Category Archives: awareness

10 years in, reflections and re-dedication

dadIn a little over a month, I will celebrate the tenth anniversary of my diagnosis of Parkinson’s. Ten years ago, I was working and Cecily was not, and both of our girls were still in college. I was healthy or at least I thought I was, and I was fully engaged in the pursuit of the American dream. Then the doctor’s visit where I heard “You have Parkinson’s disease “which shifted my reality. With Cecily’s help, I was able to adjust to this new chapter of my life.

Parkinson’s has given me an endless task of pills and physical challenges. I am not complaining. I am fortunate that the disease is progressing slowly, but we can’t stop the march of time.

Parkinson’s has also given us a new community that participates in our journey. This community consists of a number of entities. First and foremost of which is a stronger family unit. The Harmon “Wonder Women” have shared the good, bad and the ugly. They are the foundation of our journey with PD.

Second is our friends, new or old. Without them, we are an empty shell. Thirdly is our TeamFox family. They make me laugh and they make me cry with their extraordinary feats and accomplishments. When we meet old Foxes or new ones, there is an instant bonding and understanding. The PD Warriors, whether part of TeamFox or not, make up a strong brotherhood of support and love that makes this journey much easier. Their focus is not on how many times they fall, but how many times they get back up.

So, my time with Parkinson’s has passed quickly. We have not found the cure, yet. We are moving forward. A number of promising research projects are in trials that may relieve symptoms and be almost as good as a cure. But that is not enough. We have lost too many of our fellow warriors, with the passage of time.

Recently, our family joined TeamFox in a 10K at the Disney Marathon weekend. When I crossed the finish line, I reflected on friends who have passed away with PD this year. I realized we are not doing enough. TIME IS OUR ENEMY!

THE TIME IS NOW TO RE-DEDICATE MYSELF TO FINDING A CURE. PLEASE JOIN ME. LET’S END THIS DISEASE.

TWO SHOES ON AGAIN (not running kicks)

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Let me tell you a little story about my Mom

1519599_698695746830758_1959666373_oA little while ago, The Michael J. Fox Foundation asked me to interview my Mom for a newsletter about the PPMI study that she’s involved in.

They wanted the personal touch of a mother and daughter talking about why my mother is so awesome and involved. (OK, so maybe the author is biased. Just a tad.)

In the end, I wrote a novel, so only a small part appeared in the newsletter. See the whole piece below.

Fall 2014 Newsletter
Continue reading Let me tell you a little story about my Mom

Finding partners in Parkinson’s

Look at this crowd of people at the Philly #partnersinparkinsons
Look at this crowd of people at the Philly #partnersinparkinsons
Taking a selfie with the panel for Building connections with community, family and friends!
Taking a selfie with the panel for Building connections with family, friends and community!

Recently, I had the absolute honor to be a panelist at the Partner’s in Parkinson’s event in Philadelphia.

What’s Partners in Parkinson’s? It’s a newish initiave from the Michael J. Fox Foundation and Abbvie to help Parkinson’s patients get the full benefit of a team when it comes to their journey. What’s that mean? Well, you can attend events to learn more about how you can help and about PD in general. Or you could find a new specialist. Or you could get one-on-one support from an advocate.
It’s a really cool tool that I’ve personally be able to use to get someone help finding a doctor in New York from right here in York, Pa.

The Foundation asked me to come out to Philly to be the “adult child” of a person with Parkinson’s on a panel called “Building Connections with Family, Friends and Community.” The goal? To share my story and help these people find ways to get involved or get more information. Most of the people in attendance were either recently diagnosed or have recently decided to get involved.

We had a conference call to prep for the panel, but in the end, we were told to be ourselves (they know better!) and share our stories. Simple enough, right? Well, I got a little nervous on the way.

Continue reading Finding partners in Parkinson’s

A childhood friend leads to a Team Fox run

Here's Mom and Des!
Here’s Mom and Des!

A few years ago on my mother’s birthday, she found one of her long-lost childhood friends on Facebook. Needless to say, she was really, really excited.

So imagine just how excited she got when that friend and her husband ended up moving about 40 minutes away. Since then, Mom and Dad have spent a lot of time with Desiré and her husband, Jack.

That lifelong friendship took another huge step forward recently when Jack announced he would be doing the Tri Rock Triathlon in Clearwater for Team Fox in my dad’s honor. Talk about friendship, right? Jack also had an uncle who battled Parkinson’s.

Take a look at Jack’s page, and please feel free to donate to the cause.

