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Topic: Those of you who are not OUCH members... (Read 399 times) |
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DonnaHar
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Those of you who are not OUCH members...
« on: Oct 8th, 2006, 10:59am » |
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Ch'ers have many reasons of their own not to join OUCH, but after hearing about another suicide, I can't think of one really good reason not to join.
It doesn't cost a thing, yet every voice and number tells the world that there are thousands of us right here in our group who need to be recognized, diagnosed and treated...serious research needs to be done. What other malady has the word "suicide" used to describe it?
I think we need a National Cluster Headache Day sponsored by OUCH....there are many of us in every state (I think)......we could pass out brochures.....we could put articles in our local newspapers....we could all wear our shirts ...we could speak at seminars on our day...we could have walk-a-thons. I know I'd drive to the next state to participate if I had to.
This might be a stupid, unworkable idea.....I'm just mad at the world of science right now.
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| « Last Edit: Oct 8th, 2006, 11:01am by DonnaHar » |
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The mad viking
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Re: Those of you who are not OUCH members...
« Reply #1 on: Oct 8th, 2006, 11:13am » |
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Now this is words that really touch my heart
September is the official headache mnth in Scandinavia and those of us that feel they have something to contribute with are travelling from coast to coast talking about headaches.I travel all over Norway talking about clusterheadaches.With me i usually have the top 1 neurollogist Professor Inge Monstad with me.He is a guru in headaches and cluster is his speciality.He really know his work.A living encyclopedia for us.
I have said it before many times
To many of you americans are to depended on the net.Its not there you meet people.You need to get out in the streets and meet the peoples face-face.Bet they wont bite either
I know for certain that many of you in Clusterville has the qualification to do simular to what i do here in Norway.
Its just a matter of taking the first step.Ask your neuro or GP if they can supply the info from their side and you from the patients side.Its not that hard.
And there is tons of money out there just waiting to help finance a thing like that
Hell,i did survive in Milwaukee with my babelfish english so i cant see any reason why you should not survive that in your own language
I will be more then happy to try help with ideas
Svenn
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| « Last Edit: Oct 8th, 2006, 11:13am by The mad viking » |
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sandie99
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Re: Those of you who are not OUCH members...
« Reply #2 on: Oct 8th, 2006, 11:48am » |
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National Clusterheadaches Day sounds wonderful to me! I hope that it happends! 
Sanna
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"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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Jackie
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Re: Those of you who are not OUCH members...
« Reply #3 on: Oct 8th, 2006, 12:00pm » |
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Excellent idea, Donna .....I'm with ya on the 'mad' part!!!
Join OUCH!!!!!!!!
Jackie
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Gator
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Re: Those of you who are not OUCH members...
« Reply #4 on: Oct 8th, 2006, 1:30pm » |
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It's not a stupid idea, Donna. It will just take the combined efforts of all of us to make it happen. That is why it is so important for every cluster headache sufferer on this board to add their voice to the thousands of other voices around the world. We need to speak out in a loud clear voice that our pain is real and the consequences of not controlling it with effective treatments can be devastating and even deadly.
For anyone who does not know, The Organization for Understanding Cluster Headaches (OUCH) is a non-profit organization that is working to increase awareness of cluster headaches in the medical community and general population. We are partnering with cluster headache and other headache organizations around the world to help accomplish this.
OUCH provides information and emotional support to cluster headache sufferers throughout the world. OUCH encourages, supports and participates in research to develop new and improved therapies and practices for treating cluster headaches.
Membership in OUCH is open to anyone who sufferers with cluster headaches, supports someone with cluster headaches or has an interest in cluster headaches. Membership is completely free.
The OUCH website is http://www.ouch-us.org
Please join OUCH and make all our voices a little louder.
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The mad viking
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Re: Those of you who are not OUCH members...
« Reply #5 on: Oct 8th, 2006, 1:35pm » |
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on Oct 8th, 2006, 1:30pm, Gator wrote:It's not a stupid idea, Donna. It will just take the combined efforts of all of us to make it happen. That is why it is so important for every cluster headache sufferer on this board to add their voice to the thousands of other voices around the world. We need to speak out in a loud clear voice that our pain is real and the consequences of not controlling it with effective treatments can be devastating and even deadly.
For anyone who does not know, The Organization for Understanding Cluster Headaches (OUCH) is a non-profit organization that is working to increase awareness of cluster headaches in the medical community and general population. We are partnering with cluster headache and other headache organizations around the world to help accomplish this.
OUCH provides information and emotional support to cluster headache sufferers throughout the world. OUCH encourages, supports and participates in research to develop new and improved therapies and practices for treating cluster headaches.
Membership in OUCH is open to anyone who sufferers with cluster headaches, supports someone with cluster headaches or has an interest in cluster headaches. Membership is completely free.
The OUCH website is http://www.ouch-us.org
Please join OUCH and make all our voices a little louder.
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Could not agree more with you on what you said Mike
We cant repeat this to often
Svenn
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chewy
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Re: Those of you who are not OUCH members...
