oh i was just directing some random thoughts. not to anyone just everyone.

The problem lies in the the perception of PD by most, especially those who manufacture and market the treatment.

The gold standard of therapy (dopamine replacement for 40+ years) is the holdup. In spite of its side effects (on/off phenomena after 5-10 years of usage, dyskinesia, dystonia, etc.) , levodopa (Carbidopa/levodopa) works - maybe too well). In a matter of minutes, one can observe an invalid, akinetic PWP transform into a funtional, near "normal" person by swallowing a pill. But these same observers don't stick around to see what follows, and we as PWP aren't telling them. I actually had a CEO or one of our orgs say "Alzheimer's is a horrible disease; sufferers end up like a prisoner in their bodies." I reminded this person that PWP end up the same way - and most are aware of their "jail" sentence, where ALZ patients aren't.

We are being passive. We aren't making enough noise. We need to polish up our marketing skills. John Q. Public just sees that the pill we took an hour ago works. We should be in the public arena showing everyone, especially potential sponsors, what follows.

In second place as the most common neurological illness, there are approximately 4 million people world-wide with PD. In first place is Alzheimer's with only a little over 5 million. But ALZ seems to get loads of attention.

I have tried to analyze the reasoning behind the public's high interest in other neurological illnesses and have a few theories, but maybe you can help brainstorm. It isn't numbers - with only a small difference in ALZ's population. Is it because PWP are seen most of the time in their "on" state? Does it hurt our image to not talk more about non-motor symptoms, like depression? Are we hiding in our homes when we begin to freeze and festinate (taking baby steps)? And finally, does the fact that there are three major orgs for PD and only one for diseases with meganumbers, like diabetes and cancer hurt or help our image?

Do you have any answers?

Peggy

I think a big part of the problem is that, as you say, the public sees us when we are functioning. Ok maybe we shake a bit, or drag a foot, or speak slowly. But when outside our homes, we do our best to be as “normal” as possible (at least I do). If I am feeling particularly bad, frankly I stay home because just riding in the car is torture for me.

My cousin has MS. And when she is functioning well, people yell at her for parking in handicapped parking spaces. Hasn’t that happened to many of us? And I have been berated by postal service employees for using on line printed customs forms rather than hand writing out those forms in 5 layers! Sure they are contrite when I tell them about PD, but why should we go through this?

I know that Sheryl & I are out there speaking, but we’re speaking at PD conferences. I think it would be terrific if we could speak at neurology conferences. But how to go about that when there were still objections by some neurologists to having patients attend the WPC in Glasgow?

Something else that may work is for non-parkies to see “the lighter side of PD.” When PDPlan4Life is at the podium, Sheryl tells her hilarious stories about life with PD. PWPs nod and laugh because “yes, that’s what it’s like.” And the “temporarily healthy” laugh as well, while shaking their heads, but ultimately they remember her stories. As any trainer will tell you, the audience remembers personal stories, and they remember humorous personal stories best.

And yes we need to publicize Parkinson’s, but how to go about doing that? How about some PSAs? If you haven’t watched the videos from the WPC, that’s a great place to start. Take a look at the 3 short PSAs from Norway – hilarious! OK - what I had forgotten is we have the power of the web. We can upload videos to YouTube, to blogs, to websites, to facebook, and to hundreds of other social media. We have at our fingertips a powerful and free medium to use -- social networking to share our message(s).

I hope that this thread & the Advocacy 101 thread give people ideas. The more voices, the better.

Jean

I agree with all you said - we have work to do!
Quoting you: I think it would be terrific if we could speak at neurology conferences. But how to go about that when there were still objections by some neurologists to having patients attend the WPC in Glasgow?

I believe before we can be invited to these neurology meetings, we need to do a better job of selling our professionalism. I'm not saying that we aren't professioonal in what we do - we just can't seem to get the world of neurology to see us as equal team players (if not higher - lol). We can begin by writing comments everywhere they talk about PD (my dream is to someday write for Huffington).

Remember when the GDNF issue first surfaced? I remember that you and I were published in the comment section of Lancet Neurology. I suppose I am suggesting that we comment in scholarly periodicals (I wish the Fox Foundation would allow us to post in their online research forums). We need to write Op Eds, letters to editors, and stuff like that and show that we aren't just "patients," but want an active role in our advocacy walk.

