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        New Message Board Archives >> 2002 Posts >> Infiltrating the Medical Community
        
(Message started by: don on Nov 15^th, 2002, 3:16pm)

Title: Infiltrating the Medical Community
Post by don on Nov 15^th, 2002, 3:16pm

Heres a thought.

A while back I accompanied my wife to her neuro visit. She has the same neuro I do. When they called her in I naturally followed her. The Doc stopeed me and said while he was with my wife would i please go into the other exam room. There was a med. student there and he said "tell her everything she needs to know about CH". Heres the thought................................

OUCH endorsed Cluster Headache Advocates.

An advocate available through the Docs to speak with med students or patients.

Just a thought

Title: Re: Infiltrating the Medical Community
Post by echo on Nov 15^th, 2002, 3:25pm

You may well be onto something here. Get to the interns while they are informational sponges.

Title: Re: Infiltrating the Medical Community
Post by Jackie on Nov 15^th, 2002, 3:26pm

Interesting idea, Don.

Can you elaborate a little.....what's you thought process on how to implement this?

Jacks 8)

Title: Re: Infiltrating the Medical Community
Post by jonny on Nov 15^th, 2002, 5:08pm

Im sorry but I cant hold back.....LOL

Her Doc wants you in another room while he is in a room alone with your wife?

Hmmmmm!!!!

And you didnt kill him?

You preffered to talk to a young male med student?

Hmmmmm!!!!

.......................jonny ;D

Title: Re: Infiltrating the Medical Community
Post by don on Nov 15^th, 2002, 5:54pm

Young FEMALE med student bro.

No specific thoughts Jacks. Looking for input.

Title: Re: Infiltrating the Medical Community
Post by Slydog on Nov 15^th, 2002, 6:03pm

Jonny You got caught sleeping!! Don said in his original post"tell her everything SHE needs to know" . Sorry just had to take the opportunity you ae usually so on top of your game. :D
Sly

Title: Re: Infiltrating the Medical Community
Post by domm on Nov 15^th, 2002, 6:16pm

Don - I think its a great idea. We'd need an "in" at medical teaching colleges and teaching hospitals. My brother in law is a horse pistol administrator. I'm going to hit him up for ideas on how to approach this. Most of his friends are docs. See what he says......
domm

Title: Re: Infiltrating the Medical Community
Post by don on Nov 15^th, 2002, 6:20pm

WTF is a horse pistol administrator?

Horses should not be carrying firearms.

Title: Re: Infiltrating the Medical Community
Post by jonny on Nov 15^th, 2002, 6:27pm

on 11/15/02 at 18:03:47, Slydog wrote:

Sorry just had to take the opportunity you ae usually so on top of your game. :D
Sly

"ae" ??

Sorry Slydog, just had to take the opportunity ;D

.........................jonny

Title: Re: Infiltrating the Medical Community
Post by Not4Hire on Nov 15^th, 2002, 7:14pm

on 11/15/02 at 15:16:00, don wrote:

...not quite clear what ya mean by "advocate available through the Docs" .....do you mean somebody knowledgeable (like Ueli) that has the data base available to educate the dumbastidges ...or somebody like YOU, don, that has/will have the power to bring OUCH's influence into the game? ...or something else entirely....please clarify..... I like the idea of an *advocate* ...just not sure what yer saying......

...o yeah..... about horses with pistols: here in Montana, the ranchers have bumper stickers---Save 100 elk--Kill a Grizzly bear.....the Greenies are pushin' the right to ARM BEARS..... ;D

Title: Re: Infiltrating the Medical Community
Post by Charlie on Nov 15^th, 2002, 7:39pm

Wouldn't it be nice if this works? It may be hard to convince someone to listen but even one is a damn good start.

I'm pretty sure you cannot do this with print-outs or brochures and our presence is a good idea. What are our credentials may be the biggest problem.

Charlie

Title: Re: Infiltrating the Medical Community
Post by don on Nov 15^th, 2002, 8:36pm

Simple

You talk with your neuro about making yourself and OUCH available to his/her CH patients. Sort of an informal referal to a "CH Advocate".

The advocate could communicate (phone, in person, email) with a Docs CH patients. Sell it as a service to the Docs. Not literally sell it, offer it as a service. Availability of an OUCH endorsed, knowledagle long time CH sufferer.

Title: Re: Infiltrating the Medical Community
Post by don on Nov 16^th, 2002, 10:15am

Quote:

knowledagle

WTF does that mean?

This is how AA started out. Two guys going into the sanitariums and hospitals to talk to patients suffering from alcoholism.

Title: Re: Infiltrating the Medical Community
Post by kim on Nov 16^th, 2002, 1:01pm

LOL, Don. How'd you get to be so FUNNY? ;D

Anyway, it's a good idea. Here's the thing. I find that Neuros in general can be "remote" ...........It took me more than 2 decades to even find a neuro who was remotely familiar with the cluster trail....even then, it took a while for us to open up so to speak with one another. How do we go about laying the groundwork between physician and patient in a way that allows for that kind of open communication? When I am out of cycle (like NOW), i don't speak with my physician. I would feel dumb (dumb and dumber ;D) calling him and trying to explain this to him? am I off track here? Doctor-patient relationships that are of the nature of what you are suggesting seem to me to be rare.
It's a good idea but Kimmy not no how do dat.... ???

