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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Keeping our Sense of Wonder - Knowing what we don't know

Terri Reinhart

This week I joined a small group of people with movement disorders at the University of Colorado Health Sciences Center and we had the privilege, once again, of being interviewed by groups of 2nd year medical students. I've done this for five or six years now and I've come to appreciate what I learn as well as the opportunity to teach the medical community a little bit about the reality of living with a movement disorder.

Intended to be a learning experience for the students, I believe it's also important for the teachers - the experienced medical doctors who are in charge of preparing the next generation of health professionals. We expect the students to be impressed when they hear about the realities of living with a movement disorder, but we don't expect the doctors to react. They've heard it all before.

During the interviews, however, they are listening in a much different way - through the perspective of the students. The students take things slowly. They hesitate. They ask their questions and wait. They are not thinking of the five (or ten or fifteen) patients still to be seen. They aren't trying to put together a diagnosis as we are speaking. They don't have the same knowledge or experience as the doctors and they know it. 

Something magical often happens. The doctor hears, really hears and suddenly comprehends one of the challenges we go through as patients. The students responded with interest and sympathy when they heard how drug side effects caused serious problems for me for two years before anyone, including the neurologist, knew what was happening. The doctors reacted more strongly and responded with , "Wait, what was that?" and they began asking me questions about what they could have done differently. One year, the doctor turned pale and seemed to forget the students were in the room as she asked me question after question. 

They realized how much they didn't know and this is, I believe, the best lesson for the students.  

I had symptoms for 5 years before I was diagnosed with Parkinson's disease. Looking back, it's not the length of time which was so frustrating, it wasn't even the misdiagnoses. My PD presented itself in a way which differed from the classic symptoms. The frustrating times were when I had doctors who were so very, very sure of themselves.

It's a fine line, I know. Doctors need to be confident in their abilities, otherwise they would be second guessing themselves all the time - and that isn't healthy for them or their patients. Having the ability to say, "I don't know. I'll have to think about this and talk with some of my colleagues" when they have an unusual situation is reassuring, at least to me. 

It means they haven't lost their sense of wonder. It means they know there's a lot they don't know. These are the best doctors.