Guest blogger Bob Harmon and his family started blogging to share their journey with Parkinson's and show how it affects everyone in the family. The Harmon family hopes that their individual†voices and shared struggles can show others that they're not alone. This post originally appeared on their blog.†"Like" them on Facebook.
I have the honor to be a member of a Young Onset Parkinsonís online support group. I have found the members question diagnosis issues and symptoms more than the ďolderĒ PD patients (like me). Most of the issues that pop up on a recurring basis are questions about, and displeasure with the medical communityís ďbedside mannerĒ. Yes, I get it- Parkinsonís can be difficult to diagnose, and each personís 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 ďpros from DoverĒ (from the MASH movie) to help us on this journey. I go to a movement disorder specialist 60 miles from my home. Why? Because Parkinsonís is his specialty. Yes, other doctors with general or less- focused fields of expertise can diagnose and treat you, but they donít 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 donít 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. Itís just a different vehicle. The title at the end of his name is MD not GOD. If God was my doctor itís because my MD has failed. Have I ever fired a doctor? HELL YES. Was it because I didnít 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 donít 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 donít share what is going on in your world, then the doctor canít 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 ďrat you outĒ. That is part of their job. Donít answer ďfineĒ when itís not. My daughter Emily, ratted me out at an early visit and the ďeverything isĒ fineĒ 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 ďThanks EmilyĒ.
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 doesnít live up to his obligation of being what you need, it may be time to ďchange partnersĒ (Stephen Stills).