Title: Re: Infiltrating the Medical Community
Post by Hound_Dogg on Nov 17^th, 2002, 9:28am

Don,

This sounds like a great idea and you truly have a great Neurologist. But, I have to think that most Docs are going to be too conceited to have another explain CH to their patients. I hope I'm wrong. But it took a lot of searching to find a doctor who listens and doesn't take his/her arrogance too far.

Dogg

Title: Re: Infiltrating the Medical Community
Post by don on Nov 17^th, 2002, 10:16am

An advocate wouldn't be there to explain medical aspects. Thats what this board is for with it's countless number od wanna be doctors and researchers. ;D

The advocate would work with the sufferer to show how to improve the quality of life. A neuro wont reccomend a frozen bag of peas but an advocate would.

Title: Re: Infiltrating the Medical Community
Post by David Shea on Nov 18^th, 2002, 2:54pm

LOL, WTF is A horse pistol administrator??

Slydog WTF are you apologizeing for?

Jonney your scareing these guys. must be the bones.

Title: Re: Infiltrating the Medical Community
Post by Slydog on Nov 18^th, 2002, 7:12pm

I figured I'd get a big BITE ME from Jonny. ;D Damn I gotta learn how to type or use spell check.
Sly

Title: Re: Infiltrating the Medical Community
Post by Drk^Angel on Nov 19^th, 2002, 6:15pm

I'd think we'd be lucky if we could just get the docs to give out the CH.com or OUCH websites to their CH patients. That way the patient can get the support if they want it, and discussion on CH if needed. Maybe if everyone bugs their doc until their doc agrees. Maybe if the OUCH brochure is ever finished, everyone could have a box of 'em printed up and give them to their doc to distribute to their patients...

PFDAN..................................... Drk^Angel

Title: Re: Infiltrating the Medical Community
Post by Slydog on Nov 19^th, 2002, 6:43pm

My doc is the one who recommended that I go on the internet and check out clusterheadaches.com. My first visit he thought he had the right diagnossis but said he wanted to do some more checking on it. When I went back for the 2nd visit is when he told me this. I assume he had been here and checked it out. I feel extremely lucky to have found this doc especially in a town of only 50,000 people. I wish there were more like him out there and I will definatly thank him when I see him next. I think your idea could work Don if people were willing to give their time. Sly

Title: Re: Infiltrating the Medical Community
Post by kim on Nov 20^th, 2002, 7:22pm

That's pretty much what I have seen while here.........BUT, what LINKS me (and my frozen peeZ ;D) to the Doc? Howdo we bridge the gap?

Yappin at my tail I gess. ::)

Title: Re: Infiltrating the Medical Community
Post by ChristineL on Nov 20^th, 2002, 7:29pm

My doctor who is a DO also teaches at the local Medical School (which is a DO med school). I think I will call her and offer exactly what Don suggested. If her students have patients that have been diganosed with CH and are looking for an advocate to guide them then they can contact me.

Chris L

Title: Re: Infiltrating the Medical Community
Post by kim on Nov 20^th, 2002, 7:53pm

As a sufferer we do not have credentials to legitimtely associate with a physician of any credential and I cannot imagine a physician referring (on the record) an internet-based referral.....

It jes ain't gonna travel well down that route.

There are places a doc just aint gonna go.

Title: Re: Infiltrating the Medical Community
Post by MaureenG on Nov 21^st, 2002, 1:31am

I think this is a GREAT idea. I'm not very good at coordinating, but I am certainly willing to put my time in to make people aware of this beast.

Slydog, you are VERY lucky to have such a knowledgeable doctor. Steve was diagnosed with migraines, and when I met him, I did some surfing to understand better. It was through searching for migraines, and finding this sight, that I realized he actually suffers from CH. The doctors didn't have a clue. Luckily, we have had better luck since then with finding doctors that are aware of the condition, but not nearly enough.

The doctors are necessary to provide the medical support, but dealing with the "stigma" is just as much of a problem for clusterheads, and being a supporter is no picnic.

If it weren't for this sight, we would not have known about Verapamil, Depakote, oxygen, Imitrex injections, etc. Every successful treatment that Steve has tried has been at his request to the doctors, not the other way around.

Brochures would be a great idea. What about business cards with the web address on them? I need a little help with suggestions on how to go about getting the info out there. I'm anxious to help, just don't know where to start.

