I am always amused when I hear people describe themselves as "easy-going" when I have found the opposite to be true! So when one of the folks at the NIH said I was "difficult," I had to step back and look at my behavior.
I have had Parkinson's for 11 years now. And I find I get impatient about how I am treated in clinical trials by the clinical nurses and doctors. I now see that behavior I thought of as "being direct" and "standing up for myself," may have been mistaken (often) as pushy, rude, and/or difficult. Of course this was never my intent! Unlike the main character of the "Doc Martin" television series, I really do care about getting along and being considerate of others.
Now when I have a problem, I pause and take a deep breath. I explain calmly about parkinson's symptoms, whether freezing or excess fatigue or falling or … and if any of my courteous requests are politely turned down, I ask if there are any exceptions? Is there anyone else or some other entity to whom I can plead my case?
A little civility, politeness, and understanding of the other person's situation goes a long way.
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And I hope the people whom I encounter will also consider my circumstances when they respond to me.
PS I have created a very short survey (7 questions), about why people with PD do or do not join clinical trials. Totally anonymous. If you would take a look - I'd greatly appreciate it!
https://www.surveymonkey.com/s/pd_survey_trials |
