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Parkinson's Disease Tulip

is this a possibility?

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Unread 04-26-2012, 10:04 AM   #41
reverett123
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Default A modest proposal

Big Pharma has the funds and the Orgs have the connections. Why not build a series of research villages where Pharma supplied funds (tax breaks) are administered by Orgs to supply a simple living environment for PWP who agree to participate in tightly controlled trials (Academia)? These would be lifelong commitments that would protect patients while assuring followup data collection. Even those who were not in a given trial could serve as controls. PWP would have a place to go with good care. Pharma would get tax breaks and advance data access. Orgs would get a solid reason for their existence plus funding. Academics would be able to perform that "additional research" that seems to always be needed. It would have to be set up carefully, of course. But it would probably be cheaper than the current system (maybe by several orders of magnitude).
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Unread 04-26-2012, 12:49 PM   #42
jeanb
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Exclamation a thought

The wellness center in my community was funded by a private foundation and Banner Health Care system. The private foundation provides the location of the center plus funding of $100,000 for five years. It is my understanding that one of the major orgs was approached but declined to take part.

So what happened? The private foundation AND a major health care center in the Valley joined together to make this center a reality. Since the major orgs (excluding MJFF) are ignoring us and our needs, maybe we should talk to private foundations and local health care organizations. Carey, you mentioned Brian Grant's organization - maybe we should start a dialog there.

Just a thought.

Jean
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Unread 04-26-2012, 01:42 PM   #43
paula_w
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good ideas. i worked with HEALTH FIRST to allow faizan sheikh to send in a videographer to film our aquazumba class. They were hesitant at first because they didn't even allow pictures of the classes. I had to jump through some hoops for just that but it happened.

raising funds for something that big in both yours and rick's ideas, which we need so much ,needs a star advocate and the star advocates are all at a socioeconomic level where they don't need those facilities.

unless there is a star spouse or relative to take up this cause?

Time to go out on the limb, we are running out of time.
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Unread 04-26-2012, 07:39 PM   #44
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An extension/combination of some of Rick/Jean/Paula/Carey's ideas:

The village idea is good, but why stop at it being for research, how about centers for wellbeing and research combined, where PwP could go for a kind of respite from their daily living, into a safe environment where there were people who could advise/assist them on everything from medication adjustment, to taking control over their own lives, from emotional crises to mobility. And while they were there collect valuable data and maybe samples, scans, physiological testing etc. over say a 2-week period. Not too medicalised, maybe an hour a day for that side of it but the rest to choose from a menu of things that could help tackle the difficulties faced - taster sessions in exercise, dance, singing, neuropsychology, conductive ed., etc. Confidence building and communal. I am absolutely sure data collected like this would riival much of the assumptions on PD. For instance data could be collected about wearing off and on, how dyskinesias vary, and it could be data collected from people of a wide age range, most of the studies on things like this are done on highly selective groups, or on late onset PwP in care homes. There is so much that is unknown, and a lot of it relates to our daily activities - how many PwP become poorly nourished for instance, because of inability to prepare food from fresh ingredients, what can help with this.

I am coming at this from a basis of living with the reality that PD has fundamentally changed how I live. That is what it does, and most people do not see that or understand it. That includes doctors and researchers too. It is bothersome from the moment I wake until I eventually () get to sleep.
I can't think of another disorder that is so pervasive, but there is virtually nothing other than groups like this one that help with understanding how to live well with PD, we are all doing it by trial and error, and waste years finding what works for us best.

So I guess this idea, which I have not really expressed clearly enough, is also idealistic, because everyone in a 'village' like this would be participating not just delivering or receiving, and it would not be a passive place......... a dream - maybe. A possibility, yes, if someone with what it takes would put some faith in it as a way to move forward, and it provided a paradigm that was of benefit.
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Unread 04-26-2012, 10:26 PM   #45
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Default it takes a village

