Some months ago, I wrote a piece about what I can do. It was written from growing despair as I realized increasing limitations as a Parkinson’s patient…the incessant, inexorable downward spiral as this beast continues to drag me into its clutches. By focusing on the things that I could still do, I could talk myself out of the doldrums.
Since I wrote that particular a piece, there have been many months of isolation; time has slowed to a crawl as the virus and resultant quarantine, combined with increasingly garbled speech, have basically isolated me from everyone. It has now been a year since I’ve hugged my own children or even touched them! Longer than that since I’ve enjoyed a quiet morning drinking coffee with my sister besides her koi pond. She and I can no longer talk by telephone; my speech is unintelligible and my voice is too soft for her to understand me. And, there has been an inordinate amount of quiet, unstructured time to develop hyper–awareness of the devastation as Parkinson’s continues its rampage through my body. I have felt and seen the end of hope…
Three days ago, I experienced a miracle. The best way to tell you about it is to list the things I can do now that were impossible only three days ago. (To begin to comprehend the miracle, imagine, if you will, the complete antithesis of each of these):
- I can now walk almost normally, without my walker! The cane has become merely a security crutch that I imagine will soon be parked in a dark corner somewhere.
- I can write a legible note and do a crossword puzzle without my handwritten letters shriveling into a mangled, undecipherable mess – and I can think about what I’m trying to say instead of how to form each letter.
- Keeping the car steady in the middle of the lane as I drive is now effortless…I almost missed this subtle, but still momentous change!
- I can hum a recognizable tune as I putter around the house.
- I can chat with my husband, speaking my thoughts only once, and he can understand what I’m saying!
- I can speak for myself on the phone, make my own appointments, ask my own questions!
- I can give Alexa a verbal command, and she can hear AND understand the first time, every time!
- I can laugh and smile, make jokes…and my voice even has the proper inflection.
- I can enter into family or friends zoom meetings and actually be part of the conversations, teasing and bantering…and everyone can understand what I am saying!
- I can play, at sight, intermediate piano music – for the first time in years!
The only problem with any of this is that my stamina is very limited. But there is now a reason to look forward to rebuilding. You see, I have been given back some of my life!!
How, in God’s name, did this happen?? Has Parkinson’s been vanquished from my brain? Have I been…healed?!
The Rest of the Story
Six months ago, I had a final visit with my long-time neurologist. He was moving to Miami to become head of a movement disorders clinic. It was a wonderful move for him, but I was bereft. I left that visit feeling as if I had probably gotten as much benefit from the DBS device in my brain as possible. From there, I believed, the degenerative aspects of PD would again take over, ravaging what was left of my independence, leaving me invisible in my misery. In other words, my implanted technology was maxed out, and I was again at the mercy of a relentless degenerative illness.
Three days ago, I went to see a new neurologist. Dr. Siddiqui is a specialist in movement disorders at Wake Forest Baptist. I had only met him once before. He was assisted by a Rep from Boston Scientific (the developers of my implanted brain device). The ensuing hour was spent with me hooked up to the computer as they quietly worked at the keyboard. Occasionally, he would stop and ask me to do some standard neurological testing, most of which I have done hundreds of times before. That day, I knew my coordination was worse than ever. And then, feeling as if someone had “oiled my joints,” the movements were suddenly easier, effortless, coordinated, normal! Mixed with utter surprise was a faint glimmer of hope as I learned that the Boston Scientific scientists did not stop working at the end of the 5-year timed trial. In fact, in the last six months, they have discovered and implemented a new programming technique. Using the already-implanted brain leads, they can see pictures of the brain and the program can predict probable best settings, customized for each individual’s issues!
Oh. My. Goodness!! It’s working!! My body is waking up! Activities that I never thought I would be able to do again are possibilities again. All day, I’ve been singing Amahl’s song just after his lame leg was healed: “Look, Mother! I can sing! I can dance! …” and from Pinoccio, “I’ve got no strings to hold me down. To make me fret or make me frown…”. Hope is tantalizing, and I am intoxicated with ideas of swimming again, playing the piano, walking a mile, talking with my friends for hours on end, playing with my grandkids…
No, this is not “healing” in the true sense of the word, because I still have Parkinson’s. But, as doctors and other scientists learn more about electricity and brain waves, the effects of this illness – it’s degenerative, destructive force – is diminishing. With each passing day, as I find more “little things” that I can do again. I am beginning to dream again about the future. Perhaps PD will not win. Hope is returning, alive and well, to get me through another month at least, and maybe a year. Or more!!
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