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my seat at the table

This thread has taken a sharp wrong turn into the surreal.

Patients are arguing with Debi about things she and the organization she represents, MJFF, cannot fix and have never been in the business to fix.

Debi, in turn, is making judgments against patient behavior that are not hers to make.

Maybe it's because Debi is the only org representative bold enough to have a public presence in this forum, making her a welcome voice while at the same time leaving herself vulnerable to every single fault patients have with every single organization. She is not a target; she speaks on behalf of one org with a clearly defined mission. And MJFF is on task and doing beyond their best for all of us - a fact that is rarely if ever disputed here.

On the other hand, Debi - until you walk a mile in our shoes. That you feel you are able to wade into the way patients treat each other, making harsh judgments about our behavior is quite amazing. It's akin to a white person telling African Americans not to use N***** with each other. The "sick, rich and clueless" remark was less a criticism of the patients and more a criticism of the org that chose them. It, in my opinion, was a harsh, throwaway line, but I think it hurt you, not patients. And it made you wonder, probe and think about how any patient could have said it.

As a member of the MJFF patient advisory board, and from my view only, all of the seven members of the board are sick. All but one are "rich" from my perspective as a person living on Social Security Disability (others may have a different definition of rich). And, yes, there is "cluelessness" among them, and among the MJFF staff as well, as to the social and economic reality of the ordinary person living with Parkinson's. That's why, I hope, I am there. I have a loud voice, both figuratively and literally. And I use it. But, while "clueless" about things they, frankly, have not had to think about until now (their research benefits all regardless of status), the entire MJFF patient council (and staff) as I have come to know them are intelligent, thoughtful, caring, imaginative, and empowered to represent patients in line with the MJFF mission of accelerating a cure and new treatments for people with Parkinson's with innovation and an entrepreneurial spirit. I am honored that I was asked to serve, and I do so with a tremendous sense of responsibility to the community I feel I represent.

All of the patients who post here are sick; some more than others on the Parkinson's continuum. Having Parkinson's admits us to a special club; it's like waking up one day already knowing the secret handshake that allows us to treat each other in ways that we wouldn't treat our family members (we tolerate a wide swath of bad behavior; are generous with our collective faults) - and understand things about each other that no one else, even our closest family and friends, could ever understand.

But having Parkinson's is not a free pass to say anything to anybody and get away with it. It gives us the right and duty to educate others about our experience, and shine a light on ignorance, but it doesn't excuse bad behavior or irrational thoughts - like expecting MJFF to solve all of our problems. Aren't we smarter and more nuanced than that? Doesn't that mean we still have things to learn about how the orgs actually work for us and operate in the world? We might not like it, but we should understand it.

We have a lot to learn from each other. Let's not shoot the messenger. Let's get back to understandably passionate, yet rational discourse. I've heard it on the streets that Debi Brooks is a fast learner; I'm glad she is on our side - let's keep her here - we have a lot to teach.

I promise to be a strong, informed voice for the patient whenever I am invited to the table.

NT is for all pwp

*Chemar editing out quote as that post has now been edited*
*edit*

Because I not only advocated for clinical trials, but also had been a participant in several clinical trials, I was selected to participate in the PDF Roundtable on Clinical Trials. It was there, talking with Ronnie and that PDF got its idea to start training for pwp in its academy.

Not only do I have a long history of working for and participating in clinical trials, in the last 12 months ( as part of pdplan4life), I have spoken to more than 1500 people encouraging them to participate in clinical trials.

I am a pwp as are others on this thread. I have been a member of NT since is inception. I have a right to be heard. But having said that, I must agree with Carey:

Carey wrote "...having Parkinson's is not a free pass to say anything to anybody and get away with it."

sorry to have to intrude here but this topic is taking negative tangents of a personal nature which is against NT guidelines

please would members who have personal disputes take it to PM or put each other on ignore.
Agreeable disagreement on a topic is understandable and allowed. It is when comments become directed negatively against individual members that the guidelines have to be enforced

please may I also request that if members find a post directed at them to be personal, you use the report button bottom left of the post to notify us, rather than to retort in kind.

