., “get rid of that person” or “get off that medication”). We believe that feedback or advice is most helpful if it is offered as a suggestion or through an example of a personal experience. This teaching by personal example is much more respectful to others than direct advice giving.

Trust

We want our web community to be a gathering place for sincere, helpful people whose wisdom you can trust. That is why our staff will routinely remove messages that promote false claims of miraculous cures or other untruths. Since trust is so important, we do not allow members posting with 2 separate identities (posing as 2 different individuals). Any member doing this will be banned from our community.

Specific Guidelines

• No Posts Concerning Imminent Suicide

This support community is an inappropriate resource for those who are imminently at risk of harming themselves or others. These are medical emergencies that require immediate psychiatric care from trained professionals.

Unfortunately, some individuals are chronically suicidal and repeatedly post “farewell” suicide notes to our community. We appreciate that such suicidal posts are a “cry for help”, but these posts about imminent suicide are extremely upsetting for our other members.

Since our members are totally anonymous, we lack the ability to locate the member who posts a suicidal “farewell” letter. Thus the posting of a “farewell” suicide note serves no purpose, other than to seriously upset our entire community.

• Ethical Behavior

Our community believes in “The Golden Rule” (that we should treat others the way we want them to treat us). Thus members writing to condone unethical behavior (e.g., genocide, murder, violence, hatred) will be banned from our community.

• Anonymity

Our members join our community to share with other people living with similar illnesses. Because many of our forums are public, we must keep our identities completely anonymous. In that way, we can discuss the role our significant others play in our lives without publicly embarrassing them. Likewise, we keep anonymous so that teachers, employers, fellow students or coworkers can not “Google” and identify our community posts. To protect your anonymity, members should not communicate with each other off this site. We ask that members not exchange phone numbers or meet in person. Our experience is that these ‘offsite’ relationships can be disastrous (especially when one member becomes pathologically dependent or manipulative towards the other). Basically - be careful. If you ever meet anyone offline - be sure that a friend or family member has full information about the person you are meeting - phone number, email address, and information like that.

• Friendship, Not Romance

This is not a social networking website to meet new romantic partners. In fact, we strongly caution against romances between community members. We ask that member-to-member romantic messages and/or lover’s quarrels not be posted. We believe that it is an invasion of privacy to have our community read member-to-member love letters. There are web sites that focus on dating for the mentally ill - such as http://www.nolongerlonely.com/73 that we encourage you to visit if you are looking for romance.

• Members Preying On Other Members

Certain predatory individuals join self-help groups to prey on vulnerable members. These individuals initially “sound good”. They may even read self-help books to improve their false public image of being a compassionate, understanding community member. Their real goal is to meet other members in person to prey on their emotional vulnerabilities in order to get status, money or sex.

To prevent this, we ask that you never reveal your real identity or meet with another member in person. Psychiatrically, it is extremely risky to meet other members in person for the purpose of romance.

• Sobriety and Substance Abuse

We ask that you only post when you are not under the influence of alcohol or drugs.

Additionally, discussions of drug and alcohol abuse that is not recovery oriented, is not allowed in these forums. Research shows that drug and alcohol abuse greatly reduce people’s ability to recover from mental illness and we are a recovery-oriented website.

• Democracy

Our community is simply a group of friends giving and getting feedback from each other. We try to run our site democratically. We do have an administrative staff, but they are often busy elsewhere with their duties.

• Our Community Guidelines

Our Community Guidelines are fairly enforced by our administrative staff. Unfortunately, our administrators don’t have the time to read every post. Thus our administrators rely on our members to direct them to those posts which need administrative attention.

• Suggestion, Not Criticism

Our members ask first if their advice is wanted before giving it to another member. This way, members can decide when they are ready to hear advice and feedback. We have learned that feedback or advice is most helpful if it is offered as a suggestion or through an example of a personal experience, but not as a criticism.

• Drama

Our administrative staff will actively discourage “drama” in our community. Please trust our administrator’s judgment in this regard.

• Religious Discussions

Many of our community members have gained great strength from their religious faith while coping with mental illness. Since our community is composed of members of many different faiths; all we ask is that members respect each other’s religions and not try to argue with or convert nonbelievers to their faith. If religion worked for you - thats great - but please don’t force it on other people. If you continually are promoting your religion in your posts - we will ask that you stop and then we will ban you.

