I am just too sick now to let feelings or events fester. This forum has such wonderful, caring people that to me it's not worth it to take jabs at each other about this MJFF thing.

I'm just going to relay how the thread came to be and what I have been trying to do with MJFF by writing to mike, not MJFF, with no luck, for quite some time. i've written him for years because i was one of a group of people who met him online in 98. I've told that story. He responded very infrequently but did other things to let us know he was reading - especially during GDNF and the week of the Rush Limbaugh event. He answered three times that week and i had enough energy to write quite a few people that week. lol

Eventually, my emails become less informative or necessary and more dumb. This may or may not be my sinemet "madness" as I call it and have written here about several times. I finally realized that it was ridiculous, that I was doing something that wasn't rational, kind of like punding. I needed to stop and have cut way back, but I still write when I want to let him know something that may be of interest, which he has still given me permission and a means to do. I have backslid a few times recently with personal rants, but for the most part I've broken the frequent email habit. Mike hadn't responded in a year, so I was slow to stop it, just like everything else I do, but it was also true that I was using the connection for energy fuel; i know that those who know me understand this relationship - some are also still writing him too - knowing him from when we all got together online 10 years ago. They just don't write about it on the forum.

I was almost always asking him to communicate with us somehow on the forum, or through pipeline. I must have asked him that a thousand different silly ways. He didn't read them all I'm sure. I don't feel that I was selfish in anything i asked, even when i asked him to share his fame to give us validity....haha. It was never "will you do this for me," but always "can you do this for us." And sometimes I didn't ask him anything; would just share stuff.

He used to respond sometimes. But he stopped after saying he'd find some time for us at BIO but didn't - he couldn't - I know that. But I guess it taught him not to make any promises he couldn't keep to folks like me and he hasn't responded since.

Why am I being so specific? Because the last thing we need here is to have any false illusions about Mike and there was a sprinkle of dissension in a thread that I started. So i'm doing what I feel is right and laying it all on the table to get over and move forward. Mike is doing everything he can, and doing it well. But he isn't above all criticism because he is rich and can attract money. No one is.

I'm also telling this story because I' m simply out of time and truly believe that we need to work together with the big idea people with money and that would be MJFF. The big D, depression, is now a regular part of being "off" for me. When on, my spirits lift. Also, what has happened within the last year or so, is a tremendous change in my energy level from personal difficulties that have since been successfully resolved. This could very well be because I don't eat...lol...duh. I don't eat because I take so much sinemet and never have an appetite. I weigh about 115 lb or less and my clothes are hanging on me. I wait for energy - it can take half a day.

Ok so most of the silly, punding emails to Mike have stopped with a few exceptions but of course I did write him with the disappointment thread URL. Those of us in the neurotalk pd project group have been trying to come up with a way to do literally the same thing as this Fox online research initiative, so when I read it, and saw that it was for health professionals and money people only, I truly felt like it was a slap in the face. I'm sure there will be more to come and that MJFF wasn't intentionally trying to hurt us, but it did have an impact because it was so similar. Lke Linda H. said, it unintentionally kinda screamed no patients allowed.

As i get older and more advanced, I don't see the need to remain professional. What ladder am I climbing? Who am I trying to impress? I just say it like it is and hope something is learned or a connection is made. That's what I do - I make connections.

Ok so that is where it's at. For those of you who were worried about insulting Mike or his foundation this post will hopefully put your mind at ease. Mike is a big boy. He is protected by so many people that i doubt any impact made was damaging and embedded within the self confidence emanating from this success driven foundation. I trust them and from knowing Michael many years ago, I understand quite a bit about celebrity.

So i am over my need to feed, so to speak, off of my ability to communicate with Michael. I am not going to write him and ask him to communicate or empower us anymore. He physically feels a lot like i do - has had it almost the same amount of time, and told me once he was a sinemet junkie and that was years ago. I know how he feels. I don't want to cause him any stress or worry, because i can't take any either.

Sheryl, your scolding was haughty and self righteous sounding and i wish you would come in and say something nice once in awhile. We get it - I make you angry. I can't change that now, but hopefully you can understand that my reaction to the fox announcement was because of the group forming at neurotalk - which i never intended to lead - and had to really muster up some energy to do. Seeing fox do it without including us was somewhat of a shock. That's all I have to say about it to you.

I don't want to see relations deteriorate tho between the forum and fox; we've already expressed our frustrations with other orgs, which have lots of good people like Robin Elliott and Amy Rick, who are working hard for us. i'm just too advanced to work at their pace. I want to move - i want to change research - I'm trying to live my life anyway,even tho there are days when the energy comes so very late in the day, that I can see what that day when no energy comes might be like.

