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.

Where have we been?

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.

Let me catch you up with what’s been happening.

Meet the Vanek family: Emily, Sherri, Ben and Michael
Meet the Vanek family: Emily, Sherri, Ben and Michael

Recently, I had the honor of interview the Vanek family for the Michael J Fox Foundation’s blog. The dad, Michael, has PD and is participating in every trial he can. It was seriously one of my favorite, if not my absolute favorite story I’ve written for the blog. Why? Honestly, I’m not sure. But I think it has to do with the innocence of the children in the 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.
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Spread the word! It’s almost time

We’re a month away from the 5th Annual Golf For the Cure for Parkinson’s Disease! 

Check out the press release I typed up for local media, and head over to Dad’s Team Fox page if you’d like to donate. 

It could have been easy in 2006 for Winter Haven resident Bob Harmon to let a diagnosis of Parkinson’s disease consume him. Instead, it did not only the opposite for him, but for his family and many in the Lake Ashton community.

 

It started as a tremor in his pinky finger in 2004,  that turned into trouble eating cereal without spilling. Then his gait changed. After seeing a neurologist, it was confirmed, Parkinson’s. On his way back to work, he called his wife, Cecily, who said “Thank God it’s not something that will kill you in 90 days.” Not only has it not killed him, but it’s inspired him to mentor others, start a support group and raise more than $150,000 so far for the Michael J Fox Foundation.

 

In doing so, Harmon has spread the word of the disease known by many to affect old the elderly and some famous people Muhammad Ali and Michael J Fox. In 2009, Harmon held the first Golf for the Cure for Parkinson’s Disease in the Lake Ashton community. More than 200 golfers mostly from inside the community packed the two golf courses for a day of golf followed by a luncheon and auction. It became a packed, annual event and in its fourth year, the community helped Harmon raise more than $50,000 for the cure. In 2013, the tournament was in the top 20 fundraisers for Team Fox, the grassroots fundraising arm of the Michael J Fox Foundation.

 

This year’s tournament — the 5th Annual Golf For The Cure For Parkinson’s Disease — will be held Saturday, April 5 at 8:30 a.m.

 

Along with his fundraising efforts, Harmon created and facilitates the Lake Ashton Outreach/Support Group and Parkinson’s Cure Research Funding, his own nonprofit. The support group, which he runs with the help of his wife, is open to the general public to provide support to Parkinson’s patients and their care partners. The group meets on the first Friday of the month. Bob and Cecily are also involved in clinical trials, which they found through Fox Trial Finder, the Michael J Fox Foundation’s online clinical trials matching tool. Their twin daughters, Emily and Kate, are also signed up. Emily and Kate also raise money for other Parkinson’s efforts, and Kate writes for the Michael J Fox Foundation.

 

This year’s tournament will prove to again be a labor of love and hope as the Harmons, the Lake Ashton community and their friends come together to help raise money as they joke on the course. Bob has said he’s not sure a cure will come in his lifetime, but his efforts and those of the Winter Haven-Lakeland community will be a part of bringing that cure to those just like him.