« Reply #6 on: Oct 8th, 2006, 2:17pm » |
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Sorry but using someones, anybodys, suicide to gain OUCH members is pretty tacky.
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Gator
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Re: Those of you who are not OUCH members...
« Reply #7 on: Oct 8th, 2006, 2:37pm » |
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There was no disrespect intended in anyone's posts in this thread, Don.
The fact that a cluster headache sufferer chose the ultimate cure for his pain should be a wake up call for everyone that suffers from, supports sufferers of or treats patients with cluster headaches.
It's times like these that people seek out places of information and support. Joining OUCH was mentioned twice in this thread before my post. People who are new to this board may have no idea what OUCH is. Don't you think someone should tell them? If not today, when? After another suicide?
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LeLimey
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Re: Those of you who are not OUCH members...
« Reply #8 on: Oct 8th, 2006, 2:37pm » |
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Don no one is "using" anything. I think both Donna's and Gators point was that if we are all together then we aren't alone with this and there is proof that the support network works.
OUCH is an org set up as you know to help ch'ers. Here's one we missed. I think people were just trying to say lets not miss anymore.
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chewy
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Re: Those of you who are not OUCH members...
« Reply #9 on: Oct 8th, 2006, 3:00pm » |
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Quote:| There was no disrespect intended in anyone's posts in this thread, Don. |
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I'm sure there wasn't but it comes across that way.
Quote:People who are new to this board may have no idea what OUCH is. Don't you think someone should tell them? If not today, when? After another suicide?
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Sure someone should tell them but not by using someones suicide as the vehicle.
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purpleydog
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Re: Those of you who are not OUCH members...
« Reply #10 on: Oct 8th, 2006, 3:16pm » |
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on Oct 8th, 2006, 3:00pm, chewy wrote:
Sure someone should tell them but not by using someones suicide as the vehicle. |
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This is the perfect time to let people know about OUCH, and the support network available there. People will know where to turn if they need help, and information. Especially any newbies.
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maffumatt
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Re: Those of you who are not OUCH members...
« Reply #11 on: Oct 8th, 2006, 3:20pm » |
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Now whos using it?
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LeLimey
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Re: Those of you who are not OUCH members...
« Reply #12 on: Oct 8th, 2006, 3:30pm » |
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Please stop this. I can't bear it. Not today.
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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chewy
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Re: Those of you who are not OUCH members...
« Reply #13 on: Oct 8th, 2006, 3:58pm » |
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Quote:| This is the perfect time to let people know about OUCH |
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At least allow for a mourning period before putting up a bill board.
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| « Last Edit: Oct 8th, 2006, 4:02pm by chewy » |
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DonnaHar
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Re: Those of you who are not OUCH members...
« Reply #14 on: Oct 8th, 2006, 4:24pm » |
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Do you really see a connection in wanting to alleviate pain and suffering with a membership drive?
This isn't a trick thread and there are no lines to read between. Just read it again.
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Donna_D.
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Re: Those of you who are not OUCH members...
« Reply #15 on: Oct 8th, 2006, 4:35pm » |
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Someone very near and dear to me is grieving today over the loss of his friend. I am going to concentrate on his feelings and helping him deal with his feelings of loss.
Mentioning the resources that are available through OUCH is ok. Fighting over it serves no purpose but to inflame feelings that are already raw and taxed and honestly, seems rather petty in light of the days revelations.
I appreciate all who support OUCH. Your dedication is admirable. However, I will ask those that are truly dedicated to let this subject rest in peace along side our friend Lee.
We can deal with this another day...but not today. OUCH will be here today, tomorrow and the next.
Now, I am off to console my friend. Today he needs me, not OUCH.
DD
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HappyElaine
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Re: Those of you who are not OUCH members...
« Reply #16 on: Oct 8th, 2006, 5:44pm » |
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I think its a good idea, I also think that Lee would like it also.
I also think we as a group here on this board should stop the fighting and do more to prevent anyone from ever doing this again.
Maybe this is a wake up call for all of us, in more ways than one. Take people more serious, and work to get the word out before we lose more to this Pain!
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jon019
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Re: Those of you who are not OUCH members...
« Reply #17 on: Oct 8th, 2006, 6:07pm » |
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on Oct 8th, 2006, 4:36pm, KingOfPain wrote:
KOP,
THAT really struck home. This is a sad and frustrating time and folks are in pain of a different kind. I want it ALL to stop. The undeserved pain for sufferers and their supporters, the life changes, and the loss of loved ones. I have never met a single one here, BUT, I consider each and every one a brother or sister. To lose one, for whatever reason, hurts like the loss of a family member.
Today I joined OUCH, been thinking about it for a while, decided that if not now, when? If OUCH can save one person from this fate through intervention, education or support, or ease the way even a little bit, then I need to be there and every single ounce of effort they put into it is worth it.
If this tragedy is not a wake up call, then nothing is.
Lee is beyond our help, NO MORE!
Regards
Jon
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