On April 2, PCRF hosted its 7th annual Golf for the Cure for Parkinson’s at Lake Ashton Club in Winter Haven, Florida. Despite thunder storms with heavy rain, the event was a bright spot for us during Parkinson’s Awareness month.
As always, the Lake Ashton community came together to support us and others on this Parkinson’s journey. TeamFox friends from around the state joined us and Sam Fox from the Foundation for our event.
This year was the first year I have fully allowed the entire Harmon family an equal say in event details and planning. Those who know the Harmon ladies won’t be surprised, when I say “I could not have done it without them.” In fact, I should have done it long ago.
This year we had a Marquis Partner, Family Elder Law from neighboring Lake Wales. In addition to expense and volunteer support, they agreed to match 10% of monies we raised for the Michael J Fox Foundation.
Due to the support and hard work of everyone, I am proud to announce that we raised over $48,000 – 100% of these monies will go directly to research by the Fox Foundation.
I curled up to watch the season premiere of Royal Pains the other night and the signs popped out at me.
Handwritting that gets smaller and smaller? That’s impossible, the character said. No. No, it’s not. Getting clumsier? Tremors? What does it mean? All of my Parkinson’s sensors went off.
And when the doctor, Hank, told the 20-something Aubrey — a reality TV star — that it seems likely that she’s in the early stages of Parkinson’s disease. Enter the sad, depressing music and a cut to commercial.
I was lying on my couch watching this, and as the commercial started, I actually sat up — feeling like the wind had been knocked out of me. And yet, while an understandable reaction, I felt mad at myself for feeling that way. It’s been nine years since that moment Dad sat me down on the back patio to tell me the news. It’s been nine years since I heard the word “Parkinson’s” and then couldn’t hear the rest. Or see through the tears. And it’s been a great nine years since thanks to my dad’s attitude and the family and cause we’ve found in the Michael J. Fox Foundation and Team Fox. Continue reading Parkinson’s makes a splash on USA’s Royal Pains→
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.
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.
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.
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.
Many of the people I know in the Parkinson’s community have this go-to attitude and optimism that a lot of people would find surprising. To me, it’s par for the course. We’ve been introduced to so many people who aren’t going to wait for a cure, they’re going to help find it. And with that, comes a willingness to bravely look PD in the face with a smile.
That said, I would guess that many of them struggle with bouts of depression. A lot of us do, whether we have PD or not. I’ve been having similar conversations with friends lately as they struggle, too, with the fact that they are the people others rely on to help build them up and make them smile. Those people sometimes don’t feel like they have anyone else to talk to. If you’re the one who needs to make others laugh and look at the bright side, it’s hard to admit you have your own demons.
It’s something I’ve been thinking about a lot since the news of Robin Williams’ death. Yes, he was a funny, funny man. But I honestly wasn’t surprised that behind that depression was lurking. A lot of people jumped on the bandwagon to blame his Parkinson’s diagnosis on his depression. His wife had said she wasn’t ready to tell people yet.
I don’t like writing about myself, but here’s the MJFF Fox Trial Finder blog about … me.
I used to think that the feeling that I wasn’t doing enough in the fight against Parkinson’s disease was just a neurosis of mine. As the daughter of a person with Parkinson’s, I help my dad with his annual golf tournament. I write for The Michael J. Fox Foundation’s FoxFeed blog, and run our family blog telling the stories of people with Parkinson’s. But I’m always plagued by this feeling that I should be somewhere else, doing more.
It’s a feeling I’ve come to realize isn’t just something I struggle with. Many of my Team Fox brothers and sisters (and my actual sister, Emily), are always willing and ready for the next thing we can do to help. When Fox Trial Finder, the Foundation’s online clinical trials matching tool launched, my entire family signed up. My mother has been enrolled in the Parkinson’s Progression Markers Initiativeclinical study looking for biomarkers for three years. And alerts from Fox Trial Finder would pop up in my email when new trials I was a good fit for were ready for volunteers. But I had a hard time finding something that fit. I would get dissuaded by the length of some trials, since I can’t be sure I’ll be living in this area for 5-7 years.