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.

Why do I write?


For those of you under 45, you probably never had to write without a computer.  I always hated the process of writing.  When I was in high school and college, the first thing you would do is outline what you wanted to say.  Then fill it out by writing, ON PAPER, whatever your assignment was.  Once you edited your paper, you would then type it on your manual typewriter.  If you made a mistake, you would have to either correct it by using White-out or start the page over again.  Needless to say, it was a long, tedious process and I hated it.  I briefly considered law school but decided against it because of the writing involved.

Fast forward 25 years.  I became president of my synagogue and then another organization.  Writing a monthly column for the newsletter was part of the job.  But now I had a computer and could write and edit as I went along.  Wow!  This actually became fun.  I no longer avoided writing.

Now I have Parkinson’s Disease.  One of the side effects of either the medications or the disease, can be increased creativity, along with obsessive behaviors.  And that unleashed the need to write.  First I started writing for myself.   Because I also have a need to research whatever ailment I have, (my OCD) I became a resource to others who were newly diagnosed with PD.  As a result, I started receiving calls and emails from people asking me if I would mind talking to their friend or relative who needed information.  That is when I started writing for others.  I actually wrote about this in a previous post called Creativity and Parkinson’s.

That was the reason behind starting the Twitchy Woman blog.  I could satisfy the urge to write and reach out to others at the same time.  It has been a wonderful experience and as a result, I have connected with others across the US and in many other countries who have PD.  We share our stories and information about the latest research and treatments, and hopefully help each other find our way to living well with Parkinson’s.