Who and what is HDAC?

If you look at the logo at the top left corner of the page you'll find the text "For HD Families - By HD Families".

That is what HDAC is about. The key phrase is "By HD Families". Before we had the message board "HD Families" was limited to Cristy, Marsha and I. Afterwards our family grew as the message board was "adopted" by other HD family members. There is no staff at HDAC.

Over time our family has changed and we?ve been joined by kindred spirits. Although we don?t always agree on specific details, we agree on the tone and the type of support HDAC is to offer. Those who step up to the plate to help maintain an appropriate balance between educational dialog and destructive dialog are greatly appreciated but will, more often than not, suffer a level of personal criticism that is sometimes hard to handle. Some days it can be brushed off ? other days the sword is unsheathed. I think Eric is probably the only person we?ve actually asked to help out with the message board because he can take a beating and keep on ticking.

What?s the purpose of the message board?

The HDAC message board is like a 24 hour a day ? 7 days a week HD support meeting. We entertained the idea of splitting the board into one for HD patients and one for Caregivers but that never seemed to be popular with the vocal participants here. So we have a combined support group.

I like to think of each HD family member as going through stages of growth and during one or more of those stages I hope that HDAC provides help in navigating through that stage. I don?t believe that HDAC can be useful to everyone, nor can it be useful to any single person throughout their HD experience.

I hope everyone here takes advantage of at least one opportunity to help someone here. It's a very good feeling to have actually encouraged and helped someone past a hurdle.

What role does moderation have at HDAC?

If we adopt the analogy of the message board being a ?family? and participants being adopted ? whenever a new family member is adopted the family benefits from the love and support the person offers. But the family also gets all of the baggage that comes along with the person, and that can include anger, cynicism, hatred, depression, pride and jealousy. Sometimes HDAC feels like a real HD family in a crisis and that?s when moderation kicks in.

After years of experience with trying various degrees of moderation I think we?ve found the sweet spot ? at least for us. I?ve learned that some people despise ANY level of moderation and others want everyone who disagrees with them to be banned.

There are no professional therapists here that consider the best way to engage in a dialogue that is the least offensive to all parties involved. We post what?s on our mind at the time and when we do that there will always be someone who is offended. I?ve been offended, Marsha has been offended, Eric, Barb, Peter, Brett, Dusty, etc. We?re all going to be offended at one time or another. It?s how we respond to an offensive comment that reveals our character ? or at least our character at that particular time. I confess to a few posts that I regret having clicked on the submit button.

So when the dialogue breaks down and a thread morphs into personal attacks, nastiness, cruelty, etc, then the thread will be closed by the Admin (me).

Many people have fussed at me about not being fair and balanced about deleting posts, so let me take this opportunity to be perfectly clear. (1) I try to make allowances for stressed out caregivers and HD patients. If I delete your post and not someone else?s then I think it?s because you don?t need medication and you are easily capable of being helpful instead of being destructive. For those we know are on medication or in need of medication we often work ?off the message board? to help them participate in building a more positive experience. Deleting particular posts in this situation might be counter-productive. It?s one of the things we do that take a LOT of time and effort but we think it?s worth it ? despite the negative feedback we receive from a few. (2) I don?t live on this message board ? so I will miss a few posts that I might otherwise have deleted. I make mistakes ? get over it. (3) [deleted by the admin]

I hope this helps clarify things for our new site visitors.

You're friendly neighborhood Admin,
Steve

Yes

Hello, I am "fairly" new. I want to say how much I appreciate you and everyone else who participates in this forum. Reading all of the "threads" and comments have been so helpful. It makes me feel understood and that I am not alone. The forumn has helped me validate my feelings. I want to say THANK YOU!

Paula

I think the best thing about this site is that people can speak their minds. We are all in one way or another affected by HD. We get stressed about it and other things tend to pile on top of it. It would be great if we could all appreciate that, however, sometimes the stress is so great that we don't think about it until it is too late and things get blown out of proportion.

Personally, I have read somethings on here that have made me think about posting a "nasty" message, but then realize this is just a place that people come to vent when they have had a bad day in addition to finding out information about HD. As Steve says "get over it". People make mistakes.

We are all "family" here...maybe not a traditional one, but we are.

Thank you to EVERYONE who plays a part in making this site what it is! Without you, I don't know where I will be.

On a personal note, my husband goes for his annual checkup on Friday. I don't know what is going to happen. This is the first time I don't think the report will be good. The doctor will probably put him off work for safety issues....Please wish us luck!

Today is Labor Day and I say "THANKS" to you, Steve (as well as Marsha) for what I view as a labor of love in maintaining this site. It's obviously a lot of work and many times a huge headache. There are those who like to rip walls down instead of building relationship "infastructure". But I hope you will stand strong and be here for those of us who are very grateful that you make this place possible.
This web-site is a gem. As you said Steve, it's a family... and like the old saying "warts and all" I feel so glad to know everyone here and share in their perspectives (sorrows, joys, frustrations, good times and foul). We need to remember that none of us is perfect like any family! There are those whose posts I usually adore, but I may not always agree with. The big picture is I feel I've learned so much and I really appreciate this place. Steve, your message was just perfect! I hope you and Marsha and everyone else had a nice Labor Day.
PS
Sally, good luck with your husband's check-up.



Edited 1 time(s). Last edit at 09/06/2010 09:33PM by eve.