Pulling together

[CPT_Helen]

How can we motivate the whole Parkinson's Community to pull together for a cure?

[Becks]

Publicising a conference?

[Lindylanka]

Perhaps a patient led conference would be a good idea. It could put the urgency for a cure (and I use this term guardedly, because I am not sure that it will be a singular cure) at the centre of the agenda, instead of out at the periphery.

[CPT_Helen Partner]

I agree with you that it will be cures in a plural as not all treatments will suit all people and the variety of causes by its very nature means a variety of approaches will need to come into play to find cures.

[RayW]

I'm not sure that there is necessarily aParkinson's community able to pull together. The range of ages, the stages at which different people are in their condition, people's personal lives and their willingness and/or ability to commit to one course of action or another seems to me to mitigate against managing this ideal. I think multiplicity is an important concept, because it reflects Parkinsons ss well as what I believe to be the Parkinson's population. No single method is likely to engage everybody, no single cure is going to suit everybody and no single strategy is likely to be wholly successful.

[pkell]

I have found meeting others with PD to be extraordinarily empowering and think the idea of a PwP led conference is a fabulous idea. Sharing with one another binds us in a relationship that is stronger and closer than is truly imaginable if you have not yet experienced it. The strength each one feels grows exponentially with community. The only real roadblock to doing it is money, just money.

[CPT_Helen Partner]

Funding is always a concern, but if there is enthusiasm, then there are ways we can make this happen.Q

[paulaw]

I do think there are bridges that can be systematically built worldwide. Communication and information bridges , like getting information from the internet to offline and in doctors offices.

Hindrances to building these bridges other than money:

lack of urgency that can only be conveyed by a patient

progression of the condition renders us unable to continue on

a plan that is designed for expansion and avoids duplication

[Lindylanka]

I do think that there is an energy there, among PwP, a need to know that comes out of having a baffling condition, and so many unanswered questions on what it is we are actually living with. As Ray said there is a multiplicity....

On the other hand it is only by coming together in numbers that we get to see our own picture of PD reflected in someone else who has had a very similar path/journey. It also makes it easier to cope with when we feel we are heard or understood.

So maybe it is a matter of harnessing the energy that brings people together to find personal answers, and channelling that into collective action. For this reason I think a conference or event based on learning about PD from each other could be useful.

As Paula intimated, this does not neccessarily need to be held in a physical location, there is so much technology that can bring people together, it also does not need to be at one time - barriers of space and time can really be transcended! But on a more practical note, it is do-able, if we have a will to make it happen.....

Helen, I think you were asking something more though, and your words 'pulling together' are more to do with a task or something that needs doing, than a 'coming together' implies. So maybe we need to define that, why we need to pull together, and for what......

[pdplan4life in reply to Lindylanka]

Lindy, great points. I think that the World Parkinson Congress could help with this. For those of us lucky enough to have gone to Glasgow, it was incredibly empowering to be amongst so many other pwp.

And current technology could bring people together worldwide to attend the next one in Montreal -- of course they would need more funding in order to pay for the webcast etc.

I know they very much wanted to webcast the WPC from Glasgow, but no sponsor stepped up to pay for it. That's always one of the big problems to get just about anything going, isn't it? Getting the money to pay for these things.

[Hikoi]

Good discussion. To 'pull together' we need a feeling of being united and some degree of cohesiveness. I have been thinking about the conference idea - it is appealing. It builds a sense of community, of connectedness as well as the potential for raising public awareness. Perhaps alternate years to the World Congress and maybe regional conferences with linkages through technology. But I run away with myself - alot of work involved. Need to start small and build.

[pkell]

Hikoi, I think "running away with ourselves" is a good idea. It indicates a return of passion, something many of us lose. I had, until I was fortunate enough to find myself in the company of some spactacular PwP who became my dear friends in what seems like a nano-second.

We met at various conferences, and they have become like family members to me. We would have been virtual friends at some point probably, but meeting, speaking face to face, sharing a meal or a glass of wine together, has cemented those friendships in a way only time can usually manage. Meeting together is important for us to become a unit, so maybe we should start big and adjust as necessary.

As to the work involved, there are lots of us and we still have much to give. Working hard for a worthy goal is a good thing and good for us.

[Hidden]

Pulling together would be a nice result irrespective of the target.... As a group of people linked by our condition I am often quite surprised at the lack of supportive behavior. Sometimes it feels as if we are on opposing teams. I am not talking about differing opinions thats human and healthy, I am talking about flexibility and open mindedness. I personally have had very bad experiences on forums and chat rooms for being outspoken and I know that people know me to be strong headed. But these are good things, in a world where silence is not the answer. So unity on some basic levels would be a good start!

[CPT_Helen Partner]

My view is that pulling together to help find a cure is absolutely vital.

Q

[move4parkinsons]

I have met some incredible people with Parkinsons over the last 8 years and we have incredible stories to tell .The World Congress in Glasgow was a fantastic platfrom for us to meet .I have found over the last 2 to 3 years that the communication via the internet has opened a whole new world for us and I absolutely agree that pulling together is vital to find a cure.Patient empowerment is essential.

Sharing of information and experience vital.

We need to be heard we have so much information that could unlock the cure.

[esrob]

I agree that pulling together is vital. I just wish that this applied to the neurologists and researchers. I take part in research programme and, every now and then, am sent numerous questionnaires to answer. Not only do I get no feedback, but also, I have never met any of the people involved in the research. In other words, I am just a number on a piece of paper.