I have had to do some editing and hope the topic can get back on track

thanks

Well here is one "Parkie Personality" who doesn't give a flying fig about being stereotyped, as long as the job gets done. Fiona, get your butt back in here.....I like your style and I love your ideas. Paula, I look to you with deep respect and hope that you don't let anyone here get to you. It's quite obvious there's a little bit of self-interest going on here (Not Debi).

We're in this thing together. WE can make a difference.

Quote:

Originally Posted by Debi Brooks (Post 525214)

Note that in nearly 3000 views of this particular thread, there are still only 22 people posting comments; so comments of a very few have the potential to carry much weight…
Debi

Just to clarify the views count numbers ..
many of those can be due to the many internet search bots, forum guests and members coming back to re read the comments.

Quote:

Originally Posted by lindylanka (Post 525342)

It rankled for me too, that implication that there was a PD personality that lead to certain ways of behaving, that we might in some way be 'ungrateful'. Which is actually a hugely unfair cut.

The fact is that I am unhappy about a fair few things that only exist for me because I am a PD patient.

I do not like that I take a set of drugs that have side effects that can be worse than my symptoms, and that nevertheless I cannot manage without them.

I mind that I sometimes have to take drugs to alleviate these side effects, and that they too can cause side effects.

I mind that my neuros have over time been unable or unwilling to see how deeply PD affects my day to day living, and I mind that when they cannot see my symptoms they doubt my dx.

I mind that the drugs I take are not effective when I eat protein, and that if I don't eat and don't sleep (!) they are very effective. I mind that if I mention this to my doctors they ignore what I am saying or look at me as if I am coming to them with a peculiar 'story'.

I mind my opinion as a patient being 'written off'.

I mind that my local hospital takes away my meds and will only give them out when they choose to.

I mind that student doctors are taught that PD is a disease of the old, and that tremor is the main issue of PD.

I mind that I am not treated by doctors who see me holistically, instead I am chopped up into component parts and sent to different specialists who know nothing about PD; that I have to suffer their view on my disease as well as their treatments before they will listen to what I have to say.

I mind that often what I say is seen as irelevant.

I mind that there are few resources for keeping me moving, that I am left on my own to work that one out. I mind that my my physical therapist people do not really understand PD and keep on offering me the use of walking aids.

I mind that first contact with my national PD association elicited a request for donations, and that it exists more for fundraisers than it does for me.

I mind that PD patients are welcome to their forums and discussions, but that they should not inpinge on the work of professionals.

I mind that huge resource goes into scientific research, but little goes into looking at the real needs of real people.

I mind that many of the QOL issues that we have are simply not addressed. I mind even more that some of these issues are not even recognised as being a part of PD.

I mind very much that what I and my fellow PWP''s experience of this disease is quantitatively and qualitatively different from how is is perceived by the medical profession.

I mind that research is done on animal models of PD, and that those animals cannot speak, and that there is at the same time a huge pool of people that are not being listened to.

I mind that there is this constant drip of information to the media about this study and that study that is supposed to bring a cure nearer and that all the time it seems to get further and further away.

I mind that I and others like me, some who have been living with this thing for many years longer than me, have been living on the hope that this science will bring a cure while other things could have been done for them in the five, ten fifteen or twenty years that they have been living with PD.

I mind when people are offered the opportunity to participate in trials and a treatment that works for them is pulled. I mind that there is more responsibility to shareholders than patients.

I mind that the views of patients are seen as threatening to funding, and personalities, and the industry.

I could go on, but I won't. I have not got the expertise to talk proficiently on some of the things I mind. Some of the issues are those that face all people with conditions that need the drugs that the pharmas produce and make so much money from. Some of these issues are already being addressed in small ways that I can only hope will grow. And there is a growing body of engaged patients who wish to be heard, wish to be included in the development of treatments that intimately affect their lives. They are better informed and more empowered than any other time in history.

