There are many ways you can speak out and let your voice be heard. Here are just a few ideas:

• Would you like to lobby congress on behalf of pd issues?? Join the Parkinson's Action Network
• Have you participated in clinical trials and would like learn more & help others? Look into Parkinson Disease Foundation's Clinical Research Learning Institute (CLRI)
• Would you like to mentor the newly diagnosed? Contact your local parkinson's org
• Do you have many contacts in your community? maybe you could hold fundraising event(s) for one of the pd orgs
• Are you a good writer? You can write letters to the editor or op eds about issues important to pwp
• You can contact your local media about pd issues
• Join a support group ... start a support group
• Join a clinical trial
• Start a blog... join social networking groups ... start a website ... talk about PD to everyone you meet

It's all good & the possibilities are endless!

Thanks for listing many ways to be involved. All the important in their own ways and hopefully lead to a common goal. We have such as diverse group of people here, that is our strength. Lets make the best of it. Thanks again!

girija

I can't say enough about the importance of considering a clinical trial. It could be anything from being a healthy volunteer, to trying a new medication, to taking part -- like I did -- in experimental surgery to see if DBS can be of benefit to younger folks earlier in the course of their disease. It's the ultimate volunteerism!

I agree completely. I joined my first clinical trial 6 months after my DX. It was for a new drug that MIGHT have slowed or stopped the progression of PD. It failed ... But it led to other trials/studies that I have participated in. I have no regrets.

Thanks!

I have participated in five trials to date. The last one put me out of trial participation in the future.

I've spoken to Dr. Dave about this - after he suggested DBS to me - I told him I'm saving myself for a new treatment clinical trial - if at all possible. And since that will likely involve brain surgery - that would make me ineligible for many other trials ...

Jean, love the concreteness of your suggestions - very helpful.

But I think at this point it does matter what the subject of a clinical trial is. There are limited amounts of funding and support for these things. Will it really help us to consume limited resources by testing five more mediocre at best dopamine agonists in hopes that someone can pull some kind of patent payoff for a little while?

What about emphasizing support and enrollment for trials for stuff that is really different from the existing approaches - for nutritional research, for example, or more intensive physical therapy research? My doctor's office says they have been looking all over the USA for nutritionists trained and skilled enough to address Parkinson's Disease and found virtually no one except the lovely lady at the NPF forum.

I have been in a nutritional clinical trial myself for the Ketogenic Diet actually, but very small and while the results were promising, I've never heard anything about it. In terms of the medications that have been tried with me, I feel like my whole treatment history has been a series of clinical trials really.

There are so many concrete issues to address in Parkinson's - I think it totally matters where people put their energy, whether on the researcher or volunteer side.

Fiona,

Of course! If pwp don't support the topic of a trial - then they shouldn't participate.

But there are many clinical trials out there that i support. For instance earlier this year my husband & I participated in a trial sponsored by the PSG -- the goal was to identify biomarkers for PD. Earlier this week the trial center called me to say that the PSG is working on a new biomarkers trial - i told them we'd be happy to participate again.

Fiona said:
There are so many concrete issues to address in Parkinson's - I think it totally matters where people put their energy, whether on the researcher or volunteer side.

And I totally agree with you! But what is important to me may not be important to you.

True, that, Jean. I was just urging people to consider what it is they were committing to, now more than ever. Absolutely, find something one really believes in and get behind it, or push for things that haven't been considered.

Fiona, everyone here has their own strengths and talents. Using those talents in advocacy will make their efforts that much more rewarding.