My response here won't be nearly as witty or eloquent as anyone else who has posted here, but it's from the heart.

Eight years ago many of us were stepping through life on faith . . . faith that whatever the doctor prescribed we did it. If he/she said "Take two of these every 3 hours," then by golly, that's what we did. If we cut ourselves and the doctor said, "We need to sew you up," then that was it - case closed. We actually believed that all professionalsl were (ahem) - professional, and all ooof those working in research for Parkinson's were personally connected and dedicated to finding a cure. We thought all of the Parkinson's orgs really did care about helping all of us share the burden and find a cure. What I am about to say is "reality."

Eight years later we have learned so much more - and it could be that we know "too much." We found our safety net on the internet when a bunch of young onset people with Parkinson's had their lives interrupted by this devastating disease that we didn't understand and were too overwhelmed or embarrassed to ask anyone about. You may remember some who don't visit here (but may still lurk around at times) that taught us so very much.

There was Michael - the former teacher - painter - who found success in selling some imported furniture. Michael knew everything about nutrition - antioxidents and toxins in our environment. I really miss his sense of humor, but we learned that just because the FDA has "approved" something doesn't mean it is good for you - and it may, in fact even be bad.

There was Em who kept her identity very private and was so bright, but would not lay claim for writing anything for fear that the disability police would catch her having all her faculties and make her give up her long-term disability. I still keep in touch with her - and she just had DBS.

Charlie still sticks his head in on occasion. This guy impressed us so by being the lighting director on the popular comedy "Frazier." We watched as Charlie struggled with working and tryiing to keep up with his 5 kids and wonderful wife who designed costumes for Disneyland. Charlie battled this disease and has now had DBS and has helped so many who had questions about this therapy.

Mischef from Canada let us walk with her through the fetal cell trials - having had sham surgery the first time. Then her dyskinesia became so bad after she got the "real thing," that the study was halted.

We had caregivers like (What was her name???) from Australia who took care
of her hubby - Fabs. She could bring the "happy" out of everyone. My list goes on and on - and I hope some you who walked that part of history with me will mention a story or two. But what I am trying to say is our "purpose" for coming here is a 180 degree difference today.

We held the hand of Tim, who was misdiagnosed as having PD, but had MSA, one of those really bad boys in the Parkinson's Plus group. Tim the pharmacist lost his job and began to fade fast - and he looks down from Heaven on us today. We were vicariously living that hell with him as he became bedfast so quickly as his wife and two young kids tried to understand.

We had Bren and Nan who started the "reality" thing with PLWP. Everybody met at a rock in Central Park at the PD Unity Walk one year, and there it began. These "people" authoring all of those posts were real - flesh and blood - who figured out that we had a lot to offer each other. And we did – we chatted regularly and talked over the phone and everyone cared about finding ways to cope with Parkinson’s.

Today, our eyes are set on the prize – we have let 8-10 years pass by with researchers yelling “A cure in 5 years.” We became weary of the pharmaceutical companies and researchers crying “Wolf.” Today we have the expertise and time vested in knowing about all the ins and outs of getting treatments approved. Many of us have given our very own bodies (while living) to science in hope of finding a cure. Yet we wonder how many “Five more years” it will take.

I still love the social part of being here in cyberspace. It makes me feel warm inside to help someone else learn about this disease I have lived with 14+ years, But I also have a mission – find a cure – before I become one of the statistics. This is reality. We cannot pretend it away – there is an urgency that we have never experienced so vividly.

HELP – HELP – HELP! Any way you can – but help us to restore trust in each other – in our pharmaceutical industry – our organizations – and in ourselves. Don’t you dare come here trying to “sell” us something – we only want the real thing.

Now I’m off (meds not working) from getting so emotional. You take over and I’ll be back later (sigh)
Peg