What i will not accept is that those voices that can be heard are in some way not valid, that the vocal people here - some of whom have been trying, despite their condition, for years to build bridges between patients and all those who are involved in the PD world from carers to pharmas - need to feel gratitude. This is topsy-turvy land. The values are all upside down. WE do not exist for the PD professionals, the researchers, the drug companies, the fundraisers. They exist because we do. And we do not have PD from choice. Everybody else - with the exception of family and friends - does have a choice. They either participate in the PD world as a matter of employment, or as volunteers.

That we should not have a voice at the tables of power in the field of the disease we suffer from is not just contentious for us, it is also illogical. That our desire to participate, and our discontent at being kept on the outside looking in can be taken for being the result of a 'PD personality' is to my mind incredible.

Debi, when I first came to the original forum from which this neurotalk forum developed, I was in search of some answers. This was because I could not find them elsewhere. Not from my doctors, not from the leaflets in the boxes of tablets I was prescribed. Not from the medical advice sites, or the scientific journals. It was here and in places like this, with people like the people who write here. Their help and concern, and their genuine understanding of what PD is helped and informed me MORE than anything else.

I would like their experience to be understood by the professionals in the field. I would like the experience of some of these wonderful advocates to be recognised, not by patting them on the back and consigning them to history, but by listening to them, to their collective knowlege, to their frustration, and to their need.

Not as a concession. Not as a palliative remedy for something the industry finds uncomfortable. The simple fact is that the understanding of PD would be advanced by patient participation. It is that simple.

You have personally intervened and helped us. We are happy that you have done so. And happy that MJFF is more engaged than most. You are valued here. Please do not take it wrongly if I say that these are issues that we are dealing with on a day to day basis that affect our lives hugely, and our responses are not the result our personalities, but a true reflection of our realities. And part of that reality for all of us is that time is running out.

Lindy

Lindy
There are people who understand and indeed care and united they will get their message out. You are a Parkinsonian and I am a what, Cancereriam, dumb eh. No name for me and no one saying I have a Cancer mentality or personality. We are just human beings and while I mean that as a complliment I still say if having a 'parkinson personallity' makes you display this type of reasoning and writing skills then you accept lit with pride. Good job!

typed one and lost it,,, have to take grandson to pool. The posts are so inspiring - i want to write about what i think might have been going on in the first part of the thread and don't mean to be mysterious. it takes a long time to retype,

best to all,and be back,
paula

In a lot of ways I am an outsider here and have always been so. But I have learned a lot of the ways of human interaction that I have not always replied to with distinction. I get angry easy these days and maybe have done so for a long time, I really don't know. At first I felt bad because after all I was talking to patients who had 'problems' but that disappeared and now when I am mad it is at the words used and the meanings provided here.

One of the first things anyone asks me is why are you posting there and the second is you should be in a Cancer Blog and the third [or about the third spot] is the most interesting one I hear.

Who are these people and why do you want to hear about Parkinson's all the time.

Well you know I have given that some thought and really I don't want to hear about Parkinson's all the time.

So am I unusual or have I hit on what is our problem here with all this talk.

Like said by others we do need a book!

The television is full of reality shows and sex is as dominant there as in any film or series you can find.

So then what about our going the way of the world and writing a book based on a love story or stories about those who suffer from varying neurological problems. Tell the human story for once about the common man and woman and no celebrities there.

Write a good love or action story could do for us what is needed. PUBLICITY for people to see the human behind the illness.

No one ever asks me about dopamine or sinemet but then I can't tell them about my two friends who found each other on the Internet and fell into the love they share today. I can't tell them about the heartache one friend had when her husband cheated on her nor the horrors of what she has had to endure on her own, then there is the fears of another in trying not to lose her husband as well as the man who can no longer perform and feels less of a man than he should for it.

There are a million stories of suffering and heartache that we all relate to or we would not be reading all of the material there is out there today.

