Ok here comes the unsolicited lecture and advice. It has taken 6 years to meet some serious goals with the Parkinson Pipeline Project. That is 6 years of weekly meetings online and in conference calls. We moved up in the world after PDF started sponsoring us and no more yahoo meetings.

But the most important thing we had was exactly what Margaret Meade says works: "a small group of dedicated people.' Probably even more important, we have a visionary with a plan. We stuck to that plan.

Now at 6 years into the project, we are seeing the results. Amgen was a nightmare that only strengthened our resolve. It taught us so much about ethical conflicts and the reality of big business. When we first presented our amateur Bill of Rights to a select group of PD organizations they were quite negative and truly didn't believe that we would be taken seriously.

That was proven incorrect yesterday.

After 6 years we are monitoring treatments in a super database, consulting with industry, collaborating with academic clinical researchers by regular communication, continuously educating on the PPP website, presenting at conferences and exhibits.

And what results are we seeing: we're at the tables, we are in medical journals, we have been asked to write an article for a medical journal from a patient's perspective and will hopefully be published as patient advocates for PD, we are in the FDA [only cancer had advocates before PD], we continue to plan ahead and try to ignore the fact that there is no treatment at this time to save advanced patients and GDNF could have done that. PDF is sponsoring us.

Science, with all of its gucky stuff that they talk about putting into your body is your only hope unless, as Rick says, people find something themselves. It is far from perfect and frequently invalid and dishonest.

Here is the unsolicited advice:

Plan ahead, nothing happens quickly. Devise a model of what you hope to do.

Trust your coworkers unconditionally. They will come in and out with this illness. Get over the inevitable disagreements quickly and carry on.

Allow for cognitive deficits and on/off each and every day.

Meet regularly. few exceptions. The committed ones will show themselves.

Create an email list or yahoo group. Use it constantly to educate each other.

Set your goals and don't look back.

Be patient but don't ever give up.

Let others know what you are doing.

Should you feel guilty if you are not an advocate? Of course not - that's like saying everyone should learn how to sew. I actually used another girl's sewn shorts and turned them in for a grade in Home Ec after she had turned them in and gotten her grade already. Got caught- only course I ever flunked - junior high Home Ec.


START NOW.

Is it a full moon?
Paula

Hi guys and gals!
Paula alerted me about this thread and am I ever glad I read it. Now to attempt to respond. I have so much I want to say, but the relay switch from my brain to my hands has a short (how's that for a simplistic explanation?) lol

First - Greg - I luv ya, but you've got it all wrong. The Fox Foundation thought just like you for years and said "if we find the cause, we can cure it." That would be nice, but what about this ESTIMATED 1.5 million (4 million world-wide) who are getting worse every day? And Parkinson's being an age-related illness (although all of us are "young" Ahem!), what will we do with these77 million babyboomers coming along? Do we need to be finding the cause while they degenerate?? Of course we do, but it's just not the most urgent need at the moment. If the toilet is overflowing, you take care of the overflow and find the cause later. With Parkinson's, the need is definitely urgent and pressing to take care of the here and now.

And I disagree about your thoughths on stem cells, gene therapy, etc. that therapy is treating this stuff systemically, and as PWP's we all know that PD doesn't just affect your nervous system: it messes with your bladder, your bowel movements, your lungs, your digestive system, your lymphatic system, your sight, your voice, mood, your behavior, . . . need I go on? I have always contended that PD is connected with out autoimmune system - hence why so many with PD also have diabetes, etc.

Back on topic - Another example, two of my kids are anesthetists. I asked one day how the stuff they gave the patient to keep them asleep while being cut on worked. Both replied, "They don't know - it just works." Same principle here. DBS - they don't know why it works - it just does, so Medicare and insurances approved it because the cost of keeping an advancing PD patient "healthy" is astronomical.

Michael, you are always right - you are what you eat. And Vietnam gave proof that environmental toxins are ONE of the causes of PD. I think the psychiatrists need to pitch their hats into the ring of likely cures, also. PD seems to migrate toward people who like things done right - they worry more - they are their own worst enemy at times, and on and on. Maybe we keep our bodies in such a stressed state that it lets down the gate of protection for all these other environmental insults.

Now - the REAL reason I am replying to this thread. Rosebud (hi there!), I think it was you who said we (patients) didn't have a voice in helping find a cure. Remember when Paula told you about the roundtable of researchers that included patients in the discussion? It is sometimes unbelieveable to me, but we ARE having a voice in this messed up system. In fact the Pipeliners and like supporters have been banging at the doors of research, so they are cracking the door just enough to let us enter. And they're starting to listen. We plan on having many more roundtable meetings on how to fix this sluggish approval system for new treatments, but I was fortunate to be one of those patients sitting at this table. (and Perry and Jean B. who post here).

