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Beating Parkinson’s Disease One Step at a Time from Walking the Dog to the NYC Marathon

February 25th, 2014 by Guest Blogger

I first met John Ryan on the plaza of the Today Show the morning before the Unity Walk in 2011. He joined our group along with his daughter and brother to help promote the Walk. John has not stopped raising awareness and funds for Parkinson’s research since then and more recently, he hasn’t stopped running. Each person’s path along their Parkinson’s journey is different. John has found the one that is working for him.
Helaine Isaacs
PUW Event Director

JR CelebratesI was diagnosed with Young Onset Parkinson’s disease in the spring of 2010 after noticing symptoms that affected my motor skills on the right side of my body. It took some time to digest this news. After about six months, I took my first steps to taking back control of my life from this disease. I participated in the 2011 Parkinson’s Unity Walk to meet others in the Parkinson’s community, as well as try to get more information about treatments and research. It was at the Team Parkinson booth that I met John and Edna Ball. I told them I had been recently diagnosed and they asked me “What exercise are you currently doing?” My reply – “I walk the dog twice a day.” To which, they smiled and shook their heads. “If you are going to stay healthy and control this disease, you need to do vigorous exercise and sweat a lot!” I took that advice to heart and began jogging short distances the next weekend and have not slowed down since.

I was never an athletic individual but not really out of shape. As I began running, I realized that my body, which had become so stiff with muscle rigidity, was actually becoming loose again and my tremors were reduced. Running was becoming the best medicine for what ailed me! So I figured the longer I run, the better I would feel. I entered my first 5K (3.1 miles) race that summer and although it wasn’t the prettiest run……. I finished!!!  And I enjoyed it! I continued to run in local 5K races in my community and joined Team Fox, the fundraising arm of The Michael J. Fox Foundation for Parkinson’s Research.

Team Fox Rocks 5Team Fox and my friends in the Parkinson’s community have inspired me to push harder and go farther. In 2012 and 2013, I was inspired enough to register for the New York City Half Marathon (13.2 miles). For me, this was the epitome of my journey! I had gone the distance twice, raised thousands of dollars for research, and had created awareness for Parkinson’s  disease through various media and social media outlets. I had accomplished what I had wanted to do with this activity. That was until my running partner asked me the inevitable question, “Why stop here???  Go for the marathon!!!”  At that point, the challenge was issued on a feat that I never thought was possible, for I was not a runner. But now I realize that I AM a runner and a fighter!!!
John Ryan photo no MJFF logo
I began training for the 2013 NYC Marathon (26.2 miles) this past May (six months prior to the race). The support I received from fellow runners and the PD community over that six month period was overwhelming and heartfelt. I decided to run the entire race together with a group of friends that we called “The Team Fox 5.” We made a pact – we start this race together and we finish this race together; we do this as a team to finish Parkinson’s disease. It was truly an amazing day that I will cherish for my entire life. The funny thing I realized when I finished was that it was more emotionally draining for me than physically draining. The love and support I received from friends, family, and the cheering people of NYC along the marathon route inspired me to carry on to the finish.

Michael J. Fox has a quote that I say as I begin each day, “We only can’t, if we don’t.”  Go out there and be an active participant in your life!!! Running a marathon is not for everybody but if there is something you have always wanted to accomplish – go out there and do it. Do not let the beast known as Parkinson’s guide your destiny in life. Go out there and be active – active in your physical and mental activity and active for the Parkinson’s community.  We can change the course of this disease for the millions if we all put some skin in the game. Become an active agent for change by getting involved in one way or another.

John Ryan
Team Captain, Team Ryan’s Hope

Put the FUN in FUNdraiser

February 21st, 2014 by Helaine I., Event Director

(February 21, 2014) – I am always impressed with the positive energy behind the fundraisers created by our walkers and teams. In addition to the tried and true method of reaching out to friends and family for donations, many of our walkers decide to mobilize their supporters at an event that raises awareness and funds for research. We highlight these events on our Parkinson’s CHAMP in Action page, to acknowledge their efforts and in the hope that one of the ideas will inspire someone else to create a fundraiser of their own. Restaurant “give back” nights, bar crawls, pancake breakfasts, zumbathons, local 5Ks, bowl-a-thons, and fashion shows are just some examples of how Unity Walkers are raising funds for research. The Unity Walk is just over two months away. There’s still time to plan a fundraiser for this year.

