Archive for the ‘Guest Post’ Category

My Spiraling Road into the World of Advocacy for PD

Tuesday, April 8th, 2014

Myra Hirschhorn is a shining example of someone who has found multiple ways to serve as an advocate for Parkinson’s disease in her local community. We are grateful that she lives in New Jersey!

Helaine Isaacs
PUW Event Director

Myra Hirschhorn.pngParkinson’s disease (PD) has been in my life for as long as I can remember. As a child I watched my grandmother live with the complications. This was before the gold standard drug, Sinemet became available. The symptoms and complications were much quicker to surface and the prognosis for patients was much dimmer back then.

Fast forward to September, 1999. My husband, Stu noticed a tremor in his index finger. This led him to a movement disorder specialist and he was diagnosed with PD at the age of 53. This brought PD back into my life. Fortunately, Stu was able to continue to work for five more years. During that time I began attending the Parkinson’s Disease Support Group at Virtua Memorial Hospital in Mt. Holly, NJ. Through this support group I learned about various Parkinson’s organizations and conferences. These organizations and meetings made me aware of local resources and programs that were beneficial to me and my husband.

As I learned more, I became an advocate and found ways to provide education, resources and information to members of the Parkinson’s community.

Since 2009, I have been the facilitator of the Virtua Parkinson’s Disease Support Group. I offered to take on this role and have never regretted it. The members of this group are so supportive of one another. I’ve secured speakers on relevant topics, and provided information on current issues and upcoming events for the group.

Myra Hirschhorn 2I became involved with Parkinson’s Action Network (PAN) and am currently the NJ State Director of PAN. I’ve traveled to Washington, DC to attend the PAN Forum and have met with representatives of Congress to lobby on behalf of the Parkinson’s community.

A couple of years ago, Voorhees Senior Living, a local assisted living facility developed a PD Support Group. I assist the support group by sharing information on issues and events that may be of interest as well as helping to secure speakers. People in that area are very pleased to have a group available to them.

I was part of a group of people who worked to bring Dance for PD’s program to our area. I am thrilled that the Virtua Parkinson’s Movement Class has been in existence for a year now, with Stacey Macaluso as the talented and caring instructor.

Last year, I worked with the Willingboro Library to schedule periodic speakers at the library for people with Parkinson’s disease, their care partners and friends. In addition, the library now offers classes in Qi Gong and Delay the Disease for people with Parkinson’s as well as the general public.

At all of these venues and at senior expos, health fairs, freeholder meetings, and local Parkinson’s walks, I am “armed” with brochures and share information about the various Parkinson’s organizations. This raises attendees’ awareness of all the support that is available, provides opportunities to learn about living well with PD and how people living with PD can advocate for themselves.

Recently I attended an LSVT-BIG training for occupational therapists and physical therapists, with attendees from all over the world. I provided them with information they can in turn share with their clients. All of the PD organizations have been more than happy to provide me with information to share.

Returning to the Parkinson’s Unity Walk in Central Park each year is always a high point for my husband and me. It is empowering to see the thousands of people all gathered for this cause and to be able to touch base once again with all the organizations that provide so much support to the Parkinson’s community. The Unity Walk is the best source of information and inspiration for people with Parkinson’s disease and their loved ones.

We each need to find a way to make a difference. I encourage you to find opportunities to raise awareness and educate people in your own community about Parkinson’s disease.

Myra Hirschhorn
Team Captain, Stu’s Supporters

Ken Aidekman, PUW Co-founder reflects on the First Parkinson’s Unity Walk and its Meaning to the Parkinson’s Community

Tuesday, April 1st, 2014

To kick-off Parkinson’s Awareness month, we’ve asked Ken Aidekman, Co-founder of the Unity Walk to reflect on the first Walk in 1994 and how far we’ve come over the past twenty years. We are grateful to Margot for her vision and Ken’s commitment and support throughout the years.

Helaine Isaacs
PUW Event Director

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Twenty years ago, I witnessed 200 walkers come together in Riverside Park to raise $16,000 for Parkinson’s research. This year, over 10,000 walkers will gather and raise over 100 times more than we did at that first Parkinson’s Unity Walk!

I have seen the amazing things that a Parkinson’s grassroots effort can accomplish. I watched a small band of advocates succeed in raising awareness and funds for research in Washington. I saw Margot Zobel take a simple idea for a walk and turn it into a dynamic force for good. She sensed a vacuum in New York and turned it into an opportunity for people around the world. Her strength derived from her conviction that individuals have the power to change their lives through creative cooperation.

