Friday, November 07, 2008

Courageous or Resolute ?---- Post programming

Well it has been a little over a week since my neurotransmitter was turned on and calibrated and things are still going well. October 28th I had the opportunity to experience one of most exhilarating experiences in my life. For the first time in 5 years my body was at peace with itself and I was in control. As I entered the exam room and sat down I was visibly wracked with tremors and very nervous, this was one portion of the process I really had no real expectations for. I wanted to be open to what ever was going to happen so I could concentrate on what my body was telling me.

Peggie, the Physicians assistant placed a transmitter over the stimulator pack that was implanted in my right upper chest wall and turned on the small computer it was connected to. Dr. Verhagen my neurologist came in and explained what was going to happen. Just to review, the DBS lead that was implanted has four contacts on it and they refer to them from zero to three. The goal is that two of the four contacts are in an area that they can be stimulated to arrest your tremors with no side effects. In order to make this determination they must test each contact individually, which make for a lengthy session. The zero lead is at the deepest point in the brain with the four lead being in the most superior position. The anticipation is that contact zero, one or two will be able to be programmed with enough voltage to arrest the tremors with out producing a consistent side effect such as tingling, facial twitch or speech impediment of any kind. After each lead is set at this point the Dr. observed my walking at a hurried pace down the hall way being careful to note my arm swing activity and gait pattern. this went on for about two hours at which point my wife and I sat in amazement as I sat there in complete and utter stillness, it was one of the most chilling and exhilarating moments of my life.

As we went throughout this process my wife later told me how she was amazed to watch as the tremor slowly disappeared as they adjusted the voltage. What I found interesting was the last flicker of tremor or muscle twitch to be controlled was at the lateral border of my left hand along my index finger. The reason this stands out is this is also the first sign of Parkinson's I noticed some 5 years ago.

I left the office in the most peaceful stress free mood I can ever remember, although I did have a major headache and was very fatigued from the whole experience. I was told to reduce my 25/100mg Carbidopa/levodpa med by 1/2 tablet per dose essentially cutting my daily dose by 1 1/2 tablets per day. After about a week I began to notice that the tremor was creeping back this caused some concern and frustration. After speaking with the PA at the neurologist’s office I was told it is not uncommon for this to happen as it is a process of balancing the level of medication and the intensity of the stimulator. I will be returning for a "Tune Up" in early December and most likely one or two more times to get everything in pristine working order.

“Courageous or Resolute?” I have received an appreciated so many emails and messages during this process from people and many of them mentioned me being courageous in having the DBS surgery. Though flattered by your kind words I do not see myself as courageous rather resolute in my decision to have this procedure.

Courage is defined as the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery.

Resolute is defined as firmly resolved or determined; set in purpose or opinion, characterized by firmness and determination, as the temper, spirit, actions, etc.

Prior to me having DBS nearly 40, 0000 other people worldwide have had the same procedure and faced the same potential consequences. Being 40,0001 do not qualify me as courageous those that had DBS when it was still a new procedure and not as commonly performed as it is today these folks were courageous as they were going into something that was unproven and untested for long term outcomes In being resolute I did my homework on ht e procedure, met and spoke with others who have had the procedure, weighed the pro and con factors involved and made educated calculated determined decision to have the procedure understanding all the risks involved deciding for me the benefits short and long term far out weighed the risks.

As I write this blog it is the end of the day on Veterans day I think of all the Men and Women in the military currently serving and those who have served and I say now that is COURAGE to face the unknown every day and never know if you will see tomorrow. It is because of their courage I was given the freedom to be resolute and calculated in my decision to have DBS, no matter what decisions we make freely every day it is because of the courage and sacrifice of a veteran or active duty person in the military we are FREE to do so.

It can never be said enough Freedom isn't free----Thank a Veteran


keepthefaith1296 said...


You are a true inspiration and a your insight has brought a sense of peace thru Christ to see me thru this time.


billfla28 said...

I'm so happy you seem to be very well. I want to thank you for doing this blog and taking us through the whole experience.

Thank you