CHANGE THE MESSAGE

Monday Night

In the room were so many people who held our fate in their hands, Drug companies, doctors, researchers, charity organisations. What they choose to work on, where they put the money will decide how soon a 'cure' is found. How can I help that process this week?

Tuesday 

 On Monday we received a few emails that shaped our week and certainly our Tuesday. The first was an appeal for some more volunteers and Pauline was keen to help so we met the coordinator and she got a schedule for a few days which did not conflict with what she had already planned to attend. 

Monitoring Device 

The second was a second appeal for volunteers to wear a monitoring device for 3 days during the conference, so I jumped at the chance to help.  I was fitted on Tuesday at 10 am and the device simply went around my waist and I could then forget about it. It would continuously monitor my movements and detect my on off states and any freezing or other motor symptoms  After 3 days it should be able to tell a story and highlight any gaps I might have. Where my drugs could be adjusted to fill in any gaps.  The beauty of such a device as I see it would be when you were having a consultation with your doctor. Instead of a valuation just at that point in time of your condition the doctor could see a full set of data to do a much deeper evaluation of your condition.  The company providing the device is SENSE4CARE , a Spanish company based in Barcelona. 

Pre Congress lectures. 

The opening ceremony is on Tuesday but there are a number of pre-congress courses happening during the day. I headed off to listen to some lectures on the journey of PD and then listened to some advances in treatments. 

CHANGE THE MESSAGE??

Then I decided to pick up on the challenge I set out on Monday, how could I affect that process of what the money was spent on to get the best outcome., and I decided to listen to the Activism, awareness and roles patients play. The first one was wellness activism and that was by Tim Hague. Tim was speaking to the converted anyway, so there was little new there. The second was by Karen Raphael on research activism and Pauline attended that one. I also got some feedback from another  attendee as well and there seemed to be a lot of frustration in that area that patients were not being heard and it was not easy to participate. The third area was tools for activism by Martin Taylor and he shared a lot of good information on where to find what's being worked on. This led to some good discussion and criticism that patients were not able to drive areas of research. This theme carried forward into the panel discussion that followed with some great (strong passionate and emotional) contributions from patients arguing that we do a really bad job at portraying our disease as something that is OK to live with, but the reality is that we are dying, it’s killing us all. We have to get a more urgent message through. If we cannot get that through we do not compete for the funding and focus cancer and Alzheimer's gets. There were voices that reflected that for the individual patient that may struggle with that as they need to see the hope. I just have to get personal on this, as I still say I have not read the final chapters of the book, so I don't really know what this disease does to me. So maybe when people ask me how I am instead of saying fine, I need to say I'm dying.  Are we ready to change the message? Some of the audience certainly were. 

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Joe Lacy is a Blogger Partner for the 5th World Parkinson Congress. Joe lives in Malaysia and shares amusing moments from his life on his blog A Long Way From Tipperary.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not reflect the opinions or positions of the World Parkinson Coalition®