I ask plenty of rhetorical questions just to make a point, so you may choose to answer these privately or publicly, and I hope you share some of these with your friends and family.
Put your chin straps on, here we go! I’ve been listening to you in private, in support groups, and read everything I can get my hands on.
“HOUSTON, we have a problem ...”
Have Parkinson’s medications changed your personality, and how?
How often and to what degree do you suffer depression and/or anxiety? Do you know exactly how depression presents in your daily life?
If you have DBS, and are off the usual PD medications, do you feel more balanced and in control emotionally? Do you feel more “yourself”?
If you’ve had an adverse reaction to a drug, how long did it take until your chemistry somewhat evened out again?
Has anyone close to you commented on changes observed during shifts in medication, or when changes in medication are necessary?
If you refuse PD meds, why?
Are you ashamed of being emotional or irrational during off times, and do you try to hide them, or do you give yourself a break?
Do you have access to a neuropsychologist? If so, how are they helpful?
Does your movement specialist and or a neurologist inform you in detail about what to look out for?
Have you been in a relationship with anyone who either refuses to acknowledge or mocks your challenges?
Are you able to communicate clearly with loved ones, so they can try to understand what you’re experiencing? Because this disease affects anyone within close range, it’s hosts easily become potential victims of persecution and undeservedly harsh judgments. Also, intimates absolutely need to know the difference between choice and symptom.
These questions are part of a larger body of work. Feel free to pass them on for the sake of information and education. It’s not always comfortable to discuss our emotional and mental landscape, but I believe it is more important then the more obvious disabilities over time.
Denying or refusing to reflect upon how Parkinson’s has changed us, or how it affects others will ensure miscommunication and possible resentment. Ask caregivers and intimates for their observations.
Without proper information, there is only more suffering, and that’s getting old.