[paula_w]

The orgs have their own missions and agendas and often use patients to help them further their agenda. Hopefully, their agenda is also beneficial to patients in the process. This is what both orgs and advocates have been working on.

What I have noticed over the last few years, is that turn about is not fair play. Patient accomplishments are not credited unless they directly benefit or result in something for the org. This concept may work, and be absolutely necessary in the business world, but it doesn't work in the health community, where emotions and lives are at stake. Everything should be focused on benefitting patients, not competing with them or with other patients.

Sharing is essential for all aspects of helping other people. Secrecy and withholding information are merely forms of control IMHO. You really see the lack of support, if patients do something that threatens the accuracy or integrity of the medical community that make up their scientific boards, or regular boards, or other administrative staff, such as in the case of Monkeys in the Middle. This is very telling.

In a thread like this, which asks "what's wrong?" the answers are going to be more or less criticisms, which doesn't mean we don't appreciate what the orgs are doing. They are collaborating more and are more patient oriented. But both orgs and patients, as stated by others in this thread, can get away from what really needs to be done. Todd said in the beginning - to get away from me and become we. This is not accomplished when agendas are focused on the me.

As for researchers taking exorbitant consulting fees that end up harming patients....a big thumbs down.

paula

[SherylJ]

Carey, I love your picture and message: Parkinson's the champagne of neurological diseases.

It reminds me of a sign we pass driving through WI for ABS, "the world-leading provider of bovine genetics, reproduction services, technologies and uddercare products." Their tag line is, "The champagne of bottled bull."

But I digress... when I was diagnosed 10 years ago, my MDS told me, as did everyone else's, that if I had to have a neurological disease, PD was the one to have because there very likely would be a cure in 10 years. Anyone spot it yet?

If PD is the champagne of neurological diseases, perhaps we are a bad year or a bad label. Maybe we should change to Parkinson's... still your grandparent's neurological disease. Show us the cure!

Just trying to inject a little humor.

sheryl

[SherylJ]

"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.[/QUOTE] Jean

Jean, you and I know the response we get as patients who share tips on living well with PD. The audience comes alive. They are hungry for even one thing that might make something in their life easier.

As we all know, even when exercise programs are available and free, transportation remains a huge issue. Giving people ideas they can use on their own in their home is the surest way to make a difference. True some people won't be motivated to do it, but many more won't be motivated to leave their house.

sheryl

[SherylJ]

Originally Posted by GregW1

Hi All,

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?"Greg Wasson

I think this is a moot point. I would hope that everyone who has commented on this thread did so knowing that the orgs will see and read every word.... and sooner rather than later. It has been distributed and posted in places and ways that guarantee this. Speaking for myself, I have no problem owning up to anything I wrote... if I didn't believe it, I would not have written it.

Timing is a different matter. I think we need to formulate our plan for what we want to accomplish, etc. before just stating our discontent. IMHO Whether they admit it or not, there is nothing said here that the orgs don't already know.

sheryl

[GregW1]

Always think things out thoroughly, Greg. You both are right. It's going to get to them anyway, and any organized action from here needs real discussion and planning among people interested in these issues, and I think it has to occur off-forum to allow for full and frank airing of ideas.

Thanks for the responses, and keep on thinkin',

Greg

[paula_w]

Regarding the exercise - along with its importance for everyone, dollars are being spent on research programs to prove whether or not it is neuro-protective. Regardless, the results always say we should exercise - so why not spend dollars to help patients do so?

paula

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]

Paula - I agree:

"Regarding the exercise - along with its importance for everyone, dollars are being spent on research programs to prove whether or not it is neuro-protective. Regardless, the results always say we should exercise - so why not spend dollars to help patients do so?"


APATHY and LACK of FOLLOWING THROUGH are huge in PWP's; that's where the real challenge lies. And it's probably the reason the orgs can read this thread and say, "well, there's obviously discontent - but what are they going to do about it? Nothing.'

Let's not do nothing.

