It’s often awkward to know how to respond when people ask me "How are you doing or feeling with Parkinson's Disease (PD)?" When talking to my friend, Gayle, her suggestion was to say "50/50." This means I am doing equally good and bad and/or my health is equally favorable and unfavorable.
Then if people want to know more specific information, they can ask me and I can elaborate and be direct in my response ("Sometimes I don’t feel 50/50, but I feel so sickly that it’s more like 20/80.").
I have been guilty of being too optimistic when my response was “great”
I have been guilty of being too pessimistic when my response is “I hate this @#$%^&*+ disease,” or “There will be no cure for PD in my lifetime.” (20/80)
I have also used some neutral or realistic responses such as “I have good days and bad days” or “It‘s not too bad considering I’ve had Parkinson’s for 20 years.”
Keep in mind that PD is a chronic disease, currently incurable and that a cure in my lifetime is unlikely. It is sometimes difficult to maintain hope.
Most people want to be around me only if I'm feeling well and not whining
about my health. People absorb my worries and become fearful that they too will develop similar symptoms. They see me as a cheerleader as well as a conqueror of all things problematic with PD and DBS. They want to be inspired by me.
The dilemma is whether to be brutally honest and tell them the gruesome details of PD or to sugar-coat the symptoms in order to make PD more palatable.
I think I’ll stick with “50/50.”