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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hey Chuck
        
(Message started by: DannyV on Apr 16^th, 2007, 3:16pm)

Title: Hey Chuck
Post by DannyV on Apr 16^th, 2007, 3:16pm

I had seen the clip of your attack before on the clusterbusters site. Today, for the first time, I saw the additional available footage of the clusterheads documentary.
I don't know what to say man. First of all thank you for putting yourself out there so that perhaps people will have some type of incling as to what it means to have this.
I watched you do your "dance"[Im not nuts about that term, way too cute] and it is exactly like mine. I don't pace and bang my head on the walls like some. When I am crippled, I am crippled. Writhing around ,usually on the floor, pulling the hair on my right side so hard,as if to raise up my scalp and make more room for the pain. I know you know what I mean. You seem to have held onto your hair pretty good. [Pun,yes]There goes my theory about why I am receeding so rapidly on the right. I am lucky that Imitrex helps. It sucks that you can't use it. You've got to be the toughest m*th*rf**k*r on the face of the earth.
Love from Boston

Title: Re: Hey Chuck
Post by ClusterChuck on Apr 16^th, 2007, 6:37pm

on 04/16/07 at 15:16:54, DannyV wrote:

You've got to be the toughest m*th*rf**k*r on the face of the earth.

Nope. I am not any different than any other clusterhead. We all do what we need to do. It is just one small part of who I am.

I am just glad, that this clip has helped (or at least I hope it has).

There have been MANY more, that have and are doing much more than me, to help us. My small input, is just more visible. How about my biggest hero, the one that without, I never would have been able to allow myself to be filmed? DJ ... Deej ... Zipperhead ... Now THERE is a hero!!

Chuck

Title: Re: Hey Chuck
Post by inyoureye on Apr 16^th, 2007, 7:08pm

Nah, I saw that too, you may think that is you at your weakest but we see someone at their strongest. You are still here, someone weak might not be. Support is huge, I personally can't be held like that during the peak points, I get claustrophobic (only during a hit) But whoever DJ is, he obviously helps you as you've helped others so kudos to both of you.

Can I get an AMEN?

Props from Providence

Title: Re: Hey Chuck
Post by Linda_Howell on Apr 16^th, 2007, 9:18pm

Quote:

But whoever DJ is,

::) When you first came in here did you read everything in the "new Visitors site" , or the opening home page?

DJ is the webmaster of this site. !!!!!!!!!!!!!!!!!!!!!!!!!

He looked everywhere on the internet and could't find very much info on CH so he started this site himself. That was April 11th, 1998. Through these years since, he has allowed us this forum to not only vent and commiserate with each other and form lifelong friendships... but gather the wonderul information from everyone who came afterward and contributed, that has made our lives so much better.

Through CH.com, OUCH was formed and after that OUCH-UK and many other OUCH's across the world. Italy, Spain, Germany, etc.

Why do I feel like clustervilles chamber of commerce ambassador...lol

Linda

Title: Re: Hey Chuck
Post by DannyV on Apr 18^th, 2007, 11:48am

DJ- Oprah Award?
Send Oprah a ton of videos how he saved all these people? Tell the story. Show the horror. Illuminate the fact that so many people out there who suffer from this suffer alone Bieng misunderstood? Misdiagnosed? "We all know the song."-Niel Diamond
Danny V

Title: Re: Hey Chuck
Post by Guiseppi on Apr 18^th, 2007, 2:12pm

Okay Danny, I don't have any idea who you are, but anyone who can quote Neil Diamond is okay by me! (It's almost like being able to quote Barry Manilow, it's cool but you're never sure you want anyone else to know! ;;D)

Guiseppi

Title: Re: Hey Chuck
Post by DannyV on Apr 19^th, 2007, 10:17am

"His name was Rico,..He wore a diamond."

Title: Re: Hey Chuck
Post by testy01 on Apr 21^st, 2007, 9:43am

Chuck

I saw your Chuckattack2 video. Just a couple of minutes that really horrified me. One of the very good things about that video is that now I understand why I scared my family so badly. Seeing it from the "outside" like that was a learning experience for me.
Thank you for taking the time and trouble as well as allowing a camerman to be around. Personally, I can't stand to be around people when I'm having an attack.

Best regards

Jack

Title: Re: Hey Chuck
Post by The mad viking on Apr 21^st, 2007, 9:52am

Hi There

I have the full version of the dvd off Chuck getting hit.Its a version around 30 minutes.
When i am traveling around Norway using that tape speaking about clusterheadaches i can promise you that tape has really open doors to the medical comunity that i thought was impossible.

