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

The Difference Between WELLness and Illness is I and WE

January 13th, 2014 by Our Team

Nancy Mazonson, Director of Parkinson’s Family Support Program at Jewish Family & Children’s Services of Greater Boston shares her experience of working with people living with Parkinson’s disease on a daily basis and participating in the Parkinson’s Unity Walk.
Helaine Isaacs
Event Director

“The difference between Illness and WELLness is I and WE.”
Swami Satchidananda as quoted by Dr. Dean Ornish, TED Conference, 2006 and repeated by Bob Kuhn, Opening Ceremony, 2013 World Parkinson Congress

circle hand holdingI experience the sense of WELLness that can only come from WE – from joining with others – every single day in my role as Director of Parkinson’s Family Support at Jewish Family & Children’s Service of Greater Boston. By offering Parkinson’s Dance, Tremble Clef choral singing, support and education groups for people with Parkinson’s disease (PD), care partners and adult children as well as information and referral help, I have the privilege of making it possible for people with PD and their care partners to share and connect deeply with others. Our focus is on finding better ways to live well with PD while we wait for a cure. I know for sure that although the Parkinson’s journey can be very challenging, the power of community and the focus on the creative arts can be a healing gift. As one of our dancers said, “This is a caring community filled with camaraderie. Sharing dancing and sharing knowledge with others is good for the soul. It’s so much better than going it alone.”

 

Nancy Mazonson at 2013 PUW

On a sunny April day in 2013, the message of WE truly echoed through Central Park. As a first time walker in the 19th Annual Parkinson’s Unity Walk; as the daughter and niece of men who battled Parkinson’s; and as a professional in the PD world; the energy and connection of the day lifted my spirits. The huge crowd that gathered for the Walk wore everything from matching team t-shirts with a beloved grandpa’s hand print to wacky Viking regalia. Some walked confidently, while others walked haltingly and doggedly – and some rolled along with walkers, wheelchairs or strollers. It was a diverse community all focused on a shared effort to raise awareness and funds for PD research. For those few precious hours in New York, the Parkinson’s Unity Walk offered people who care about Parkinson’s the opportunity to experience the sense of WELLness that can only come from WE – from joining with others.

Please join me in April in Central Park. Hope to see you there!

Nancy Mazonson
Director of Parkinson’s Family Support
Jewish Family & Children’s Services of Greater Boston

Happy Holidays!!

December 18th, 2013 by Our Team

PUW-holiday2013_rIt’s the time of year when we take a moment to reflect on the year that’s gone by, appreciate our relationships, and express our gratitude to those who supported us throughout the year. As we at the Parkinson’s Unity Walk reflect on our year, our thoughts turn to all the walkers and donors who support the Unity Walk. We value your commitment to funding research to fight Parkinson’s disease and find inspiration in the caring and love for one another that we witness at the Walk.

We hope you get a chance to enjoy time with family and friends, and appreciate the joys of the season. Wishing you a happy holiday and all the best for 2014!

Warm regards,
Helaine_signatureblog
Event Director

Mark Your Calendar for the 20th Parkinson’s Unity Walk – April 26, 2014!

December 2nd, 2013 by Our Team

PUW_logo-2012-withURL

Mark your calendars! April 26, 2014 has just been confirmed for the 20th Parkinson’s Unity Walk. The planning for the Walk began months ago, many walkers have already registered, and several fundraisers have already been held.

We know some of you have been waiting to register until the date is announced so WAIT NO MOREregister today and create your team! If you’re coming from out of town, check our website for hotel rooms at reduced rates. Log into “My HQ” and get started with your fundraising. The year-end holidays are a perfect time to reach out to your family and friends.

Please join us in making every step count at the largest grassroots Parkinson’s fundraiser in the country. Our walkers all have some personal connection to the Parkinson’s community and tell us that they experience a sense of empowerment by participating in the Walk and by raising funds for research.  If you’re new to the Parkinson’s community, please join us so you can share that experience first-hand. If you’re a returning walker, we thank you for your continued support and commitment to this cause.

Want to get a better sense of why people participate in the Unity Walk? Our Parkinson’s CHAMPs will give you a glimpse into some of those reasons.

We’ll be sharing more fundraising ideas and Walk details with you in the months to come. Have questions about fundraising or Walk details? Feel free to call our office at 866-789-9255.

Helaine Isaacs
PUW Event Director