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.
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 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.
As a journalist, I often find myself in the tough situation of deciding what causes and stories are more important — especially during the holiday season.
There are requests everywhere for donations and help — from Toys for Tots, to my work Christmas Emergency Fund, United Way, food banks, even the Michael J Fox Foundation and so many more. Everyone has causes near and dear to their hearts, and it’s hard every day — but even more so during the holidays — to find the time and money to help out as much as you can.
As an editor, there are a lot of stories that we just don’t have the time or resources to tell. I was truly reminded of that this past week visiting home.
Dad is obviously really involved in a lot of efforts around Winter Haven, not just Parkinson’s research and awareness. He and Emily have often volunteered time and money to the local Toys for Tots. While at home, Dad and I swung by the local Toys for Tots location to see what the Lake Ashton community should do with the $2,000 it raised for them. The site was almost unbearable.
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!
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.”
We have taken a break from fundraising for a brief period, but that doesn’t mean we are just sitting around. On Sept. 26, Michael J Fox is returning to television since leaving Spin City in 2000, with a full time comedy show on NBC. The show is called the Michael J Fox show with the main character “Mike” as a retired newsman who has Parkinson’s (what a natural fit). The Fox Foundation asked us and a lot of other supporters to host a premiere party to commemorate the beginning of the show.
So Cecily and I are hosting a party for up to 80 people to watch the show. Normally, I would have my fundraising hat on, but for this event we are focusing on Michael’s return to the profession he loves. In a recent interview, he disclosed that his doctor told him he would have 10 good years (sounds familiar) to continue acting. That was 20 years ago. The tagline for all of the premiere parties is think/able. The foundations party package that we received has the following quote “Michaels’ return to TV is an important reminder that when you focus on what’s possible and think/able, you can achieve greatness.” So for our event we are going to focus on think/able and the power of optimism.
For those who know me, you already know an event with optimism and positive thinking is as simple as Michael playing a character with Parkinson’s. If you focus on the positive, you are freed up from the baggage that negativity brings. We will have a fun night laughing and learning/teaching with our friends. I have seen some of the trailers about the show and it is very funny. I know that I, as well as the other hosts, will probably be laughing the most because we will see ourselves in some of the scenes.
So join all of us on Sept. 26 and watch the premiere of the Michael J Fox show. On Twitter, use the #ThinkAble to share what you can achieve when you focus on what’s possible.
Remember every day can be FANTASTIC if you truly believe it can be , and you make it that way.