Tuesday, May 18, 2021

Open letter to my doctor



December 11, 2015

Dear Doctor:

It has been over 7 ½ years since you diagnosed my PD.  Since that time, I have come to appreciate how difficult it is to diagnose PD.  I know now how fortunate I was to have made my appointment with a movement disorder specialist.

On one hand, it was good to know what was causing my extreme fatigue and other symptoms.  I had been diagnosed with essential tremor in 1991 and thought my problems must be connected to that.  Since I had been assured by general neurologists at different points since then that I did not have PD, your diagnosis caught me very much by surprise.  I know you sensed my extreme anxiety at that time.  You assured me that there were “worse things than PD” and that, since my motor symptoms were mild it was possible that I might be able to live a fairly normal life, though it was hard to predict since the rate and nature of progression varies greatly from one individual to the next.   You advised me to try to not worry about it and we agreed to meet again in three months.

I want to tell you more about how my life changed during the days, weeks, and months following that appointment.  I really didn’t know much about PD when I left your office except what you told me in the few minutes we spent following the diagnosis.  I remember sitting in the waiting area trying to process what had happened before I left to go home.  I think I came to the conclusion that you were trying to minimize the diagnosis to reduce my fear and that the reality was that my life was not going to play out as I had imagined.  I called my wife, Linda, and, without saying why, asked her to leave work in the middle of the afternoon and come home as there was something I needed to share with her.  We talked about the appointment and the diagnosis, she asked questions I couldn’t answer, and we cried together.  I became committed to learning as much as I could through books, the internet, and talking to people I knew who were living with PD.  I learned a great deal during this time.  In hindsight, probably too much since the net result was increased anxiety.  Linda immediately went into denial and was convinced that there had to be some other explanation since I had been assured previously that I did not have PD.

I have had plenty of time to think about what happened at diagnosis and in the time that followed.  It is important to acknowledge that there is no way to avoid patient/caregiver anxiety at a time like this.  That said, I wish I had been given some kind of brochure that provided guidance and information that, based on input from patients and caregivers, I both wanted and needed to know.  Rather than attempting to downplay the seriousness of the diagnosis, I would have liked to hear that you will be an ongoing source of support.  If you had provided an email address and encouraged me to contact you with questions, that would have been appreciated.  At a later date, a brochure providing more advanced guidance and information for patients with more experience would have helped.

In closing, I want to thank you for everything you have done for me.  I realize and appreciate that you are committed to my wellbeing.  I hope this feedback is helpful.


John Q. Patient

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