Tuesday, May 18, 2021

Open letter to my future neurologist



To my future neurologist:

The day that we meet may be a small thing for you.   You will probably be busy, and I will be one patient in the midst of many.   But I will never forget the day that I meet you.  You will diagnose me with Parkinson’s disease, you will go on with your day, and my life will be forever changed. 

 I will have been through a long process before I even meet you.  I’ll have to recognize the changes in how I am moving and feeling.  I’ll try to figure it out on my own, explain it, or reason it away.  My friends or family or other even other doctors will tell me their experiences and their explanations.  By the time I get to you, in some ways it will be a relief to have an answer.  On the other hand, it’s an answer that will change everything for me.

Please don’t try to minimize the importance of my diagnosis.  Statements like “something else will kill you first” or “there are worse things than PD” may be meant to reassure me, but please remember that at that very moment, I am realizing that I have a progressive and incurable disease.  It doesn’t really help me to know that you see things that are worse, when I am watching PD erase my vision of my future.

I am going to need to rewrite my future with PD in it.  I don’t expect you to be able to predict everything.  I do expect you to recognize the uncertainty.  Talk to me about the range of symptoms I might have.   Tell me that you and/or someone from your team are available for questions.  Tell me how to contact you.  Tell me where to seek more information.  Tell me that I am not alone.

Don’t leave me unguided in the web of contradictory information on the internet.  Give me one or two sites that you are familiar with to focus on.  Know about your local support group and tell me how to find it.   Give me a short brochure with essential information about the disease so that when my spouse or friend asks me questions that I can’t answer we can seek the answers together.

Give me more than pills and an appointment to return in three months.  Three months is an eternity in the face of so much uncertainty.  Tell me that you know I’ll have more questions and that you want to see me again soon to address them.  You might think that if you’re not going to change a medicine, then you don’t “need” to see me and I don’t “need” to see you.  But that appointment will remind me that I am connected to experts who care about me and know my disease.  

You are the expert in my disease.   You don’t know everything about it, or about me, or about how it will affect me.  I understand that it is not possible for you to know all that.  I know I’m lucky to see a neurologist; some people never do. You have a lot of demands on your time and I may be a small part of your life.  Know that you are a huge part of mine, and I will never forget the day that I meet you.


Your future patient in the midst of many

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