Each month, we spotlight Moments of Victory® from people in our community. Today, we are happy to feature Charlene Narciso, wife and care partner to Davis Phinney Foundation Ambassador Joe Narciso, from New Providence, New Jersey.
Briefly describe your journey since becoming a care partner for a person with Parkinson's
My journey as a care partner began before my husband's diagnosis. I was familiar with symptoms due to my employment at a nursing home during my college years. He was in his late 20's, and I was not yet 27. When I began educating myself in the late 1990s, the information I gathered was scarce and depressing: it was an incurable disease, and most patients lived for only 10-15 years. After weeks of crying, my attitude gradually changed from despair and desperation to anger. I was angry that the information I read was so negative, and I let it take away my hope. So I decided to prove everyone wrong. I knew Joe's Parkinson's would progress, but I could control how I would face it. So I researched healthy living strategies, went to therapy, tried to live a life that I thought was fitting for a young family of four, and encouraged my husband to get involved in as many activities with his daughters and friends as possible. We're now a family of five, three kids, Joe, myself, and a granddaughter as well, and I'm still working on proving everyone wrong.
How do you live well each day?
I wake up, take my medication, thank God for the day, and work to manage my own health issues. When I feel well, I keep busy. I was very active when I was younger but had a traumatic brain injury at 39. For a few years, I was dependent on the help of others which made my need to be in control slowly recede. My entire life as a care partner has been an exercise in releasing my need for control. I tend to lose myself in my role as a care partner and have had to reset with the help of behavioral health specialists.
It has been 18 months of reorganizing my priorities and putting my own health at the same level of importance as the people I love. I reach out to my friends more, eat healthier, and open up more about my life to my adult children. I have created boundaries between myself and those who drain my energy and spend more time with those who build me up. It is not always easy because love still exists in the relationships I have had to limit, but I have finally come to BELIEVE in the adage that you do have to put your mask on first. I have known it for a long time, but now I believe it.
What do you wish you would have known when you became a care partner for a person with Parkinson's?
Very little support and information were available to me as a care partner when Joe was diagnosed in 2002. Parkinson's is challenging for the entire family, not just the person who has it. It is okay to acknowledge that. It is okay to acknowledge that there is a loss of the plans you made as a couple that you need to mourn. I commend myself for trying my best to be positive since day one; however, I wish I had known how strong my husband is because he has never given up. I thought his health was only up to me. A Parkinson's doctor once told me, "You are only as healthy as the care you receive." I wish I had known that her statement was completely wrong. Parkinson's is progressive, and while I can do my best to help Joe, it will never be enough to cure it. Putting so much pressure on myself initially due to thinking that Joe's health was up to me was exhausting and fruitless.
What do you wish every care partner for a person with Parkinson's knew about living well?
I wish every care partner knew the connection between environmental toxins and Parkinson's and that we have a moral obligation to protect future generations by advocating at local, state, and federal levels. I know that there may be no immediate gratification, but I have a tremendous sense of peace knowing that I am part of a solution rather than a helpless victim.
SHARE YOUR VICTORY
Each month, we spotlight people from our Parkinson’s community who embody living well today – what we call Moments of Victory®. Your story, like Charlene’s, could be featured on our blog and Facebook page so others can learn from your experiences and victories.