In our nineteen years with Parkinson’s, Andy’s tremors were his hardest symptom for nine of those years. Since DBS (deep brain stimulation) surgery, they have been a non factor for the last ten years.
DBS is not a possibility for every Parkinson’s patient, but for Andy it was the miracle we’d been waiting for. Living nine years with tremors was one of the hardest experiences Andy has ever endured. If you or a loved one is currently shaking every day with the tremors of Parkinson’s I know what a terrible thing that is to live with.
The way Andy got through those years of not being able to feed himself, or move safely without help, or write anything, or sit quietly and be still was:
1) Developing the deepest spiritual sense of biding time.
2) Waiting as an active response.
3) Finding the bravest part in the core of himself and trusting his will to live.
These strategies only work if love is the primary driver.
In our lives before Parkinson’s and facing all the difficulties that came up we learned to find more and more love within ourselves and each other. That is how our life before Parkinson’s helped us through when Parkinson’s became our reality.
When Andy was at his sickest, and there wasn’t any hope on the horizon for relief, he had to learn to bide time. Biding time allowed Andy to continue living in his worsening condition and access humor. He discovered how to see the light of his spirit and to sense the days flowing from dark to light and back again and to be okay with that.
Andy and I both learned that waiting could be our active response to an intolerable situation. When waiting became filled with love, it became an effective strategy. Without love, waiting without knowing what we were waiting for would have felt useless.
One of the greatest privileges of my life has been witnessing Andy discover the bravest part of himself. The misery he lived through from all that shaking and the depth of suffering he continues to experience from being mostly an observer in his own life, because of his inability to communicate, are not as powerful as the love grown during all the hardship. That love shines a light on his core self and it shows up as bravery and a love of life.
After nine years, the DBS surgery became a choice and ended up lifting him away from the majority of his physical symptoms.