Michael J Fox PD and migrianes

I just got done reading Michael J Fox's first book called Lucky Man. The book was very good, and I found that for nine years he kept his Parkinson's Disease bascially to himself. This was done for many reasons until finally he felt the time had come to come out of the closet as he says. Taking his medications at just the right time was getting trickier and trickier.

After his announcement PD took the headlines and was finally getting some notification. PD was now starting to get more money towards finding a cure. Many people with early onset like Michael were keeping quite to keep their jobs etc. Now that Micheal brought this to the headlines more research is being done in the hopes of a cure.

I cannot help but wonder about us and our migraines. Is the funding and interest really there for us to possibly find a cure? Where are we on the totem pole for money, interest and the means to find a cure for us?

I felt I needed to bring this up and see what does this forum think? Are we taking a back seat here for research on migraines?

kimsmom

here in the uk we do get some very good research into migraines and have a lot of consultant neuros involved with that, there are 2 organisations migraine action and migraine trust that head up research and giving out of info about migraines and hold conferences at various places around the country but yes obviously more money does go into acute and critical conditions and understanderbly so.

Dawn,

My good friend Eleanor whom I strive to visit in Gateshead has Parkinsons.
She gets everything. Blue badge for their car, benefits, outings, a Parkinson's nurse who comes out to her if she calls.
special regular appointments....I could go on.

She is angry at the fact that, although she is truly grateful for all of that....I get nothing.
None of the above, Zilch.

I could use a blue badge for the car. With the fibro as well, it can make the difference between popping out and staying in.
I would love to have a medic on hand to help me deal with pain and anxieties...
Outings and socials among people who understand and empathise....etc.

Most of what Eleanor gets has come about since MJF "came out".
I had a neighbour with PD years ago, he got medication, that's about all.

We need a MJF. A real celebrity banner waver.
My friend Alan Osmond has done quite a bit for MS too.
It is great when celebrities who are sadly struck down with illness use their status to champion the cause.
I know of celebs that have migraine, but it seems none are chronic, because they are still working.
Alan had to leave the family act because of MS. Now his 30 year old son has also been diagnosed and is an active champion in the US too. We need this people like these.

I am grateful for MT and MA, of course I am. But, having been a member of the latter for over 15 years, there have been no changes at all in the way I am treated, nor viewed. I still have "a headache". I also still only have Triptans. The new wonder drug has yet to rear it's head.

Kimsmom, I am with you. And I have been contacting people in England that might have some kudos.
We need it. We live in a media world, we should be getting it to work for us.
Funding is what is letting us down, even Teri Robert says so and is trying to help.

A raised profile would help, I really think it would. And given the implications for stroke, and God knows what else they will come up with over time. I think we are worthy of more. Migraine itself might not kill, but it seems it can be intrinsic in other conditions that can.

Sorry was that a rant.....must be the mood I'm in, apologies..

kimsmom wrote: .......Where are we on the totem pole for money, interest and the means to find a cure for us?..........kimsmom

We're the dirt they bury the base of the totem pole in.

http://msmagazine.com/blog/blog/2010/03/17/migraine-the-north-korea-of-disabilities/

Cheryl

That just about sums it up doesnt it Cheryl.
As I said, nothing has changed. Nothing of any substance at all.

we dont count, we need to somehow make sure we do...

It was pretty sobering, wasn't it? And just think of the millions who suffer without end.

Cheryl

I have posted that page on my FB migraine page and the others I know of on there.
I dont know what else to do....
As you say sobering....bloody depresiing.

A few celebrities in the past came forward with their migraines, but so what, not much came out of it.

Serena Williams, Monica Seles, Marcia Cross, to name a few- but I have a feeling their migraines were as disabling as some of ours are.

What Marcia Cross have said during Larry King show, and quite adamantly, has stuck in my mind forever -
when asked if migraine ever prevented her from acting she said NO! never!

as if being unable to work due to M is something to be ashamed of.

and while they not advertised their having M, it's well know they suffer from it- Kareem Abdul-Jabbar, Ben Affleck,
even Whoopi Goldberg.

Risa

Senator John McCain's wife Cindy is also a mig patient. Along with Elizabeth Taylor, James Cromwell, Lisa Kudrow, Elle Macpherson, Carly Simon, Loretta Lynn, Star Jones, Scotty Pipen, Annie Glenn (senator and astronaut John Glen's wife), Susan Olson of The Brady Bunch, MVP Denver Broncos running back Terrell Davis, Fred Couples and Elvis.