My name is Jack Foard. My good friend Bob Harmon has Parkinson’s.
Since his diagnosis some years ago Bob has given everything he has to do battle with the disease, but not just for himself, he has been fighting for every single person and every single family afflicted by the disease. In my own family, a dear uncle, Ted Bell lost the fight a few years back.
Bob has raised ten’s of thousands of dollars for Team Fox, funding worldwide Parkinson’s research. As the hundreds of people Bob has personally helped deal with the disease will tell you, Bob lives a full life made fuller by focusing on others.
Today I am focusing on Bob. I’m pulling my 67 year old body into shape to finish this sprint triathalon hoping that folks like you, folks who want to win the race against Parkinson’s will give a few bucks in Bob’s honor (or in honor of a loved one.)
I’m swimming, biking and running (walking actually) to honor Bob Harmon and the selfless way he has helped anyone and everyone touched by this cruel disease. And for Uncle Ted, a dear man and a fine athlete in his day. And for you and your loved ones too. The dollars you pledge today will be responsible for the improved treatments of tomorrow and someday the cure. Thank you so much for taking the time to make a pledge now.

Dad, Mom and Emily will be there as Jack raises money for his uncle, my dad, and all of you fighting this cause with us.

Find your moment for hope

The first time this month when my Dad got a hole in one, I was ectastic for him. And about a week later, with the second (his third ever), I thought it was full of it. I really did.

Hole in one No. 3
Hole in one No. 3

Sure, he called me and everyone else in the family to tell us about his success. But on Facebook, it was a different story. He wrote:

Here USA picture of the ball in the hole and me taking it out. I would give up both for a cure to PD. This is nothing compared to Nancy Mulhearn run this weekend. You rock Nancy.

 And a lot of his friends and Team Fox family flocked to Facebook for congratulations.
Jimmy Choi Another one?!? That’s 2 this year no?
Bob Harmon Jimmy Choi in 15 months. Nothing like your marathon history
Debi Daniels Bob Harmon you are one terrific man and we are proud to know you
Nancy Bowie Mulhearn Bob, I think you are the rock star this weekend; I am the background singer! Still seems unbelievable to achieve, but a hole-in-one takes center stage!!! Wow!!! Congratulations!!
Nancy Bowie Mulhearn Actually, shaking my tambourine with a rock band is next on the bucket list…
Jimmy Choi I’d trade the marathons for 1. 10 years ago I was a 2 handicap and I have never had a hole in 1!

Continue reading Find your moment for hope

‘Dad, this isn’t about me, it’s about finding the cure’

What a month April was.

We started off the month with the whole family gathering for the 5th Annual Golf for the Cure. For those who remember last year where everyone told me “You did to much,” I made a pledge that I would get more help this year. Well, I lived up to that pledge and was fully recovered two days after the tournament. Thanks to all who helped me carry the load especially my family.

The event once again showed the generosity of the Lake Ashton community. We raised over $47,000 this year, which brings our five year total to over $200,000 (including matches through the Michael J Fox Foundation). The event also had a few surprises for Bob (I hate surprises). Since the event coincided with the MJFF MVP dinner, which we were unable to attend, and members of the foundation were unable to come to our event. Hence the surprise, we received a two-part video with Stephanie Paddock from the foundation and Michael J Fox with a personal message for our community and my family. Due to a production glitch, Emily’s name was left out. When the family told me of the problem the night before two things happened. The foundation went out of their way to send a letter to Em and a picture from Michael thanking her during MVP. But the best thing that happened was Emily’s immediate response. She said: “Dad this isn’t about me, it’s about finding a cure.” Boy, does she get it or what.

At the end of the month the local newspaper ran an article about our efforts in the community. It is an honor to be chosen for the piece, and I am somewhat embarrassed by the attention. The upside is our journey was exposed to almost 70,000 readers, and it was Parkinson’s Awareness month after all. As I was reflecting on the month and being “out there,” I thought of Emily’s comment and everything fell into place.

This isn’t about me. It’s about finding the cure

So, thank you again to all those who helped us, all of the donors, and to the Lake Ashton community, you are part of the effort to Find the Cure. Thank you Emily for reminding me of the lessons we have previously learned.

TWO SHOES ON AGAIN

How much did Golf for the Cure bring in …

Did you see who Team Fox featured on Inspiration Monday?
Did you see who Team Fox featured on Inspiration Monday?

I just wanted to share this photo of Dad with you all and tell you some big news.

So there are still some checks and dollars to be counted, but the 5th Annual Golf for the Cure for Parkinson’s Disease has raised MORE THAN $45,000 for the Michael J. Fox Foundation.

