Would I rather be frozen or moving wildly?
My Parkinson’s Experience – December, 2009
If you know a Parkinson’s patient, have you ever wondered what it is like to live in a Parkinson’s brain? What are the sensations, emotional feelings, and physical expressions of the disease?
Well, it’s a little like being on the subway in Washington DC. If you have ever ridden that subway, sometimes the train cars are above ground in the open air sailing along the rails as usual, heading to the next destination station. Hopefully the train is on time! The stations come at regular intervals, discharging and picking up passengers. But there is a part of the subway which reverts to it's namesake – it goes underground into a small, dark tube, traveling along an unseen path (from the passenger’s viewpoint). There are many brightly lit stations along these dark tubes where people also embark and disembark.
Parkinson’s for me is a little like that subway. Every 3 hours I am required by my brain to take the medicine which is my lifeblood, even if at the moment I am feeling good. I must jump the small, emotional temptation to delay the medicine since I still feel good. I can be gliding along in the sun and open, brisk air like that above ground subway train in between stations, feeling pretty normal and functioning in society, interacting with and communicating with people; contributing and LIVING. Then the third hour comes and I must take my meds. If I miss taking them or eat some protein or other food which blocks their absorption, within a 15- 20 minute period and sometimes unpredictably before that magical third hour, I sometimes quickly descend into a dark hole, much like the subway streaking into the dark subway tube. Very quickly I can become practically immobile. My movements, especially fine motor movements with my hands, become very slow and to do almost any movement becomes a race of straining muscles and gasping breath. It is not unlike speeding through the subway tunnel completely out of control of my circumstances. At the next subway station, there are people swirling around me, lights blazing, doors opening, events happening but I can’t react or respond to any of it. I am almost frozen in spot, stuck to my seat, trapped in my Parkinson’s brain. This can last from twenty to sixty minutes until the next dose gets through my blood/brain barrier and starts unlocking my brain interlock and releasing my body from its iron grip.
At other times, with a thin edge of knife type balance between too much and too little Parkinson’s medicine and unpredictably, I can be thrown into dyskinesia. This is like a speeding subway train veering down an unstable track, uncontrollably throwing its frightened occupants from side to side in a wild dance of movement. These movements are not ballerina-like smooth, beautiful movements, but much like that out of control train, they are ugly, jerky, embarrassing movements and completely uncontrollable. This condition can last two to three hours. The interesting dilemma comes when it is medicine time and the decision must be made: would I rather be frozen or moving wildly? Or hopefully functioning normally? Frozen is not any fun, so I choose to take my meds.
Because I have been without medicine for about nine hours, mornings are a calm in the race for control. Much like a subway train in a power brown-out, everything is functioning, just a lot slower than normal. Speech, hand movement, balance, walking are all functioning, just at a very slow speed. The race for “normality” starts with the first dose of meds. Living in this morning state of slowness is emotionally tempting, but not much real world productivity can happen in this state of being. There are also some nasty Parkinson’s effects in this morning state which make it an untenable place to live. Often my left foot unpredictably cramps into half its size, toes curling toward the heel in a vice like grip, a painful act of torture. Only standing on the ailing foot with the other foot will release my toes to regain their orderly state of being where they should be. Another nasty habit is for my left shoulder muscles to cramp, causing problems of pain and lack of neck/head turning ability. Shoulder pain from muscle rigidity is mostly a constant in my life, but mornings are the worst. So the subway ride begins again.
The surprising and awe inspiring reality is that God is with me through this whole train ride. The eternal value of serving the living and all powerful, all knowing God of the universe makes these “momentary, light afflictions produce for (me) an eternal weight of glory far beyond all comparison.” (Romans 8:18)
I have been medically approved for Deep Brain Surgery. It has yet to receive the final approval for scheduling the surgery. This procedure in my Parkinson’s brain has the potential of a very significant improvement in my symptoms according to the testing that has been done. I am thankful for the
potential benefits from this operation for myself and my family.
August, 2010 – The DBS surgery has been successful beyond all expectations! I am practically symptom free. I am so thankful to my surgeon, Dr. Mandybur and my programmer, Maureen Gartner and to God for allowing me to have this surgery. I am looking forward to a nearly normal life now.