But most famous people have million plus dollar contracts at risk if they admit they have an unpredictable and recurring condition that can take them out. So some very high profile mig patients have to silence themselves to protect their careers. Acting together these people could do a lot to raise awareness and get into the faces of politicians and medical research directors.

Look at the dozens of goof ball causes lesser known celebs have gotten behind, promoted successfully and triggered huge changes.

Every month or so, I read about promising studies and research on migraine.
I've never read a second report on such studies. They all finish in some forgotten lab....
I know that I'm cynical, but migraine is a huge business. Also other diseases - cancer included - are a too important business and it's not in companies' and governments' interest to find a cure.

What's better than a patient who's obliged to take drugs and make exams for his/her entire life?

ELVIS!!!!

Ok I say we make him our mascot.....if that doesnt let them know what migraine can do to a person.
Nothing will!!!


Pen

Elvis is a good example!

What is so disturbing is that migraine is still for the most part considered "just a headache" or at most a painful "not dangerous, non-life threatening" disease which is so untrue. I just got reading another article from MAGNUM about how serious and dangerous migraines really are. And, yes, they are also life-threatening. Even some doctors don't get it. So how are we to convince the general public.

Without the voice of the medical profession we have no chance.
Celebrities who insist they can still work pretty normally actually dilute our case.

We need some that have had to stop, or drastically reduce their work because of migraine.
am so sick of all the bad news about strokes and everything else.
Why do they wave this stuff at us and refuse to do anything to help us?

I had a life now I have none, I dont need more warnings.
I need something doing.

There is nothing worse than feeling helpless and losing hope.
I try to hope, but after the last 10years, I am losing it.

Sorry ,but pissed off today. Husband's birthday and I have been no fun.
Stayed in all day.....I feel such a schlep.

This is probably a non starter. But I keep thinking about the wilderness we are left in.
There are thousands of us, many of us are on line.
Is there any way we could "unite" and apply pressure?

Does anyone know of a celebrity of anyone of importance that has been badly effected by migraine?
Anyone actually know anyone personally.

I am really sick of being a wilderness lab rat, I am too old to keep waiting.
If we worked in the Americas, and Europe and then pulled together...
Does anyone think we could do anything using the internet?

It is really bugging me how dismissed we are....

Pen

i think i understand the general gist of this post regarding migraines....

however, i think perhaps comparing to other diseases doesn't quite fit.

parkinsons, alzheimers (even mild cognitive impairment), muscular dystropy, neuropathies, cancer, diseases of the digestive system, etc. all have their horrible sides, just like migraines.

memory disorders, for the lack of a better term, suck.

Porsche Fan wrote:i think i understand the general gist of this post regarding migraines....
however, i think perhaps comparing to other diseases doesn't quite fit.
parkinsons, alzheimers (even mild cognitive impairment), muscular dystropy, neuropathies, cancer, diseases of the digestive system, etc. all have their horrible sides, just like migraines.
memory disorders, for the lack of a better term, suck.

Probably just me, but not getting where you are coming from here.
Are you saying we dont cut it in the importance chart?
Or we arent being given enough credence given?
Sorry.

{Pen

I agree with others - it's almost like there's a tacit implication that there's something shameful about being laid low by migraine. "It's just a headache, take some tylenol and get over it". I have to admit that even I had thoughts like that, before I got bit in the butt by the karma bug - I had a fellow employee who had migraines that required her to frequently missed work, but she continually neglected going to to the doctor to try to get it straightened out. I think that irritated me more than anything, that she missed and missed but didn't try to do anything about it.

But, I do see now that a lot of times there's not a lot that CAN be done and you're lucky to find a medication that can even begin to control it. It's hard to have true sympathy for something that you have no idea about, and especially something that you can't see - Parkison's patients shake, cancer patients can painfully waste away. Where's the physical proof of migraine? Some of us have symptoms so bad that you can see it in every line of our bodies but I think a lot of people think it's "faking" or making it seem worse than it is. Why "waste" millions of research dollars on curing an unseen disease that supposedly can be controlled when there are "worse", more visible things to be attaching your name and valuable research time to?

It's sad but that's unfortunately the way scientific research works. Until there's a true, visible champion for the cause, it'll continue to go by the wayside - unless there's some accidental discovery in another research project where one of the side effects is reduced migraine. Then, because money can be made, the drug companies will expand on it.

Perhaps money would be better spent on education. All I see is commercials that say "this pill can fix you. see your doctor" When the pill doesn't fix people they get frustrated.

