A MANIFESTO FOR MDS PART 3

 

The take-away: 

 

Question everybody and everything. The experts are guessing. Parkinson's patients are the real experts. 

Listen to your doctors, but trust your gut.

 

Nobody can do that other than ourselves. Which is why I believe 

 there are 3 keys to surviving & thriving with PD. 

 

The first is to become an expert in your own disease. 

 

The second is to practice relentless self-advocacy.

 

    Being an expert doesn't mean you have to know the answers. Being your own expert means you have to know the questions.

 

The second key is the practice of relentless self advocacy. That means being a pain in the ass to your doctors. Asking questions over and over your whole network of experts. It means not believing that there is no answer. there is. There’s a difference between having no answer and having no one know the answer. You have to be your own detective to do that. You need to be an expert in your disease.

 

The third key to surviving and thriving is tap into the Parkinson’s community. Why start your education from ground zero when we’ve done that work already. Piggyback on what we’ve already discovered. Share with us what you’re discovering. This is a DIY disease you cannot DIY. this is the disease that no one can possibly understand other than another patient with Parkinson’s. You can’t become an expert in your disease by reading research, or watching the experts on webcasts. We may learn how to treat Rees from our doctors, but we learn how to live with our disease and manage our symptoms from each other.

 

Until there’s a cure, there's a community.