Sept 6, 2013 | by Darcy Blake | It worked! No more tremor! What prompted the tremor to vanish at 7 weeks past Deep Brain Stimulation surgery? Was it at the moment I replaced expectation with hope? Did pole-walking give my brain the extra nudge it needed? Was it just the DBS on its own schedule? These are questions that cannot be answered. All I know is that after 5 years of tremor, I am so thankful for my gift of movement control, and I vow to use it wisely.
My doctor, Dr. Rima Ash from Kaiser Permanente, San Francisco “turned on” the stimulator three weeks after surgery. She has a seemingly impossible task to choose from thousands of variables amongst the electrodes, voltage, and frequency, to create an electrical impulse “program.” The first program worked for only four days before quitting. “It is still very early to be consistent,” Dr. Ash said sympathetically. The two other programs that I tried did not work, so I returned for a second appointment a week later to try more programs.
A couple of weeks later, with 6 programs unsuccessful, I found that I was beginning to focus on the have-nots of the tremor, and my inability to turn it around. While waiting for my third visit to Dr. Ash, I looked for a word that describes wanting something that you know is possible to achieve, but you have no idea of how to get from A to B to obtain it. Then I found this quote:
“We must discover the distinction between hope and expectation.”
Ivan Illich (1926–2002), sociologist, and author of Deschooling Society (1971).
Hope Versus Expectation
I like this quote because I think there is a huge psychological difference between hope, and expectation. Hope proposes that “events will turn out for the best,” with faith, and optimism to take you to your goal. Expectation, on the other hand is a strong belief that something will happen or be the case in the future. Expectation, founded on one’s ego, leaves little room for interaction between the doer and the emotional journey to get between the two points.
Don’t Expect too Much
“Learn not to expect too much,” said my friend. “I’ve found that sometimes when things get tough, I need to take a look at my expectations. If you can back off a little from what you think you must have, the situation doesn’t seem as bad, and life can improve rather miraculously.”
I thought about what he said, and I decided to look for ways to get quality of life with what I had to work with at this moment. I picked up my walking sticks, and I went out walking, leaving the frustration of expectation behind.
Back to Work
On my third appointment, Dr. Ash increased the voltage on my existing program slightly, and gave me another couple of programs to try if needed. I ended up staying with the program I had, because by that time, almost imperceptibly over the next week, there was gradual improvement to the point where I decided I could return to work just seven weeks after surgery.
On my second day back at work, I realized that my hand had stopped shaking. Not wanting to experience disappointment again, I disregarded it at first. But, as time passed, and people noticed it, I realized my surgery was a success!
Words of Wisdom
My suggestion to those about to enter into the no man’s land between DBS surgery, and the results of DBS programming, is try not to obsess on the programming results because you too, will eventually see and feel them. The statistical odds are that you will be completely amazed at your good fortune, thanks to the talent of your neurosurgeon, the wizardry of your movement disorder specialist, your own fortitude, and the miracle of DBS.
Here’s video proof: http://www.youtube.com/watch?v=KCWcTrKon6s
The medical team that made it possible: Kaiser Permanente, Redwood City