Migraine

Hi all,
I was wondering if there is a "formal" program or process that we have to get the word out to folks about MAGNUM and about migraine education in general.

I would like to get more information out to the public about this disease to my work and folks I work with to better help them understand. Also, I know they are others who I know get migraines, maybe not as severe as I do, but I would like them to know they are options available to them. Treatment, education, and folks to listen.

I live in Indianapolis, IN and had no idea about this group. Didn't know there was such a thing as a headache specialist until recently and didn't realize how uneducated I was about my illness. I really feel strongly that folks here need to know more.

What can I do to help spread the word?
Thanks!
Jean

Jean,
You've raised a very good point! I'm having a hard time educating my own family, much less my community, about migraine.
Rebecca

Do you eat lunch in a lunch room? Casual conversation might be a great way to spread the word and dispel misconceptions. I didn't do that with my law partners, and I could have. Except that this was 15 years ago, and not nearly as much was known back then. Start with your peers, then move up the ladder.

With the atmosphere in my office, I don't think an all-out education project would have been accepted. Fact sheets in the break room would have been ok, but not taking up time in staff meetings, which took us away from our work. When you bill by the hour, meetings mean lost money.

This is my thought about my work situation. I had to give up my practice 15 years ago because of my head, so my experience is very old. I can tell you that when I had to withdraw, my partners all said that they had no idea that I was having so much trouble. Apparently, I hid it well. They'd stroke out if they knew how many projects I handled while taking opioid pain meds.

I'll be interest to see what other folks say.

Gretchen

School starts 20 August. IF I still have a job (2 new middle schools opening, staffing switches, etc., etc. ...), I'll talk with my school nurse about some sort of something. Many of our students have migraine disease, also, so I'm sure their families would welcome up-to-date information.

Also, I'll talk with the other teachers who have migraines & update them. I've sure learned a lot from y'all over this summer!
THANK YOU!
Rebecca

Oh, and I'm wondering about getting American Red Cross to update their First Aid training? Is this necessary? Opinions? Teri?
Rebecca

Hey Thanks for the responses and ideas!

What does everyone think of an approved FAQ sheet or brochure we can print and pass out to folks? (At our own expense) If we can have approved communication from Teri or MAGNUM that we can print, I would love that. Then I can pass it out to folks and let em know what I am facing on daily basis. I can also others know if they are migraine suffers where to turn for help.

I think the more information we can get out there in front of people the better. Get 'em to know who we are! Get 'em to know we are underserved! Get 'em to know we need their help and understanding! You know.. the war cry! But be proactive!

We can get our cause to the forefront if we get more communication out there.

Form leaders? What do you think? Have I over stepped?
Jeanbean

Hi Jenn
I've read your idea and educating ourselves and others about Migraine disease and headache is very important. Most people are computer literate these days so maybe giving them the sites would be someplace to start. I am just thinking outloud.
I will talk with Teri and see what she thinks. We do have edcation info that isn't up on this site yet, but you can find it here: http://www.helpforheadaches.com/lwfiles/family-mig-letter.htm
We'll be in touch.

Teri & Nancy,

Please keep us all updated on this issue. I would love to have something to give to my son's school.

MigraineMom

Hi there, family!

Sorry it's taken me a few days to reply to this. It's been one of those weeks. A Migraine, my first "you're-over-50-it's-time" colonoscopy, etc. ICK! Anyway, I've been watching this, but wanted to wait until I had time to really address this because it's so important.

I don't know how many of you know this, but I'm also a volunteer staffer for MAGNUM, their support advisor. When I can, I spend a week or so in their Alexandria, Virginia, office helping out. Mainly, I answer the phones and talk with Migraineurs who need info and support.

Heaven know I agree with all of you that public awareness must be raised, and education is the best way to do that. As Nancy posted, there's a letter that you can use to educate people about Migraine disease. You can find that letter HERE. Feel free to print it and use it whenever, wherever you can.

Sometimes, I think a letter with few graphics can be done better than a brochure if we're talking about something to be downloaded and printed out. The potential problem with printing a nicely designed color brochure is that printers vary. Some print well, some don't; some are true to the colors chosen; some aren't and look awful. One year, I was really saddened to see really awful looking brochures for Chronic Pain Awareness Week in -- of all places -- my doctors office. Someone had taken a color brochure made available on the Internet and printed it in black and white on a printer that was running out of ink. Parts of them were so blurry and faint that they couldn't be read. People were using them for scratch paper or encouraging their kids to make paper airplanes out of them. So, maybe what's needed is two educational pieces -- a letter that prints out easily on just about any printer and a color brochure that needs to be printed on a good printer with a good ink cartridge?

