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Flowers on Dr. Starr's Tie

Friday October 16, 2015

In my last post, I recounted about half of my dad and my caffeinated adventure in San Francisco. The best has been saved for last. In fact, I break it down into acts: (I) Pete’s Deli on Divisadero Street Experience; (II) Dr. Starr and the Surgical Movement Disorders Center Experience.

I should disclaim that we were delayed to our appointment—by showing up at the wrong hospital.

After my faux-pas coffee order, and after sifting through decades of used clothing, I was perfectly undisturbed by our time frame: we were so close to the hospital, why rush? In contrast with his fervent punctuality, I took a slow pace up the hill, photographing the flower shops and the back of my dad’s cargo shorts.  

We reached the fifth floor of the Parnassus campus—only to find ourselves in Nephrology. My iPhone camera could’ve captured an unprecedented shade of red across my dad’s face, had I detected an opening for humor. Fortunately, we caught a shuttle to the more accurate Divisadero Street. Of course I recognized the magnitude of this consultation: Dr. Starr would recommend for or against a surgery to improve my dad’s speech.

Some men are socialized to be “of few words”; some people, simply are. My dad is neither of these. Anecdotes, bad jokes, even worse singing: at the risk of speaking too much on his behalf, my dad has often found his diminishing speech to be the most debilitating part of Parkinson’s disease.

Diagnosed with Young Onset Parkinson’s Disease in 1997, my dad has had major DBS (deep brain stimulation) surgery in addition to several follow-up procedures (battery changes, fine-tuning—you know, years of basic maintenance). In June of 2014, my dad was driving home when he felt what I interpret to be a loss of control along the right side of his body. We learned that his left battery had died; over the next few days, it proved to be a loss of physical surety, and a gain of painful stiffness. In this unexpected and uncomfortable period, however, my dad also discovered something incredible: he could speak.

Naturally, he called everyone he knew and chatted them up. This was a streak of light in the sudden darkness, the sudden failure of his left battery. It seemed to us that DBS provides my dad with crucial relief from some Parkinson’s symptoms; could it also exacerbate some that he wouldn’t otherwise struggle with, namely his tied and taut speech? After his replacement operation that summer, we met with his doctors at Booth-Gardiner and Virginia Mason to troubleshoot. There had to be some way to negotiate with DBS, to balance the stimulation. But weeks of calibration and frustration lead us away from routine guesswork and back to the operating room. Relocating the electrodes implanted in my dad’s brain might be the best—and riskiest—bet.

Dr. Phillip Starr, veteran surgeon of one of my dad’s brain surgeries, could be the next source of light in the night on my dad’s speech (at least one play on the doctor’s name is, I hope, acceptable). Our meeting with him at UCSF would determine just what sort of procedure—if any—could not only sustain my dad’s mobility but also improve his quality of speech.

Act I, Scene I

Upon our (still timely) arrival at the correct UCSF location, we found ourselves at the end of a Parkinson’s patient back-up: Dr. Starr would be at least an hour. I gave myself ten more minutes before beseeching my dad that, with hawk-eye precision on the shuttle ride over, I had located a deli just one block east of the office, and could I please order us two of Pete’s finest sandwiches? He insisted on sitting firmly in that waiting room but I was free to rumble on down to the deli. And rumble I did.

Act 1, Scene 2

From its family history and prices, to its dozen or so sharpie and computer paper specials, this deli seemed to me the most humble of San Franciscan establishments. It was absolutely excellent.

For my dad, I made another savvy order of Corned Beef on Sourdough—with no linguistic disapprobation. For myself, I invite you to add me on Facebook, so that you may see an instance of art—that timeless and enigmatic subject, that dynamic range of human expression, which too few take time to appreciate—in the form of Turkey, Pesto and Havarti.

Act II, Scene 1

Dr. Starr is worth the wait. Not only he but his entire staff proved to be some of the most present and considerate health care workers that I, at least, have ever encountered. Each person in that office listened to both my dad and I with true patience; they really cared.

Inevitably, troubleshooting came into play. First they switched the left battery off; then the right; and finally, they moderated some in-between settings. Dr. Starr and my dad reviewed his history as both patient as well as person. Ultimately, we all discussed the great risk that accompanies the possible benefit of shifting the electrodes in his brain. His mobility could be affected; his speech could be unchanged. When my dad asked Dr. Starr what he himself would do, were he in my dad’s position, he replied,

“I get asked this quite a lot. And you know, besides my lack of Parkinson’s, I really can’t say. Surgeries are less recommended the more that you have them. But in many ways it depends on who you are as a person—what’s your threshold for risk? Would you rather take the chance, knowing that it could intervene with the relief that DBS provides you now?”

My dad, unfortunately, looked up as I did. I laughed.

“She knows me,” he said.

Even though we left Dr. Starr’s office with a tentative date for operation, and even though we agreed to consult friends and family, my dad had made up his mind.

His surgery is scheduled for October 13th at UCSF. My brother and my aunt will fly in with him; my sister and I are working in Europe over the course of the next year, on which I will elaborate soon. But besides the proximity to Pete’s Deli on Divisadero Street, I know my dad will be in good hands. 

Bette JaneBette Jane
NWPF Guest Blogger

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