Hi Debi,
Always really nice to see you posting. This news just dropped into my email box, so had read it before coming to NT. While Bastiaan Bloem's conversation is of great interest, and obviously is doing something very important in that the professional world may actually sit up and take notice, he also mentions that he has loads of patient video's that he has collected that document the creative ways that patient's are actually looking at the problems of movement.

Doesn't this just underline the need for patient knowledge to be studied - and for patient thinking to be harnessed and brought to the table.

MJFF is helping to make this important information available to a wider audience, it would be so good if it also was able to go that step further and truly bring patients and the people who work in their name together. At the present I do not think there is a problem with the patient voice, but there is still a problem with it being heard.

The things that Bastiaan Bloem is talking about have been discussed here. In the UK there is a group who cycle together, it is inspirational to hear one of their people talking on this, in ordinary conversation, no axe to grind, about how they have advanced patients cycling miles, and the huge benefits to general health that brings. They are doing it for themselves, and it is working for them.

This patient knowledge could be worked into PD treatment programmes from the outset, if neuro's and other health professionals would really start to see that there is something to what patients are saying and validate it.

For instance, these amazing videos that Bastiaan Bloem discusses are a result of patient perception of their own condition, any patient who takes the trouble to record something like this understands that their experience is clinically significant - they should be studied, until they are they remain anecdotal and inadmissible scientifically.

The search for a cure is hugely important, but patient quality of life is of no less important.

It cannot all be about the search for the grail, and not about the journey itself. For every thing spent on PD research there is an parallel and ongoing human price being paid by patients, daily, and it is often clear that our doctors simply do not know how to help us. But among us there may be some of the keys that will help unlock the information needed to get to where is needed.... BB's work just underscores the need for patients to be seen as essential to the process.

Best Wishes
Lindy