Category Archives: attitude

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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Supporting the cause by supporting a new Team Fox family member

Lately I’ve felt like I haven’t really been contributing much to the cause. I find myself in more of a background role, itching to get started again on a new Parkinson’s project.

Emily and I went up to Morristown, N.J., recently for a friend’s fundraiser, and I was telling Stephanie, from the Michael J. Fox Foundation how I was feeling. She reminded me that in supporting those people and getting others involved in the cause, I’m still doing something amazing.

The next week, I really got to see this in action at the Philadelphia Marathon. And I’m so grateful.

Continue reading Supporting the cause by supporting a new Team Fox family member

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

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

Two holes in one? Is a Parkinson’s cure next?

Hole in one No. 2
Hole in one No. 2

In 2006, at the age of 57, I was diagnosed with Parkinson’s disease, a chronic, progressive, neurological
disease. That year I retired to enjoy the fruits of over 40 years of work. Like all people who receive life-changing news, I was devastated, but I was fortunate that I had a wise wife. Cecily reacted to the news
in an unexpected way. Her response was “Thank God it is not something that is going to kill you in 90 days. We can deal with this.”
Retirement offered many opportunities to do things you really never had done before. One of those was golf. I had played golf on a very sporadic basis during my life, but not in a way to have a golf swing.
Over the years my game has improved, but I knew that I would only be a mid-handicap player due to rigidity, a major symptom of Parkinson’s, and the hourly fluctuation of symptoms caused by the short efficacy of the medications. Despite the challenges, golf along with other exercise seemed to slow the progression of the disease.
It is every golfer’s dream to make a hole in one. So on May 6, 2013, I was ecstatic to achieve that dream. Of course I celebrated and then went back to playing golf. I was different then before because now I knew I could make a hole in one on any par 3, because I had done it. Being an optimist didn’t hurt either.

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

On September 14, 2014, I was fortunate to make my second hole in one. Again it was a time for celebration. Both holes in one were made on my home two courses at Lake Ashton, but they were on separate courses.
Eight days later on September 22nd we reached the first par 3, my golfing partners were giving me a hard time about since I had gotten a hole in one the week before, why don’t you just do it again. Laughing I stepped up to the ball and hit it. To my surprise it was a good shot, and to our surprise it went in the hole.
Two holes in one in eight days.
The odds of that happening are astronomical, even for a player who doesn’t have Parkinson’s.
I reflected on the accomplishment and tried to put in context. I have spent the last eight years living with Parkinson’s and preaching to all that will listen to keep active, positive and fight the fight. You never know what you can accomplish when you try.

Maybe next Monday they will find a cure for Parkinson’s.

‘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?

Our words are a gift

Photo collage from donttouchheart on Instagram done by Daily Record/Sunday News
Photo collage from donttouchheart on Instagram done by Daily Record/Sunday News

A few weeks ago, my friend who writes for our paper sent me an obituary he saw in the Hanover paper. I read obituaries every day looking for “news stories” and this one had a link in it. It was for a 28-year-old woman and had a link to her blog.

It starts out:

As many of my friends on facebook know, I was thinking about having a new outlet to let out some of my feelings through my journey with cancer. I was worried about a few details with this — one being I am a poor writer. I am not kidding when I say this — I am worst then a skier with a fear of snow. Each post will take me a very long time — so I ask you to please ignore the poor grammar and style that I have.
I hope this can provide something as insight to my friends and maybe guide others who are going through the same thing that I am. Either way I am going to give this my best shot.
— April 29, 2013

I knew from that moment that this was going to be a powerful story (turned out to be the best he’s written in my opinion) and one with am important message I try to reinforce with my family and you — the readers of this blog.
Continue reading Our words are a gift