[Stitcher]

Unless I missed something posted prior to this minute...I am well may have.

Be specific about this comment - Carey: "Most of the time we don't want MORE work done on our behalf, we want DIFFERENT work done or a different focus."

Different means:

[indigogo]

Originally Posted by Jaye

I don't need funding to look at the published articles on the topic, nor to look to my own 10 years as a very successful client and my impression of the experience of others on this board over that period. You don't need funding to enumerate the proposed studies that you are aware of. We don't need funding in the united4pd group to look critically at whether proposed studies are planning on asking clients the questions that clients want to be asked, and challenging doctors in the way we would like to hear them challenged. We don't need funding to think about how to dialog with the clinicians in a positive way (much more positive than the way I'm writing right now). Isn't this what "bringing your own chair" means?

I told you I had no sense of politics.

Jaye

Actually, the way the world works today you do need funding, for several purposes:

1. To support research that PROVES a different type of clinical experience benefits the patient (I know this sounds stupid, but medicine thrives on the peer-reviewed proven; it's hard to get them to change long standing practices just because somebody tells them "no, it really, really works")

2. To support additional staff (Nurse practitioners, physician's assistants, social workers, therapists) to make it possible to extend the time spent and quality of time spent with each patient.

3. To promote awareness of and educate medical personnel in a new manner of conducting business.

These things that make so much sense are EXPENSIVE.

Adding for clarification - our patient group doesn't need funding; the orgs need to examine how their funding is distributed to projects other than finding a cure or for new treatments. Other needs are left wanting; most patients could have a better quality of life right now if they were getting the best care.

[indigogo]

Originally Posted by Carolyn

Unless I missed something posted prior to this minute...I am well may have.

Be specific about this comment - Carey: "Most of the time we don't want MORE work done on our behalf, we want DIFFERENT work done or a different focus."

Different means:

1. More focus on improving the clinical experience - we spend a lot on the cure/ what about care? Much of the focus is on the future, what about improving the present?

2. The issue of orgs looking the other way when patients are compromised by controversies involving research (GDNF; Monkeys in the Middle, welders, etc)

3. Having conferences with the topics being set by the patients (see Paula's and Sheryl's comments above about exercise and DBS)

These are just some examples.

[jeanb]

Carolyn - good questions & Carey - good responses

And even though we may have an occasional seat at the table, how did we get there? Who chose us and why? Do we have a chance to participate where we truly want to have a voice? Or are we excluded for reasons unknown? What's fair? What isn't?

To Sheryl & Paula - what if there were a conference with speakers who gave tips / advice to pwp on what they could do to improve their quality of life?

For example about exercise -- as Paula says - exercise is big - so how about information on what we can do at home to improve our condition - no matter what stage of PD? Just one example.

[Curious]

Originally Posted by jeanb

For example about exercise -- as Paula says - exercise is big - so how about information on what we can do at home to improve our condition - no matter what stage of PD? Just one example.

butting in again.

excerise doesn't just mean riding a bike or using weights. it also mean doing a form of occupational therapy at home or at a gym. reteach the muscles the do what you need done, just in a different manner.

i've already mentioned great results we have seen.

[jeanb]

Curious -- you are right on!! If anyone has ever participated in physical therapy by Dr. Becky Farley and her BIG program (or BIG physical therapists) , that is just what she says and demonstrates. She believes we can reteach muscles and rewire the brain by focused physical activity.

Originally Posted by Curious

butting in again.

excerise doesn't just mean riding a bike or using weights. it also mean doing a form of occupational therapy at home or at a gym. reteach the muscles the do what you need done, just in a different manner.

i've already mentioned great results we have seen.

[indigogo]

Despite my obvious wish for a more concerted effort towards a national model of care, I think a single, national research agenda would be the biggest benefit of a united front. This would preclude pet projects, alma maters, historic funding practices and replace old patterns with laser directed, coordinated funding for the maximum impact in a timely manner.

This is the message that Todd began with, the effort by the cancer group Stand Up 2 Cancer

http://www.standup2cancer.org/

[jeanb]

works for me

Originally Posted by indigogo

Despite my obvious wish for a more concerted effort towards a national model of care, I think a single, national research agenda would be the biggest benefit of a united front. This would preclude pet projects, alma maters, historic funding practices and replace old patterns with laser directed, coordinated funding for the maximum impact in a timely manner.

This is the message that Todd began with, the effort by the cancer group Stand Up 2 Cancer

http://www.standup2cancer.org/

[GregW1]

Hi All,

I think that this thread is becoming, as it continues to expand page after page after page, with 87 replies and over 1500 views in three days, the best and most telling evidence of the basic discontent of the Parkinson's patient community with the orgs. The ideas are varied and creative, and overall they strike a positive note of action to help our community rather than just using the orgs ("THEY'RE the problem - burn them, BURN them!") to vent our basic frustration at the lack of progress toward effective therapies and an eventual cure.

I have some opinions about the "too many organizations" issue, but I won't go into another of my long and tedious ramblings about the issues raised in this thread.

I would, however, ask the following questions.

1) For those who believe that one organization would be the solution to most of our problems, let me ask you this -- which of the existing organizations would you choose to represent the Parkinson's community -- APDA, PDF, the Parkinson's Alliance, the NPF, of even MJFF, which is frequently criticized here and elsewhere for being deaf to the patients' voice? Overlap and duplication notwithstanding, there is something to be said for competition and checks and balances. Do you really want just one org (even one big merged org.) to have complete control over national PD policy and direction?

2) As a first step in taking some concrete action to express our discontent with the present organizational arrangements, would those who have contributed to this thread, as well as those who have read this thread and agree with its overall expression of dissatisfaction, be willing to send a paper copy (not a link) of the entire thread (allowing a few more days for contributions and comments in the thread) to each of the Executive Directors or CEOs of the national Parkinson's organizations? Would any of those who have contributed to this thread delete or object to their comments being included in the material sent to the organizations? Would any neurotalk members who agree with the overall thrust of this but don't feel they have anything new to add be willing to post a reply that says "I agree with concerns expressed in this thread?"


"Let's not let what started here end here" - Spartacus, or Robespierre, or one of those guys.

Greg Wasson

[jeanb]

Greg,

I see this as the beginning of a dialog - the start of a grassroots effort.

Frankly I don't want to contact the orgs now. I think it is too early. Our time will come, but IMHO now is not the time.