As regular readers of this blog will have noticed, I’ve been away a little over a month: that’s because I’ve been getting my brain adjusted at The Johns Hopkins Hospital, about which I cannot say enough. Yes, I went to school at The Johns Hopkins University, a place worthy of esteem in its own right, as consistently one of the top twenty universities in the land, but I fortunately did not have to experience the hospital first hand.
I say fortunately because we do not as a rule visit a hospital unless something is wrong—in my case Parkinson’s Disease. A dozen years ago, my left foot started tightening uncontrollably when I was running. Tremors soon followed, worsening rapidly, and before a year was out, I had been diagnosed with Parkinson’s Disease, a debilitating but not generally fatal disease— meaning you usually die of something else first.
Without cataloging the trials and travails of living a dozen years with a neurodegenerative condition, I will say that vigorous exercise, which had been a steady part of my daily routine for years, remained central to my struggle. Initially I continued exercising because my doctors didn’t actively discourage me—but they didn’t exactly encourage me either. Conventional medical wisdom at the time I was diagnosed was that while exercise might not hurt you, it might not help you either.
That bit of nonadvice has fallen completely by the board now, as study after study has shown that vigorous daily exercise helps slow the advance of the disease.
I say “vigorous daily exercise” knowing that some doctors maintain that three times a week is sufficient to gain some measurable effect. But the real issue is that what are most needed are programs to encourage people who have been sedentary all their lives and are now afflicted with a motor control disease to develop the habit of exercise.
For those seeking sound advice about exercise and Parkinson’s, it’s worth checking out the website of Davis Phinney, one of the best bicycle racers to pedal out of America. It features extensive exercise and diet programs for people with Parkinson’s. Phinney’s most valuable message it seems to me, lies in urging people to set daily goals for themselves—goals not so extreme they cannot be met nor so easy that they can be achieved without effort.
Even for people accustomed to exercise, continuing to work out after a Parkinson’s diagnosis takes effort and a willingness to adapt and adjust your routine to meet your changing abilities. When I was first diagnosed, I spent several months recording my physical decline with the same assiduousness I had devoted to recording my daily workouts. Then I decided that I was better off simply aiming for an hour of exercise a day, and when that became insufficient, I took up yoga to improve my flexibility, postural stability, and balance. With the help of a skilled and patient teacher, I practiced 45 minutes a day and made great progress.
But I also knew that the time had come for more dramatic action. Last winter my neurologist told me about a then unpublished European study that would suggest changing the protocols for a surgical procedure known as Deep Brain Stimulation. Approved for the treatment of Parkinson’s Disease about the time I was first diagnosed,. DBS, as it is known, involves the implantation of electrodes in the patient’s subthalamic nucleus or globius pallidus, where they are tasked with releasing a continuous stream of electric current that blocks tremors and other symptoms of Parkinson’s Disease and several similar disorders, including Essential Tremor.
Despite more than a decade of research and more than 100,000 procedures performed worldwide, scientists still do not fully understand why or how DBS works. Placement of the electrodes is as much art as science, although new imaging techniques are helping doctors place the tiny wires with greater precision.
Before last year, DBS was used largely on patients who were running up against the limits of drug therapy or who could not tolerate medication in the first place. That remains the case because of insurance restrictions but coverage is changing with new studies showing that DBS can effectively roll back the disease in younger individuals with less serious symptoms.
The argument then becomes one of asking why wait if you know that DBS can potentially give those patients a higher quality of life for a longer time than the alternative? I qualified for DBS under the existing standard and so I headed up to Baltimore, home of arguably the best neurology and neurosurgery departments in the world. What helped sway me to have my skull drilled and my brain wired up was the endorsement of my neurologist, who said that were he to have DBS, he would go to one of four places—Paris, Toronto, Baltimore, or Palo Alto.
Like other top programs, Hopkins employs a team approach to screen and select candidates for DBS. Cognitive testing and psychiatric evaluation are part of that process, as is a neurological evaluation. It is a long and costly haul for most people, requiring a month or more away from home. I was lucky to have a brother in the area and a mother-in-law not far away in Virginia who generously opened their homes to us and Toodles, the intrepid Jack Russell terrier (about whom more in a later posting).
Nearly six months after initially deciding with my neurologist to proceed with DBS, I was in room 63 on the 12th floor, east wing of the Zayed Tower at Johns Hopkins Hospital to have two small holes drilled in my skull. Not being known for doing things in a predictable fashion, I announced on the way to surgery, stealing a title from J.P Donleavy, that I was going to “Meet My Maker the Mad Molecule.” My wife suggested discussion of meeting makers was not in order. I also quoted Richard Brautigan, “In watermelon sugar my deeds were done and done again as my life was done in watermelon sugar.” Then I slept through the drilling of those holes and most of the process of having the electrodes implanted, waking only long enough to answer my neurosurgeon’s questions, when test current was running through the wires.
The author in the recovery room following insertion of electrodes in his brain.
Now, I have electrodes in each hemisphere of my brain, each with four contact points that can be programmed separately to achieve maximum effect. Programming is a balancing act that in my case successfully resulted in putting a cold stop to tremors in my left leg that had begun to break through my medication. It also reversed the dystonia—muscular rigidity brought on by uncontrollable muscle contractions—that had caused my right foot to curl under itself to a degree that I could not walk without a cane and resembled Ratso Rizzo in “Midnight Cowboy.”
I can only describe the result as an end and a beginning—the end of twelve years of constant battle with my body; the beginning of a new chapter in my sojourn on this planet.
It has been a strange and eye- opening trip along the cusp where modern medicine pulls and pushes itself in new directions in its unending search for what helps people bereft of all hope but still determined to soldier on. I have benefitted enormously from the love, affection, and good wishes of my family and friends—and I write that with emotion but without sentimentality. Whenever I have faltered I have been helped along by them and especially by Gina, my wife and companion of more than 30 years.
Family, friends, top doctors and nurses don’t guarantee success, but they create a network that makes success more possible.
For More Information:
Davis Phinney Foundation for Parkinson’s
Michael J. Fox Foundation