Michael J Fox PD and migrianes

I have put the first question on mine too.
I think I might post a new one each day for a week maybe.
As I said, we have nothing to lose.
Its pretty clear to me that if we dont become more proactive the next 20years will be like the previous.
They may still be, but at least we will have tried.

Gone 2am here, so I will check in the morning and see if I get any comments.
Do you want to start a new topic on here for this Brent?

Thanks Brent.
Night all.

I have gone to the State Capital in Oklahoma and talked to several State Representatives about Migraines. They all tell me that they either have Migraines or know someone that does. They say they just take a few pills and go on with their work. I guess that the pills are OTC aspirin and the "Migraine" is just a simple headache. They are not interested at all in doing anything, like getting Migraine on the disability list. It is a real joke, trying to get these people to listen. One would think that the whole state legislature suffered from chronic, severe migraine, but that they get cured with a couple of aspirin. So what's the problem? Just the dirt that the totem pole is set in.

Hal

i agree entirely with you post! there are some neuros that work with migrine action that suffer from migs. these organisations are setting up teaching days for mig patients, families of mig patients and do training days for gps too. as they say you can take a horse to water but........! there is a big mig awareness week for migraine in septemnber that mig action have on their site. so if we all post that on our wallls and help them in what there doing it can help too.

We just need to barrow a couple pages from the breast cancer awareness groups. They know how to get the message out and get people involved. One of the key ingredients is a couple vocal celebrities.

More men are diagnose with prostate cancer then women with breast cancer. Yet breast cancer research gets twice as much funding, private and gov. It's all about the squeaky wheel gets the oil.

So we need to start squeaking and doing it loud. And to get non mig people involved also.

The non migraine people should be our nearest and dearest, but of course they are not celebrities. (Are they?)
I do know a family of entertainers of whom many suffer from migraine, but they havent been stopped from performing.
However I am going to get in touch and see if they could help at all.

I dont think we should let this go. While we are a bit fired up, lets just see what we can do.

As Dawn mentioned we do have migraine awareness her in England i September.
Suppose we see what we can do between now and then and maybe I could speak to the director and see if she can help.

As we are all victims of this damned illness, and as we cant be up to it all of the time. we all need to pull together to make an impact.

if we could all find as many of those high profile people who do get migs we can all contact them. the city of london mig clinic are asking us to contact the radio 4 reporter to 'win' him to do a big report on tmigraines. also mig action have loads of posters and eaflets we can get from them to get in to drs surgerys etc to raise awareness of migs. every little hleps!!

The US has a lot of awareness days but only a handful of them get any press. There is even a prostate cancer awareness month but if you search all the major news websites and local ones you won't find a single mention of it. I have yet to see anyone wearing a blue bracelet yet. Even though that is the official awareness color.

So even with a month set aside without promotion it is still invisible. We need to start making gray bracelets for migraine awareness. Black is associated with death so gray means close. Gray is devoid of all the colors and associated with overcast days that keep many inside and less engaged in life.

I think the first thing is to get everyone who suffers BADLY with migraine, and I assume that is everyone on this forum, on board.
If we cant count on ourselves for a start, we dont have much chance with the rest of the world.

lets use what we have have everyone try and get this radio 4 feature!! im getting my mig action posters, theyre there, lets get them and get them out there!!

Please, please, please don't be offended by what I'm going to say?

I think there are a lot of good ideas here, but I don't want anyone to think this is going to be big and fast.

We just had National Headache Awareness Week here in the U.S. ("headache" included Migraine, as in "headache medicine.") I wrote about it and blogged about it on at least three sites. I had links all over my Facebook pages.

Now comes the difficult question that I don't want anyone to be offended by... Did any of you post links to awareness week content anywhere?

Teri

A few years ago, I secured the funding for "Fighting Migraine Disease" wristbands. They were purple and said, "Fighting Migraine Disease." There was no charge for the bands. All that was asked was $!.00 for packaging and mailing. They went well for a while; I was shipping hundreds of them a week. After about six weeks, it tapered off. My living room was full of wristbands, envelopes, etc., for a year.

That's one problem with those. Another is that you can't just buy a few. You have to spend thousands of $$ and order thousands of them. That means money up front.

I do have a Cafe Press shop for Migraine awareness items. With Cafe Press, I don't have to stock anything. Anyone who wants can order single or multiple items. I mark items up just a bit, and when there are sales, the mark-up is donated to Migraine research or advocacy. I've found that the only way I can afford to make anything available to boost awareness.

Teri

Brent wrote:The US has a lot of awareness days but only a handful of them get any press. There is even a prostate cancer awareness month but if you search all the major news websites and local ones you won't find a single mention of it. I have yet to see anyone wearing a blue bracelet yet. Even though that is the official awareness color.

