So here we go again, 10 for 10 (10th Battery change in ten years) On the eve of my decade long adventure as a cyborg,and after a hard-fought road win at Pittston Area HS, Cathy and I will depart Hazleton at 3AM to NYC, surgery at 7:30AM, Recovery at 9ish and back on the road by 10:30, We should be back Home to pick up Hutch, and get my recharged battery to practice where my (8-3, 5-0) (First Place Wyoming Valley Conference Div. I) Crestwood Girls Basketball Team prepares to entertain, none-other than Hazleton – where my wife is the Asst. Athletic Director.
Below is a reflection from my 9th battery change last Nov. 2012. Thank goodness for modern medicine!
PS. Don’t leak this to my girls team – they have no idea – This is more for my Twitter followers and fellow dystoniacs and Deep Brain Stimulation Survivors proving, once again, Anything is Possible and There is HOPE!
Being a battery powered person certainly has its advantages and challenges but the conversations on the beach are well worth the inconvenience or the luxury of having to replace the batteries every 11 months. I couldn’t begin to tell how many people have come up to me when shirtless and said, “Dude, what are those?” or the stares of wonder. It’s a motivator to (A) Stay in shape so my gut doesn’t get bigger than my batteries and being the vain person I am don’t mind the stares, (B) To develop a unique tale: an Irish saying, “Don’t let the truth get in the way of a good story” is another way to handle the two batteries protruding from my chest, the wires (vein looking) running down my neck behind my head and connecting to the base of my brain along with the 2 lumps on my follicly challenged nugget. Depending on the inquiring audience determines how Irish the explanation can be. Being a FBI (full blooded Irishmen), you can imagine the stories that might escalate from this gene defect (bad pun but a good one nonethesless 0r at least I’m laughing).
This will be my 10th battery change in as many years. To understand Deep Brain Stimulation, the electrodes are implanted in the basal ganglia and the wires are tunnelled along the neck connecting to two batteries tucked under the skin in the upper chest (Not man boobs – prefer male enhanced chest). The batteries are then turned on (as I’m sure most of my readers are while reading this). Then the fun begins: Programming of the neurostimulators (brain pacemakers/batteries). There is some data which suggests which settings are best for parkinson’s patients and with an experienced programmer there is a base for dystonia patients as well. But the data and sharing of information must be improved and medtronics/neurologists and everyone involved must start a national database of which setting are successful for different types of dystonia. This would be extremely beneficial for more efficient programming and would improve the time frame after surgery for patients to begin pain free living or the suppression of dystonic symptoms. Otherwise the complicated method of figuring out what settings are best for each person is like hitting the lottery.
Depending on the voltage level of the batteries determines how long they will last. My settings are Left battery – 3.8 volts, pulse width 210, frequency 130, right battery – 3.0 volts, 130 frequency and 210 (varies) pulse width. Left battery should last 13 months but there’s no accurate or definitive way to test how much juice is left in the battery. Once the battery starts to drain, they go quickly. Which means time to get a replacement because dystonia comes back and the pain is, let’s just say at times mind numbing. To put it in words, the Summer of 2003 in my attempt at writing (M2Y F2OLT3S2 = Motivated Minds Yearn For Feelings On Life’s Trepidations, Temptations, Thoughts, Sayings & Songs, Poetic Philosophy that lives in the soul and breathes through the heart) which sold a whopping Zero “0” copies, I wrote about pain.
There is so much pain that I don’t know how to handle it. I refuse to give in but I truly can understand how one can lose oneself to escape the hurt. Some of the hurt is physical – some mental – some emotional – some spiritual. I have been questioning every belief and diety and challenge all my inner beliefs and upbringings – There is no control and the emptiness that I’ve always felt has gone to a new level. Exhaustion and medication are temporary cures while my mind and heart try to cope and recover. I feel guilty for what I have and what others don’t but the writing expresses my feelings without shame. I feel challenged and refuse to give in or up but search for the inner strength in each pressing minute. (Summer 2003)
Pretty heavy stuff but each year I am reminded of this excerpt prior to the battery change. I do mask it pretty well or at least try to and never complain because it could always be worse. So next Monday the 19th of November, the pain will be gone (hopefully) and my new battery will be at full strength.