What are we actively doing to get the PD cause in front of the public?? All I see is cancer, cancer, cancer! JennyR

[JennyR]

[NMelody]

Jenny,

Be sure to check out the Parkinson's Action Network. I became aware of PAN after my father being diagnosed as a person with Parkinson's last summer. Since then I have traveled to Washington DC to speak on Capitol Hill to legislators and most recently named an Assistant State Director for PAN. I agree Parkinson's needs all the help it can get so check out PAN and join. Then you can continue to spread the word as well!

Nikki

[ronn]

Jenny, We have a bit of a problem here. "WALK FOR THE CURE" was a great slogan to put on a cancer bracelet and use for publicity. On the other hand, "WALK TO TRY TO FIND OUT WHAT IT IS, WHAT CAUSES IT, WHO GETS IT AND WHAT CAN WE DO FOR IT" is not all that inspiring for a Parkinson's event. Besides, it would never fit on a tennis bracelet. Before being diagnosed with PD, about all I knew about the "disease" was that doctors say it isn't fatal and that some pretty famous people have had it for years and seemed to be doing OK. I didn't have a clue as to whaat a heartbreaking, debilitating disease it is.

[JennyR in reply to ronn]

Good points Ronn. I just didn't give it rational thought You make some interesting suggestions. Thanks. JennyR

[Susie01 in reply to ronn]

Perhaps we should all go out and have a "walk for the cure", do it without meds and show the public what we deal with on a daily basis, that some of us are unable to walk or fall when we do, that the tremors can be so bad that limbs move without direction from the brain, that there are times when we cannot speak, that words come out jumbled, slurred or not at all.

I have a bit of a "bad attitude" today, sometimes it is just a lot to deal with...

[Hidden]

Because cancer kills more people I have Parkinson's now for 11 yrs . The way I see why not all diseases

[Hidden]

I think we all do as much as we can and there are some magnificent 'voices' out there take alexflynn.com, also search Becky Hurd and Illuminate with Allan Amato, then there's David Greaves and 'Pedal for Parkinsons', all UK based further afield there's My Angel My Hero, and Enzo Simone .... all worth a look and our support

[Court]

This is similar to a question I asked a while ago. I got some interesting answers. My husband has had cancer and that diagnosis is something I never want to hear again.

Personally, I do not think you can compare different, and I try not to use this word, diseases. Each condition is important to those it affects. I quite agree that Parkinsons has a low profile and that more needs to be done to educate people that it is not just a tremor, and yes, in rare cases it can be fatal.

How wonderful if one day we could hear "a cure has been found for Parkinsons". We have to believe this will happen.

[maryedith]

I feel because PD is a condition which is more prevelant in older people it tends to not have a high profile. Dare I say ageisim. I would be interested in knowing where Parksonsons stands in relation to Governement funding.

[Moderator_1]

JennyR

In answer to your question about Raising awareness of Parkinsons yes yes yes. That is central to why Parkinsons Movement started. It is a new initiatve with global intentions.

Have you checked out the main site?

[Sassynailart]

I personally spread information by being open about my condition and side effects to all I meet. My own "Art for Parkinson Disease Research/the Sassy Nail Art Collection" not only has been successful at raising money for research but in creating an awareness of the disease. I have a Facebook site and the web site keirdesigns.webstarts.com/i.... I interact with people worldwide. Please "like" on fb and help me spread the word.

[Susie01 in reply to Sassynailart]

That is wonderful!

[Sassynailart]

Google me if the site doesn't open directly. I am Michele Keir in Rhode Island. You'll find some of the publicity my Sassy Collection has received.

[JennyR]

thank you for your help. Although I have this nasty condition, my neurologist says, "of all the neuro conditions I could have diagnosed, this is the least debilitating for YOU." Not for everyone else diagnosed, but for ME. I will be checking with you regularly. Being new to a program is not always easy.

JennyR

[margie]

I have traveled across the USA , "RVing with Parkinsons" spreading the word about the symptoms and possible causes. I passed out brochures and have a blog spot: rvingwithparkinsons-margie....

Other health problems have made me stay at home, but when the weather gets better, we will be off again. I also have another site with medical information about research and etc.margiesjournal2.blogspot.com/

Informing everyone about this disease can only help. The information and all is free.

Margie

[ram927]

I;m working on a awareness day at the Badlands in SD I hope to put together a Pancake feed followed by a 4 mile walk and topped off with BBQ for lunch hoping to have it ready by Sept 12 lo for pics and info on face book

[Susie01]

There is sooooo much education that needs to be done! I was actually told by somone who's husband has cancer that I should just "take a pill and get over it, after all, it was not cancer".

People are so mis-informed! I do not want to sound callus, but now days many cancers are "curable", PD is not. And yes, his cancer was totally related to the 3 packs a day of cigarettes that he smoked before the cancer was diagnosed. On the other hand, I was always seen as the "health nut"...

[JennyR]

Your story is so real and really makes me sick - the story, not you. The "Take a pill and get over it after all it's not cancer".

We did nothing to contract this after all. JennyR