By Deb Helfrich, Co-Founder of Out-Thinking Parkinson's.
Here's the thing about emotions - we all have them, but we really don't know how to control them. And that is a really good analogy for the physical manifestations of Parkinson's Disease, I think. I don't have any experience with the discomfort of my body doing things, and much worse, not doing the things that I require it to do. But I can understand how much energy, frustration, and pain would accompany this state, because I do have experience with my mind thinking things I don't want to think and not being able to stick with decisions I believed I had unequivocally made.
It is true that many of us may be able to identify with mental Parkinson's – a state of severe disjointedness between what we want to do and what we are able to do. The unfortunate reality is that while we can see the affects of PD, we cannot immediately see the affects of a frozen or racing mind.
For those of us lucky enough to share our lives with someone with Parkinson's we can use this as an opportunity for both of us to learn something about self-awareness and the hope that can arise from noticing and implementing simple changes.
When I think of the emotional overhead of not being able to control my body as well as my mind, I begin to see the daily burden of life with Parkinson's very clearly. It takes a lot of will to keep control of the ship and there are absolutely certain to be periods when the winds or waves are just too powerful and the best one can do is accept the current storm, knowing that the calm will return.
Working with Gary has given me the opportunity to become aware of how my emotions affect his physical state – and while it can be truly difficult to confront my culpability in the moment – overall this clarity is a gift. Because until I could see the damage of raging emotions physically, I was not doing the best job of maintaining my own awareness. Because there was very little cost to my physical stamina.
Now I know and can begin to moderate my own emotions. And then begin to assist Gary in useful ways to deal with the emotional lability that absolutely is part of the symptoms of Parkinson's and is aggravated by the feelings of lack of control of one's own body.
Having someone to talk with honestly about living with Parkinson's is a primary need to support the emotional wellbeing of PwP's. This person needs to truly be attuned to the ways in which the different physical states may determine that person's mental state. There is an undeniable correlation between agitated bodies and minds, just as there is between frozen bodies and minds. There are millions of nested feedback loops in our human organism, so the willingness to start with thinking might be a cornerstone of regaining motor control.
But, as Gary is showing, writing, whether creative or descriptive, can also be extremely helpful in taking an honest look within oneself, with a goal of surmounting the challenges of PD on the mind. Getting it all out is a key precondition in order to have the mental bandwidth to test methods of improving daily life.
With a little creativity, some curiosity, and a partner's support – it is possible to begin to live life on your own terms – even if you have the symptoms of Parkinson's Disease to contend with.