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.
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
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!
Every time I interview someone for the Michael J. Fox Foundation blog, I find myself surprised that each time I’m talking to someone who is so passionate about life and the cause. I think I could say on behalf of my whole family that being involved in research, fundraising and the amazing Parkinson’s community is a daily blessing.
It’s something that really hit home for me in a recent interview with Kim and Libbe Erickson. Kim was diagnosed with Parkinson’s in 2010, and once he signed up for Fox Trial Finder and participated in a trial, he and his wife were approached by the Parkinson’s Disease Foundation to be Parkinson’s Advocates in Research (PAIR). They’ve been in seven trials since then and go to groups and events to spread the word about trials and research.
During the interview Libbe told me something that rang so true.
“We feel like being involved in research or promoting research… it’s like being able to harvest 10% of the placebo effect. It really can add some measure in your life. We don’t feel as much as a victim, i don’t feel like it changes your life as negatively as it could.”
Writing for the Michael J Fox Foundation has been a real learning experience for me. I mean that in a good way. It challenges all the things I’ve learned, and makes me feel like I’m not as sure in my footing.
It also makes me challenge the way I think.
As a reporter, I’m used to doing things the same way. I have no agenda (I swear!) as I interview people and tell a story. Writing for the Foundation, I’m trying to promote it. I’m trying to get people to care. I want them to read a story — like Roy Roden’s. I want them to believe like he believes, that we can be bigger and better than ourselves. And joining Fox Trial Finder is a way to do that.
I want them to read about Deb Faculak and see just how easy a trial could be. When her daughter sent her a link about Fox Trial Finder, all she had to do was log on and fill out a profile about herself. From there, she found a trial that suited her, and got to take a placebo in a dyskensia trial she really believes was the real deal. Now she just has to wait for the trial to be over to see if she can take the the drug.
But Deb’s point was that trials can be as easy as you want them to be. She did one where she had to keep a diary and travel back and forth to a doctor’s office for tests. She’s also done 23andMe, which is just a cheek swab.
During the course of the interview, Deb said to me: “The only way a drug is going to get on the market is if people are willing to take the time and be a guinea pig.”
Now, I loved the quote. I made it bold in the story, and I made it the headline. I didn’t think twice about it.
But Liz Joyce, who reads my stuff at the Foundation raised a flag that I would have never thought of. The word guinea pig.
It’s so interesting to me because I would have never thought about it. But I have to think like a person who might be on the fence about trials. It’s my job to try and get them to join the fight by telling them stories of other brave people. And if they’re worried about trials and what they entail, hearing the word guinea pig might scare them away.
In the end, I abbreviated the quote to : “The only way a drug is going to get on the market is if people are willing to take the time (and participate in a trial).”
Liz is also really good at taking what I write and adding in the lingo about Trial Finder and how easy the process is. It’s something I’m trying to learn to do on my own, but it still feels foreign to me sometimes. I’m not used to writing to get people to join in on something that might scare them. Nor am I used to writing to promote.
It’s a really fun experience that’s using what I am good at (or at least think I am good at) while pushing me out of my comfort zone. In the end, we all have the same goal: a cure for Parkinson’s. So I can feel a little uncomfortable as I navigate these new waters for now.
For 25 years, Roy got diagnosis after diagnosis, surgeries, and nothing worked. Nothing happened. The tremor remained. Five years ago, at the age of 50, doctors got it right: Parkinson’s. In that moment, Roy found relief. “I was so frustrated for so long without knowing what was wrong,” he said. But now he had a name. “Immediately I wanted to know what I could do. I wanted to have fun with it.”
Since then, life has taken a drastic turn. Roy laughs when he says he used to have it all: the Porsche, the penthouse, and Harley. And he sold it all and went on a ride with Parkinson’s. Continue reading Meet Roy and Lynn Roden→
I am really really excited about the following announcement, and I’d like to share it with you.
As of today, I will be guest blogging for the Michael J Fox Foundation! Wait, what?!
Ever since I’ve been an editor only, I’ve missing writing daily. I have a journal, but I’m bad about using it. Because to me, writing is about telling important stories and making a difference in your community, not just about expressing myself.
On top of that, I’m often nagged by the feeling that I should be doing more in the fight against Parkinson’s. It’s this weird, nagging feelings I have between events and fundraisers. It feels kind of like this:
This post comes to you from Sonya Paclob, one of my co-workers in York, Pa. She covered a Parkinson’s exercise group and I invited her to share her experience with you.
Every week at the York Daily Record, my job is to check into the weekly paper and pick a hyperlocal event to cover. The event was Parkinson’s exercise at a church which offered free exercises to patients and caregivers.
I talked to a Don Neiman on the phone who has Parkinson’s and also a volunteer instructor for the group. I went to the church. He greeted me with a delightful smile, he shook my hand and walked just fine for someone who has the disease for eight years.
He believes a combination of exercise and daily medications keeps the disease at bay. He still sometimes locks up and freezes on one side. I didn’t see that in him.
I have never experienced Parkinson’s before in my life. I did research about the disease, but I didn’t know what to expect at the group. All I knew at the time is people would shake uncontrollably. I didn’t want to be that person to assume or be ignorant about the situation. That is why I became a journalist. To learn and to also share what I learn with others. So, I met the people at the exercise group. Continue reading Guest post: A Parkinson’s exercise group and experiencing PD for the first time→