I disagree that the scientists should avoid wasting time studying PD and dance. In the early years of my parkinson's dance website, virtually all I did was to try to recruit scientists and dancers to work together on mental movement disorders of any sort. What happened was the dancers showed up - famous dancers and choreographers such as Margie Gillis (Chapter 10) and Linda Rabin (chapter 28) and the London Ballet and of course the Mark Morris dancers -- the dancers showed up, but the scientists did not. (except for a few studies, such as the one using Tango, wherein PWP out-performed the healthy elderly.)
I am happy that the PWP dance movement has finally taken off.
BUT an hour a week in the church basement is good for morale, but nowhere near enough to fight a degenerative incurable deadly disease.
Alex Kerten is closer to it: four hours a day of actively, fiercely fighting it, working at it, playing around with it - four hours a day minimum that it takes to get ready for the Olympics or to play solo violin at Carnegie Hall.
The theory we were campaigning about was very simple:
- caused by 90% of substantia nigra being dead
-= brain is plastic, flexible
- the parts of the brain that handle music and dance are heavily re-inforced because song and dance behaviour gave us a huge evolutionary advantage
- PD does not attack the parts of the brain that handle music and dance;'
so we must migrate to that part of the brain and tip-toe past the smoking wreckage of the stress-addicted frontal brain;

Can we walk in the dance part of the brain?
Can we train our brain that from now on it is all a big dance, all day, everyday.
I wore earphones at all times for 4 years and practice breathing and movement from dancers
but no scientist replied at all
Can we train our brains to use circuitry that still works and wire past the parts that have gone up in smoke?
working at it 4 hours a day for 5 years?

Bob, I don't mean that it should not be studied, I just object to studies using up huge amounts of resource when services are needed too. I even more object when the wagon is occupied by people who have jumped on because it is the latest thing that they can possibly study. For all those genuinely interested I have no problems, and for those who are finding out more ways in which health can be maintained or even that onset could be averted, yes to all that, of course. But services for pwp are poor, we get our prescriptions and have to find out for ourselves what to do. Often we are alone with it, with few people who know what it is and how to combat it. I would just like the balance to be there, services AND science. But we are not glamorous, and science often seems to be. Count the amount of headlines about the science of PD and then count the number of headlines about PwP, and there you can see the difference.

Science has the potential to help in the long term, but what people need is something that is for now, that helps them in their todays and tomorrows......

On the same side, just from a different perspective.... but you know that anyway......

Lindy

For severe diseases like pd and ms, als, etc. there should be continuous sharing among all stakeholders until the problem is solved. They are supposed to be helping people get cured. That should be everyone's goal. Instead it's a racket- i don't care about studies that are going to come out with an answer that most of us could predict. It may' help quality of life but it puts the responsibility on pwp to get to exercise and dance. and pay for it.

we all know it helps, but can't get there or there is no where to go. It kills me [and is] how low on the scale of reasons for doing anything patients remain.

They use us to make profits and we are slaves to the system.

Exactly!!..They reap the benefits, and we dont

And that deadly apathy waits in the shadows.