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Topic: Question for Convention Goers (Read 912 times) |
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don
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What do we expect to get from a neurologist or headache specialist as a speaker. Sort of preaching to the choir isn't it?
How about changing the format to a panel discussion?
A neuro, an ER Doc, HMO rep, insurance company rep,
pharmacist, and one of our own
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brain_cramps
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Re: Question for Convention Goers
« Reply #1 on: Jan 30th, 2003, 11:28am » |
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Great idea!
Who would be 'one of our own'? might want to be careful who is chosen 
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Margi
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Re: Question for Convention Goers
« Reply #2 on: Jan 30th, 2003, 11:40am » |
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I dunno, Don - Doc Robinson was a WONDERFUL speaker. He is very charismatic though and, I think, the best thing about him is that he was willing to learn from US. It gave us a chance to finally "educate" a doctor and it was so refreshing to see his genuine interest in us. Trying to replicate that quality in another neuro may be difficult.
I think the best part of having a doc like him was that it re-affirmed that we are NOT crazy (well, not ALL of us anyways), that this is a very real affliction, very rare, no magic bullet. Yes, stuff we already knew, but it helped to hear it from an authority. He even gave us supporters a shot in the arm because he was blown away by having to witness an attack - to the point that he had to remove himself from the situation - saying 'I don't know how you supporters do it.'
I guess we have to look at a group forum setting as an opportunity for cluster peeps to be able to be HEARD by 'experts', as well as for us to be able to learn from them. Doc Robinson definately gave us both opportunities.
As for ideas for panel content, how about getting someone in to talk about disability insurance options? drug company reps? oxygen suppliers? crisis/suicide counsellors? masseurs for the supporters? (tall, blond, muscular ones, please)
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catlind
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Re: Question for Convention Goers
« Reply #3 on: Jan 30th, 2003, 11:52am » |
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GEez Don, would you quit reading my mind, my head is crowded enough LOL
I already have an ER doc lined up, and two of the speakers I want to get are from the clinical trials so we can get some NEW info hopefully on what's happening for us CH'ers.
I like the idea of a panel discussion. And the convention room would be a perfect setting for that kind of forum if that's what folks want. Rather than sit and listen to a person drone on, it would be nice to have that question and answer forum. Dr. Sanderson, ER doc is going to speak (I have to confirm with her still) on how you can approach the staff at an ER room so you can get to O2 as fast as possible, even offer a letter of information that you can write up about yourself and have your doctor sign and present it to the registration and paperwork bitches and bastards so you can bypass that long and horrible aspect of having to think and answer questions and get to the O2 as soon as possible.
I had also already talked with Margi about having a support/crisis counsellor come and speak too, but we felt it would end up being too generic to be of real assistance to the supporters.
Cat
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Bob P
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Re: Question for Convention Goers
« Reply #4 on: Jan 30th, 2003, 11:58am » |
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Agreed Don. You can only listen to a doc explain the medical facts of CH so many times. We're all pretty educated in that area. Other areas of interest are:
What current research is being done?
What resources are available from the drug companies?
How do we get the insurance companies to cover our meds without having to grovel?
The ER, I'm not a drug addict, is good.
Are all clusterheads doomed to wind up as ugly as hub?
Do women really get clusters?
I nominate drummer to sit on your panel.
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| « Last Edit: Jan 30th, 2003, 11:59am by Bob P » |
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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don
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Re: Question for Convention Goers
« Reply #5 on: Jan 30th, 2003, 4:01pm » |
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And when does the pres. get the damn yacht?
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jonny
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Re: Question for Convention Goers
« Reply #6 on: Jan 30th, 2003, 4:05pm » |
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on Jan 30th, 2003, 4:01pm, don wrote:| And when does the pres. get the damn yacht? |
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G. Gordon Jonny, wants to know the same thing!!!!
LMAO ;D
.......................jonny 
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Roxy
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Re: Question for Convention Goers
« Reply #7 on: Jan 30th, 2003, 4:20pm » |
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Quote:Do women really get clusters?
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.....and what exactly does this mean?????
darn it.......how do you get the name in there?
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catlind
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Re: Question for Convention Goers
« Reply #8 on: Jan 30th, 2003, 4:22pm » |
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If the board and prez and committee and membership would like, I can talk to the pharmacy on base and find out the names of all the sales reps for the different pharmaceutical companies in the area and have some of them come and set up tables with free goodies promoting their products in relation to us Ch'ers and perhaps get them to 'sponsor' the bar tab, or the meals, or the rooms, you know things like that
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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Elaine
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Re: Question for Convention Goers
« Reply #9 on: Jan 30th, 2003, 4:26pm » |
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I am with Bob P on this.
I have had clusters over 20 years I don't feel much like anyone can tell me much I don't already know.
I Like all Bobs ideas.
I like Dons also.
I would like to see the convention a little more lively. To be honest just sitting through speakers is not appealing to me.
I just go to met my cluster friends. The highlight of each convention to me has always been sitting around and talking to the clusterheads and the supports, more than listening to the speakers. I find I get more out of talking to everyone and listening to their stories and getting to know each other. I know we all post and chat but you don't get as much from that as you do face to face talking and sharing stories. The storys seem to come alive face to face. I go for that feeling of I am no longer alone, and this just makes it more real.
Thats my two cents!
