Run for your life
After a bout of implant envy, our writer re-enters the race against Parkinson’s disease
The darn thing works after all.
I just walked/ran 2.62 miles and froze my grateful butt off as proof.
Six months after deep-brain-stimulation (DBS) surgery [see “The heart of the (gray) matter,” SN&R Cover, August 19] to alleviate my aggressive Parkinson’s-disease (PD) symptoms, I am, as my neurologist put it, “optimizing.” Heck, I’m gellin’ like Magellan.
During optimal moments, I walk, type, rake the lawn, drive pretty well, bicycle, serve on my neighborhood-association board, tie my shoes and even run if something chases or challenges me (more on this later). I took my first vacation in years in October. I usually hit my mouth when I eat. (House cleaning, for some reason, remains difficult.)
I am down to about 25 pills a day instead of 40. I go entire days without naps. Life ain’t grand, but it is now worth living. The glass is half-full.
I call it better living through electricity—2.5 volts to be exact. I still have this dreadful, progressive disease. Each day has its awful “off” times: awkward moments, reminders that you have a usually nonfatal malady that you sometimes wish was fatal. DBS is a last-resort treatment, not a cure. I’ll take it.
On Sunday, December 5, my wife, some amazing friends and I entered the MaraFunRun, part of the California International Marathon to raise money for Team Parkinson. “Fun” is not the word I would use to describe participation in an outdoor event on a freezing Sunday in December, although the first letter is on the mark (actually, the first two). I was nevertheless happy to be there—happy to be anywhere, to quote George Burns in his later years.
I was not so optimistic about optimizing. When my new stimulator was turned on June 30, and I did not realize instant results in this instant-results world, I was demoralized in a gee-I-risked-my-life-and-all-I-got-is-a-bad-haircut way. I wondered if somebody in the Kaiser Permanente operating room didn’t sneeze or drop something at a key moment, or if the wire running from the implant and down my neck into a battery had not shorted. Maybe I was a placebo in a study short on monkeys. Perhaps I missed a co-pay.
Forget walking two-plus miles. Even after my “stim” was turned on, I struggled to walk two blocks. I bought a second cane, wondered if a walker was next, and thought about turning the damned thing off and throwing the remote that came with it in the nearby American River. After hearing the wonder stories from other DBSers, as we call ourselves—the amazing tales of life regained and vacations taken—I had implant envy. Despite being eternally grateful that I was chosen for a revolutionary surgery that has a long waiting list and costs around $100,000, I started bugging Dr. Vicki Wheelock, my neurologist, whom I bug a lot, about the lack of results.
Seemed fair. You have scalpels, screws and wires plunged into your skull while awake—throw in a catheter, a head cage, and the screams and bland food during four days in the hospital’s neurology ward—and you want results. Now.
But Wheelock, who has been in on a lot of these surgeries, saw this coming. She urged patience during voltage-upping programming sessions where she deftly adjusted what is essentially a brain pacemaker powered by a battery in my shoulder.
Around the third programming session, I started getting results. No Kodak moment, but a gradual improvement in movement over time. I credit a delicate alchemy of meds, exercise (this, I am learning, is especially important), diet and electricity. Me and my stimulator, dubbed Otis, companion to Marilyn the rotating pill container, still set off the security detector at the library, but that is fine. It means I am at the library and not stuck at home.
Thanks to the kindness of friends, family and a group of overly generous pals from my high-school class simply known as CHUMPS, my own little Team Parkinson raised around $1,200 from our participation in this event. The Sacramento Parkinson Foundation raked in around $10,000 and counting. Mere, um, chump change in the big picture, but it made rising at an ungodly hour on an arctic Sunday worthwhile.
The last time I wrote about this dreadful disease, I quoted Bob Dylan’s “Dignity” ("Sometimes I wonder what it’s gonna take … to find dignity").
I have, thanks in large part to modern medicine and surgeons with good aim, gotten some dignity back, including being well enough to see a forever-young Dylan recently in Davis.
For now, though, the song that the wire in my brain seems to be picking up is David Bowie’s “Heroes.” My heroes for more than just one day are my co-walkers: my wife, Kelly; two of her co-workers (one of whom showed up with her daughter despite just losing her dad to heart problems and a sister-in-law to cancer the day before); two college classmates who came from as far as Fresno to walk with me; the many contributors in my name; Wheelock; Dr. Conrad Pappas and the Kaiser DBS team; and everyone with PD who did the walk, including John Ball, co-chair of Team Parkinson.
Interesting guy, Ball. He has had PD for about 30 years (showoff!), holds his bobbing head high and proud as he determinedly waddles down the street, and takes part in all the marathons and fun runs he can find. Wearing bright sea-foam green (at least they weren’t scarlet) “Team Parkinson” T-shirts, we found each other zigzagging along L Street not far from the Capitol. We did the last few blocks together, becoming fast friends, as PDers—members of a club nobody wants to join—tend to do.
The finish line, crowded with well-wishers, neared. Time to hot-dog it a little, to show the crowd that, for now anyway, we have PD, not the other way around. “Let’s run the last two blocks,” I suggested between heavy breaths visible in the crisp morning air. “You’re on,” Ball replied. We bolted across the finish line at the same time, high-fivin’ to a smattering of applause. One tie, two winners.
After the race, the radio that always seems on in my head (and hey, I now have an antenna!) started playing Warren Zevon’s “I’ll Sleep When I’m Dead.” It was a terminally ill Zevon who went down swinging before going to sleep for good who said on David Letterman’s show that his advice to the world is to “enjoy every sandwich.”
They didn’t have sandwiches at this walk. They had trail-mix bars, not high on my list of favorite foods. I hastily grabbed one after finishing the walk.
I tore off the foil wrapper with hands less shaky than they were six months ago.
I savored every bite.
Joel Davis is a Sacramento writer finishing a book on the 1980 Riggins-Gonsalves murders (www.justicewaits.com). The Sacramento Parkinson Foundation (www.parkinsonsacramento.org), which is accepting donations in connection with the marathon, has a young-onset conference set for January 22 in Sacramento and can be reached at (916) 489-0226.