I'm sleepy now, so I'll go dream of other ways to get in with the neurolog incrowd . Did you ever do a Google search on yourself? It's amazing what is picked up!

Peggy

Peggy,

I am a firm believer in grassroots movements. And creating a grassroots movement using the power of social networking will be a force to be reckoned with.

I'm still researching different social media and how we can work together, but I'm convinced this is the way to spread our message. Just as the print media is rapidly fading away in favor of Internet-based media, we should use social media to spread our message. We are not limited to trying to get our message on television. We have free access to social media: video sites, podcasts, communities, blogs, message boards, photo sites, twitter ... and more!! The mind boggles at what we can accomplish.

This is possible. It just takes people who are willing to take first one step, then another. To take action, not just talk about taking action. So for everyone who is interested in pd advocacy, why look into this? One person can do it. A handful of people can do it. What is your message? Can you make a plan on how to share it? And then just do it?

I will be doing what I can. I hope others in the Parkinson's community will consider this.

Jean

Michael J Fox defines PD for many - the relatively mild writhing Ldopa Dyskinesia ... along with him saying that there's nothing he can't do despite having PD.

Mike has done a lot for us, but I wish he'd show the general public what PD disability really is - Bradykinesia, Tremor etc.

MikeTTF

We can do this for ourselves,I am already trying to set this up ,the clues are still there Laura.A friend with PD made the following statement and his words are simle but true.
'The patient is the key to the cause and the path to the cure
The cause is hidden in my body.
I believe that every patient can contribute to the understanding of this disease”
I believe that if we join together with millions of fellow victims we can make a significant difference'

Empower patients we can only do that ourselves.

I agree with Paula and all of you who understand that it is the patient's job to define the disease. There are many ways to take direct and public action that makes a difference. Through social networking, public speaking, organizing, promoting, writing, and serving on advisory councils as many here do now, we all have influence.

The crucial connection that must be made and firmly established is with the research community - to inform the direction of their research, to praise and encourage when they "get it;" to educate and persuade when they don't. Arrogant scientists remind me of the stereotypical man driving the car, hopelessly lost, but dismissing the passenger with the map. They'd rather continue down dead end roads than ask for directions.

We can't, however, drive the car or arrive at the destination by ourselves. We require champions with money to fund research that makes sense. Nobody is doing that better than MJFF at this moment in time. They deserve our support and need our attention. They "get" it - but we can't relax and let them, or us, fall asleep at the wheel. Or take us to Cleveland when we really need to go to Toledo.

Peg - as to your question about the attention Alzheimer's gets -- it's because it is 5 to 10 times more prevalent than PD, and in many opinions (mine included), a million times worse. It is a disease destined to devastate a generation. Please read this op-ed by Sandra Day O'Connor from the NYTimes on Oct. 27.

Also, I believe that any advances made in Alzheimer's research will benefit PD as well. It is their model that MJFF is following in the design of the PPMI biomarkers study.

Link to op-ed
http://www.nytimes.com/2010/10/28/op...r's&st=cse

Excerpt

Starting on Jan. 1, our 79-million-strong baby boom generation will be turning 65 at the rate of one every eight seconds. That means more than 10,000 people per day, or more than four million per year, for the next 19 years facing an increased risk of Alzheimer’s. Although the symptoms of this disease and other forms of dementia seldom appear before middle age, the likelihood of their appearance doubles every five years after age 65. Among people over 85 (the fastest-growing segment of the American population), dementia afflicts one in two. It is estimated that 13.5 million Americans will be stricken with Alzheimer’s by 2050 — up from five million today.

How wonderful to wake up and read so many great suggestions for helping ourselves be the catalyst for the change we want to see. My one caution is that words matter. What we put out there will be used to define us. I am NOT a victim. The many definitions of this word imply that victims are powerless. The day that we accept that we might as well curl up and die.

vic·tim (vĭkˈtĭm)
noun
One who is harmed or killed by another: a victim of a mugging.
A living creature slain and offered as a sacrifice during a religious rite.
One who is harmed by or made to suffer from an act, circumstance, agency, or condition: victims of war.
A person who suffers injury, loss, or death as a result of a voluntary undertaking: You are a victim of your own scheming.
A person who is tricked, swindled, or taken advantage of: the victim of a cruel hoax.