tena, www.surveymonkey.com isn't about pd.

it's just a site that anyone can use to make surveys. a workhorse type of site. they also have mailchimp to send out emails. it's just a play on a name. nothing derogotory.

cs, thanks for that post.

I wrote this in response to an email question from a friend last night and think it could be repeated here.

If you are going to attempt to solve a problem so profound as PD, shouldn't you have the problem in front of you? If we are going to have subtypes identified, wouldn't it be helpful to have different types of pwp available to question over and over, to test your hunches, to offer their experience about things that we know.

So many decisions come from a lab made by people who don't know the problem, have never even seen the problem that they are trying to solve.
Wouldn't it be helpful to have examples of the problem(s) to provide some answers?

In case someone would reply with this: "the neuros can provide these answers.", I can only say sincerely and respectfully , "no they can't".

Tena,

I agree with Curious, the monkey has nothing to do with MJFF, it's the place where the survey was written.

paula

Paula: Right on, girlfriend!!!!

My message to all constituent groups is very much the same and fairly simple: please do your best to understand the patient. We don't have the same symptoms; we progress at different rates. Do we have the same disease? The overall failures of recent clinical trials, despite good results among some trial participants (including the placebo effect) suggests the pool is diluted. Even though we have learned a lot about PD over the past 10 years, we face many more to a cure. But we can't cure or even find more effective treatments for PD unless we understand it. And I don't think we can understand it unless researchers listen to patients to learn how PD lives in our bodies.

MJFF is the gold standard for PD research; your new online resource for researchers is a great thing. I certainly understand why it may not be the appropriate venue for patient input into the research agenda, but there is no other. Some basic researchers go their whole lives without ever coming in contact with a person with PD, while we seem to make clinical researchers uncomfortable. I don't think that's a good excuse to not interact, to close off an avenue of discovery. Maybe we can think of a way for researchers to have access to the important information we carry with us 24/7. Surveys like this are a strong step in the right direction. It was a Harris Survey in 2003 that revealed patient frustration with on/offs and lack of provider and research attention to non-motor symptoms. The results were a surprise to everyone but the patients.

In the meantime, I wish researchers and funders would pay attention to the revolution that is occurring in better care for PD in several centers around the nation. Innovative, creative neurologists and MDSs are working with their patients to dramatically improve their quality of life RIGHT NOW using techniques and pharmaceuticals available RIGHT NOW. These practitioners share a common quality that is decidedly low tech - they listen to their patients. They understand how PD affects people and their families, and the importance of an individualized approach to care.

Katie Hood and Todd Shearer will be appearing with one of these innovators, Dr. Monique Giroux, at the MJFF Roundtable in Bellevue , WA on January 20. She is my doctor. I attribute to her the reason I am doing so well after my PD diagnosis 10 years ago. She is rigorously scientific, and would like to prove that her approach brings results. Funding for these kinds of projects should be made available.

Communication is the key. Thank you for this opportunity to be heard!

<Q>
"My message to all constituent groups is very much the same and fairly simple: please do your best to understand the patient. We don't have the same symptoms; we progress at different rates. Do we have the same disease? The overall failures of recent clinical trials, despite good results among some trial participants (including the placebo effect) suggests the pool is diluted. Even though we have learned a lot about PD over the past 10 years, we face many more to a cure. But we can't cure or even find more effective treatments for PD unless we understand it. And I don't think we can understand it unless researchers listen to patients to learn how PD lives in our bodies."
<Q>

I would add that researchers and physicians (and patients too for that matter) must get away from the view of PD as a one-dimensional neurological problem. Neurological problems don't show up until 80% of the damage is done. There are decades of subterranean erosion before the first tremor during which the immune system and endocrine system and GI system are the arenas. Eventually, so many critical components get worn that we lose our "bounce" - our ability to respond efficiently to our environment.

Hi all,

I do not think I can add any more than whats already been said, but here is my two cents worth.

CS, Indigo, Paula, Rick.......I agree with you said, but the researchers as a group can do a bit more. These days research is more for papers, patents and of course profit and not necessarily for patients. My hope as a researcher is that contact and communication with the patient reminds us why we are in this business of R&D in the first place. Next comes the partnership and sharing information. This initiative has to come from the scientists and the scientific organizations and the funding agencies. For example, Invite patient advocates or patients to participate in scientific meetings (atleast one session) and let them talk to us. What good is research if you cannot explain tothe person who might benefit from it?
Thanks for listening.

Girija