I think more than money for research we need money for education to cut down on the number of migraines. For example my sister has begun to have migraines. She just keeps trying pill after pill but will accept no personal responsibility for her lifestyle - no matter how often I tell her it can make a difference.

If the general public has fewer "headaches" then those non responsive to normal treatment will be considered more of a disease.

I understand why stars don't address their migraines. It can interfere w/ getting more contracts if they are considered unreliable. My doctor says I have fibromyalgia. I have told no one but my husband and my best friend. It is not a dx I want known. Having migraines is bad enough. If I am found to have another "whining woman" disease I am sure I will be unemployed sooner rather than later.

Probably just me, but not getting where you are coming from here.
Are you saying we dont cut it in the importance chart?
Or we arent being given enough credence given?
Sorry.

{Pen

Yes and no. Migraines are serious, but when compared to other diseases, they are not on the same importance charts.

Yes, they are painful. Yes, they make life miserable. Yes, they are destructive. And I do believe migraines are not given enough research and devotion to treatment as other diseases and issues.

However, as I think this has been my position with migraine for quite a long time, they do not hold rank amongst more serious diseases. Migraines can and often are a symptom of another disease or disease process.

We can compare X and Y against migraine until the sun burns out, and come up with comparisons that are pro/con.

I'll render migraine to this--get the best treatment you can and learn to deal.

I was told this about 7 years ago by a neuro-opthamologist. At the time in aggrevated me for hours--how could someone be as insensitive and arrogant. Years into migraines, it has incredibly altered my life. I must admit, that blasted neuro-opthamologist had good advice.

I do not think old TV stars really do anything to advance research and treatment. I may draw some PR, maybe some small amount of funding in the name of a foundation.

What really drives this is a physician/researcher that has been touched by migraine, or has had some significant interaction, like with a family member.

Moreover, what really will drive a great increase in treatment is if one of those physicians that becomes engulfed by migraine treatment arrives in a position to teach others.

This is when you see better treatment and a larger recognition. This is the force multiplyer effect.

Add in research by companies that manufacture diagnostics like GE, Phillips, Toshiba, & Siemens, we will see advances. Big pharma plays a just a large of a role.

I had the opportunity to attend a very fun event yesterday--GT car racing. Part business/part fun. I was "escorted" by my associates that know well of my issues and was watched like a hawk for any problems.

As I walked past the gates and into the paddocks, several kids in specially equipped wheel chairs with degenerative neuromuscular diseases came past. All with big smiles from the race & really cool cars. I have spent a lot of time seeing people afflicted with a myriad of problems in my travels for treatment and realized, yes, I have significant problems, but there is always someone worse.

BUT, that should never dissuade a migraine sufferer from seeking treatment and improving their situation. Never.

My .02. Flame suit on.

MGB

Those of us with FaceBook accounts can start with our friends by posting what migs are and how they affect us. Most of us have at least 100-200 friends. Each person that posts a comment will then have the post exposed to their friend list.

If you use a question then it's more likely someone will respond with a post.

Excellent idea Brent. We should all post the same question.
What do you think it should be Brent?

Lets try it. What do we have to lose???

Pen

What do you think a migraine is?

Do you know the difference between a tension headache and a migraine?

How do you think severe migraine patients are treated at the typical emergency room?

What do you think a migraine attack feels like and how does it affect the person dealing with it?

Questions also have a way of making someone dig down and connect with their answer. Even if they don't post an answer we have still triggered some thought process. Maybe some realization that they really don't know. They may not know because they have never been around someone.

If you have a FB friend be sure to respond to their question so it's get out onto the main page.

I can put this on my Mig/FMS page on there as well.
Also on Twitter.

I like it Brent.
Lets do it.

Should we start a new thread on here to get all of our members that will, to do it..

Pen

Starting a separate topic sounds good. I have had the question "What is the difference in a tension headache and a migraine attack?" up on my FB wall since this morning.

Already I am drawing some conclusions.

I know my friends are reading it.

They may think they know but don't want to risk showing that they might be wrong.

Those that don't know but don't bother to Google it real quick.

Those that don't know but did Google it.

Those that just don't care.

So the longer that posted question hangs there the more of a point(s) it will be making. Us members here know pretty much what the outcome will be. But that hanging question will trigger a lot of thought and make people maybe question themselves why they don't know.

And what is disturbing to me is many of my FB friends are people that are working in emergency medical services or used to.

My non-EMS friends will possibly wonder why the EMS people don't know but really should.

It can branch off in so many different directions. I hope all of you here with FB accounts try it and see if you can "smoke out" your friends about the question you post.