A retired Presbyterian minister encountered a neurologist friend on the street. “You’re walking so much better than when I last saw you. No shuffle step,” the physician said. “That can’t be right. You have Parkinson’s! You shouldn’t be able to improve.”
A participant in Rock Steady Boxing, a comprehensive exercise program for PD patients, told me what the three-days-a-week experience had meant for him. “I would be dead without it,” he said.
People with Parkinson’s are embracing improved exercise habits, diet, mental tools and social networks to punch back at this cruel disease. An increasing number of studies document their improved health and well being.
The key is taking charge of the disease by aggressively seeking the most expert care available and engaging your brain through rigorous exercise and mental conditioning.
PD is an ultimately unknowable condition. Each case is unique to the person. Even the numbers are approximations. One million cases in the U.S. Seven million worldwide. Fifty thousand new cases a year in the U.S. Second most common neurological disorder after Alzheimer’s.
Researchers are retooling the definition of Parkinson’s. PD is increasingly seen as much more than a neuromuscular disease characterized by tremors.
Jon Palfreman makes that case in “Brain Storms: The Race To Unlock The Mysteries of Parkinson’s Disease.”
Palfreman says the classic symptoms of PD — rigidity slowness and balance problems — are what he calls “the tip of a clinical iceberg. It now seems that Parkinson’s disease takes hold of an individual decades before any tremors appear and continues wreaking damage throughout the brain until the end of life.”
A patient’s symptoms can be far ranging, well beyond the classic neuromuscular ones. Palfreman writes:
“… in light of this evidence, many neuroscientists are lobbying to rebrand Parkinson’s disease from a motor disorder to a whole-body condition, involving an enormous number of signs, symptoms, and complaints.
“These include not only the classic features — such as bradykinesia (slowness), tremor, rigidity, postural instability, stooped posture, shuffling gait, freezing of gait, dystonia, facial masking, small handwriting, dysarthria (problems with articulation), dysphagia (trouble swallowing), oily skin, bladder problems, pain, constipation, and loss of smell — but a growing list of other problems as well.
“They suffer from a whole host of sleep-related disorders — including REM sleep behavior disorder, excessive daytime sleepiness, restless leg syndrome, insomnia, and disordered breathing while sleeping.”
There is a growing body of research that affirms how exercise improves PD symptoms, bends the disease direction positively and helps the brain build new neural pathways to replaces functions destroyed by PD.
The National Parkinson’s Foundation concludes this about the benefits of exercise:
“There is a growing consensus amongst researchers about the short- and long-term benefits of exercise for people with PD.
“Exercise can benefit in two ways:
“Symptom management. Research has shown that exercise can improve gait, balance, tremor, flexibility, grip strength and motor coordination. Exercise such as treadmill training and biking have all been shown to benefit, as has tai chi and yoga ….
“Possibly slowing disease progression. There is a strong consensus among physicians and physical therapists that improved mobility decreases the risk of falls and some other complications of Parkinson’s.
“NPF-endorsed neurologists agree that practicing movement — physical therapy, occupational therapy, and participating in an exercise program — improves mobility. By avoiding complications, you can avoid some of the things that can make PD worse.”
When newly diagnosed patients ask my advice, I say this: Your options are binary:
1. Take to the couch (or recliner) and let the disease grind you down one bodily system at a time.
2. Get vertical, get moving and engage the Beast at every step of your journey. Counter punch the foe. Dizzy him with metaphorical jabs, hooks and upper cuts. Take back a portion of the ground he has gained from you.
What about the question “What will a PD diagnosis mean in my life?” The best answer I can give is “everything.”
My stab on the what’s-it-like question is this: Every day with PD is different. Funky, sometimes. Apathetic, others. Disorganized, frequently. Sometimes, even the old “normal.”
Rarely is there a reason to explain the difference, except one: STRESS. The more stress, greater the intensity and greater the number of symptoms. Less stress, fewer and milder symptoms.