As I see it, the two biggest issues are organization and expense. Certainly I can write a letter and put together a brochure. It can be from MyMigraineConnection, MAGNUM, Help For Headaches, and maybe another organization or two. The organizing part is getting people to know the material is here and available and get them to use it. Printing is expensive as is shipping printed materials. MAGNUM used to have a wonderful information packet, but the expense of sending them out became prohibitive. We asked that people make a $10 donation to cover the time and expense of putting them together and mailing them, but it just didn't happen. People didn't make those donations. We know that not everyone can, but some people we knew could afford to send that small donation. They just never did. Organizations such as MAGNUM are now depending pretty much on pharmaceutical company grants because individual donations are so low.

Hmmmmmmmmmmmmmmmmmmmm. Sorry if I sound negative. I don't mean to, but I'm very tired this evening. This is a great idea. We just need to figure out how to make it happen. Let's keep talking!

Hi folks!

I've been thinking about this idea too. I think It's excellent that we seem to be building a head of steam to get at least some accurate, uptodate info out. It would be great to have the MMC and MAGNUM imprimatur on it too.

I think that a one side sheet is more than enough for people who, let's face it, are really not all that interested in someone else's pain and disease.

It has to be short and sweet and easy to read with some very practical ideas for how they can support (people need this 'what can I do?' info - it does make them feel useful and they tend to follow 'officially' produced simple guidance, even though you've been telling them the same for donkeys' years!).

Like Teri, I think a brochure type publication is not so effective - not only in terms of printing, but also that people are just not that interested in someone else's disease (I'm talking about general interest here, obviously one hopes that family and close friends would read a brochure!).

I'm not sure either that people would actually take the time to look up a website. But giving links on the single sided info sheet would be good.

Just a few of me random thoughts to add into the mix! I'd be happy to help with drafting or suchlike. And I'd hope to be able to distribute this side of the pond.

samx

Hmmm....how about linkable banners that people can post on their myspace, blogs, facebooks to link to sites like MAGNUM and our forums?

It would be especially neat if they were animated, maybe with frames advertising, so frame one would be something like, "Do you suffer from migraines?"

frame 2: "They really aren't 'headaches'". (which would catch a lot of people off guard to read that! And maybe pique interest?)

frame 3: "Visit X website for more information on Migraine disease and those who suffer."

frame 4: "Learn about symptoms, treatments, the lastest in the medical industry, and hear from those like you who deal with Migraine everyday."

I dunno...just an idea.

Good idea! Easily accomplished. Not sure about the animation though. Every time I've tried to use an animation, someone said it was a Migraine trigger for them. Let's keep thinking on this.

quote:

Originally posted by Leeloo:
Hmmm....how about linkable banners that people can post on their myspace, blogs, facebooks to link to sites like MAGNUM and our forums?

It would be especially neat if they were animated, maybe with frames advertising, so frame one would be something like, "Do you suffer from migraines?"

frame 2: "They really aren't 'headaches'". (which would catch a lot of people off guard to read that! And maybe pique interest?)

frame 3: "Visit X website for more information on Migraine disease and those who suffer."

frame 4: "Learn about symptoms, treatments, the lastest in the medical industry, and hear from those like you who deal with Migraine everyday."

I dunno...just an idea.

Well, to me, it'd be a slow moving animation, with just words, to give people time to read the information anyway. Of course, I guess you need the right mix of factors to catch attention and keep it, but I would not want to see any flashing or loud colors either!

Hmmmm hmmm, will have to keep thinking...

Trust me, Leeloo, some people will complain about any animation, regardless of speed. But, that's life. It's impossible to please everyone.

quote:

Originally posted by Leeloo:
Well, to me, it'd be a slow moving animation, with just words, to give people time to read the information anyway. Of course, I guess you need the right mix of factors to catch attention and keep it, but I would not want to see any flashing or loud colors either!

Hmmmm hmmm, will have to keep thinking...

What about slow fade outs, from one "frame" to the next?

quote:

Originally posted by Teri Robert:
Trust me, Leeloo, some people will complain about any animation, regardless of speed. But, that's life. It's impossible to please everyone.