Laura
You always come up with some extremely thought-provoking comments. And most of the time, they are both valid and reliable. I think we need a totally redesigned approval system, along with a pressing move to get experienced patients a place at the bargaining tables of important stakeholders.

I believe the research world would be amazed at our experiences, capabilities, and knowledge. We have much to offer (and our services are cheap!). I am not sure which group you mean in your comment about a newer group who has done lots of surveys. Can you message or email me with more specifics before I comment here?

You are a well-read and prolific writer. You could help in that capacity . So when and where do we sign up?
Peggy

Laura, perhaps Parkinson's movement might have something to offer you, or vice versa, there are YO people there with drive and a real will to make things happen globally, and perhaps this is an energy that could be tapped into. There are certainly people your age, creative and capable, and perhaps short video could be a place to start. Your posts are always so full of life and ideas, hope you are finding some of these people and making the connections you need.

You have a strong voice, much appreciated, and a will to see this stuff happen.

Don't ever get disheartened, there is always tomorrow, and another attempt at getting the world to take a fresh look at PD.

Olsen, I too found it hard to read your story, this should not be happening. I have a real belief in medicine being there for the patient when they need it, and know that the reality is often very far from that.

Lindy

Olsen,
Has your husband tried applying for a DBS study at the NIH / NINDS ? They might have more liberal criteria for participants. They are currently recruiting for a study – Deep Brain Stimulation Surgery for Movement Disorders -- the clinicaltrials.gov record is at:
http://clinicaltrials.gov/ct2/show/NCT01581580

When I was at the NIH last year for another study I talked to some of the clinicians who were also working on the DBS study, and they and I thought it might be a good option for me. They use more advanced techniques and equipment than our local neurosurgical center can provide and they complete the electrode implantation surgery in one session; also provide good follow-up care and adjustments . The NIH covers all medical expenses, plus traveling expenses, hotel and food for the participant and a care giver. I decided not to have dbs surgery at this time, but if I did I would have seriously considered this option. A member of our support group did participate in this study last year and he had only good things to say about the medical team and the care he received . He said he’s doing well. One more thing to consider though is that at this time, if you have dbs , that will probably exclude you from joining gene therapy studies . Lots of decisions…

What do you want to tell people, and who do you want to tell it to?
The challenge is to find their e-mail addresses - every PD org, every PD blog, and every PD clinic, every PD drug maker, every PD research group, every PD doctor, and.... every PD newbie.
And then send them very little. Not having the resources to send a lot. Just once in awhile, send out a broadside, or a teaser, or a declaration; maybe just one topic at a time.

Parkinson's experts want to have a word with you, about (place topic here).
(We, who have Parkinson's, are offering you expertise you will find nowhere else - the highly specialized knowledge and experience of those who have the disease.)

Hello Bob, thank you for the info about the NIH. We contacted that entity early on in his disease process. He did not qualify for any of the studies that were underway.
Our neurologist maintains no one will operate on my husband, given his current constellation of symptoms. that surgery would make his condition much worse.
Our options are now so limited and most of our energies are directed toward just maintaining, an energy depleting situation. We both continue to have hope that something will be discovered that will help.
This interchange has provided impetus for contacting Dr. Deborah Mash at Univ of Miami again to probe potential use of Ibogaine. will let you guys know what transpires. Last we communicated, there were no plans to test the drug in PD, though she did express great interest.

copied from the clinical trals forum. this is a typical conclusion to a drug trial:

Join Date: May 2012
Posts: 1
I was a Neurologix Phase 2 participant. I got the sham surgery in 2009 and I was scheduled to get the real procedure in Nov 2011. The procedure was cancelled that same month due to Neurologix financial issues. The researchers I was working with did not know of anyone willing to pick up where Neurologix left off when I talked with them in Jan 2012
http://neurotalk.psychcentral.com/showthread.php?p=87557#post87

Olsen,
Linda makes a good point regarding querying the criteria for DBS.
I was told many yrs ago there was no way DBS could or would be done for me.
Luckily I queried that particular neuros reasons and sought a second opinion.
Had it done 8 yrs ago and it has worked out very well.

thanks to everyone for suggestions and encouragement. We have an appointment with Richard's neurologist today(our every 3 month appointment) and will ask again about DBS. madelyn