Writing your Parkinson’s narrative

Life is changed in an instant.  The ordinary instant.”  Joan Didion

One thing that helped me immensely to accept my diagnosis and to understand what was happening to me was writing my story.  With the encouragement of my psychologist, I sat down at my computer and started to write.  And write.  And write.  Me – the person who hated to write.  Once I started, I could not stop. 7 pages and 3100 words later, I was finished.  For a little while at least.

I started by writing stream of consciousness.  Eventually I went back and organized my thoughts and the narrative started to make sense.  It also helped to put everything into perspective.  It was an eye opener for me.  And it was the first step towards a healthier attitude about living with a chronic illness.  Writing down your thoughts can help separate the imagined from the real.  It is therapeutic to say the least.  And I wish I had done it much sooner after my diagnosis.

As you write, you will probably recognize the 5 stages of coming to terms with a chronic disease in your narrative.

  1. Shock.  I have what????
  2. Denial.  Not me.  It must be a mistake
  3. Anger.  It is not fair
  4.  Fear.  What will happen to me?
  5. Acceptance.  Ok let’s get on with my life.

Start at the beginning.  Your life was changed the minute you heard those words “you have Parkinson’s Disease”.  Actually, it changed before that when things started going wrong.  Writing your story, your narrative, can help you identify those subtle changes that just didn’t make sense at the time.  It can also help you determine where you are in the process of coming to terms with your diagnosis and help you progress to Acceptance.  You may back track at times.  Anger and Fear tend to pop up regularly as new symptoms appear.  Write down your feelings as you document the changes.

Not only will it help you to cope, sharing it with your doctor or therapist can be valuable as well.  How many times have you walked out of your doctor’s office and realize that you forgot to tell her something important?  If nothing else, you can make a list of concerns and questions for your doctor’s visit based on what you have written.

Some tips I found for writing your narrative on the internet from Hope for Women Magazine

  • Write Quickly
  • Write with purpose
  • Write privately
  • Write without rules

You may decide not to share your narrative with anyone,  but it will be there for you whenever you need it.


One response to “Writing your Parkinson’s narrative”

  1. Great work Thanks for all you do Happy Mother’s Day What’s status of women initiative M

    Maria L. De Leon, MD    defeatparkinsons;  PDF Research advocate; Women &PD; ‘Parkinson’s Diva’  

     www.defeatparkinsons.com http://www.parkinsonsdiva.org http://www.twitter.com/defeatparkinsons@DrmariaDe http://www.WPC2016.org


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A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.