Parkinson

Shared Experiences and Parkinson’s Disease — Out-Thinking Parkinson’s

By Florencia Cerruti, person with Parkinson’s Disease and author of Rebirth at 50: in the end, it was not The End.

I can only say that I couldn’t agree more with every word of Gary’s article on the role of shock and developmental trauma in Parkinson’s Disease. My pre-diagnosis personality, at 47, matched Gary’s description exactly. In my case the shock was followed by five years of not feeling able to talk openly about the diagnosis, during which time my major therapy was writing. I finally decided, or was convinced, to publish the pages I wrote during those first years. My surprise was enormous when I began to receive the comments of my readers: “I am just like you: controller, perfectionist, provider”. I was also struck by the number of readers who told me that they had had a traumatic episode in the years before the diagnosis. So had I.

It is now known that the illness begins much earlier than diagnosis, I interpret this to mean that the shock trauma triggered the illness to the level that symptoms became obvious, although these had actually begun much earlier. In my book, I also talk about evolution, growth, finding a purpose, and about the pleasure and relief of freeing myself from the heavy superwoman cape that I used to wear.

I also absolutely agree with every word in Gary´s suggested approach to caregiving for people with PD. When I began to share my writings from the first five years post diagnosis of PD, a psychologist who read those first pages told me it was not common to find this kind of insight coming from the insider, and asked me to write something for “the others” – those with a friend, relative or co-worker with PD.

There are lot of overlaps in what I wrote with Gary´s ideas. First, the need to “see past the disease”. I wrote:

“I wanted to get people to see Parkinson´s through me and not me through Parkinson´s. I didn´t want – then or now – the disease to define me.”

Gary says “not many people understand how much stress affects us: for me, stress is the real killer.” I say that stress is as Kryptonite for superman:

“Remember that intense emotions are to the person with Parkinson’s what Kryptonite is to Superman… They weaken them, they hurt them; they exacerbate their symptoms… So don’t insist if he/she doesn’t want to attend a heartbreaking funeral or a trial hearing, or get involved in a difficult or painful argument. It does him/her a lot of harm.”

Applauding, celebrating little victories, rewarding, encouraging, taking into account how hard it is to admit that one can no longer cope like before, and many other tips mentioned in Gary´s article are also included in what I independently wrote too.

I emphasize in my writing those attitudes or gestures that I appreciated or that would have been good for me, and that I have a feeling would work most times. I was surprised on how much I found to share with “the others”, and I organized those ideas into these themes:

  • unconditional love, pampering and encouragement;

  • be really willing to listen;

  • be explicit with words and deeds;

  • get informed to accompany, to offer resources, to understand our decisions;

  • show us a way to get the shame out of the way;

  • do not overprotect, do not press, be inclusive, and… arm yourself with patience;

  • put yourself in our shoes to avoid unhelpful comments or attitudes;

  • help us not isolate ourselves;

There is so much “the others” can do not to make more difficult what it is already so difficult.

Gary Sharpe’s review of Rebirth at 50: in the end, it was not The End By Florencia Cerruti.


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