[johnt]

Do you ever wonder whether turmeric slows down the progress of your PD? Or whether exercise has an impact? Or whether something about your environment gave you PD in the first place and whether it is now affecting the rate of your deterioration? Or wonder what type of music will best relieve, if only briefly, some of your symptoms? Or wonder whether you're in a cluster of PwP?

I'd like to know the answers to those and a thousand other questions. Big pharma and big science provide some of the answers and they will provide more answers over time. But I'd prefer not to wait: seven years into PD, I don't have the time left to wait 10 years for something to get to market and even then possibly to find it either too expensive to use or that it only gives a limited marginal benefit.

So what do we do? We let big pharma and big science do "big" things. We wish them well. They have a lot of good, bright people. We should support them if we can. But, in my opinion, we shouldn't stop there and wait for the cure to be given to us. We should do our own science, "small" science. "Small" science can be big if enough people do it.

We, PwP, could be the biggest resource to finding therapies for PD.

At its simplest "small" science involves measuring, aggregating and analysing our symptoms. We would benefit greatly if, rather then saying "this therapy makes me less stiff", we could say "it made me walk 11% faster". And, rather than having just a few anocdotal reports, we could say "this therapy led to an average 27% improvement on a group of 500".

How do we accelerate progress? We need the infrastructure to collect, store and analyse data.

As a very small step to this end, I am building a computer based system, PDMeasure, that integrates PD survey data with tests that measure PD symptoms. The data can be aggregated for each person, and aggregated over time. All data is stored anonymously. PDMeasure will be freely available online.

Data on its own has little use. We want people to analyse it. To make this as easy as possible, the data is open to anyone to access.

A prototype is ready. I am looking for people to test it, before going live in, perhaps, 2 weeks. If you have 10 minutes to spare to test the system, please PM me.

Thanks.

John