Trying to see the whole picture with activism and the community, and of course, want to keep it moving. I'm writing this because no one else has and i don't have the time not to write it. I look forward to a day where, if we have to be here, any number of posters would write it or their version of possible solutions to the elephant in our living room. It's easier to criticize, blame, and accuse than it is to solve. Solving involves taking risks with your thoughts and emotions.

i am fairly sure I am viewed as a troublemaker by some in the community, crazy by others and it's time to challenge that and issue a challenge of my own to patients, as well as orgs. I am not sure if carey is still using her signature line about having to risk being [hated?] - some such strong language - i should look it up- well being hated doesn't stop me....

But pd will stop me. I will be lucky to be able to travel to the WPC. I may or may not even be alive. This is true of all of us of course, but I'm referring to death by Parkinson and I'm not looking for sympathy - i'm looking for understanding and help

i would appreciate feedback on this view of the pd community as i see it.

There are two paradigms that we want to be accepted. paradigms are pretty heavy changes to expect but i do....we've asked long enough. Here's what we expect as patients:

we want to be involved in the decision making and carrying out of research agendas. this is the infamous table at which we want to sit and all clinical trials don't have to be about medicine. Quality of life issues and equipment via clinical trial could be increased and maybe that is happening and i'm not aware. just recruiting and participating is not enough and doesn't fill up the trials. we need ownership and to have value. this is referred tp by some as 'getting too close to the patient" . I don't see much danger of that happening.

We need to have equal footing, same level, especially online. There's the paradigm. Medical community, research community and industry are expected to include patients and it's been talked about and ignored long enough.

That's what I think was happening in the accelerator thread. Years of feeling like our lives weren't in the hands of anyone who is looking out for our interests. Debi, i'm asking you to recognize what happened and come back because the second paradigm you are expecting from us.

We are being asked to surrender our DNA to people and to put all of our medical records online. We are being asked to be a part of "changing the face of medical research." Some of us have already helped some. Perry Cohen is working tirelessly on both paradigms but we mustn't say the word pipeliners. Now I am thinking that this two way street may be conditional. However, i know it was left at an awkward place for you to just carry on. So i'm offering a solution and just asking you to come back, am shamelessly recalling your salary figure and also thinking that even the arrogance that must be forgven of a celebrity who just can't do it all should not take precedence over the possible progress that could occur from communication here. You are well and getting paid. I am sure we appear ungrateful, not this time. Can you accept that?


Your next research project, and this one with 23adnMe too, as well as any registry, involves flushing thousands of newly diagnosed out of the closet. i stayed in that closet for 10 years. They aren't just going to walk out. you need a movie or a documetary or something on a grand scale that tell about people who have suffered and died due to pipeline clogging, greed, poor decision making, and on and on to get young people to come out of that closet. i hated going to my neuro because i had to talk about it. i even had a weird smell that i swear accompained this state of being. i was completely unaware of anything parkinson until i went online.

the forum has decided to write the book and i think they should, negating the request [which i am certain would have been denied had you replied but i misbehaved and made it even easier to just ignore the request. How Freudian, but indicative that my desire to write that book has expired. However, it's important for me to say and sorry if it's a repeat, that going online and finding other pwp was exciting by itself. But nothing could have prepared us for a mega star dropping in on our lives, As Tom pointed out, when something grabs you like that and you are inspired, you want more. That was our reality and telling anecdotal stories in here may just inspire someone else, but no book for me.

That should remove any stumbling block that i can think of. What are you thinking about all of this and anyone else with thoughts? i do not like reality shows and never watched one. But i think keeping our posts public is, for patients, the only thing that truly protects them.


Patients, you aren't all advocates and you aren't all cut out for the forum. But those of us that are truly trying to do this need your understanding at the very least. I am going to say this one time and what you do with it is your business. Criticizing the orgs, should be accompanied with follow up that includes action to make it better. The patient community is quite fractured and not working together enough. The groups that have been successful in bringing about change are criticized and not acknowledged. Agendas everywhere but how many help people, actually help people? That's a question, not a criticism. To perhaps ask yourself.

ok but i'm just egotistic, a crazy troublemaker? i'm not crazy, i just look crazy. if i had even half an ego i wouldn't take the crap dished out in here sometimes. Troublemaking is debatable. ...it being so rewarding and all.

let's get real and demand that these paradigms be focused upon.
paula