It’s hard to believe that seven years have passed since my first article about Parkinson’s disease appeared in Allegro. I ended then with an offer for sale of my wonderful tuba that I knew the disease would keep me from mastering. It has found a happy life in a concert band. Although I’m still cautious, a bright ray of hope has come to light up my landscape.
Close to 50,000 people have tried it. It’s called deep brain stimulation, or “DBS,” and I’m getting phone calls about it these days from folks who want to know if it’s the miracle they’ve heard it is. My neurologist had told me about DBS, but for a while I failed to take the idea seriously. Advanced surgery? For a neurological disease? Nobody’s drilling holes in my head, buddy! But as my symptoms slowly became worse I began to listen. I was growing weary of the sad looks on the faces of friends when I would bob and wiggle, a bit more all the time. The doctor said I was a good candidate for the procedure, but not to let too much time pass.
I attended a presentation at a motel meeting room, where I had plenty of opportunity to ask questions of a surgeon, a state-of-the-art, hands-on DBS specialist, who was clear, sharp and very likeable. I trusted him right away, which turned out to be an essential element in a successful operation.
We were shown a film of a patient’s extreme tremors being turned off by the press of a button. Still a prisoner of the dread disease at home, I found myself secretly thinking, “Anything would be better than this!”
At the initiative of cornetist Peter Ecklund, a fellow victim of Parkinson’s, I played piano with him in a duo gig for a Parkinson’s support group, meaning to demonstrate what we could “still do.” Peter did fine. I was very much less happy with my musical results than was the audience, although that’s nothing new.
I discussed it all thoroughly with my daughter Zoe, who was ready and willing to do the heavy paperwork, and I knew I had to go for it. With her at the helm I qualified for Medicare and then Medicaid, and before I knew it I was scheduled to check in at the Westchester Medical Center in Valhalla, New York. On the way in that evening I noticed a good-looking grand piano in a corner of the lobby.
My head had to be shorn of the long locks I’d sported for years. We made it a merry ritual, taking turns with the electric razor.
Then whoosh! in a wheelchair and the first session began with the uncomfortable process of clamping a box-frame to my skull with setscrews, in exactly the right position.
Conscious reactions were needed from me along the way. With attentive monitoring by the anesthetist I felt virtually no pain, but I can still hear the little hole saws and some of the lead surgeon’s instructions to his crew, and feel the cramp in my neck when the box-frame was disassembled afterward.
A few days of hospital rehab, which I confess I didn’t take very well, and I was back home with a new electrode permanently implanted in the left side of my brain!
The doctors wanted a period of observation before continuing, so the sessions were timed a month apart. The second operation was just like the first, except the neck cramp was worse the second time around, and I drew heavily on my trust in the surgical crew.
Next day I took a turn at the piano in the lobby, having ingratiated myself with the security forces. It turned out to be a clunker and out of tune, nu? Thank goodness for indulgent listeners!
Another month later the third and last session was a piece of cake, no pain at all: installation of a pair of cables connecting the two electrodes with compact-shaped discs down front behind my clavicles, all nearly unnoticeable under my skin. When activated by my neurologist’s assistant through another thin cable just draped over it, each disc was capable of delivering a finely tuned electrical zap to an exact spot on call.
What was the payoff? The first adjustments seemed unnoticeable, even disappointing. Another month passed. At my next appointment I hobbled in with my cane, grumbling bitterly about complaints like involuntary movements of my legs that interfered with sleep.
A week later, I walked in, tossed the cane aside, and reported the first symptom-free week of the year! Even a problem specific to my left side had been dealt with. Now, two more months later, I see the whole thing as a very orderly memory, and enjoy the enthusiasm of friends who can’t get over how much better I look and move.
My medication dosage has been cut in half. I’m finding more confidence in the feel of a keyboard or strings under my hand, and the structure of the music is clearer and more under control.
I’m very grateful for the life I’m living as I stride chuckling from room to room, or draw attention at the supermarket by the glow of my presence itself. Specific results in instrumental performance remain to be developed, and I’ll have more to say when the time comes, but the signs are very encouraging. I did call it a bright ray of hope, didn’t I?
What was the cost? Ask my daughter Zoe, whose amazing skills brought me everything I needed for a state-of-the-art process, in return for little more than my signature. There are a few details to tie up, but with loving support from the family, all together my story presents a powerful argument for universal health care.
I’m no expert and never will be, but I’ll be glad to discuss my experience with readers of Allegro. If you have questions, you may already be on a track you must follow. When you’re ready, give me a ring at (845) 532-7696. Daytime is best.
Steve Knight is a Local 802 member.