You Don't Die Of Parkinson's You Die With It?

I love Michael J. Fox, but I most definitely disagree, wholeheartedly, with his recent media blitz on “You don’t die of Parkinson’s, you die with it”. It’s a distinction without a difference. I guess that’s a matter of interpretation but let’s dissect this a little… 

1) Federal funding for a disease, among other things, gets decided based on the number of death certificates registered for that disease or malady, so if you don’t die of Parkinson’s, then what? Pneumonia gets the funding... if that’s what you died of. How silly! Last year the incidence of Parkinson’s increased, yet the federal funding decreased by more than 20%. 

We recently published “The Gift of Hope”. The only way you know if you died of Parkinson’s or a Parkinsonism is through a neuropathological autopsy. My mother was diagnosed with Parkinson’s and lived with it for eight years. Her autopsy indicated she had Progressive Supranuclear Palsy, a Parkinsonism. Parkinson’s is misdiagnosed at least 50% of the time. 

2) Parkinson’s is a Movement Disorder. If your lungs can’t move, if your heart cannot move, if your stomach or kidneys cannot move, what do you die from? Pneumonia? Let’s get real.  

Parkinson’s is not a death sentence, it’s a new job. How you get through the ups and downs of its progression is what brings about the best quality of life possible. You can sit back and say “Parkinson’s has made me a better person,” as Michael J. Fox has said, and perhaps that is so. Then let’s use how better you’ve become for the advantage of garnering the greatest quality of life possible. And let’s do that for people with lots of money and for people who have limited funds. Parkinson’s doesn’t have boundaries. Yet the rich have access to remedies that the poor can’t reach. Let’s try helping everyone.

Our organization cannot raise money for research. Our job is to be in the trenches with the families affected by Parkinson’s.  It’s not a very sexy mission, so funds are few and hard to raise.  We don’t have celebrities working on our behalf. If PRO had only a small percentage of the billions of dollars garnered because of Michael’s name, imagine how many more people we could have helped.  

Let’s be honest. Parkinson’s is a very tough disease.  Knowing its progressions helps you do your “life planning” but sending donations to a foundation that doesn’t believe that you die of Parkinson’s might be missing the boat. Let’s keep the urgency up and let’s get to at least the reversal of Parkinson’s. 

Check out ICBII’s work on the front page of our Newsletter. They have developed a smart molecule that penetrates the blood brain barrier. We understand that it may be the only biotech that can permeate the blood brain barrier in the world.  The molecule targets and destroys the plaques that cause Parkinson’s symptoms, allowing healthy cells to regrow—it has been proven in mice—let’s get this proven in humans. This is not PRO’s job, but we certainly can keep it in the forefront of people’s minds.  We don’t have to wait for someone else to get the job done.