Thank you again Chuck for letting me use that tape.The tape is worth its weight in gold for me in what i am doing here

Svenn

Title: Re: Hey Chuck
Post by testy01 on Apr 21^st, 2007, 10:48am

Svenn

You show people 30 minutes of that? I cringe just watching the 2 minute version. I believe you when you say it helps get attention.

Regards

Jack

Title: Re: Hey Chuck
Post by Cathi04 on May 6^th, 2007, 1:10pm

There are a LOT of amazing people here in Clusterville.........
DJ sits at the top, because he had the notion and the wherewithall to bring this site into existence!
There are people with immense knowledge of CH, and people who are incredibly supportive and people who can always be counted on......and amazingly faithful people to this site....and, well, Chuck. Yes, it was quite brave of him, to allow someone into that most private part of his affliction, but you just have to speak to Svenn, as he shows this 30 mins of hell, to know how much it helps to make people aware of the horror that is CH!
Keeping your heads together, trying to sort out this insidious affliction, and constantly seeking a cure/control is what everyone does here.

.and none of that could've happened, if it weren't for Deej....

I'm grateful for all the people in Clusterville.......it takes a whole lot of people to keep this boat moving-and moving, it is........... forward, onward and upward....

Danny, will you join us? Pick up an oar, and let's keep moving, ok?

I wish you PFDAN, my friend!

Cathi

Title: Re: Hey Chuck
Post by DannyV on May 7^th, 2007, 8:57am

Hey Cathi.
Almost 20 years now of rowing my own little boat in circles.

Title: Re: Hey Chuck
Post by taraann on May 20^th, 2007, 9:39pm

Hey it took me forever and a day to watch chuckles video of his hit. :'( Chuck did you know that I just recentlyand I mean the last few months ... just cause I couldn't barely bare before now (well not that I can bare it any better now) whatever I'ma babblin away

Title: Re: Hey Chuck
Post by MikkaB on May 21^st, 2007, 4:02pm

Play it now!
Play it now!
Play it now my baby
Cracklin Rosie make me smile
Girl if lasts for an hour well that's all right
cause we've got all night....

sorry, closet Neil Diamond fan here ;;D

Thanks, Chuck. I thanked you on another thread but I want to say again how brave it is of you (and Tony) to put that out there. I've already sent several family members & friends the youtube links.

Title: Re: Hey Chuck
Post by DannyV on May 21^st, 2007, 6:14pm

Maybe we should start 8) a new section devoted to Niel. ....Or E.

Title: Re: Hey Chuck
Post by BarbaraD on May 30^th, 2007, 1:19pm

What's worse than watching that video of Chuck is sitting in a nice restaurant with Chuckie and watching him go thru a 30 minute LIVE performance. Now that's an eye-opener.... (But being the troopers we were - we IGNORED him - more than I can say for the other patrons in the restaurant ;) ).

During the years since this site went up and we began meeting face to face, I've seen grown (otherwise tuff) men brought to their knees in total misery watching another person go thru a hit. That's when you build up a big respect for supporters. I can still remember the first "other" person I saw get hit (Kip - of the Kip Scale). It was horrible!

Doctors need to see a lot more of this.

Hugs BD

Title: Re: Hey Chuck
Post by ClusterChuck on May 30^th, 2007, 6:31pm

on 05/30/07 at 13:19:03, BarbaraD wrote:

sitting in a nice restaurant with Chuckie and watching him go thru a 30 minute LIVE performance.

GAWD Barbara! I think about that hit SO often!!!! I wanted to go back to the hotel, but none of you would let me. And from what I heard, there was a road rally running back and forth to the hotel, to get me oxygen. I am glad we were just around the corner. I was NOT having fun!

But, yes, a lot of "civilians" got quite an education. From what I hear, most of y'all at the table, were talking with the "civilians" explaining what was going on.

Helluva night!!!

And damn good food, too, when I finally got to eat.

Chuck

Title: Re: Hey Chuck
Post by Sandy_C on May 31^st, 2007, 1:47pm

Danny, yes, Chuck, by allowing this video to be taken of him during a hit, and allowing it to be circulated worldwide, is OUR HERO :-* :-* :-*

The first time I tried to watch that video, I lasted about 5 minutes, and couldn't take any more., and had to walk away in tears. Then, at last year's OUCH convention, they played the video in its entirety and I sat in that audience with tears running down my face, and looked around, and there was not another dry eye in the house.

Also at that convention, I witnessed my very first CH hit happening to someone else, live, upfront, personal. I was astounded, devastated, and heartbroken, because l could do nothing for this woman to make her pain go away other than to offer my support. That was one of the most profound moments of my life. I have never felt more helpless.......

This is why we are all here. To share our successes and our failures, our happiness, our frustrations, and our anger.

This is home.

Sandy