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Parkinson's takes a toll on families too [Commentary]

FamilyParkinson's DiseaseDiseases and IllnessesU.S. Centers for Disease Control and Prevention

This year, approximately 60,000 Americans will be diagnosed with Parkinson's, joining the 1 million people already living with the disease in the United States and the 4 million to 6 million diagnosed with it worldwide. Their painful struggle is one that I know all too well.

I remember when my dad first had symptoms of Parkinson's, a motor system disorder that results from the loss of certain brain cells. For him, it started with a persistent numbness in his arm and hand that led to a decades-long battle with the ever-increasing symptoms that eventually took his life in 2013.

My father confronted challenges with an understanding that you can't always choose what life brings you, but you can always choose the attitude that you bring to life. It is this tremendous spirit and positivity that I remember most about him and try to emulate each day in his honor.

While we had no family history or experience with Parkinson's, my parents found a strong support system that helped them through the various stages of the disease. In addition to family and friends, many local community members, neighbors and organizations opened their hearts and took time out of their busy schedules to advise, care for and be there for both my mom and dad. I feel blessed that my parents were surrounded by so many amazing people who offered guidance and understanding throughout their tough journey.

Since my brother and I did not live in the same town — or even the same state — as my parents, we were unable to offer the day-to-day physical support we wished we could. The task of primary caregiver was left to my mother. Not seeing my dad daily, my brother and I witnessed the disease advance in a more shocking and immediate manner that seemed worse with each visit, whereas my mom experienced it at a much more gradual pace.

As my father's disease progressed over time and even the simplest tasks became hard for him to tackle on his own, I grew increasingly concerned for my mom's health and well being.

Caregivers, like my mom, face extraordinary demands both physically and emotionally. More often than not, they are the ones navigating the treatment and care path — trying to figure out which approaches will bear the best results for their loved ones. As my father's needs for care grew — especially when Parkinson's began to affect his mental health — my mother eventually required home health care workers to help tend to my father's needs.

This is why I am so grateful for organizations like the National Parkinson Foundation (NPF) because I know that they, along with others, offer support, strength and hope to patients and caregivers. NPF's efforts to improve the quality of care for those with Parkinson's and educate all of us on this disease are truly important.

Education is crucial in early detection of Parkinson's symptoms and communicating immediate steps to take. Families are on the front lines of Parkinson's. Often it's the spouse, son or daughter who first notices something. Knowing what to look for and what to do can make a big difference. Resources such as those found at www.parkinson.org can provide life-saving information.

The Centers for Disease Control and Prevention rated complications from Parkinson's disease as the 14th leading cause of death in the U.S., with the prevalence expected to grow as the population ages. In our country, the economic burden of Parkinson's disease is estimated to be $14.4 billion annually.

Parkinson's disease does not discriminate; it affects all races, genders and social classes. Despite the growing body of research, Parkinson's is a complex, chronic illness that we still know very little about. Continued research, education and advocacy are crucial to getting closer to one day finding a cure.

Although Parkinson's eventually led to the end of my dad's life, I do believe that he and my mother showed triumphant strength against this relentless adversary. I am proud that as Parkinson's brought my dad greater and greater physical challenges, he evidenced greater and greater courage. I know there were days when the challenges were just overwhelming, but my parents never gave up, never stopped pushing forward; they never let the disease rob them of their dignity or love.

I am honored to continue that legacy and invite others to join me. April is Parkinson's Awareness Month — an important opportunity to learn more and get involved. As a nation, we can work together to meet the urgent challenge of Parkinson's disease and the burden of chronic illness in this country.

We must be, and can be, stronger in the face of it.

U.S. Sen. Cory Booker is a New Jersey Democrat. He can be reached at info@booker.senate.gov.

To respond to this commentary, send an email to talkback@baltimoresun.com. Please include your name and contact information.

Copyright © 2014, The Baltimore Sun
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