As you read these posts, I am inviting you to walk along with me on this Parkinson’s journey. As with all journeys, it is a progression. Depending on what we encounter along the path, the progression is either uplifting and positive, like my discovery of biking, or degenerative and hinders our progress. Something is happening to me that is an example of the latter.
I’m sure everyone has seen a mime. The person that has their face painted white and is trapped inside an invisible box. I am becoming a mime against my will.
The main tools people use to communicate with each other are speech, body language, hand gestures, facial expressions and writing. The progression of Parkinson’s disease is gradually taking these tools away from me. I am feeling more and more like I’m trapped inside an invisible box. I am constantly flailing about feeling for the walls. I have found the box is getting smaller.
I’m having a lot of trouble talking loud enough and forming my words clear enough so people can understand what I am trying to say.
My body increasingly is not paying any attention to what my brain is telling it to do, (body language).
My hands are also being uncooperative, ( hand gestures ).
A symptom of Parkinson’s is called facial masking. My face muscles also rebel and are losing the ability to show expression.
Writing is becoming more and more difficult, even with technology. If your hands won’t cooperate and voice recognition can’t understand what your are saying, what you become is a mime trapped in an invisible box. Slowly feeling the limits closing in, tediously trying to make some kind of connection with those you see outside the walls of your box.
Despite continually losing more of my ability to communicate, I still have things I want to say. Not just the moment by moment communicating that happens in life with Marcia, my kids and grandkids, family, friends and strangers, but I continue to have thoughts and ideas that may or may not be of some value. My desire is to still be able to express these things and continue to be a contributing member of the human race.
Thankfully, the invisible box travels with me. Also, because it’s invisible, I can see others and they can see me. I have noticed that some people seem hesitant to approach the box. Probably because they are not sure what my abilities are. My desire is that they make the effort to talk to me and I will do my best to talk and respond. I do think I’m a better listener than I was before the box.
Only God knows what lies ahead, but I’m ok with that. As long as my mind keeps coming up with thoughts, I will keep on trying to find ways to express them. I do know that God is not finished with me yet.