Alone

Walking from my yoga class today, I connected with a couple of women from the group. One had the same surgery I had, DBS, a year and a half ago, and one had not.  We discussed what it feels like to have PD, how an "off" feels.  One said she tells her family, "it feels like I am walking through quicksand".  The other said, "it feels like my face, everything is pulling my body down.  I said, "it feels to me like gravity is suddenly turned up, a hundred times over, and a big cloud is lying on me". The first woman concluded, "it feels so great to be with people who understand EXACTLY what I mean."

Parkinson's is not the same for everyone: it is a customized disease, and everyone's perception and progression is different.  What is probably universal for all who fight it is its inconsistency. Some days are better than others; some hours are better than others, and the maddening thing is, you cannot control nor predict it.  This leaves the person feeling isolated, especially not knowing when an off will happen.  Yes, medications can help, as can DBS, but they also inconsistently kick in and you can never tell when you will start the shuffle, bowed walk, tremor, tightness, rigidity, and feelings of depression/anxiety. 

I do my best to stop and appreciate when I have moments of feeling "good~alright~like my body has stopped fighting itself".  I like to check in at those times when they occur, and take a minute to be grateful for feeling ok.   I usually do a mind check of things I am grateful for, and pause a second to appreciate feeling somewhat like I remember my normal self feeling.

I would guess that all who suffer from a progressive disease find themselves feeling alone at times.  This is the value of support  groups, both in realtime and online.  They ease the social burden of isolation.  Thank God for the support of other people.  I will take this appreciation with me to Washington DC next week, knowing that as difficult as it will be to be "on" for a full three days, if I am "off" there is no better group of people who understand what this means.