[aj04]

Hi all,

It’s been a long time since I posted anything, but this topic is too important not to join in (my thoughts are somewhat scattershot):

This lack of organizational unity has been an ongoing issue since long before I first heard about it after my diagnosis thirteen years ago. If it feels overwhelming, like taming a Hydra-Behemoth hybrid (a huge beast who grows two heads to replace one when it is cut off)., don’t be surprised because that is what it is.

For a number of years, we said, “Oh, a cure or an effective treatment will come around before we could ever get those orgs united, so we’ll just let them be.” But the prevailing winds blow in the direction of our being around a lot longer with this disease and so it is worth our while to start a unity movement

We must remember, however, that there is a whole, long history behind each org: who started them, why, where and how they have spawned other orgs, the relationships between them. We need to respect that.

The orgs face the same trouble we do in refocusing on prominent issues as the issues change. But for them, it’s like turning around the QE2.

The time, effort, and money—from CEOs to water coolers--wasted through redundancy should be counted. At the same time, I don’t see any value in “rating” the orgs. That information should be used to build a case for unity, not a slap on the wrist

I think a drive to unify the orgs would better serve the community than a panel of patients that would advise the existing orgs. The former is forward looking, the latter gets stuck in the status quo.

Do we know whether any of the orgs is actively pursuing a move toward unification that we could—read should—be involved in?

[PDengineer]

Paula,
You have a great point in fact we have been working on putting together a program that customizes a fitness program to each person,not just saying go do it, and having follow up. Right now it involves UAB Neurology,PT,OT and The Lakeshore Foundation,a local not for profit center dedicated to serving the needs of the disabled. The person is reffered to a PT for an assessment then goes to Lakeshore so that a custom program can be designned for them and they are given specific goals with time frame and follow up. Still in the pilot phase but we are making progress. Next step is to add nutrition.

Originally Posted by paula_w

Here's an example of something that bothers the heck out of me. We are constantly being told that we must exercise and exercise vigorously and regularly. lol....how many advanced pwp do you think actually do that? PD exercise programs should be a funded mainstay of every local support group, including transportation. You don't need to hire an instructor - hold exercise webcasts or show exercise DVDs. This should come from the orgs [IMHO] or you have to throw in fundrasing for the exercise program to the list of advanced pwp responsibilities.

Symposiums are held to report the results of exercise and PD. But then the advanced pwp is left to his own resources to actually accomplish this - the last person who should be in charge.

IF the patient isn't going to benefit from the exercise research through provided help, who is gaining from this research?

paula

[paula_w]

Aj,

Your imagery is fabulous! You must come back for awhile we need you.
More coming - so many thoughts.

a big welcome smackeroo on the cheek
paula

Originally Posted by aj04

Hi all,

It’s been a long time since I posted anything, but this topic is too important not to join in (my thoughts are somewhat scattershot):

This lack of organizational unity has been an ongoing issue since long before I first heard about it after my diagnosis thirteen years ago. If it feels overwhelming, like taming a Hydra-Behemoth hybrid (a huge beast who grows two heads to replace one when it is cut off)., don’t be surprised because that is what it is.

For a number of years, we said, “Oh, a cure or an effective treatment will come around before we could ever get those orgs united, so we’ll just let them be.” But the prevailing winds blow in the direction of our being around a lot longer with this disease and so it is worth our while to start a unity movement

We must remember, however, that there is a whole, long history behind each org: who started them, why, where and how they have spawned other orgs, the relationships between them. We need to respect that.

The orgs face the same trouble we do in refocusing on prominent issues as the issues change. But for them, it’s like turning around the QE2.

The time, effort, and money—from CEOs to water coolers--wasted through redundancy should be counted. At the same time, I don’t see any value in “rating” the orgs. That information should be used to build a case for unity, not a slap on the wrist

I think a drive to unify the orgs would better serve the community than a panel of patients that would advise the existing orgs. The former is forward looking, the latter gets stuck in the status quo.

Do we know whether any of the orgs is actively pursuing a move toward unification that we could—read should—be involved in?