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In response to my email of yesterday I have received many messages to my own email address, thanks for those, and please keep them coming. Jim Caldwell responded to the list, and I wanted to clarify what we are trying to do with the information we receive. Getting your feedback is just the first step. Jim wrote: "EPDA's project on Understanding Quality of Life of PwP & the Caregivers will undoubtedly contribute to better understanding of the needs of Parkinsonians. However it is disappointing that the time constraints placed by the deadline of Friday 25 July for submissions, prevents the possibility of an in-depth international representation of experiences and opinions. To obtain a reasonable number of contributors from the 6000 plus Parkinsonians in New Zealand would take at least 6 to 8 weeks, not 4 Days." Yes I am afraid the deadline is a little tight, apologies for that. What we are trying to achieve in that time is not to get a full international response from all PWPs around the world at this point in time. We are hoping to get your experience of what the factors are that affect quality of life. We are also talking to PD nurses and neurologists and academics. This list that we compile we hope will be as comprehensive as possible. We may miss a couple of things. But.. The list of factors and influences will be incorporated into a questionnaire that we will use in the survey to interview PWPs and their carers. At this point in time, through open questions, we might pick up some influences if they have been missed. This will provide any missing pieces of the jigsaw. The survey will use measurement scales developed at Oxford University to assess what impact on quality of life each of these influences has. We are speaking with academics with much experience of running such surveys to measure quality of life, and this means that the way the survey will be run is a good way of assessing the impact of PD on PWPs' and caregivers' lives, and what makes things better. I hope that this explains a little more clearly what we are trying to achieve, but please get back to me with any responses or questions. Best wishes to all of you Simon Morris email: [log in to unmask]