MOVER AND SHAKER
A man many consider a mover in his field refuses to be challenged by Parkinson disease. He challenges it instead.
By Michelle B. Ciriacruz
Medical Writer
He walks in stateliness like one would expect from someone who grew up in the shadows of statesmen and diplomats and journalists.
He talks about the importance of striving for perfection, that lifelong quest to keep the fire of the intellect burning and pure. The "idiotization" of the masses by the power of mass media, he recognizes and rejects with scorn.
He wields the power of the pen and exercises it for love of country, honor, and pride--and from undeniable desire. With his writings, he inflames the burning questions of the times and strikes burning questions of his own.
He also likes keeping his table manners impeccable: utensils in proper place--the fork for use by the left hand and the knife by the right. The European way, after all, is the diplomatic way to enjoy one's food, he points out.
Sometimes, though, his thoughts seem to run faster than his words could catch up. His speech sometimes slurs while he gazes too fixedly on a current preoccupation.
Lately, he admits, he has had problems with coordinating his actions with his mental commands. He drops things, he fumbles, and he shuffles. But at 70, isn't it forgivable for someone to become a little clumsy?
He objects to the notion. The activity of his mind is matched stride by stride by the activity of his body. Up to now, he walks between three and five kilometers at the Greenhills Shopping Center every day. Until recently, he ran marathons, he says.
It turns out, he walks with grace still from sheer will. He walks slowly not because it befits his position but because he must.
And finally, former press secretary, senior executive at the Government Service Insurance system, and PAGCOR director, columnist, husband, and grandfather Raul S. Gonzalez is revealed. Deep inside him, we see that he seethes with rage--rage against the thief seated deep inside his brain, that steals vital messengers leaving the nerve cells in his muscles ill-informed.
The thief's name is Parkinson disease, Gonzalez says. And though it's not a murderer by nature, it is destructive. And it's not about to go away. Gonzalez says that he has no intention of allowing it to lead him "gently into the night," though. He has accepted that he's got to live with it but he's going to "rage, rage against the dying of the light" while he's at it.
Shaken up
Halfway between the cerebral cortex and spinal cord, at the base of the cerebrum, a collection of nerve cells called the basal ganglia releases chemical messengers (dopamine) that will trigger an impulse to move a muscle. Its primary mission is to smooth out muscle movements and coordinate changes in posture.
Sometimes, though, something happens to destroy that collection of nerve cells; by what, nobody knows yet--though certain genes, programmed cell death, pesticides, insecticides, and free radicals have been implicated. When about 80 percent of the basal-ganglia cells die or become impaired, the symptoms of Parkinson disease appear.
In 2000, Gonzalez was expecting full recovery from the surgery he had that relieved his enlarged prostrate and lower-urinary-tract symptoms. But seven months later, he was still easily fatigued and having dizzy spells.
At a dizziness center, his inner ears proved fine. When he had his eyes checked, an ophthalmologist suspected a cerebral incident, but a neurologist found nothing wrong. Friends noticed that he seemed to be dragging his left foot when he ran. He noticed himself becoming clumsy and his movements slowing down.
A third neurologist enlightened him. In 2002, movement-disorders specialist Leonardo Fugoso Jr. told him that he had Parkinson disease.
It's a chronic, progressive disorder of the central nervous system that affects movement and coordination. Its four major symptoms are rest tremor of a limb, slowness of movement (bradykenesia), rigidity, and poor balance. Gonzalez had two of these symptoms, so Fugoso was immediately suspicious. The asymmetry of the symptoms was another clue. "Typical Parkinson disease starts on one side," he explained.
Fugoso felt his hands, testing their strength--it was normal--and speed of performing maneuvers--slow. "The brain has different centers for strength and speed," Fugoso explained.
Then he instructed Gonzalez: "Look at your eyes, how many times did you blink?" Also, "look at your mouth. You slur because of oversalivation--your swallowing muscles are compromised."
Gonzalez's main problem though was his gait. Because Parkinson disease affects the fine muscles, his handwriting was also getting smaller. "[But] I've always been a terrible scribbler," Gonzalez rationalized.
Diagnosis, treatment, and controversies
Fugoso confirms that diagnosing Parkinson disease can be difficult unless the clinician has experience in it or until the disease has started exhibiting more overt symptoms. No X-ray or blood test can confirm it. It can be mistaken for one or more of a group of nervous-system disorders called parkinsonism, that develop from exposure to drugs, viruses, and trauma.
Though it's not common, says Fugoso, "it's not rare, either." After Alzheimer disease, Parkinson disease is the most common neurodegenerative disorder worldwide and the most common movement disorder seen by Fugoso at St. Luke's Medical Center's Movement Disorder Center.
According to the US National Parkinson Foundation, it affects one in 100 people over age 60, regardless of sex, ethnicity, and economic and social situations. It usually develops at 60 to 65 years but five to 10 percent of those with Parkinson disease are under 40. A rare form also affects teenagers.
Most cases are sporadic but 15 percent have family members with the same disorder. Because the cause is unknown, it is difficult to predict who will get it and to prevent it from happening. There is no cure for it but its symptoms can be minimized by medication.
An aid to diagnosis, Fugoso says, is to see if the Parkinson-like symptoms respond to antiparkinson drugs. One of the criteria for diagnosis is if "patients benefit from taking the appropriate dose of levodopa," which restores dopamine in the brain.
Levodopa was the first drug (approved in 1970) to treat Parkinson disease and is now the most commonly administered therapy. It is usually combined with the drug carbidopa to prevent the breakdown of levodopa before it reaches the brain.
