The real heroes fight daily against Parkinson's

This column Kate wrote ran in the York Daily Record in June 2012.

 

This column was supposed to be about my dad’s friend, James Mangini, who just finished running from Charleston, S.C., to New York City to raise awareness and money for Parkinson’s disease.

It was supposed to be about how in awe of him I and my family are. How since he started the journey, we’ve spoken of him daily. Recounting his injuries — there are many, from collapsed arches to micro tears, to blisters he says feel like you’re walking with marbles inside your feet.
We’ve been talking about his “crazy” desire to get the word out.
This was supposed to be about how I took a day off from work last week to support a man I barely know, and a cause I know too well.
So, don’t get me wrong. James Mangini is the hero of this piece.Not only has he subjected his mind and body to 30 grueling days on the road, but he’s done it with the knowledge that he might be the eighth member of his family — behind his father and grandfather — to have Parkinson’s.
So he kept walking and running to tell people that Parkinson’s affects 1 in every 100 people over the age of 60 and plenty of young people as well.
And, again, don’t get me wrong. James Mangini is my hero. For who he is, for whom he represents, and for who he makes me want to become.
It was only six years ago that I was home for a wedding and my father broke the news that changed our family’s life.
He had Parkinson’s — something I only knew about because of Muhammad Ali and Michael J. Fox—saying in the same breath that he would never get to the point where he couldn’t take care of himself.
I don’t know what happened in the weeks or months after that.
Next thing I knew, he was starting a golf tournament for the Michael J. Fox Foundation and my sister and I were on our way home to drive the beer cart.
It was in that room during the luncheon of the first annual tournament (there have been three now that have raised $79,000) that I realized what happened to my father.
Yes, he had Parkinson’s. And he was going to let it define him. Only because he was going to raise awareness and fight for a cure.
Over the years, I’ve learned he’s not the only one.
This April, I accompanied him to the Michael J. Fox Foundation Most Valuable People dinner and met so many amazing people — many of whom have PD.
They were going to fight this disease as best as they could, too. They’d run marathons. Hold bowling tournaments. Flip pancakes.
But we can’t all be heroes.
We can’t all run 30-plus miles a day for 30 days straight, like James.
But behind people like James are people like my dad and his friend, John, and all those struggling with the disease. Who see James’ journey as their own. Who are loudly fighting by raising awareness, money and helping others.
Who, like James, are in the proverbial marathon of their lives and refuse to give up.
There are people, like my mother, who are caregivers — whose lives will become even more so about their love for someone else, someone who needs them.
There are those of us who don’t feel as though we have anything to offer other than love — who want so badly to do something grand.
To raise that large sum. To find that cure. To write that perfect story. To be like the others who have given so much.
Yet I feel like these words fall short. Baking a dinner, attending an event, taking James out to dinner for a break from RV-made food. It isn’t enough.
Because when it comes down to it, these are only words. The hope, though, is that words will always have power.
To say daily to the man running for so many of them — you’ve got this. You are not alone.
To say to my father, we’ve always got your back. And we’ll always be here.
And to say to my mother — possibly one of the biggest heroes in this tale — I hope one day to be like you. To have the selfless love of someone who still has everything to lose.
I’m not saying everyone should fight this fight. Pick your own battles.
Because what’s life worth living if there’s nothing worth fighting for?

This Article was written by Beth Ferguson, Human Resources Business Partner at Emily’s workplace, Lockheed Martin. We are all involved in finding a cure for Parkinson’s and helping those with this disease through their journey.  However, Emily has chosen to work quietly, without fanfare. Just because you don’t hear from her as often as Kate and me, don’t think she is not in this fight.

 

Volunteer Time

 

A few months ago, we asked to hear from you about volunteer work that is near and dear to your heart. Pinellas employee, Emily Harmon, Environmental Health and Safety Engineer shared her story about her passion for the Michael J Fox Foundation for Parkinson’s Research (MJFF). Emily’s father was diagnosed with Parkinson’s disease in 2006. The diagnosis lit a fire within the members of her family which promoted them to start a support group in Winter Haven Florida. Emily states that her family sponsors an annual golf tournament to raise funds to support the MJFF. In addition to the golf tournament, her family participates in clinical trials and a Parkinson’s Unity Walk in NYC.  In the last four years Emily and her family have raised approximately $140,000 and have created a website where they feature a family blog that documents their individual and family journey. Emily states that for Father’s Day this year, her family’s story went national when MJFF featured a story their website and from that post, over $9,000 was donated to the foundation and the Huffington post picked up her family’s blog. 

We can see why Emily has a strong passion for her volunteer work and why it is near and dear to her heart. Thank you Emily for all that you do to promote awareness for Parkinson’s disease research and patient support. Have a moment? Check out the website.