What so you think. Like coming in the back door sort of but we have been battering on the front door so long and no one answer us. So lets open the back door and invite our friends in.........those we can relate to easy with honest emotion and not just dollar and cents talk. MJF is doing it and thousands of others

WHY NOT US

Debi,

The MJFF has been criticized on occasion for a certain aloofness and self-regard that some people find less than warm. I like to think those people are wrong, and I have often defended the Foundation's choice to be lean and mean in order to achieve a cure for PD as soon as possible. There will be times for hugs later.

But I am disturbed by your continuing references to my description of the MJFF Patients Council. It seemed to me a relatively minor criticism. As per your request not to respond around the post I have said nothing more about it. But you keep coming back to it as if it was some terrible assault upon the dignity of the Foundation. I'm beginning to feel like a character from the "Caine Mutiny." So here is my reply, and if we can't find agreement here, hopefully we can agree to disagree.

Yes, I could have chosen my words more carefully when I described the new Patients Council as being comprised, with the exception of Carey and David, of people who were "rich, sick, and clueless." But the shoe, as uncomfortable as it may be, seems to fit. I'm not sure what the purpose of a "Patients Council" is if not to provide the unique perspective of people living with the disease, rather than people chosen because of their influence or wealth. Besides Carey and David, I counted a bank president, a big Pharma development specialist, the Google family, the owner of a large outdoor advertising business, and a PBS broadcaster and producer. Only one of those folks was diagnosed before 2006, and the one exception was diagnosed in 2004. It's hard to believe that in a year or two these particular people have come into contact with a lot of Parkinson's patients - Dave Iverson may be the exception - much less being able to provide much meaningful input from the patient perspective.

Business expertise, money, and influence they undoubtedly have -- exactly the qualities that one would expect to find on the Board of Directors of a nonprofit organization -- but not on a "Patients Council." Do you really think that the Brin family (of Google fame), or the bank president, or the PhARMA guy, or the Sign company owner, for example, might have trouble paying for their meds? My guess is that the answer is "no." And if the answer IS no, they might not give much thought to the possibilty of a connection between the high cost of their medications and the ruthless and often criminal competition by PhARMA for increased market share and ever greater profits. That is a pretty fundamental way in which lack of experience and the huge gap between their economic condition and that of most people with Parkinson's can compromise the council's effectiveness. Not stupid people. Not bad people. But uninformed. Rich (right?), sick (right?), and uninformed about all but the relatively narrow demographic they occupy. Is that acceptable?

Greg

* This paragraph edited out by Chemar* Please see my post above requesting no further negative personal comments in posts
http://neurotalk.psychcentral.com/post525417-103.html
__________________________________________

i wanted to talk to what i think could be sort of a phenomenon that occurs sometimes with the ill or even with close groups for other reasons who need encouragement.

backing up tho, i want to point out that those feelings go back aways for most of us. they weren't new feelings. when i saw girija mention the conference the same situation as the other years was offered and i whined about it. i didn't feel comforable about it tho and should have deleted it - thought about it.

anyway, this phenomenon comes from need sometimes to "kind of feed off each other" like a school of fish.. for encouragement - sounds weird i know, but the thread became bigger than the words in it. momentum. it can have a common opponent. one more factor, the people in the thread. they included many experienced patients and advocates, most advanced, with different ideas of how to express it. holding these feelings inside for years,

so debi got the brunt of that. and why would we do that after finally getting her ear? that's a good question. it's not like i like having to say to someone who might ask...how is it going in the forum with debi that , SHE IS TOTALLY UPSET AND FURIOUS.

Again, i've never done advanced pd before, cutting slack is the way to go, *additional edit by Chemar-same reason as above*

anyway, i am a sick person, i am getting stronger, and i think we should do the right thing and move forward toward progress. none of my questions have been answered tho in spite ot the fact that debi just got her last apology.

it's the weekend tho....in the real world that means something. thanks for the WONDERFUL POSTS - they bring tears to my eyes. special people.
paula