There we three patients sat and paula, linda and sheryl (they were listening via a conference call), on the 40th floor of the New York Academy of Sciences, looking down on the Brooklyn Bridge and what used to be the World Trade Center. We were surrounded by scientists, clinicians, pharmaceutical CEO's, researchers, and the whole gambit - and why were we there? Because they were "listening." And to whom were they listening? Us - the patients! Amazing, isn't it.

We talked about things as simple as packaging needing to be made more suited to PWP's to the reasons for inflation of the placeo effect.

We have got to quit sitting on our patoots and go for the jugular. Not that we want to stir up trouble, but we want this research and clinical trial process to stop being about profit and start being about treating for a better quality of life or to find a cure.

I will have to ask Nike's permission, I'm sure, but I wish we would adopt this mantra - "JUST CURE IT!"

I hope I didn't make anybody angry - you asked for opinions, and you got mine.

Peggy

That advice is worth paying for. I am impressed.

michael b.

Can you send that comment to my wife?
Luv ya, Peggy.

michael b.

It is possible that the remedy to cure PD will be found before the cause, and the remedy will lead to the cause. In the meantime we are not alone in searching for causes. The big Pharm. companies have no reason to search for anything but remedies, but any MDS, neurologist, medical scientist must be as anxious to find out what causes PD as we are. Research and speculations on causes are not lacking, a myriad of theories keeps turning up.
And every time a new theory is aired, it seems so likely, almost all of the proposed causes fit most of us. Prenatal stress, Thyroid deficiency, hormonal imbalance, inflammation, head injury, severe childhood illness, a virus, chemicals, additives, yes and yes, they all fit, they all make sense.
I think it quite possible that this unique forum, with our white rats and undercover PD detectives and operatives may discover both cause and cure. Why not?
Press on Everett and Ron and Indigo and Zucchiniflower et al, the answers may be within reach, and hopefully the remedies will be obtainable, successful and harmless.

Forever optimistic, not always completely realistic
birte.

My face burns from blushing, Carolyn. Now that I've got it, though, what do I do with it.

michael b.

Peggy-
I forgot you were a fellow Tennessean - where 'bouts? I'm just south of Knoxville.

More to the point, your statement above speaks wonders. The only good thing to come from HIV is the concept of the activated patient. Our interests don't always coincide with those of the scientist or the company, and if we don't make a fuss then we are done for.

But we have to break out of our own PD related apathy. It is perhaps the most insidious part of the damn disease. Creeping in on "little cat feet" it steals away our ability to get over that hump. Those of us who still have not succumbed to it have to harangue, tease, motivate, and generally be a pain to the rest in hopes of generating some adrenalin or something.

So to any who find us boring, my apologies. To the rest of us, keep irritating them - it's their/our best hope.

-Rick

Rick
Then we're neighbors! I am just about 100 miles NE of Knoxville! Send me a private message with your email address and we'll try to figure out a meeting.

I agree with everything you are saying. And to those reading, please don't say "I have nothing to contribute." That is pure BS!!! A phonecall - a letter - a story - a picture - anything that tells the sworld what it is like to live with t his horrible disease. And guess what? You will feel so much better if you do take charge of your own care.

True, we don't know what causes PD - but scientists know more abouto PD than any other neurological illness. We KNOW what part of t he brain is affected - we KNOW that if you replace the dopamine loss - people get visably better - and we KNOW that it isn't given the designation of being a serious and life thrheatening illness in enough circles to get it cured. If it weren't such a terrible wish, I would wish thaht we had the numbers of cases that HIV has - THAT gets attention!

We can cure this thing - it just takes money - priority in funding - awareness - and PATIENT INVOLVEMENT. Guess which area we need you???

Who's got the sign-up sheets???

Peg

I had hoped to get back online last night to respond to some of your replies. My ISP went down so it didn’t happen.

I want to thank every one that has replied so far to this thread. If nothing else, I have sparked conversation on a subject that needs to be discussed. Don’t ever worry about offending me with your honest answers. I don’t get offended easily. Some of you said I wouldn’t like your opinion. It’s not whether I like your opinion or not. (There is an old saying about opinions being like…. They all stink) It’s about you telling it like it is. The way you see it. In a way I have been surprised at some of the replies. Some of you have been holding out on us. You folks have really put some thought in to your replies. Who told you I’d be posting this subject? Anyhow I appreciate you being so honest with your answers. Rosebud, I’m glad you know how your car starts now.

So maybe the direction of research isn’t a problem. I would still like to see someone look into it the way I described or something close to it. There is certainly room for it out there in research land. I feel there is something there that has been overlooked. Something fairly simple. From reading the information that Michael directed me to at the Lasker Foundation, I can see why Parkinson research skewed in the direction it did. Rick may be correct in that they are looking for a magic bullet. Peg, thank you for being on the front lines and setting me straight. It’s good to see the patient is finally a part of the solution.

GregD

You're a good man, Greg D. Want to join PAN or t he Pipeline Project??? Send me a private message.
Peg