In 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.
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.
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?→
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 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.
I got an email at work the other day from a guy trying to promote a book he and his father did about Parkinson’s. It’s kinda cool that it came to me, though I’m not sure if it was a mass emailing or I was singled out.
Either way, I thought I’d share it with you.
Mike Oltersdorf is a Paul McCartney lookalike who has Parkinson’s. He uses Beatles’ music to inspire others who are struggling. He wanted to write a book in 2008, but his progression made that difficult. That’s when his son, Mike, stepped in.
“These lessons from my dad are all about leaving a legacy, so it’s actually very fitting that I am able to step in and continue to share the lessons my dad has instilled in me and used to inspire many others,” Dan said. (Sound like anyone you know? Cough cough Em, me, and all our Team Fox kiddos.)
“I have Parkinson’s so that’s kind of my broken wings, but everybody here has a broken wings story. It’s one of those things that if we can help each other take our broken wings and learn to fly, we can make a change.”
Here’s a three-minute clip about the book “The New Norm” and information if anyone is interested.
It was really hard for me to contain myself this year when it came to a Christmas gift for Dad. I came up with the idea of making a book full of photos of his (our) Parkinson’s journey.
I reached out to a handful of our closest Team Fox friends to add their words of what Dad means to them.
Needless to say, it was a giant hit.
Dad spends so much time doing things for others and making sure they aren’t down. I wanted to do everything I could to show him that he isn’t alone either. That all of these people are ready and able to help pick him up when he’s feeling down, too.
So I’ve been thinking about getting a tattoo for awhile. I brought it up to Emily maybe a year ago and she actually said: Where do you want to get it? The inside of your wrist?
Seriously, weird twinsie thing going on there because that’s actually where I wanted it.
The reason I hadn’t done it yet is because I was torn between two ideas. What I really wanted was a little firefly. Why? Because of this passage I found in the beginning of Dan Barry’s “Pull me up.”
I have rustled through life with a notebook pressed to my chest and a pen bleeding in my pocket. They are the instruments I use to ease the low-grade panic born of the absurd sense that it is my passion to record moments. I chase stories with pen and paper the way a child chases fireflies … But when I capture those moments, those fireflies, I do not know what to do next. The light dies to leave shells of moments, just words, recorded on scraps of paper, bar napkins and old reporter’s notebooks that I keep in boxes.
Why do I feel compelled to record life at the expense of living life? Why do I ignore the lessons learned from what I have been through? Why do I want to repair things that are beyond repair? Why am I nagged by the constant sensation that I should be somewhere else – standing there, not here; witnessing that, not this?
I read the passage to Mom and Dad the other day, and Mom yelled out, that sounds just like you. Turns out though, there aren’t any nice images of fireflies that I could find. Shocker.
My other idea was the Team Fox/Michael J Fox Foundation symbol, the fox.
I had the honor the other day to interview the family of a local fire chief who was killed in the line of duty nearly seven months ago. Jason Plotkin (marathon photographer extraordinaire) grabbed them for a quick photo, and they took a few minutes to speak to me.
They spoke of the fame they never wanted and the support they never expected to receive. The shared laughter, tears, and moments where they struggled to find the words to say.
How do you answer the question of how are you? Or what has life been like since you lost your loved one. You just can’t. There was more said in the glances between them, than the words I wrote down. And so much more left to say one day.
How do you prepare for that first holiday with an empty chair? How do you wait for the phone to ring and forget for a second, only to think maybe it’s your son?
Almost two years ago, I met a man through the Michael J Fox Foundation mentor program named John Ryan. I was immediately drawn to him because of his outgoing personality. I don’t know if John has ever met a stranger. Needless to say we became friends, and now call each other “my brother from another mother.” John was running his first half marathon right after we first met which was a challenge for him. Somewhere along the way John began talking about running in the NYC marathon. I told him if he crazy enough to do it I would be there to support him.
Well, he was crazy enough and last weekend I found myself in NYC along with Cecily and Kate (Emily was not able to join us because of work). My promise to John not only was being fulfilled, but Kate had pitched an offer to the Foundation to take pictures of the event, which included bringing Jason Plotkin, an Emmy award winning photo journalist, and his wife Melissa. So instead of just being there to see John, we were included in the Fox Foundation weekend race plans.
This weekend rates number three in my life’s best moments, only after marrying my wife, Cecily, and the birth of our twins. Sorry hole-in-one you weren’t even close. It wasn’t because we were in close proximity to Michael J Fox, his family, and members of the cast from his new television show, but it is because we were part of a large community of people with a common cause — the cure for Parkinson’s disease. Within this group there is an intense bonding process that goes well beyond normal friendships. There is no single hero, but hundreds of friends supporting the runners and thousands more who weren’t there physically, but were in spirit. Sure, the runners were running for themselves, but many of them had the name of the person they were running for in their pocket or on their shirts. What they may not have realized prior to the race was that they were running for all of us in the Parkinson’s community.
At our cheering section, we spent the day cheering for those we knew and those we didn’t know. We laughed, yelled and even shed a tear or two (buckets). There were moments of understanding that we can do more, and there were moments of pride in our friends who were running, but the realization of the power of the relationships we had and were building was overwhelming. This experience that I had was happening on every block of the race. Not for Parkinson’s but for many different reasons. On one side trip (to find a restroom), I even heard a spectator yell “go runners.”
There were two moments in the day that stand out in my mind, as really special. The first was when John Ryan, Tim Ryan, Sue Bilotta, Gwen Schroeder, and AJ Capuzzi (a neighbor of John’s who was not a runner, but offered to join him) reached our cheering section. The police had done a great job of keeping spectators off the street, until then. Grown men cried and hugged (not me of course- any pictures to the contrary are photo shopped), beautiful sweaty women warriors were embraced and high-fived, husbands were congratulated by their family (eventually). All of it was captured on tape until the camera woman (Kate) was drawn into the celebration. Here’s the video, but as a warning, bring a Kleenex.
The second moment was when Mike Kelly, a new friend of mine, reached us. He had started later and it was getting cold (actually colder) and dark. He was freezing cold and tired, but he was determined. Before he reached the surging crowd, Michael J Fox met him with a hug and joined him to finish the race. As they took off up the street both Mikes broke into a run. Yep, a second bucket of tears. When I saw Mike Kelly after the race, at the post race party, his hands were so cold that I gave him my hand warmers (which were harder than if I had to give up my wife). This moment was not about the fact that Michael J Fox joined him, it was about his determination to finish and that people were there to support him, whether they were famous or not.
I know this feel good feeling will diminish over time, but not by much. It will lift me up when I am down. It will remind me if I think I can, then I can (think/able). I hope it will do the same for you. I can always go to the website and watch for a couple of minutes and be right back there.
Oh I forgot to mention John and Mike have Parkinson’s.
Last but not least, the big reveal- I will NOT be running in next year’s race- these guys and girls are crazy!