We sent out an email asking a lot of people we have met and touched us through our travels so far to explain their experience with Parkinsons Disease. We were not surprised to see our new friend and one of the most inspirational people we have met on this tour, JP Sutherland to respond first. JP knows more about what it is like to deal with PD and its trials and tribulations than we could ever imagine, so I think his words have so much more validity.
Thank you JP!
JP Sutherland:
So when I was asked to write something to explain my experience of being diagnosed with young onset PD and why raising money for research is so important, I was very excited to share my story because I know there are many people out there like me that have been through a rollercoaster of crap trying to get answers. But my wife reminded me about the politics of speaking out. She has been through so much and is scared of offending any of the neurologists I have seen. Let me explain.
My diagnosis has never been straight forward and I have been diagnosed with everything from functional disorder, Atypical PD, PD…… One of the reasons for this is PD is a clinical diagnosis; there is no test for PD. Unfortunately the there is a huge misdiagnose rate in PD. It can takes years for some people to get diagnosed but people can also be diagnosed with PD and not have it. That means there could be a lot of people in clinical studies that do not have PD and people in the control group that do, messing up results of studies.
That is why raising money for research is so important not only for a cure but for a test for PD. I truly believe finding a test for PD is vital step into finding a cure.
Out of all the charities I have looked into THE MICHAEL J. FOX FOUNDATION for PARKINSON'S RESEARCH is one that stands out as using funds to make the biggest difference and uses the money the most efficiently. So when I heard about Scott, Sean, Ross and Ryan Mackinnon biking across Canada, for Team Fox, I was eager to help out.
It is unfortunate that they have found out about the politics of fundraising and how territorial different charities can be.
Please show your support for these amazing men that have taken on such a grueling challenge in order to help millions of PD suffers and their families. It means the world to my family, friends and me.
Thank you JP!
JP Sutherland:
So when I was asked to write something to explain my experience of being diagnosed with young onset PD and why raising money for research is so important, I was very excited to share my story because I know there are many people out there like me that have been through a rollercoaster of crap trying to get answers. But my wife reminded me about the politics of speaking out. She has been through so much and is scared of offending any of the neurologists I have seen. Let me explain.
My diagnosis has never been straight forward and I have been diagnosed with everything from functional disorder, Atypical PD, PD…… One of the reasons for this is PD is a clinical diagnosis; there is no test for PD. Unfortunately the there is a huge misdiagnose rate in PD. It can takes years for some people to get diagnosed but people can also be diagnosed with PD and not have it. That means there could be a lot of people in clinical studies that do not have PD and people in the control group that do, messing up results of studies.
That is why raising money for research is so important not only for a cure but for a test for PD. I truly believe finding a test for PD is vital step into finding a cure.
Out of all the charities I have looked into THE MICHAEL J. FOX FOUNDATION for PARKINSON'S RESEARCH is one that stands out as using funds to make the biggest difference and uses the money the most efficiently. So when I heard about Scott, Sean, Ross and Ryan Mackinnon biking across Canada, for Team Fox, I was eager to help out.
It is unfortunate that they have found out about the politics of fundraising and how territorial different charities can be.
Please show your support for these amazing men that have taken on such a grueling challenge in order to help millions of PD suffers and their families. It means the world to my family, friends and me.
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