Looking for inspiration? Look no further than Debbie Flamini’s Volley for a Cure held last night at the Hartford School in Mount Laurel, NJ to raise funds for Debbie’s team, Debina’s Dream. I had the privilege of attending and experiencing first-hand, the support of the entire school for Debbie and this cause. I could barely find a parking space when I arrived which I took as a good sign about attendance. The spirit hit me the minute I walked in the door and was greeted with a warm welcome by several Hartford School students. Debbie was in the school lobby being interviewed by the local CBS cameraman and the story aired on the 11pm news. There was a carnival before the volleyball games and food was for sale before and after. Everything was donated so there were no expenses. It was the 5th grade vs. the 6th grade staff on the volleyball court. Both teams rocked but the 5th grade staff prevailed. The bleachers were filled and the teams were cheered on by parents, students and staff. The final tally isn’t in yet but so far, over $6,000 has been raised.
photo 2photo 3

The fundraiser created by Debbie and the Hartford School is just one example of the many amazing efforts put forth by our walkers and represents the best of the Unity Walk – Debbie’s resilience and positive attitude, her determination to fight this disease and work towards a cure, and the support of those who care about her. Never underestimate the power of community. It was palpable at last night’s event.

I wish I could personally attend each and every fundraiser held on behalf of the Unity Walk but most are not in such close proximity to our office. Even without being there, I know that what these fundraisers all have in common is the sense of commitment and community that is created when people gather for this cause in support of a person they care about. To paraphrase the famous line from Kevin Costner’s movie, Field of Dreams, “Build it and they will come.” Create your fundraiser and you’ll be amazed at the outpouring of support you’ll receive.

Once you decide on your fundraiser, let us know the details and we will post the information on our community calendar and with your permission, on our social media sites. Once the event has passed, complete this form and send us photos and we’ll share your experience on our Parkinson’s CHAMP in Action page.

Have questions or need some guidance? We’re only a phone call and email away. We wish you every success with your fundraising!

Helaine Isaacs
PUW Event Director

A Message From Tricia Cole, Team Captain of the 2013 PUW Top Rookie Team

February 18th, 2014 by Guest Blogger

TeamColeBannerWebwithdate

I discovered the Unity Walk in 2012 when looking for a way to get involved in spreading awareness and fundraising for Parkinson’s research. Immediately I knew it was an event that I would love to participate in and I registered for the first time. I soon found, however, that actually reaching out to my friends, family, and coworkers to explain why this cause means so much to me was personal and harder to articulate than I expected. In 2012, I registered alone and didn’t raise any money. As soon as the event was over, I saw all of the pictures online and promised myself I would take the plunge the following year.

In 2013 I signed up again but this time I created a team. I was determined to tell my friends about the Walk and raise $5,000, which I felt was a lofty goal especially considering I had raised $0 the year before. I started by sending one email to my closest friends and another to my family. I felt very empowered by their responses. Some friends donated, some registered to walk, some did both, and some even started fundraising on their own for my team. Before I knew it, I was using the Team Captain Fundraising Guide, and the Social Media fundraising tools on the Unity Walk site to share our progress with all of my friends on Facebook/Twitter. I even mentioned the Walk at work and a colleague who I had never known was very invested in the cause wanted to participate and sent my team link around to a few of her friends.

A couple of weeks before the Walk when I realized that my family was flying up from Florida, we had over 30 walkers, we had raised almost $15,000… I figured that we should make it official with a team shirt. Key word being we, plural. I was completely humbled and overwhelmed by how many people were not only willing but eager to help, support, and contribute to our team. With all that support, we achieved the distinction of being the top Rookie team and will have the honor of leading off this year’s Walk. Here comes 2014 and our goal is to raise even more this year to support Parkinson’s disease research.

One of the new teams will be the top Rookie team for 2014 and will get to lead off the 2015 Walk. You never know – it might be you! I wish all team captains, especially the new ones, every success with your fundraising efforts.

Tricia Cole
Team Captain, Team Cole

Advocacy Through Parkinson’s Action Network

February 10th, 2014 by Guest Blogger

 

Joe #4Joe Narciso #2                   I am a 45 year old father of three. I have had Parkinson’s for over a decade and probably started seeing symptoms five or six years before that. Even after being diagnosed, I tried my best to stay in the closet. This was done more out of necessity than vanity. You see, I was, I am an actor.

I made my living as an actor for 16 years, and eight years after diagnosis. As I do not enjoy the same level of fame and celebrity as Michael J. Fox, I feared that once I was “out” my opportunities to work would be severely hindered. So, for the first few years I did very little to promote awareness and even less in terms of advocacy.

My wife, Charlene did a lot of research and we donated to various organizations, but we never went to anything or actively participated in any way. When we first heard of the Unity Walk, we loved the concept. One day, one event, to support all the major Parkinson’s foundations. Once at the Walk, we had a wonderful day. It was the first time I felt like I wasn’t alone in my battle. I wanted to do more. I wanted to participate in a meaningful way.

