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!

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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.

Real talk on Parkinson’s, depression and Robin Williams

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. 

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The blogger becomes the subject

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.

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‘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.

Loss never gets easy

After the NYC Marathon: Jeff, Gene, Gwen and John.
After the NYC Marathon: Jeff, Gene, Gwen and John.

My heart really hurts today.

Gwen, a dear, Team Fox friend of mine has lost her father to Parkinson’s. I got word late last night and then I didn’t really sleep.

When our family joined Team Fox and I attended my first MVP dinner with Dad, Gwen was one of the first daughters of a Parkinson’s patient that I met. In her, I saw a more awesome version of myself. Her enthusiasm for finding a cure and her love of her father has pushed her to run, raise money and be a Team Fox mentor (which is how she met Dad).

The night at the MVP that I met Gwen and her father, he was really quiet. Gwen was her usual, excited and animated self saying hi to me and Dad, as she introduced her father to us. We all just talked to each other, about our efforts, our passions and her father didn’t say anything. But what I remember now, probably more so than I did then, was that he was in awe of being there that night. And in awe of his daughter. His daughter who would run a marathon, raise money, dedicate her life to a cause and move home just for him.

Gwen made the tough decision to move back to Texas to be with her family. It’s a decision I know will be tough and that I will do some day. But before she had the chance to officially make the move, he passed away.

I can’t imagine the pain that Gwen and her family are going through right now. And I think it hits me so hard because I know one day I will know that pain. I see what will be myself in Gwen’s loss.

Gwen, I am so sorry for your loss. Words cannot explain how sorry I am. I know that your father was so proud of you, I could see it in his eyes the first time I met him. You will always carry him in your heart and as we continue this fight against Parkinson’s together.

Because we are doing this together. All of us. None of us are alone. I just hope each of us gets the chance to say goodbye, and thank you. For all our loved ones do for us.

To my Dad: I love you. And I’m so proud of you each, and every day.