The energy that Margot brought to the Walk remains with us today. You can see it in the faces of family members who have traveled great distances to be here. You can hear it in the voices of people living with Parkinson’s who describe how it helps get them through the difficult the months ahead. And you can feel the love that goes into every t-shirt and sign supporting a grandparent, parent, spouse, child or friend.

What is it about this Walk? Joan Samuelson, the founder of the Parkinson’s Action Network, talked about it at the second Parkinson’s Unity Walk.

“I don’t know how many of you were in the same situation I was when I decided to come and people said “Are you going to walk?” and I said “No, I can’t walk that far.” Because often I can’t. And it was pretty nice for me to be with others in the same situation – who didn’t know if they could make it for sure the whole way.

One thing I knew was that it would be OK if I didn’t, which isn’t always true in the world we live in. We try to be equal to everyone else around us. We want to be able to do all the things that we used to do. It’s hard to give those things up. But, it was nice to walk today knowing that if at some point my foot started doing the crazy things it does or if I got tired that it would be OK. And that somehow, somebody in this crowd would make sure that I got here by the end.”

The Walk is about a day of faith, trust, friendship, love, commitment and empowerment. There are many individual teams at the Walk, but no matter what, we are all members of the same team – the team to end Parkinson’s disease.

Together, we take pride in our accomplishments in fostering community and funding research. We find inspiration in our growth and empowerment. But, there’s a long road ahead before we cross the finish line. We want nothing less than the total banishment of Parkinson’s disease from the human condition. Let our battle be remembered as a glorious triumph by those who believed that one person can make a difference.

Each step in Central Park brings us closer to our goal.

Join us on April 26th. We can’t wait to see you!

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Ken Aidekman
Co-founder, Parkinson’s Unity Walk

Advocacy through PDF’s Parkinson’s Advocates in Research Program

Tuesday, March 11th, 2014

Karen Smith PUW for blogReceiving a diagnosis of Parkinson’s disease was not what I was expecting when at the age of 42, I sat in the office of a neurologist. That day, I took the first step on a long unknown journey. My life was not over but life as I knew it was. For the first few years, I only shared the diagnosis with close friends and family. I didn’t want to be perceived as handicapped or “less than” in anyone eyes. I didn’t want sympathy so I erected walls around the Parkinson’s piece of me. If I didn’t take PD out of those walls, I didn’t have to examine it or contemplate what effect the disease would have.

Over the course of the last thirteen years, I’ve experienced many physical and cognitive changes. Muscles refuse to cooperate and my body’s movements grow difficult. My view of myself has changed also.  I don’t want to become my illness. I tell myself every day “You are still you.”

I’ve had to redefine my life and what brings meaning to it. I made up my mind to live the best life possible with Parkinson’s disease. I determined that a part of that life would include advocacy. I not only want a better future for myself but for all those living with Parkinson’s disease. I start with hope and fuel that hope with action.

Living in a mid-sized Midwestern town made my advocacy efforts somewhat difficult. My city did not have movement disorder specialists, research clinics or any conferences or symposiums. Then I heard about a program offered through the Parkinson’s Disease Foundation (PDF). The program is called Parkinson’s Advocates in Research or PAIR. The PAIR program works through patients to bring about better treatments at a faster pace. This is accomplished by ensuring that people with Parkinson’s and care partners are primary partners in research alongside scientists, industry and government. They are bringing together the people who live with Parkinson’s and the people who are developing new treatments.

Through in-person trainings and an online course, the PAIR program provides people touched by Parkinson’s with the knowledge and skills needed to pair up with scientists and healthcare professionals. By collaborating with research institutions, the PAIR program facilitates partnerships between Research Advocates and professionals at the frontlines of research.

The support PDF provides doesn’t end with the training. PDF staff works closely with advocates to identify advocacy opportunities, participate in ongoing education (webinars, conference calls), share resources, and network. Only people with Parkinson’s and care partners know what it’s like to live with Parkinson’s disease. It’s important that researchers hear what they have to say. For example, PDF Research Advocates can raise issues that are all too often overlooked, and help to identify and solve barriers to Parkinson’s research. Most importantly, the presence of Research Advocates reminds scientists of the urgency to find new treatments and a cure for Parkinson’s as soon as possible. With the training I received through PDF I was ready to begin my role as a research advocate.

To learn more about the PAIR program, visit the PDF website http://www.pdf.org/pair. With hope and action we CAN all make a difference!

Karen Smith
Team Member, PDF Pacers

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

Tuesday, February 25th, 2014

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!!!
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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

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

Tuesday, February 18th, 2014

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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