Our Current Projects

Currently Parkinson's Creative Collective are working on two projects. This website is one, and the other is the NeuroWriter's book, The Peripatetic Pursuit of Parkinson's Disease.

The Collective are in talks with with the Journal of Participatory Medicine with a view to writing about the experience of coming together on Braintalk and Neurotalk and how it led to working on these projects.

On our video page you can take a look at Paula Wittekind's SPIT video, made to help inform the Parkinson's community about the 23 & me iinitiative for genetic testing aimed at collecting data on Parkinson's disease.

Click here to see a PCC entry for the WPC 2010 Quilt project made by Kath Huseman which features the patient as one of the stakeholders at the PD table.

People and Organisations that support PCC

We have been very fortunate in having the support and encouragement of Dr John Grohol of Psych Central, and the Neurotalk Forums.

We would also like to thank Tom Isaacs of the Cure Parkinson's Trust for his input in believing in the potential for working on the book , and for his encouragement and support.

The biggest thanks has to go to the Neurotalk Parkinson's community whose collective knowledge has inspired us.

Things we would like to see happen

The patient voice heard by health professionals
For many PwP the road to diagnosis was long, especialy for those with Young onset Parkinson's Disease. One of the contributing factors to this is a lack of general awareness within health professions about PD. Patients would like to help in the process of arriving at a better understanding of PD and how it affects day to day living.

Patients as valid stakeholders at the PD table
There is a long held belief among PD advocates that there should be more communication between the major stakeholders, and that patient should have a place at the table, where decisions are taken that affect their lives.

An amazing idea for video advocacy
We look forward to hearing more about some interesting and inspiring ideas on video advocacy from YOPD people, as discussed at Neurotalk. Video is an ideal medium for raising awareness. If you have made a video relating to Parkinson's we would be interested to hear from you....

A patient led conference !
Another idea that has been discussed recently by patients is a conference organised and led by patients, for patients and professionals. This is an idea with huge potential and we would be interested in hearing all ideas.....

Movement and Dance Therapy as a treatment for PD
For a long time there have been discussions on the way that dance and 'big movement' can help with Parkinson's, yet we still hear professionals go completely the other way with this. Many patients have derived significant benefit from both, and are often amazed that despite their walking abillity, there is no deterioration of ability to move to music.

Cycling to a better quality of life....
Science imitates us in finding that cycling is also of benefit! It would be good to see exercise prescribed in early PD as a means of maintaining mobility and possibly as a neuroprotective strategy for the patient.

Quality of Life as a top priority !
Maintaining a good quality of life is very important and for those who experience a faster or more difficult progression of PD life can bring unplanned changes that are difficult to negotiate. Many of these are not solely to do with Parkinson's itself, with lack of general awareness of PD being a big factor globally, especially for people of working age. Patients would like to see better awareness and are actively taking a stance on this.

Exercise on prescription soon after diagnosis!
Patients would like to see this and other non pharmaceutical treatment offered on diagnosis.

 

 

Projects
&
Organisations
we support