It is what it is. I'm still an upbeat person with a twisted sense of humor, but have so very few people to play with ....lol. Jaye can be counted on for both spiritual guidance and silliness.

I am a person of faith, and feel that my online experience has been guided and with purpose. This is true for me because something always happens. Just when I feel I'm too tired to get up at all, something comes up and now i'm telling my life story and still crossing paths with the one who can make the difference happen. Why me? Why not me?

So to my utter disbelief, i am now asking michael publicly to consider adding patients to his arsenal. Patients who are not rich, but have pd in their gut, and know the illness. Patients who have connections and strong convictions about trying new research paths. Patients who can work online and will ask for nothing but a seat at the table. It's time has come and the Fox Foundation is clever enough to figure out how to do this.

What we will contribute is not well defined because it's new....but we understand the problems, if not the chemistry. There is a new breed of online educated patients who are patronized over and over. It's a waste of our time, which is shorter than anyone else's.

So think about it please. If you decide the answer is no, the answer is no. It's been no so far, so I think we can handle it.

ok I'm done, no regrets, it is what it is, I don't even pretend to be normal anymore - too full of chemicals.

thanks for reading,
paula

you were a teacher, yet you will always be a teacher,
I think you have given yourself to many flunking grades...
I know you are very hard on yourself, you are loved by many,
but do you have trouble telling yourself -you love YOU?
I found many of us actually have a very hard time being happy because we were never told/ or were taught -to love ourselves...
tell the lil'lady you see in the mirror -you love her,
it's tough - I have to make
myself tell my mirror - "mere reflection" the same thing...
this is not a lesson on self conceit/ it is a lesson on how to be satisfied
& even happy with yourself,
love GOD with your entire mind body & spirit
and
love your neighbor as you love yourself...

Paula, Frustration with a degree of hopelessness has been in your postings on this subject. It is obvious you have devoted much time, intense energy, penetrating thought and effort into affecting a change in how PD research is performed. I for one thank you for your efforts on my husband's behalf. I frequently feel I am such a slacker for not contributing more; your efforts, along with several other members of this form are reassurring that the need is being examined and expressed.
It is obvious that the traditional medical research model for Parkinson's disease is not effective enough. The thread concerning the most recent drug failure and questions involving "subsets" of PD patients who were helped by the drug are illustrative of how little Parkinson's disease is understood. Thru further analysis of the "subset" who were helped, what differs among PD patients to make one responsive to a drug like spheramine while another receives no benefit could potentitally help elucidate different types of PD and different causes or triggers. But the trial was Pharmaceutical sponsored and driven. Their goals have nothing to do with elucidation of disease differences if it means only a small subset will benefit. If the results do not indicate large numbers can be given and sold the drug, then the research (ie the $$) stops. Is the answer a return to government sponsored academic based research? That model was fraught with problems also, demonstrated by favoritism, and the superiority of the ability to bestow "name making" to academics (and all that implies). I have no corrective answer, except including patients into the process from beginning to end--where questions about further analysis of subsets of patients, the possibility of inclusion of "compassionate use" in the patient contracts , along with other patient observations/suggestions are acceptable.
Paula, I recognize the significance of your efforts, and thank you for so (mostly--like most of us) graciously sharing your enviable talents. Madelyn

You sound like you have become an ideal DBS candidate!

In any event hang in there and remember I am always here for you my friend, as are your many other friends.

Mike needs to reply for his well-being as well as ours. NOBODY makes it through this by themselves. I do not care how many non-parkie friends you have.

You have given so much, Paula. Make sure you keep enough of you, for you!

You owe all of us nothing. Speaking for all of us I am sure, your contributions are greatly appreciated.

Sounds like you need to take a step back and reevaluate how much you can give.

Your pal
Charlie

Paula: At my age and stage I have to be limited in my comments. Nevertheless, I would personally thank you and others in our group for allowing me to participate in attempts to promote patient input. My 50 year career included personal contacts with notables including Hollywood celebrities, politicians, top brass within Fortune 500 companies etc---very many of them with personal or business related problems of monumental proportions. People like Michael, Muhammed, you and me and most of those in our small but dedicated group of advocates have one thing in common. We want to help!! Do not let the negative aspects of these threads discourage you. Remember we all have days when we are p***ed , discouraged, angry,resentful, etc. etc. We also have more than our share off "sick days". I strongly suspect many of those we solicit are biased in their views of the value of patient input. They may well question credentials, means of effective communication,validation of data being offered etc.

For, my part, I will continue as an active memeber of the project. Though lacking many of the skill levels evident in posts I will asssit whenever and wherever needed. Meanwhile we need you to hang in there! Bob C