Posted by Dave Emond (205.188.199.183) on August 22, 2001 at 11:11:53:
In Reply to: Dr. Kudrow posted by MaryD on August 22, 2001 at 03:24:33:
Hi Mary,
Thanks for letting us know Dr. Kudrow's thoughts.
I can't help but wonder, did he actually say he didn't like the OUCH site? The only thing I think it's missing is banner stating the site is constantly under construction and updates. It is slowly forming as does OUCH as an organization.
I too think the bumper stickers should be "clusterheadaches.org." This is where I tell my doctor's, friends, and coworkers to go for information.
CH.com is a whole different area. I suspect those who find the message board negative, haven't read through the entry pages. They clearly, if one takes time to read them, state that the message board is a mixture of all types of different posts. To censor the message board, in my opinion would be a big mistake. I do believe it should only be for those who suffer from or are supporters of CH, but not every post has to mention CH. Our message board is more of a therapy than a clinic. If anyone comes straight to the mb without having read what it's all about, it would be like walking into a strangers house during a family get together and wondering why we don't understand what everyone is talking about.
We need this message board as OUR family get together. Clusterheads have other issues to deal with besides physical pain. We now have a family we can come to and talk about these other issues, knowing that they understand. Can we do that with our relatives? Our coworkers or friends? Sadly no. They may be sympathetic, but they won't REALLY understand. So, like any family sitting around talking to each other, should we stop someone from telling a joke just because it doesn't involve the family name. Would we stop a fellow family member from showing some pictures of a sunset? Not allow them to vent some built up anger or depression? Of course not, we're a family with a common bond. Censor the board and we're left with nothing but the same old questions and answers day in and day out. Soon there would be no one left. Sure we have strangers wander in our house, if they support and understand, they are welcome with open arms. If they don't belong and try to disrupt and cause problems, they are quickly shown the door. Maybe they just ended up at the wrong address for their party, we will try to find them the correct address.
If a doctor wants to visit the board, great! But, they should understand we are just people, and are going to talk like people. We're not doctors with answers and don't pretend to be.
I could tell a doctor this however, modern medicine hasn't come close to the medicine found on this board. It comes in the form of understanding, friendships, disbutes, rants, venting, support, love, and laughter. Not going to find this in a prescription, but in a family.
We don't need censorship or a moderater. I agree we could as individuals moderate ourselves now and then, but not by an outsider who doesn't know what our daily lives of going through this hell is like.
I appreciate it when a doctor takes the time to visit, wish there were more. But, before the critque is made, the book has to be read and comprehended. We the sufferers of CH have written this book, and as Todd said, it is most likely set in stone. It is our board, we are the authors and should be allowed to take it wherever we choose.
You are still a member of this family and always will be. Maybe if you explained to Dr. Kudrow the difference between this message board, the guest book, the info links and OUCH, he may take a different view?
Just my (long winded) opinion :)
Dave