by Lauren Simmons
People with Parkinson's are often told to speak louder or speak with intention. This is of course because Parkinson's can wreak havoc with our voices and make them soft and hoarse. Maybe it is time for people with Parkinson's to get loud for another reason. Over 200 years ago, James Parkinson wrote his essay called Shaking Palsy where he described Parkinson's. Yes, scientists have been documenting and studying Parkinson's for a very long time. We have been waiting too long for a cure or at the very least, a treatment that will slow this beast down or stop it in its tracks. No one seems to know why it is taking so long. Other diseases have received more funding and attention and have gotten results faster. No one is saying that the people with those diseases aren't deserving of treatments. We all want health and healing. I do wonder why funding for Parkinson's from the NIH is going down each year while the number of people being diagnosed is going up. In the book Ending Parkinson's Disease, the authors note that "by 2030, there will be a 10% higher risk of a forty-five year old individual eventually developing Parkinson's disease than there is today."
Dr. Ray Dorsey said, "We know how to prevent Parkinson's. We just aren't doing it." Are you ok with the status quo? If not, YOU should be doing something about it. Don’t wait for someone else to take care of it. They might be waiting for you to take care of it. It isn’t hard to be an advocate and doesn’t need to take a lot of time. If we all join together, we can make big things happen.
Here are a few things you can do to get started in being an advocate:
- Read the book Ending Parkinson's Disease and then put into practice some of the suggestions in the book. This book is a quick read and a fascinating historical account of how others took action to curb pandemics like Polio, HIV, and breast cancer. (All proceeds from the book go to PD charities).
- Join the PD Avengers and then attend their online meetings and volunteer to help! The PD Avengers is a grass roots organization run by people with Parkinson’s who are tired of waiting. “We are a global alliance of people with Parkinson’s, our partners and friends, standing together to demand change in how the disease is seen and treated.”
- Download the Parkinson’s Advocacy Toolkit from the Fox Foundation. The folks at the Fox Foundation will keep you
updated on policy changes that need to be made in Washington. They even make it a simple process to write to your representatives. Change won’t happen if the policy makers hear from hundreds or even thousands of people. They need
to hear from hundreds of thousands or more. If every person affected by PD (patients, family members, friends) sent a letter, they would get millions.
- Share information about Parkinson’s with others. You can tell friends, neighbors, share on social media or whatever way you feel comfortable but get the word out. Most people think that Parkinson’s is a disease that old men get that makes them shake. We know it is so much more.
Together we can make a difference. It is time to speak up.