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.
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.
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.
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!
Stress is not a friend to those with Parkinson’s (much less anyone else). Everything I read seems to say that stress exacerbates symptoms. I know when I speak I develop an exaggerated tremor. This is unusual for me because my main symptoms are gait and stiffness related, with very little tremor manifestation.
I am finding that the stress can be either mental or physical. As we progressed through the preparations for and the actual event this year, I found myself confronted by a number of unexpected sources of stress. The first was my breaching a rule that I preach to all who are planning an event, START EARLY. I have done this before, so what new challenges could there be? I got a little complacent and kept singing our mantra “YOU’VE GOT THIS.” So I kept playing golf every chance I got, and knew I could always catch up.
Once again it was a beautiful day at the golf course. The sun was shining, with slight breeze and 240 neighbors and friends descended on both Lake Ashton golf courses. Signs were made, player scorecards were made, orange juice and doughnuts (breakfast of champions in retirement) were served, and all those tiny little details were attended to.
How did it get ready? Volunteers were the answer. Oh yeah and family helped a little. Actually Cecily and I returned from the doughnut run before 7 a.m. and picked up the trailer full of supplies and met everyone else at the pro shop.
I guess now is the time to give a shout out to Stephanie Paddock from The Michael J Fox Foundation. She was not just a pretty face, but she worked from beginning to end of the event doing everything we asked. She even lied to the golfers and told them how good I was at golf. I try to go around and hit a golf shot with each team. This year, my good shots used increased by 25%. (5 verses 4 out of 60 shots). Steph acted as my witness (therefore the liar claim). Continue reading 4th Annual Golf for the Cure for Parkinson’s Disease→
There is so much to talk about in the month of April, Parkinson’s awareness, our tournament results, new people we have met, old friends and new, the Michael J Fox MVP dinner and Kate’s first fundraiser. So instead of making this a super long post I will begin an April series of posts about Parkinson’s Awareness month and how the Harmons spent their month.
I want to start with the most rewarding event for me personally, Kate’s first fundraiser “Pints for Parkinson’s.” I know Kate has shared her thoughts and some of the results with you. All of that is so rewarding. But for me the most important part of it all was to watch and share her engagement in our journey. Yes, she is the driving force for the blog site. Yes, she and Emily and Cecily break their collective asses to make our golf event happen. Yes, all of the family have joined Fox Trial Finder. Yes, Emily and Kate share our journey with those at their workplaces, which have led to other people on this Parkinson’s journey knowing “THEY ARE NOT ALONE”. Yes, Kate and Emily are walking in the Parkinson’s Unity Walk on April 27 for Team Ryan’s Hope.
While Monday, April 15 was a dark day for many people, especially in Boston, it was one of the best days I’ve ever had. It was also a resounding reminder (much needed that day) that there is good in this world.
When everything is counted, Pints for Parkinson’s — my first fundraiser for the Parkinson’s Unity Walk — will bring in at least $2,000.
I am shocked, surprised, flabbergasted. And I find it hard to describe what that feels like.
It was a night that I will never forget, and that was even more special because of the surprise visit from my parents, and the planned visit of some Parkinson’s warriors who drove all the way from New Jersey just for a few beers.
I was out celebrating St. Patrick’s Day Sunday and chatting with a friend when the father of one my my friends walked up to me. It’s his mother that I’m hosting the Pints for Parkinson’s for, after she died recently after 30 years with Parkinson’s.
I stopped chatting with the friend to take a few minutes and thank him for letting me host the event in her honor, and asked how he was doing. We talked music and other things for the event, and he went on his way.
The other friend then turned to me and asked “How do you do it?”
I didn’t know what she was talking about and she added, “that. What you did right there.” All that stuff for Parkinson’s?
Maybe it was the few beers I had before then. Or maybe it was just the question. But I stood there for a second not really knowing how to answer.
I used to travel a lot for work. Suffice it to say I’ve had every bad experience in an airplane except a full blow crash (e.g. an aborted takeoff with fire). So when we were traveling to PA for the holiday, there was a rise in my stress level.
As many of you might know, I am somewhat of a control nut, so I was trying to make sure everything was totally in order. Well to my surprise on the day before our flight, I was checking my meds and found that I wouldn’t have enough Ropinirole ER for the trip. A quick call to the pharmacy should fix that. WRONG. Continue reading Traveling with Parkinson’s – a flight without meds→