At the Walk we met representatives from many notable Parkinson’s organizations. All of them do important work. All have noble missions. Awareness. Patient support. Research. But one stood out, to me. They had a unique charter: Advocacy.

The Parkinson’s Action Network. PAN.

PAN’s primary mission since its founding in 1991 has been to provide an informed, organized, and effective voice in public policy issues affecting the search for a cure for Parkinson’s disease. Basically, what this means, is that PAN lobbies on behalf of the Parkinson’s disease community.

PAN allows patients, caregivers, doctors, researchers and others to become advocates. Advocates then descend on Capitol Hill and meet with members of Congress and Senators to secure funding, affect change, and put a face on this insidious disease.

It is quite humbling sitting with a United States Senator and telling them your personal story. There is also an incredible feeling of purpose, power and pride as well. I feel like I am doing something that I would not otherwise have an opportunity to do: speak face to face with the people who truly are decision makers. I know that what we do with PAN is important, tangible and real. And I know we are making a difference.

Today, I serve as an Assistant State Director of New Jersey for PAN. There are monthly tasks for all of the grassroots leaders to accomplish – from contacting our legislators with asks for specific budgetary and policy issues that affect the Parkinson’s community, to attending support groups to help keep them aware of PAN’s advocacy efforts, to staying involved in social media, and keeping up to date on the issues that are important to all of us.

I am proud and honored to be a small part of PAN. To get involved visit www.parkinsonsaction.org.

Joe Narciso
JOE TEAM!

Joe #3PAN Hill Day 2013 with Congressman Robert Andrews

Creative Ways to Fight Parkinson’s Disease

January 28th, 2014 by Our Team

Winter's soft lightBettina Chavanne has participated in the Unity Walk since 2007 and we enjoy seeing her photos on her blog. We know that photography brings her much pleasure in spite of some of the challenges associated with taking photos if you are living with Parkinson’s disease, and helps her relieve stress. We asked Bettina to share her experience and her photos. Click here if you’d like to see more of Bettina’s photos.
Helaine Isaacs
PUW Event Director

For many years, I imagined Parkinson’s as a thief, sneaking into my house and taking one more precious item every night. Eventually, I came to see the disease in a less sinister light, more as a sloppy roommate than a cat burglar. You remember the friend in college who would wear your clothes without asking?* The one who “borrowed” your favorite necklace and then “forgot” to give it back? That’s what Parkinson’s does – it borrows all the things I love and messes them up a little bit.

My creativity is my stress-reliever. Which is what made my right-side tremor a bitter pill to swallow. How was I supposed to write? Hold a camera? Play the piano? I realized I just had to wait for my time. I had to wait for those moments when Parkinson’s returned my stuff. Even if only for a moment.

ParisLouvre1Photography has proven to be the creative outlet over which I have the most control. The heavier my camera, the steadier my hand. (That’s also a great excuse to buy really big lenses.) I also developed a not-at-all patented maneuver where I swing my camera over my left shoulder and perch it there to stabilize it. In very wiggly moments, I use a tripod and a remote trigger. Looking at the world with an eye toward capturing it in a single image is a strangely calming pursuit. Taking pictures quiets me, quiets my body and my mind. I still love to sit at the piano and play my heart out, but when my forearm muscles get too tired from fighting the tremor and my notes get all muddy, I can still go take pictures.

Landscapes are my favorite to shoot, although architecture and machinery run a close second. No matter how many times you snap a picture of a particular lake or hill, it won’t ever look the same. I love the mutable quality of our natural surroundings. I love the vast and peaceful emptiness of certain landscapes. Abandoned buildings and machinery (bridges, rusted tractors, airplanes) are just as magical for me – all rusted edges and unusual, imperfect shapes. I get lost when I’m taking pictures, which means I get to forget for a while about how I’m feeling physically.

Manassas Air ShowParkinson’s will continue to borrow parts of me without asking permission, but I will continue to keep the best parts for myself.

For those of you fellow Parkinson’s folks interested in pursuing photography as a hobby, a few words of advice: 1. Make sure all of your lenses are fast (f2.8 or f1.4) and coded IS, for “image stabilizing.” 2. Shooting pictures with your iPhone is an exercise in futility. Unless you manage to master the “image burst” function, which lets you fire off dozens of shots at once.  3. Auto-focus is your friend.

*An important caveat to this blog: My college roommate is a delightful woman and a very close friend. And she never borrowed anything without asking (particularly since she and I had such different taste in clothes that she would never have been caught dead in one of my argyle sweaters).

Bettina Chavanne
Team Captain, Team Bettina