I have the honor to be a member of a Young Onset Parkinson’s online support group. I have found the members question diagnosis issues and symptoms more than the “older” PD patients (like me). Most of the issues that pop up on a recurring basis are questions about, and displeasure with the medical community’s “bedside manner”. Yes, I get it- Parkinson’s can be difficult to diagnose, and each person’s journey with the disease is different. I know treating the symptoms is extremely patient specific. But those circumstances are excuses.
First and foremost, I believe in finding the “pros from Dover” (from the MASH movie) to help us on this journey. I go to a movement disorder specialist 60 miles from my home. Why? Because Parkinson’s is his specialty. Yes, other doctors with general or less- focused fields of expertise can diagnose and treat you, but they don’t focus on the treatments that are coming down the road, and they are not leading the way in research. When something new comes out, I don’t want to be the last to know. I do a lot of online research and my doctor and I talk about it at my visits. That may surprise you that I question my doc about treatment options but that is the nature of our relationship.
So, you are thinking Bob is not a doctor. What right does he think he has being proactive in his treatment? I believe it is our absolute right. My doctor works for me just like a car mechanic. It’s just a different vehicle. The title at the end of his name is MD not GOD. If God was my doctor it’s because my MD has failed. Have I ever fired a doctor? HELL YES. Was it because I didn’t like the diagnosis? No, it was because he forgot who was boss.
This is not a doctor bashing post. I want to make the point that the doctor is a partner on YOUR journey just like your care partner. If you don’t have a doctor you have confidence in, you are with the wrong doctor. There is a huge caveat here. You must do your part. You must prepare for your visit like a test or speech. If you don’t share what is going on in your world, then the doctor can’t help. Your off- time issues may just be a timing thing. Keep a journal so you can give detail. Take your care partner with you, so they can “rat you out”. That is part of their job. Don’t answer “fine” when it’s not. My daughter Emily, ratted me out at an early visit and the “everything is” fine” lie was addressed and I received a change in med time and the non- issue (in my mind) was fixed and my quality of life improved. So, once again “Thanks Emily”.
To the doctors who are doing a good job, thanks and keep it up. To my fellow travelers, find a good partner on this journey and if the doctor doesn’t live up to his obligation of being what you need, it may be time to “change partners” (Stephen Stills).
Two Shoes on Again