I'd live in a village designed for PD health, wellness and research.
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“Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony
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Unread 04-28-2012, 05:40 PM   #46
GregW1
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Quote:
Originally Posted by reverett123 View Post
Big Pharma has the funds and the Orgs have the connections. Why not build a series of research villages where Pharma supplied funds (tax breaks) are administered by Orgs to supply a simple living environment for PWP who agree to participate in tightly controlled trials (Academia)? These would be lifelong commitments that would protect patients while assuring followup data collection. Even those who were not in a given trial could serve as controls. PWP would have a place to go with good care. Pharma would get tax breaks and advance data access. Orgs would get a solid reason for their existence plus funding. Academics would be able to perform that "additional research" that seems to always be needed. It would have to be set up carefully, of course. But it would probably be cheaper than the current system (maybe by several orders of magnitude).
Rick,

And I thought I had a dark sense of humor. It looks like your hints at satire got lost in the shuffle - A Modest Proposal (see Jonathan Swift), a lifetime commitment, that "additional research" that always seems to be needed, etc.

Of course to make the proposal even more efficient and productive, the property of the volunteers would have to be forfeited to the state, and guards posted to make certain no volunteers could renege on this cushy deal by trying to escape. To promote trials on the effects of exercise, participants would have to agree to ride stationary bikes one hour a day, and the bikes could also be used to provide electricity to the camps. Later on, camps could be segregated by ethnic and/or religious affiliation to determine the effects of racial genetics and belief systems on trial outcomes.

Thanks, Rick. I haven't had such a good chuckle in weeks. BTW, you might be interested in a new project by two actors with PD who are attempting to mount a performance of Beckett's "The Endgame". They both have done numerous plays and films, and a documentary film is being made of the whole project. The link is www.theendgameproject.com. I learned about it today at the Unity Walk.

Greg Wasson
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Unread 04-29-2012, 05:38 AM   #47
reverett123
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Greg-
You are a sick man. I like that.
Thanks for the suggestions. Maybe they could find some of those giant "beach balls" from the old "The Prisoner" series.
-Rick


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Originally Posted by GregW1 View Post
Rick,

And I thought I had a dark sense of humor. It looks like your hints at satire got lost in the shuffle - A Modest Proposal (see Jonathan Swift), a lifetime commitment, that "additional research" that always seems to be needed, etc.

Of course to make the proposal even more efficient and productive, the property of the volunteers would have to be forfeited to the state, and guards posted to make certain no volunteers could renege on this cushy deal by trying to escape. To promote trials on the effects of exercise, participants would have to agree to ride stationary bikes one hour a day, and the bikes could also be used to provide electricity to the camps. Later on, camps could be segregated by ethnic and/or religious affiliation to determine the effects of racial genetics and belief systems on trial outcomes.

Thanks, Rick. I haven't had such a good chuckle in weeks. BTW, you might be interested in a new project by two actors with PD who are attempting to mount a performance of Beckett's "The Endgame". They both have done numerous plays and films, and a documentary film is being made of the whole project. The link is www.theendgameproject.com. I learned about it today at the Unity Walk.

Greg Wasson
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Unread 04-29-2012, 03:28 PM   #48
indigogo
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Default I've gotta get out more - when I get my act together

Greg - thanks for the reminder to laugh - and also for the appropriate historical/literary perspective. I'm so grim these days that, even with your ironic spin, living in a PD research village STILL sounds good to me. Maybe now that I think about it, it's less about the loss of my sense of humor and more about my loss of function. And the lengths I might be willing to go to restore order and purpose in my life.

The Endgame Project looks really cool. Lots of creative stuff going on out there these days.
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“Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony
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Unread 04-29-2012, 08:27 PM   #49
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Default Red Rover, Red Rover

Quote:
Originally Posted by reverett123 View Post
Greg-
You are a sick man. I like that.
Thanks for the suggestions. Maybe they could find some of those giant "beach balls" from the old "The Prisoner" series.
-Rick
Rick,

The Rover is the first thing that came to mind when I read "Village"; I even sometimes use Number06 online. The next thought was not so good...lepers.

I feel the need to belong, but ultimately not so good to isolate.

Laura
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Unread 04-30-2012, 10:59 AM   #50
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Default well color me stupid

but it sounded as good as anything else we have to choose from; perhaps satire that complex could simply be explained along the way. i was never a science fiction reader...now i'm living it.
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