The effects of levedopa, particularly on rigidity and bradykinesia, are dramatic. Before Gonzalez took his initial doses of levedopa, he was crashing into things and was always tired. With medication, Gonzalez describes that he is able to function, not so easily as before he developed Parkinson disease but with an output of work that "is almost the same."
"It's a struggle. But I still manage to write pieces that many of our columnists will envy," he says. Gonzalez used to write for various newspapers, delivering hard-hitting opinion pieces or enchanting essays about family, friends, and life three times a week. Now, he concentrates on writing speeches and corporate reports.
Controversial about levodopa use, however, is that five or 10 years down the line, "some patients, particularly relatively younger patients, experience dyskinesia (twitching or jerking)," Fugoso points out. As more of the dopamine-producing cells in the basal ganglia are destroyed, the drug's ability to control symptoms fluctuates (on-off effect). Patients need higher and more frequent doses for the drug to remain effective.
Treatment with dopamine agonists, which mimic dopamine, can lower this risk of developing dyskinesia associated with levodopa use. Gonzalez is primarily on dopamine agonist, and just one controlled-release levodopa/carbidopa at night.
This class of drugs imitates dopamine's actions in the brain by activating the nerve cells in the striatum, another part of the brain where the dopamine signals from the basal ganglia have to pass through.
However, some patients with advanced symptoms may respond poorly to dopamine agonists, says Fugoso. Fugoso has to weigh each case carefully and lengthily, therefore, to be able to come up with a good balance of beneficial effects against side effects from these drugs.
Playing the Stradivarius
From growing up in Malacañang where his father, an engineer charged with maintaining the Palace, to becoming a man at 15, cradling in his arms his father, dead from crazed soldier's bullet; from being handpicked by President Diosdado Macapagal as assistant press secretary to helping lead the Philippine Amusement and Gaming Corporation to decent heights; and from harsh critic of corruption and idiocy in government to family man and nurturer of campus writers at the University of the East's The Dawn (school organ), Gonzalez has led a tense though exhilarating life.
Which makes experiencing the slowing down with Parkinson disease really frustrating. "I've always been a complete man. In the sense that I move fast, I move gracefully. All this has been compromised by what I have now," he says.
Besides battling somnolence--from the medication, he has to spend more energy on the simple things. Buttoning shirts and putting on pants--he used to do these without thought; now it's: "You have to think before you move." He starts to do something…then he freezes.
"I feel like a Stradivarius violin that has lost its sensitivity to direction. I want to come out with beautiful music and it comes out with beebop or hiphop," he complains.
Life still goes on, however. Fugoso encourages his patients to cultivate an active lifestyle despite their disease. He encourages his patients to keep on working, to exercise--"to go on with their lives." He points out that because Parkinson disease typically develops in the elderly, the likelihood that they will die from other causes (injury from falls, pneumonia, etc.) is higher than the disease progressing to where they become extremely disabled.
"You don't die of Parkinson disease. You die with it," Fugoso says.
The daily walks of Gonzalez work in his favor maybe more than he thinks.
Drs. Beth Fisher and Jeanine Yip, assistant professors in research in physical therapy at the University of Southern California in Los Angeles, wrote: "The brain's capacity for recovery is far greater than previously thought." They talked about "activation patterns" in the brain as seen by functional magnetic resonance imaging after intensive, task-specific practice in body-weight-supported treadmill training. This implies that activity-dependent processes, like exercise and complex skills training, support neuroplasticity and do not just help the patient compensate for motor deficits, they explained.
Gonzalez himself links the mind's state with the physical: "What is writing, except simply putting one foot after the other; one word after the other--of course, you have to choose the right word"--when he ascertains to live as fully as he could.
To rage and recovery
Of course, "there are times, in a moment of weakness, your resolve flags," Gonzalez admits.
He finds the prospect of losing control--when the mind is gone, basic needs attended by somebody else--abhorrent. To Gonzalez, loss of control violates a dearly held principle--to ever strive for perfection. "Man should never rest…should never be stationary at any point of progress. You must keep moving," he emphasizes.
In the early days of finding he had Parkinson disease, Gonzalez was indeed depressed, Fugoso recounts.
Emotional stress, the neurologist notes, can "accentuate symptoms." It affects how severely patients perceive their symptoms, creating a discrepancy between their reports and what clinical tests say.
It is important to seek psychiatric help or address the cause of the depression, therefore, Fugoso points out.
But Gonzalez explains that politics back then--up to now, actually--was also upsetting him. He was always passionate about politics, in word and deed-particularly if the daughter of the president Gonzalez served so well is the one in charge.
Another option to address emotional stress is to join a support group, which Gonzalez rejects. He says: "I'm handling my problems my way."
"It's not for everybody," Fugoso agrees. It would be upsetting rather than comforting for patients with minimal conditions to see those with worse symptoms, he explains.
Fugoso says that Parkinson disease is also difficult for the families of patients. His sons were especially affected, Gonzalez muses. "I've always been the protector," he explains.
And then, irritated about his loss of dexterity, Gonzalez would sometimes snap at his wife, Jean, who responds by becoming more loving and patient.
"[But] as long as I get angry at idiocies and idiots [I feel] I'm still alive. If I start accepting them, then, that means I'm giving up," he justifies. "Maybe there's still a fight left in me."
And when he feels that rage coursing through hungry nerve endings, Gonzalez knows that the thief hasn't won yet.
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