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jonny
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Re: Question for Convention Goers
« Reply #10 on: Jan 30th, 2003, 5:03pm » |
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on Jan 30th, 2003, 4:26pm, Elaine wrote:
I have had clusters over 20 years I don't feel much like anyone can tell me much I don't already know.
I would like to see the convention a little more lively. To be honest just sitting through speakers is not appealing to me.
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LMAO......Ever wonder why I never made it to those speaker things?.....LOL ;D
.........................jonny
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Slammy
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Re: Question for Convention Goers
« Reply #11 on: Jan 30th, 2003, 5:10pm » |
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on Jan 30th, 2003, 11:13am, don wrote:What do we expect to get from a neurologist or headache specialist as a speaker. Sort of preaching to the choir isn't it?
How about changing the format to a panel discussion?
A neuro, an ER Doc, HMO rep, insurance company rep,
pharmacist, and one of our own |
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Wow! Don is living proof that being elected president of an organization immediately raises ones IQ by 10%!
Slammy 
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That's it! Everyone out of the pool!
" Everytime I try to get out, they PULL me back in! "
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don
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Re: Question for Convention Goers
« Reply #12 on: Jan 30th, 2003, 6:01pm » |
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Thanks Slam dude
I'm up to 12% of my potential now! In fact I'm going to walk by the library on the way home tonight.
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kim
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Re: Question for Convention Goers
« Reply #13 on: Jan 30th, 2003, 6:23pm » |
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You da walkin man now ;D Here are some library-passing sayings that are sure to prove yur upgraded mental status:
1. Don't step on a crack, yull break yur muddas back;
2. Hi-ho, hi-ho its off ta woik I go..........;
3. skip and sing Miss Mary Mack at the same time.
Your on your way! 
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catlind
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Re: Question for Convention Goers
« Reply #14 on: Jan 30th, 2003, 6:35pm » |
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Oh great, Don posts it first, and I've already got the new speakers in mind so as not to have someone up there telling us something we don't know, and Don gets the credit, sheesh.
Guess I'm just a nobody 
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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kim
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Re: Question for Convention Goers
« Reply #15 on: Jan 30th, 2003, 6:56pm » |
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I would like to help in any way you guys need. Let me know.....
I'm here if need be.
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Slammy
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Re: Question for Convention Goers
« Reply #16 on: Jan 30th, 2003, 7:13pm » |
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on Jan 30th, 2003, 6:35pm, catlind wrote:Oh great, Don posts it first, and I've already got the new speakers in mind so as not to have someone up there telling us something we don't know, and Don gets the credit, sheesh.
Guess I'm just a nobody
Cat |
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Hmmmmm.... That sounds like a whine! We should fine members for whining! ;D
besides don'tcha know that the Prez always gets the credit?
Slammy
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That's it! Everyone out of the pool!
" Everytime I try to get out, they PULL me back in! "
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jonny
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Re: Question for Convention Goers
« Reply #17 on: Jan 30th, 2003, 7:19pm » |
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on Jan 30th, 2003, 7:13pm, Slammy wrote:
Hmmmmm.... That sounds like a whine! We should fine members for whining! ;D
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Tell me your not picking om my girl, Slam ;D
..............................jonny
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catlind
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Re: Question for Convention Goers
« Reply #18 on: Jan 30th, 2003, 7:30pm » |
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Actually, that's not a bad idea ya know.
Whenever we need our chance at our whining and pity party times, we have to pay a fine (which of course would go directly to OUCH), would be a neat way to raise money for OUCH LOL
Not really a whine though, just a very tired Cat feeling under appreciated for this particular item
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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Slammy
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Lust Without Remorse! Love Without Regret!
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Re: Question for Convention Goers
« Reply #19 on: Jan 30th, 2003, 7:54pm » |
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on Jan 30th, 2003, 7:19pm, jonny wrote:
Tell me your not picking om my girl, Slam ;D
..............................jonny
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Ok, O mighty king, I am not picking on your girl! ;D
;D ;D
Slammy
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That's it! Everyone out of the pool!
" Everytime I try to get out, they PULL me back in! "
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Bob P
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The Yacht
« Reply #20 on: Jan 30th, 2003, 7:54pm » |
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Last time I saw the yacht, Jonny was at the throttles and heading out to sea.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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jonny
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Re: Question for Convention Goers
« Reply #21 on: Jan 30th, 2003, 8:00pm » |
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LMMFAO.....Dude!!!!!
Man, I got bigger arms than that, Bro.......LOL
Funny as all hell ;D
...............................jonny
(Bob, just wait till I open photo suite)
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kim
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Re: Question for Convention Goers
« Reply #22 on: Jan 30th, 2003, 8:04pm » |
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Hey........JONNY (Grandma) what big thumbs ya got ;D ;D ;D
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jonny
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Re: Question for Convention Goers
« Reply #23 on: Jan 30th, 2003, 8:10pm » |
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on Jan 30th, 2003, 8:04pm, kim wrote:| Hey........JONNY (Grandma) what big thumbs ya got ;D ;D ;D |
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Didnt ya know that the foot size thingy was BS?
Its the thumb size......LOL
........................jonny
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cootie
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Re: Question for Convention Goers
« Reply #24 on: Jan 30th, 2003, 8:22pm » |
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dude...........you better have them moles checked out on yer chest !!! Pam 
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