Two of the members of the Parkinson’s Disease (PD) Readers Club kindly asked me how I was doing this summer. I normally filter my words when I talk to people, but this time my unfiltered automatic response was “UGH.” I wasn’t sure what UGH really meant until I looked it up on Dictionary.com and the following is the definition: UGH is a term that means to be disgusted or to show disapproval. Example "UGH, I don't want to go to class today..."
" I realized later that UGH wasn’t a very helpful response, it interrupted our interaction and didn’t encourage the continuation of our conversation.
I struggle between providing Too Much Information (TMI) vs. Too Little Information (TLI). TMI can overwhelm the listener, who may tune me out. If I provide TLI, the listener may perceive me as being shy, disinterested and/or dull.
I was afraid of providing TMI if I would say the following: “ I am worried about the progression of my PD, and that my symptoms have been escalating this summer. On a daily basis, I have at least two episodes of dyskinesia (those abnormal, involuntary movements that can make me seem as though I’m jittery and constantly in motion). And they are exhausting and painful too and can last from thirty minutes to three hours per incident.
In addition, any time in the day or night, I can experience a severe tremor in my right hand, which in the day makes it difficult to use my right hand for writing, cutting vegetables while working in the kitchen, and my fingers are too shaky and stiff to play my accordion. And at night, my tremor time wakes me up and interferes with my sleep."
I am working with my neurologist on how to solve these ongoing PD-and DBS (Deep Brain Stimulation)-related problems or if the problems can’t be solved, how to cope with “this is as good as it gets.”