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Topic: ?? for BobP and BOD's (Read 479 times) |
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catlind
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Taz taught me the cluster dance
  
 
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?? for BobP and BOD's
« on: Dec 26th, 2002, 6:44pm » |
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I am going to the Walter Reed Army Medical Clinic Neurology and headache clinic.
I posted on the OUCH business board, but want to be sure that I get some info so I'm reposting here.
What info/forms etc. should I take with me to try to get the folks at Walter Reed to join OUCH and become advocates for us?
Right now all I have to give them is my personal info, and I'm not sure how to approach them about the valuable information and personal experiences that are here. I think this board and OUCH will help them to understand and get a grip on this disease and POSSIBLY, just possibly, get some attention. I mean hell, if they can treat the president, then why not us? hehe
I am going to ask them what they would do IF a president came into office and showed up at the clinic with cluster headaches....just how much energy research and effort would they give it then?
Any help and or advice is much appreciated.
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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ave
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Re: ?? for BobP and BOD's
« Reply #1 on: Dec 26th, 2002, 6:58pm » |
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Cat, to convince docs a complaint diary works very well. Obviously you cannot do this now, but you could marshall your personal experiences as if in diary form.
Print the cluster info you find here (docs adore references and diagrams).
And try to be as sober and unemotional as you can be. Het up patients they have had before. Surprise them.
And great good luck to you!
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marty
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Re: ?? for BobP and BOD's
« Reply #2 on: Dec 27th, 2002, 8:53am » |
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Hi Catlind..
I would suggest that you try to get information and e-mail adresses for their Public Relations office - talk to the Doctor that will see you and ask if you can send him some information regarding OUCH and the activities of OUCH. That way you will get his e-mail address to. Forward their PR-sections e-mail address to OUCH.
Also, ask for all the written information that they currently give to patients that are diagnosed with CH.
Find out if they would allow you to place OUCH brochures and new letters in the waiting room and if the Dr would direct CH'rs to the OUCH site.
The above will be part of our strategy in California when it comes to hospitals and Dr's
Good luck
Marty
CalOUCH
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