So even with a month set aside without promotion it is still invisible. We need to start making gray bracelets for migraine awareness. Black is associated with death so gray means close. Gray is devoid of all the colors and associated with overcast days that keep many inside and less engaged in life.

were just getting going on it, there is so much being prepared here in the uk with posters for us to get into gp surgeries etc which helps awareness to gps etc and were just seeing what ideas we can get together to try and snowball this and ue what is being put out there for us. brent said it hadnt got far in the us but were going from where we are really.

I did on FB along with some info links. Our FB friends have a bit more of a vested interest in us vs. a total stranger. Lets put that to work.

I have sat back and seen one too many completely stupid A&% causes being promoted in the media. It's not the topic so much as how it is promoted.

Each one of us can find a specific strategy to use. Many of my FB friends are health care providers. After having my question hang for 24 hrs I then kicked it up a notch by mentioning that health care providers should know and care. Now I will see how many of them will comment and try to defend their lack of knowledge.

Either way I will be making several points.

Three of my FB friends are chiropractors. Several more are practicing massage therapists. I find it unacceptable that they had nothing to contribute. It doesn't make them look very good to my other FB friends who also know them.

Chiropractors and massage therapists will always promote that they can help chronic and acute "headaches". Now I have 180 FB friends that may have some doubt. Once again more critical questions may be asked, not necessarily out loud but to themselves.

dawn.binks wrote:were just getting going on it, there is so much being prepared here in the uk with posters for us to get into gp surgeries etc which helps awareness to gps etc and were just seeing what ideas we can get together to try and snowball this and ue what is being put out there for us. brent said it hadnt got far in the us but were going from where we are really.

That is really great to hear! I hope it goes well for you. By all means keep us posted so those of us on the other side of "the pond" can see it.

Well I see part of our problem. I had no idea there was a headache awareness week in the states. I've wondered about if there was something and if there was an associated ribbon but hadn't found anything.

I can see Teri's point - costs money to do the whole bracelet thing but that seems to have faded into the past. I don't see many people wearing those anymore. I work for a medical school and you'd think that I'd see more of that sort of thing but I don't.

Apologize for the brevity here - head is trying to act up. But what are the official colors? I'm a beader and would make my own awareness item - whether it was jewelery or a pin but had no idea of what color to work in.

Very interesting topic however.

Making your own sounds like a much better idea. As long as it doesn't look like a regular bracelet. Anything that will stimulate conversation and maybe we will then occasionally run across someone else that has one. If the person you run into has a bracelet then odds are they are doing something regarding awareness. Networking and sharing energy can be a very powerful force.

I wear a lot of tee shirts, use some tote bags, etc., and they get lots of comments. Hope nobody considers this spam, but if you want to see what I've been using, you can find my Cafe Press shop HERE.

Teri

Brent wrote:Making your own sounds like a much better idea. As long as it doesn't look like a regular bracelet. Anything that will stimulate conversation and maybe we will then occasionally run across someone else that has one. If the person you run into has a bracelet then odds are they are doing something regarding awareness. Networking and sharing energy can be a very powerful force.

HERE

Over here migraine action do some stuff, but not to wear I dont think.
I could ask about this idea.
We do have key chains with coins for using in supermarket trolleys/carts.
And Christmas cards, not sure what else.

P

Cindy McCain (US senator's wife) felt the same as us for years (Pen, her's started around the time ours did), and she also ended up with a stroke. She is now speaking out after keeping quiet behind sun glasses.

I hope she carries some clout.....we sue need it.
I never gave stroke a thought, the warnings were not really much over here and only for mig with aura.
I have to admit it is scaring me a bit and I didnt need that.

Pen - Stroke is a risk factor with migraine. BUT, it is just a reminder to keep healthy - have blood pressure checked, eat right, exercise, etc. to lower that risk.

Exercise, zilch. I cant Linda, I spend most of my life on this couch. Now with this neck problem I am even more immobilised.
Also cant eat fruit and veggies with the IBS....I am doomed.

Pen,

Just make sure that you get screened periodically. Blood pressure, heart function and a cholesterol test. Also try not to eat purely junk food (highly processed stuff).

This is one thing that scares me to death. There is such a high propensity for heart disease in my family and I'm doing what I can to eat well, exercise when I can and make sure that I take care of my body.

Funny that someone my age is worried about heart disease but my cholesterol has been out of whack at an earlier age, my brother (who's 3.5 years younger) couldn't get an accurate reading on his cholesterol a few years ago because his triglycerides were so high. I know that heart disease is a silent killer, especially among women and I want to live a long life.