Category Archives: care partners

10 years in, reflections and re-dedication

dadIn a little over a month, I will celebrate the tenth anniversary of my diagnosis of Parkinson’s. Ten years ago, I was working and Cecily was not, and both of our girls were still in college. I was healthy or at least I thought I was, and I was fully engaged in the pursuit of the American dream. Then the doctor’s visit where I heard “You have Parkinson’s disease “which shifted my reality. With Cecily’s help, I was able to adjust to this new chapter of my life.

Parkinson’s has given me an endless task of pills and physical challenges. I am not complaining. I am fortunate that the disease is progressing slowly, but we can’t stop the march of time.

Parkinson’s has also given us a new community that participates in our journey. This community consists of a number of entities. First and foremost of which is a stronger family unit. The Harmon “Wonder Women” have shared the good, bad and the ugly. They are the foundation of our journey with PD.

Second is our friends, new or old. Without them, we are an empty shell. Thirdly is our TeamFox family. They make me laugh and they make me cry with their extraordinary feats and accomplishments. When we meet old Foxes or new ones, there is an instant bonding and understanding. The PD Warriors, whether part of TeamFox or not, make up a strong brotherhood of support and love that makes this journey much easier. Their focus is not on how many times they fall, but how many times they get back up.

So, my time with Parkinson’s has passed quickly. We have not found the cure, yet. We are moving forward. A number of promising research projects are in trials that may relieve symptoms and be almost as good as a cure. But that is not enough. We have lost too many of our fellow warriors, with the passage of time.

Recently, our family joined TeamFox in a 10K at the Disney Marathon weekend. When I crossed the finish line, I reflected on friends who have passed away with PD this year. I realized we are not doing enough. TIME IS OUR ENEMY!

THE TIME IS NOW TO RE-DEDICATE MYSELF TO FINDING A CURE. PLEASE JOIN ME. LET’S END THIS DISEASE.

TWO SHOES ON AGAIN (not running kicks)

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Let me tell you a little story about my Mom

1519599_698695746830758_1959666373_oA little while ago, The Michael J. Fox Foundation asked me to interview my Mom for a newsletter about the PPMI study that she’s involved in.

They wanted the personal touch of a mother and daughter talking about why my mother is so awesome and involved. (OK, so maybe the author is biased. Just a tad.)

In the end, I wrote a novel, so only a small part appeared in the newsletter. See the whole piece below.

Fall 2014 Newsletter
Continue reading Let me tell you a little story about my Mom

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.

Apathy the silent killer

I know that apathy is typical in PD patients. It has always driven me crazy when I see my fellow journiers (I made this word up, but it works for me) not being aggressive or active in pushing the beast back. Last week, I told Cecily that I was “losing traction” on our sponsor relationships for our fifth golf tournament. She reminded me of the great year we had in 2013 and we don’t always have to be better. It sounded un- American. Don’t we always strive to do better?

So I sat on my ass for a day and reflected. I came away conflicted but directed. From a fundraising standpoint, I am comfortable in knowing the generosity universe in a small community has a limit. Re-energized I caught up on my tournament timeline. Some pluses, some minuses … but every contribution regardless of historical numbers means so much. So to all of us on the money train of charitable efforts,  DO YOUR BEST AND FORGET THE BUDGET AND HAVE FUN.

From the health side, (apathy or even depression) not every day is “fantastic,” but is a day to make the best out of. Actually every day should be fantastic, because we are blessed to have it and there are not promises for tomorrow. Do we feel good everyday? No. But it is like golf. It is not how good your best shot is, it is how much good you can do with a bad shot.

So if you find me sitting on my ass and apathetic, kick me in the ass. Just don’ t kick my foot because it may be already on the way to my own ass. For anyone out there who loses their drive to take the best out of what we have, take heart. You are not alone. Together we will move forward.

TWO SHOES ON AGAIN, as soon as I can get it out of my ass.

A very special Christmas gift

It was really hard for me to contain myself this year when it came to a Christmas gift for Dad. I came up with the idea of making a book full of photos of his (our) Parkinson’s journey.

I reached out to a handful of our closest Team Fox friends to add their words of what Dad means to them.

Needless to say, it was a giant hit.

Dad spends so much time doing things for others and making sure they aren’t down. I wanted to do everything I could to show him that he isn’t alone either. That all of these people are ready and able to help pick him up when he’s feeling down, too.

Best gift ever. Take a peek.

Click here to view this photo book larger

Click here to create your own Shutterfly photo book.

More Parkinson’s work to be done

Libbe and Kim Erickson at the 2013 World Parkinson's Congress.
Libbe and Kim Erickson at the 2013 World Parkinson’s Congress.

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.”

Continue reading More Parkinson’s work to be done

Meet Roy and Lynn Roden

Lynn and Roy Roden biked across the country in the PD Challenge.
Lynn and Roy Roden biked across the country in the PD Challenge.

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

A lesson on caregiving and dementia: It ain’t for wusses

While home last week for Dad’s golf tournament, I got to attend the monthly support group. The speaker was Gary Joseph LeBlanc, who talks and writes about caregiving and dementia.

Dad was worried that not a lot of people would attend, but dementia with Parkinson’s is common in 30-40 percent of patients, and it’s not something fun to talk about.

But the room was packed for Gary as he talked about caring for his own father for years as he battled Alzheimer’s.

Here are some tips Gary mentioned that I thought were worth passing along as you become someone’s caregiver.

Continue reading A lesson on caregiving and dementia: It ain’t for wusses

Need a helping hand? Finding Parkinson’s support

Having someone to lean on in life is important. And having someone to support you through a struggle, like Parkinson’s disease, is even more important.

One of the most important things I’ve seen Dad doing over the years (and what I’ve tried to do on my own) is making people know they are not alone. It’s something he says to people when he meets them. When he talks to them on a regular basis.It’s what I see people in Parkinson’s groups on Facebook remind each other often.  It’s something I’ve told people I’ve never even met on Twitter when I see them struggling.

You are never alone. Especially when it comes to Parkinson’s.

Continue reading Need a helping hand? Finding Parkinson’s support

Learning time management: What are my priorities when it comes to Parkinson’s?

From Flickr. By ToniVC
From Flickr. By ToniVC

I had a number of people share a webcast, which included Israel Roberto (a Facebook friend), talking about the power of advocacy. We have a political advocacy group working for the Parkinson’s community called PAN (Parkinson’s Action Network). The thrust of the presentation is to get involved because the politicians hear you and it really matters. Well I drank the Kool-Aid and told Cecily that this was something I needed to add to my plate.

That sparked a moderately long discussion about time management and “You only can do so much.” The timing was really appropriate because I am in tournament mode trying to go through all of the details of organizing a fundraising event. I finished our April, 2012 event, with the final collection and transfer of money to the Michael J Fox Foundation in December 2012. So, I figured that I had almost two weeks to decompress before beginning the frenzied journey of the next event. I know from watching TeamFox members John Ryan and Karen Jaffe to name a few, that I am not the only one who has this issue.

Continue reading Learning time management: What are my priorities when it comes to Parkinson’s?