SAY WHAT?

That’s right. Thanks to your support, our sponsors and the Lake Ashton community, in five years, you’ve helped us raise more than $200,000 for the foundation to help find a cure.

I interviewed a mother today, who was diagnosed less than a year ago with PD. She was talking to me about why we do this. Why we fundraise. Why we participate in clinical trials. And she said:

“Maybe more moms at the age of 42 won’t have to look at their kids and say this is going to be a long road, but we’re going to just fine.”

Thank you, thank you, thank you. For being a part of this goal and our journey. We seriously could not do it without each and every single one of you.

Where have we been?

I know, I know. No one likes a blog post that starts off … Sorry for being MIA lately, but. And here it is. There are plenty of excuses of where I’ve been, what the family has been up to, etc. But what it comes down for me personally, is that work has been insane and I’ve been missing out on my PD family.

Let me catch you up with what’s been happening.

Meet the Vanek family: Emily, Sherri, Ben and Michael
Meet the Vanek family: Emily, Sherri, Ben and Michael

Recently, I had the honor of interview the Vanek family for the Michael J Fox Foundation’s blog. The dad, Michael, has PD and is participating in every trial he can. It was seriously one of my favorite, if not my absolute favorite story I’ve written for the blog. Why? Honestly, I’m not sure. But I think it has to do with the innocence of the children in the family.

Little Ben, 6, goes to bed every night praying that “daddy’s Parkinson’s” go away. He doesn’t know what that means really. Nor does he understand that his dad is playing an active role in the cure.
Continue reading Where have we been?

Apathy the silent killer

I know that apathy is typical in PD patients. It has always driven me crazy when I see my fellow journiers (I made this word up, but it works for me) not being aggressive or active in pushing the beast back. Last week, I told Cecily that I was “losing traction” on our sponsor relationships for our fifth golf tournament. She reminded me of the great year we had in 2013 and we don’t always have to be better. It sounded un- American. Don’t we always strive to do better?

So I sat on my ass for a day and reflected. I came away conflicted but directed. From a fundraising standpoint, I am comfortable in knowing the generosity universe in a small community has a limit. Re-energized I caught up on my tournament timeline. Some pluses, some minuses … but every contribution regardless of historical numbers means so much. So to all of us on the money train of charitable efforts,  DO YOUR BEST AND FORGET THE BUDGET AND HAVE FUN.

From the health side, (apathy or even depression) not every day is “fantastic,” but is a day to make the best out of. Actually every day should be fantastic, because we are blessed to have it and there are not promises for tomorrow. Do we feel good everyday? No. But it is like golf. It is not how good your best shot is, it is how much good you can do with a bad shot.

So if you find me sitting on my ass and apathetic, kick me in the ass. Just don’ t kick my foot because it may be already on the way to my own ass. For anyone out there who loses their drive to take the best out of what we have, take heart. You are not alone. Together we will move forward.

TWO SHOES ON AGAIN, as soon as I can get it out of my ass.

York: Where do we go from here?

Want to help me make this year's Pints for Parkinson's better than last? (Photo by John Ryan)
Want to help me make this year’s Pints for Parkinson’s better than last? (Photo by John Ryan)

I could give you lots of excuses about where I’ve been instead of blogging, but they’re just excuses. Work has been busy, life has been busy. Yadda yadda yadda.

Instead, I’ll just jump right into what’s been bouncing around in my brain lately — this year’s Pints for Parkinson’s.

I want to be bigger and better this year, and I’m struggling with direction. So I ask you: friends, family , York …

Where do we go from here?

I’ve thought about upping the ante and making the event into more of a bar crawl with several bars all in walking distance (if the bars will play ball). I’ve thought about what I could do to raise more money — raffles, auctions, more music, art, etc. Then there’s the whole idea of reaching out to find more people. Then my brain gets a little overwhelmed and I worry that I can’t do it. That maybe I can’t raise more than $3,000. What if it was just a one-time deal?

But I refuse to let that stop me. If my Dad and my friends can get up daily to fight PD, I can deal with a little fear of failure. So what should I do to make this year’s Pints for Parkinson’s better?

Yes, I would like to raise more money. But what’s the most important thing to me is increasing our impact. How do we find those people who need to know about Parkinson’s? Or find those people who think they’re alone dealing with PD? How do we find them, get them through the door and tell them they are not alone? It’s a question I’ve posed before on this blog.

Hit me up with your thoughts. I’m open to all ideas.