“Nothing is true unless it is your own experience. This is your protection against being duped or misled.” – Barry Long
Over five years ago, I posted about a book; The Salt Path. This was the story of a couple dealing with financial hardship, homelessness, as well as living with a devastating diagnosis of Corticobasal Degeneration (CBD) – another horrific progressive neurodegenerative disease.
I described how this novel was a beacon of ‘hope’ for me. I recommended it to friends in my Parkinson’s community and also purchased many copies and gifted them to some very dear people in my life.
So when it came to light last year, that the entire story was wildly untrue, in that the diagnosis is not considered to be authentic, and that the author has proven to be both a thief and a liar, I felt incredibly duped and even a little angry. You can read the investigation details here; The real Salt Path: how a blockbuster book and film were spun from lies, deceit and desperation or simply search on-line as there is a plethora of information.
Although I still believe that physical exercise and experiences in nature are beneficial to those of us living with a neurological disorder, the misrepresentation displayed in this novel is unforgivable. It reached such a wide, and vulnerable, audience and was even made into a movie. Yet, those who knew the actual couple had a very different story to tell.
Giving people false hope through claims of potential ‘miracle cures’ is incredibly reckless. In this case, readers were lead to believe that an extensive amount of hiking and wild camping were responsible for eliminating the symptoms of CBD – even suggesting that the diagnosis was reversed. Making such claims could encourage one to embark on a similar adventure with unrealistic expectations. It could also leave one to feel guilty and/or shameful because they are simply unable to pursue such a physically taxing activity given the nature of their own diagnosis.
Lying to, and profiting from, an already fragile community is despicable.
Going forward, I need to be more vigilant about the information I read, watch, or listen to when it comes to my disease. Being cautious around potentially misleading advice and verifying sources of information are critical to avoid getting caught up in any ‘Snake Oil’ cures or treatments. (Beware the Magic Beans and Snake Oil)
True stories aren’t always true.
Pondering PD 