Lately I’ve felt like I haven’t really been contributing much to the cause. I find myself in more of a background role, itching to get started again on a new Parkinson’s project.
Emily and I went up to Morristown, N.J., recently for a friend’s fundraiser, and I was telling Stephanie, from the Michael J. Fox Foundation how I was feeling. She reminded me that in supporting those people and getting others involved in the cause, I’m still doing something amazing.
The next week, I really got to see this in action at the Philadelphia Marathon. And I’m so grateful.
Continue reading Supporting the cause by supporting a new Team Fox family member
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.
Continue reading It’s MD not GOD