Archive for the ‘What you CAN do’ Category

Today Show 4.25.14 – Be There!!

Monday, April 21st, 2014

What are you doing early in the morning on Friday, April 25th? I know where I’ll be – on the plaza at the Today Show – and I hope you’ll join me and other participants from the Unity Walk.

We will be meeting in a new location this year! You creatures of habit – pay attention! We have a new connection at the Today Show so we don’t need to wait on line to enter the plaza of the Today Show. Instead, we will gather between 5:30-6:00am in front of the main entrance to 30 Rockefeller Plaza. That’s the building that the Christmas tree is in front of in the winter. Rockefeller Plaza runs between 49th and 50th Streets and is parallel to and in between Fifth and Sixth Avenues. We will be escorted onto the plaza at 6:00am and placed in a location that will give us the most visibility during the Today Show. If you need me to reach me that morning, call me on my cell 609-651-9155.

Today Show 30-rock2-MeetHere

I used to arrive early when it’s still dark and hold a place on line for our group. I’m often the first person on line and I’ve met some incredible people while standing on line at that hour. Last year, there was a group of high school students from West Virginia who were visiting NY for the first time. They were completely ripped off by their NY cab driver, who charged each person the fare on the meter but that didn’t faze them. When they found out about the Walk, several of the students spontaneously gave me cash donations. The year before there was the 80 year old woman who drove in with her daughters from PA to celebrate her 80th birthday with the hope of being chosen for a makeover. I am convinced that it was the support from the Unity Walk crowd that got her selected and she looked amazing!

All those wonderful folks pale in comparison to the folks who show up in support of the Unity Walk. There are often several regulars – Team Cantore, Daddy and his Dopamines and the DominACHINs are in that group – but I always get to meet some new walkers and teams that I wouldn’t have crossed paths with otherwise and that’s what I enjoy most about the day.

photo from Helaine

We hope for our one minute of glory when Al Roker or one of his colleagues come out to the plaza, our signs held high and t-shirts worn proudly. We’ve been lucky the past several years and Al’s come over to speak to us. We hope you can join us in person. If you’re watching from home, use our hashtag #puw2014 and let us know you’re with us in spirit.

Helaine Isaacs
PUW Event Director

 

 

Credit Melanie Ahron IMG-20130426-00844 photo from Helaine 3

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

Yoga and Parkinson’s: A Healing Path for Every Side

Tuesday, March 25th, 2014

We are sometimes asked “What is the best exercise for a person living with Parkinson’s disease?” The answer – the exercise you will actually do. For some people, it is yoga. I first met Renee Le Verrier several years ago at a Young Onset Parkinson’s Disease conference  in Providence, RI. I was amazed at how she transformed the room while leading a chair yoga class for people living with Parkinson’s disease. We are grateful to Renee for sharing the impact that yoga has had on her life and her Parkinson’s disease.

Renee Le Verrier, RYT, is a certified yoga teacher and author of Yoga for Movement Disorders:  Rebuilding Strength, Balance and Flexibility for Parkinson’s and Dystonia (book and DVD). She teaches at Massachusetts General Hospital’s Parkinson’s Yoga and Lecture Series, Whittier Rehabilitation Hospital’s stroke rehabilitation program. Renee also collaborates with the MA Chapter APDA and TriYoga Boston in offering a five-day certificate program for yoga teachers who want to learn how to work with students with Parkinson’s. For more information, please visit http://www.limyoga.com/.

Helaine Isaacs
PUW Event Director

DSC_2301I stumbled in to my first yoga class, literally, when I was in my 30s. I didn’t notice the half-step up and I entered the quiet space with an aayee, whoop, and oof. Embarrassed, I tugged my hoodie around my reddening face. Though my left side moved slowly and felt uncoordinated – the result of a childhood stroke – I’d never quite gotten used to the limp, the stumbles.

When I snuck a peek around the room, I discovered that no one seemed bothered by my noisy, clumsy interruption. A peacefulness lingered in the room.

The teacher led us through poses and I felt my body absorb both the movement and the calm around me. Sore muscles softened, my breathing had a rhythm to it. Even a bit of the residual hypertonia and imbalance in my left arm and leg released. I felt taller.

The biggest surprise came as I realized that my mind relaxed, too. All that brain chatter – mental to-do lists, a review of the morning’s appointments in my head, automatic self-correcting (those should’ves and could’ves, as in: should’ve seen that step) – hushed. Even the song lyric that had replayed itself over and over for the past three days was gone. Yoga had led my mind from planning ahead, thinking back, judging myself. It guided me to the only moment that there really is: the one happening now. I felt free.

mod1childMy Parkinson’s diagnosis occurred after a decade of practicing yoga. I’d started to stumble because my right side moved slowly and felt uncoordinated. Thoughts rushed into my brain: What will happen? How will I manage? Can someone please help me open this jar? I was 42 and I was running out of sides.

Parkinson’s provided plenty of opportunities to stumble and to worry about the future and yearn for what was.  Yoga helped ease the physical struggles by making me stronger and more flexible. It also calmed the emotional struggles because it continued to guide me along the path to the center within me.

I decided to spread the good word about yoga for Parkinson’s while I was attending physical therapy sessions early after my diagnosis. In that six-week program, I worked with therapists in the pool, socialized with fellow patients during lunch, attended counseling sessions. There was a bit of almost everything therapeutic. The one thing missing, I commented at one point, was yoga. As engaging as the rehab was, no one session linked body and mind, providing that freeing sense of well-being, of being in the moment.

I still remember the look the OT gave me when I said that. She gazed across the table, raised her eyebrows and with a dramatic blink, tilted her head and stared wide-eyed at me. What she said without saying a word was: What are you going to do about that? Can you think of anyone who knows yoga and knows what it’s like to live inside a movement disorder body? Um, I remember thinking. Me? Within the week, I had registered for teacher training. That was seven years, countless classes, and a published book ago.

When I stumbled into that first yoga class, I stumbled into something bigger than an approach to movement. I discovered that I do have another side. In addition to my left and my right, there is a healing, centering side: my inside.

Renee Le Verrier

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!!!
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