Maureen

Title: Re: Infiltrating the Medical Community
Post by Darkelf on Nov 21^st, 2002, 10:03pm

I gotta go think Kim is right on this one. But there are other ways. I am deaf and a Meniere's Syndrome sufferer. As such, we get the message thru churches, Glad (Greater LA Deaf), different organizations that are not directly tied to doctors but are tied indirectly. Say pharmacies. I drop Phamplets for GLAD at the church every month and every month they are gone. And still people dont know how to get interpreters for thier kids or themselves. I will bet you if you start drop brochures for cluster headaches at a pharmacy , you will get response for people just wanting to know if they are having migraines or CHs. The CH suffer will pick up on it when they get their prescriptions filled. Just a thought.

Title: Re: Infiltrating the Medical Community
Post by don on Nov 22^nd, 2002, 2:35pm

Quote:

start drop brochures for cluster headaches at a pharmacy

Now that is a supurb idea. The sufferer will probably acrry the brochure to the next Doc visit as well.

Perhaps if OUCH were to designate pharmacy weeks.

Jan1 - Jan 7 is Walgreens week. Encourage OUCH members to flood Walgeens parhacies with brochures.

Jan 7- Jan 8 is CVS week, etc. etc.

Title: Re: Infiltrating the Medical Community
Post by Slammy on Nov 22^nd, 2002, 2:47pm

I think that's a great idea! Come up with a Cluster Headache infomercial brochure......hmmm maybe we could get someone like Glaxo to sponsor it?

Slammy 8)

Title: Re: Infiltrating the Medical Community
Post by don on Nov 22^nd, 2002, 4:42pm

SLammy I was thinking of a way to involve a drug comp. too. Who else besides galxo? Glaxo helped us out with the next convention. Lets tap someone else.

Title: Re: Infiltrating the Medical Community
Post by Slammy on Nov 22^nd, 2002, 4:49pm

well, maybe that well isn't dry yet...... keep Glaxo in your thoughts..... well, there's AstraZeneca Pharmaceuticals... They mfg. Zomig.....

Slammy 8)

Title: Re: Infiltrating the Medical Community
Post by domm on Nov 22^nd, 2002, 4:50pm

Well, my horse pistol administrator, low life brother in law is officially ignoring me. I emailed him at home and at work with no reply. The bastird owes me a round of golf, too....(he better be dead, or I'll have to kill him) anyway, I'm in for distributing literature. Great idea - let me know

Title: Re: Infiltrating the Medical Community
Post by jonny on Nov 22^nd, 2002, 5:14pm

El Linko?

http://www.astrazeneca-us.com/default.asp

...........................jonny ::)

Title: Re: Infiltrating the Medical Community
Post by don on Nov 22^nd, 2002, 5:25pm

Cluster Headache Awareness month

Title: Re: Infiltrating the Medical Community
Post by Bob P on Nov 22^nd, 2002, 5:47pm

I still have all the work Donna did on CHAW (CH awareness week) a couple of years back. Still needs a little formatting and touching up but the content is good.

The brochure artwork is kind of dragging. If there is anyone out there who does this kind of thing and would like to take a shot at touching up the brochure. The content (text) is done. Just needs artwork (no pictures of women holding thier head because we all know....)

Title: Re: Infiltrating the Medical Community
Post by Jackie on Nov 22^nd, 2002, 6:03pm

What about Eli Lilly?

The CPA firm my sister works for has their account and she is the exec. The world headquarters is right here in Indiana.

Jacks 8)

Title: Re: Infiltrating the Medical Community
Post by MellowFellow on Nov 22^nd, 2002, 6:03pm

I am a medical student and a CH sufferer. If there's anything I can do, I'd be happy to help. Consider me inflitrated.

It has been my experience that general practice docs are very unfamiliar with CH and generally treat patients (like me) right out of the textbooks. I have devised the strategy of becoming an expert on CH and then going into the student clinic and telling them what I need.

Title: Re: Infiltrating the Medical Community
Post by don on Nov 22^nd, 2002, 7:05pm

Let's hear that stategy.

Title: Re: Infiltrating the Medical Community
Post by Not4Hire on Nov 22^nd, 2002, 7:49pm

don....FWIW...i have a copy of The Brochure (which I have been printing on my Gutenberg printer...anno domine 1982) and distributing to the local Montana hospitals to NO discernable effect..... ;D) and may be useful for y'all local CHterrorists......it's just a pure rippoff of the OUCH brochure but I have sent some of the local sufferers *this*way.....those of you with a larger reader base may have more luck..........TommyD has a better handle on this than I ---and BobP as well, but like I said....FWIW.....we ARE tryin' to get the word out......and the pharmacy idea is GOODSTUFF......rock on!

Title: Re: Infiltrating the Medical Community
Post by forgetfulnot on Nov 23^rd, 2002, 2:09am

You guys / gals have the brain power to do some good. I'm sitting down here in Oklahoma to sick to work but I could help out distributing any kind of deal you firmheads come up with.

Throw my name in the hat, my son can drive me around and distribute them.

Lee :-*

Title: Re: Infiltrating the Medical Community
Post by forgetfulnot on Nov 23^rd, 2002, 2:14am

If you didn't notice I just became a veteran with this last post. But no BS, we be serious.
Lee