When The Doo-Doo Hits The Fan

After years and years of writing about life with Parkinson’s disease for the purpose of helping people with Parkinson’s understand what is happening to them and what might, as well as helping people who don’t have Parkinson’s to understand what we, people who have PD, are experiencing, because so much of Parkinson’s can’t be seen.

I was a self-proclaimed expert in explaining PD. I wanted to write the book for a PWP [person/patient with Parkinson’s] to hand to someone they wished would better understand what was going on in their PD world. It is tiring to explain how we are faring, one person at a time. Wouldn’t it be nice to just hand over the story and let them read it, instead of you having to explain a complex situation where the disease symptoms are diverse and unique for each of us, and the symptoms interact with every aspect of our lives, past and present?

Compounding the difficulty is that medicine and science don’t understand the disease; there are side effects of medication and PWP, today are diagnosed much younger, are taking an unprecedented number of different drugs for an unprecedented number of years, and there is no way of knowing how each of us will metabolize our cocktail of drugs or how these drugs will interact. Drugs are tested alone, but in real life, we are taking many drugs at the same time.

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