• The Debate About Abortion

Many of our members have strong religious convictions concerning abortion. Thus we ask that our members respect each other’s differing points of view regarding abortion. Specifically, we ask that members not debate the topic of abortion in our communities.

• Banned Activities

It is our policy to warn anyone showing flagrant disrespect e.g., foul language, and to delete their disrespectful posting. If this disrespect persists, the member is banned from the community.

Likewise, we will warn anyone showing religious intolerance , and delete their intolerant posting. If this religious intolerance persists, the member is banned from the community.

No advertisements (for research subjects, support for special projects, or commercial enterprises), or internet links to web sites promoting these activities are allowed. If someone has a research project that they want to publicize - then email the administrator at szwebmaster at yahoo dot com - and if the posting is accepted, one of the moderators will post the message.

Unfortunately, we do not allow links to other, non-English speaking websites (because we can’t determine their content).

• Keeping “On Topic”

We have many forums; each forum discusses a specific topic. In that way, members can join discussions that are specifically relevant to their needs. Sometimes a member accidentally posts something that would be better located in another forum. Our administrative staff will then transfer that post to the more appropriate forum.

We Are Not A Substitute For Professional Care

We encourage you to see your psychiatrist or psychologist or other mental health care person for help if you have having a challenging time.
Due to the extremely large number of users and messages posted - we do not have the moderator “manpower” and “womanpower” to tell every person why their message has been deleted - but it it is, its because one of the moderators felt it violated the spirit or the terms of the guidelines below. We hope we don’t have to do it very frequently - but occasionally we do have to delete messages, and on rare occasion ban the repeat offenders. The administrators tell me that so far we have only banned a few users - of the tens of thousands of visitors - and it is only when someone repeatedly violates the rules and shows lack of respect for the community.

No Swearing
Please refrain from using any vulgar language that would offend someone else. Shortcuts to vulgar language does not constitute no swearing.

No Personal Insults/Abuse
This site is provided to you for free, and you are free to disagree with other posters, but if you stoop to personal abuse or attacks, your post(s) will be deleted. If you ARE insulted then report the post…PLEASE do NOT retaliate. If you do retaliate you are no better then the abuser and you too will treated as an abuser as stated above. Retaliation by anyone against another is in no way showing any respect for yourself, the person who offended you, nor the rest of the readers of the forums.

No Repeat Posts
If no-one answers your question, bump it rather than posting it again and please don’t post the same question in every forum, just the most appropriate one. Reading the same thing over and over again is the best way to annoy people and the worst way to get answers.

No Illegal Suggestions
Please no pointers, how-tos, advocating etc of any illegal activity, including (but not restricted to) getting illegal drugs, telling people do do illegal activities, etc. these are our rules, but there are laws and punishment in ALL countries regarding this issue.

What is PR0N?
Please, no pornographic material nor pointers to it. For those that do not know what PR0N stands for, switch the R and 0 around and you will understand.

Spam/Pimping
This refers to the use of this site as a redirector or gateway to another site for the purpose of collecting click benefits. This also includes, but is not limited to, the following: Sites/Schemes where the affiliate obscures or misleads members and The use of Private Messages, email, signatures, and forum posts, via this forum, where the sole purpose is to solicit membership. (i.e. Usage of member lists and publically accessible personal information contained within these forums). Although there are times when a link to another site is necessary for helping or answering a question, this site reserves the right to determine what is and is not SPAM or PIMPING.


#2

Very short question…is it appropriate to discuss the meds of my wife and the reduction of the meds…as well as the outcomes?


#3

Yes - generally doctors / clinicians recommend as low a possible level of medications now to minimize side effects.

The problem and challenge is that its always a balance because research has shown also that lower medications increase risk of relapse. And when a person relapses the old medication may not work any longer, and it may be very hard to even get the person back on medication, plus active psychosis harms the brain such that it gets harder to get the person back to the same level functioning that they were before.


#4

how do I read the questions and replies? nothing happens when I click the question. thanks
new user


#5

Strange - you should be able to just click on the text of the discussion topic and it will show you the entire thread of messages, then you can respond by going down to the bottom and click on the “reply” button.

If that isn’t working you might have an old web browser on your computer and I recommend you download the newest version of Google Chrome here:

https://www.google.com/chrome/browser/desktop/


#6

I have never been able to SEE the responses to the text written quite some time ago. However I believe did get a reply from SZ Admin. but still have NEVER been able to figure out HOW to view the replies -nor, how to locate the text I wrote (I believe this happened twice??) HELP!


