Monday, February 24, 2020

Rookie Mistakes: Part 2 Does My Doctor Think I'm A Pain In The Ass?

-In Part 1 of Rookie Mistakes, I wrote about why newly diagnosed patients should have a Parkinson's doctor who is a Movement Disorder Specialist and not a General Neurologist.

Most patients who first hear the words, "You have Parkinson's disease" lose a week of sleep Googling "Parkinson's disease." That is the #1 Rookie Mistake. 

Your first task should be to research Movement Disorder Specialist's you can see. This is arguably the  most important decision you will make as a new Parkinson's patient. Your comfort, your disease progression and the quality of your life sits squarely in the hands of two people: You. And your Parkinson's doctor. 

You and your doctor are a team. You provide data. Your doctor provides you with a game plan.

To thrive and survive Parkinson's disease, you must practice relentless self-advocacy.

I use those words in almost every blog post. No one knows what is happening to you. So much of Parkinson's disease can't be seen, even by those closest to you. It's nearly impossible to articulate the whole of what happens to our minds, bodies and souls. Even if we could, no one can understand us more than another person with Parkinson's disease. 

And that includes your Parkinson's doctor. Unless you Parkinson's doctor is also a Parkinson's patient.
Dr. Maria DeLeon - Movement Disorder Specialist and Young Onset Parkinson’s patient diagnosed about 15 years ago. Blog: DefeatPaekinsons
Dr. Soania Mathur - Family Medicine Doctor and Young Onset Parkinson’s patient diagnosed about. 20 years ago. Blog: UnshakableMD

There is no precedent for your unique symptoms. There really are no symptoms of Parkinson's disease. Parkinson's disease doesn't exist on its own. Every symptom is inextricably bound to your life and your entire body and mind. 

Your Parkinson's doctor cannot see what is problematic to you. You are the only one who can make your needs known. And that stream of data is never ending in Parkinson's disease. 

Things change and new data given. Things don't change and you have to be relentless in continuing to ask, over and over, until you get a handle on the problem de jour. You may have to tap into a number of doctors and you may be the conduit in putting together the various pieces of your PD puzzle as each doctor gives you a piece of your puzzle.

This is a disease of endless problem solving. We don't go straight downhill. The long term trend might be down, but like the stock market, in between are ups and downs. Problems and problem solving.

Our efforts to problem solve are often misconstrued as complaining to our loved ones. But your doctor should see this as problem solving and should be in there with you trying to figure it out.

There will be countless times, in between clinic visits, that you will want to call your doctor about a problem and will do battle in your head trying to determine if your problem is call worthy. You will wonder if you call too often, will you doctor think you're a pain in the ass and not be as willing to respond to you as quickly in the future?

So, when you first meet with a Movement Disorder Specialist (and I'd suggest setting up appointments with a few of them to figure our which doctor you want on your team), there are a lot of questions you will ask.  

The most important question I've had over most of the past 15 years since my diagnosis is the one question I've never asked.

Does my doctor think I'm a pain in the ass?

It's a question that comes with the territory of ruthless self advocacy.

Of all the questions you will have, this is the one you really need to know!

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