Striding from Penn Station through the sidewalks of Manhattan to start each workday, Mike Powderly seemed at the top of his game. From his home life in Long Island with his wife and three young sons to a rewarding career in the radio business, everything seemed right as the 2000 millennium approached.
But Powderly was noticing changes. During those brisk morning walks to his job at Arbitron, his left arm didn’t swing freely and his mobility was off. Weaving through crowds was more challenging. Eventually, it would became impossible to keep up with the rapid New York City pace.
By 2002, Powderly was diagnosed with Parkinson’s disease. He was 42 years old.
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Parkinson’s disease is a chronic neurological disease affecting about 1 percent of adults over 60. It can cause significant disability. Men are more likely to be affected, and although genetic links are being discovered, the cause is largely unknown.
The degenerative condition affects the central nervous system by destroying brain cells, particularly in the part of the brain that produces a chemical called dopamine. Dopamine is responsible for sending brain signals that enable coordination of movement.
Symptoms such as tremors, balance problems, stooped posture or unwanted movements may be most obvious to others and make patients feel uncomfortable or self-conscious, says Dr. Jee Bang, an assistant professor of neurology at Johns Hopkins University.
“But it’s not just movement — there’s usually a cognitive component to it, as well,” Bang says. “It may affect their thinking and their emotional state, such as depression and anxiety.” Thinking may be slower and concentration can be affected. Sleep problems may develop as dream disorders, nausea, drooling and urinary problems affect people at night. Constipation is a common issue.
To date, there is no cure for Parkinson’s disease. However, a variety of medications like Sinemet, a combination of carbidopa and levodopa, are used to help manage symptoms. For some patients, deep brain stimulation through implanted electrodes can markedly reduce their motor symptoms.
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In 2004, the Powderly family moved to Maryland, where Mike was able to work at his local company branch. However, he faced new uncertainties. “It was a difficult decision of when to tell people at work he had Parkinson’s,” says Maryann Powderly, his wife, who works in Patient Financial Services with Johns Hopkins Hospital in Baltimore. “He was in sales, doing presentations; a little shaky, his voice not as strong. Would people think he was losing his edge or possibly even drinking?”
In 2006, Powderly underwent deep brain stimulation surgery at Johns Hopkins, in an effort to reduce the amount of medication he needed and prolong his ability to work. The surgery has been “life-altering,” Maryann says. While numerous other symptoms persist, Mike’s shaking is greatly reduced. Nevertheless, work ultimately became too much of a strain. In 2010, he went on long-term disability.
Question of Age
The average age for a Parkinson’s diagnosis is 62.5 years, says Dr. Gregory Pontone, director of the Parkinson’s Disease Neuropsychiatry Clinic at the Johns Hopkins Hospital.
“This is right around the time where people are wrapping up their careers and getting ready for retirement, so they’ve made one set of plans assuming they’re going to have a continuation of general good health,” Pontone says. With the diagnosis, couples must reassess long-held ideas of their future.
An estimated 10 percent of those with Parkinson’s are diagnosed at 50 or younger. Called early-onset or young-onset Parkinson’s, it presents a different set of challenges. Although symptoms are similar, the disease tends to progress more slowly in younger people.
Receiving a Parkinson’s diagnosis is daunting at any age, of course. Some patients may be in denial at first. (Pontone strongly encourages people to get a second opinion and receive clinical confirmation.)
The diagnosis might be most shocking for early-onset patients, particularly those still in their 30s or younger. Patients under 40 make up a small minority of all cases, Pontone notes. But it happens.
Stunning Diagnosis
For actor Michael J. Fox, it might be his breakout role in the 1980s TV series “Family Ties” that viewers remember most. As young Alex P. Keaton, he was quick-thinking, funny, brash and endearingly boyish. In 1991, at only 29, Fox was diagnosed with young-onset Parkinson’s disease.
In 2000, he launched the Michael J. Fox Foundation for Parkinson’s Research, where he’s made an undeniable impact. “Our foundation has put $800 million toward Parkinson’s research with him at the helm,” says Dr. Rachel Dolhun, a movement disorder specialist and vice president of medical communications with the foundation.
For younger adults, a diagnosis might be more elusive because it’s easier to overlook. “Even when you’re experiencing symptoms, it can be difficult to just get an idea of what’s going on,” Dolhun says. At 30, 40 or even 45 years old, she says, “When you’re having a tremor or you’re having stiffness or a shoulder ache, Parkinson’s isn’t the first thing that jumps to mind, necessarily; either for you or your doctor.”
Physical Focus
Physical and cognitive changes have taken their toll on Mike Powderly, his wife says. Once an avid runner who completed the New York City Marathon, he now sometimes finds himself frozen in his tracks, unable to move.
Physical activity is essential for pushing back against Parkinson’s. “Right now, the best evidence for disease-modifying intervention is physical exercise,” Pontone says. “Not only does physical therapy and exercise help improve the day-to-day symptoms and maintain a certain level of function, we actually think it might slow disease progression.”
Ideally, ongoing health care from a multidisciplinary team focused on movement disorders offers patients with Parkinson’s a specialized, coordinated approach. All patients should have a neurologist to treat motor symptoms, a physical therapist and possibly a trainer, and a psychiatrist or psychologist if needed, Pontone says.
Facing Hard Hurdles
Powderly has suffered numerous falls, Maryann says, some requiring emergency room visits. Their sons have seen a lot. “Their dad had brain surgery,” she says. “That’s scary. Our youngest was 10 years old. The pro is that they are very nurturing and caring young men.”
With young families, a typical schedule of kids’ sports and activities often vies with the multiple medical appointments and caregiving tasks around the person with Parkinson’s. Having a supportive family network is crucial.
Relationships in a marriage shift, Maryann says. At times, the caregiver role feels like parenting: managing medications and reminding her husband to sit up when he eats so he doesn’t choke. The couple worries about side effects from long-term medications.
Strong religious faith has helped the family a great deal. Despite all the hurdles, Maryann says, “We are blessed with a great life and a great family. We all try to provide care with love.”
People shouldn’t make assumptions about what caregiving may entail, Dolhun says: “Support and being a care partner look different for different people, and it looks different at different points in the Parkinson’s journey.” In early phases, it might be a wife helping her husband by picking up their kids at school when he feels tired, or reaching into his back pocket to take out his wallet when he’s having a little more trouble moving his hands.
[See: 14 Ways Caregivers Can Care for Themselves.]
Dolhun is encouraged by treatment advances and research in the pipeline around therapies to slow or stop disease progression. “Since 2014, we’ve had six new therapies approved for Parkinson’s,” she says. Recent medications address both motor symptoms and non-motor symptoms, she says, such as hallucinations and delusions that affect some patients. In addition, a new deep brain stimulation system was approved by the Food and Drug Administration in December 2017.
There is ample reason for hope and optimism, Dolhun says. “There are so many people that face this diagnosis and live with Parkinson’s for many years who have fulfilling and productive lives,” she says. “It’s not a diagnosis of doom and gloom. You can be proactive and live really well.”
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Married With Young-Onset Parkinson’s Disease originally appeared on usnews.com