#7

Why is Sarcosine advertisement so prominent on this website? Is this website sponsored by Sarcosine? How is Sarcosine different from Monotonic Gold/Etherium or other products on the market?


#8

Hi - the BrainVitaminz.com advertisement for sarcosine is just one of our advertisers on this site - it helps pay for the costs of running the web site.

Sarcosine is a special type of glycine that has some reasonable amount of good research behind it as a compound that can help people with negative symptoms of schizophrenia - which no other compound or drug has been shown to do in any significant way - and that is why we think its not a bad type of product to have advertised here. To learn more about sarcosine - check out these web pages:

http://www.schizophrenia.com/glycinetreat.htm


#9

Pls can you tell me how to post and where to generally reply to people I have just joined nd am a carer but couldn’t see how to get started!sorry on wrong thread


#10

Just click on the “New Topic” in the upper right corner at the home page if you want to start a new discussion. Just click on the “Reply” button at the bottom right corner of anyone’s post if you want to “reply” to that post. Let me know if you have any problems.

Here is the “home page” of the family discussions:


#11

Your guidelines are clear, reasonable, and necessary. However, you obviously do not monitor and delete comments that do not meet the guidelines. Look at the the comments under my post, “You Can’t Do This Alone”. There is an obvious predator who has violated several of your rules, yet his comments continue to appear. Based on this I will NOT post on this web site, and I would recommend that others do the same, unless and until safeguards are put in place to guard against this type of predatory behavior. Ethically, you should not create a web site and not be held responsible and accountable for hateful, harmful, despicable and inappropriate comments you permit to be published. Who are the professionals within your organization that support this web site? Do they have a clue of what is going on? I am new to this web site, but from what I have seen so far, there is potentially much more harm, than good, that can come from your forums. If you cannot offer better control over your forums, I suggest you shut them down.


#12

Overly sensitive…


#13

Welcome stan0542,

I’m not a moderator, just a regular member with a shorter membership than many here. What I have observed is that this is a place of great pain and great loss. Lots of people here suffer emotional pain on a level that most of the world seems to be privileged, just by chance, to avoid.

I don’t know our moderators, but I can imagine how difficult their jobs are - if this is the only place for us- surely they must moderate our pain with reason. How difficult it must be to reasonably moderate unreasonable pain and heartache.

I do know, solely from the comments and desperate sharing here, that the heart beneath this forum is strong. It has to be because some of the wonderful people who exist here, often have to keep their own hearts beating for the others who are in so much pain they can’t stand the beat of their own heart today. And maybe tomorrow, their hearts will beat for others dealing with a difficult time.


#14

Hi Stan.

People on this forum are in all stages of grief. It’s not predatory behavior. It’s extreme anger, a stage of this grief. We all have felt it and we all will re-experience it, since this is a life-long illness.

I’m sorry for your pain and anger and I’m sorry for the pain and anger of everyone on this forum.

Peace to you. Peace to us all.


#15

For some, sarcosine may help with motivation.


#16

Where may I find an in-person support group locator for families and caregivers?


#17

OK, then just delete the guidelines, because they are useless and not followed. Instead of guidelines just have the statement: “Don’t be offended, or feel hurt and pain if someone responds to your comments with inappropriate, crude, bizarre, hateful, or hurtful responses. If you feel offended by such comments, perhaps you are just too sensitive.”


#18

If you don’t like what someone said, block them, don’t criticize the forum admin.


#19

Contact your local NAMI affiliate. You might have to work it a bit to find them. Local NAMIs host support groups for family members of people with mental illness. Sometimes one of the best things you can do is sit down with a group of people who know exactly where you are coming from - people who don’t have any experience with mi are just clueless to the sort of things we have in our lives.


#20

I’m sorry stan0542, this business just never gets easy. One of the teachers from my FtF class lost her amazing son this summer. She is devastated. She had worked hard to get him on Clozapine and his recovery was inspirational. Her son gave peer talks for NAMI and taught Peer to Peer classes. His life was dedicated to his recovery and helping others find their way to recovery.

He became so well, he began doing many things, even flying on planes to help remote NAMI groups hold Peer to Peer. She lost him when he passed away on a camping trip. He was kayaking when he drowned.

She can’t believe how unfair life is. She got him back through recovery and lost him forever. I am sorry for your loss, I’m sorry for all of us who have to deal with this horrible illness.