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Archive for the ‘Resources’ Category

Brooklyn Parkinson Group

Friday, November 4th, 2016

Support groups have a strong presence at the Unity Walk and Brooklyn Parkinson Group (BPG) leads the way. They have grown in size, spirit and offerings and convey the support that is derived from their group. Not all support groups offer the same breadth of classes but the sense of connection and community is available in all of them. We’ve invited Leonore Gordon, Team Captain of the Brooklyn Parkinson Group’s team at the Walk to share her experience of BPG.
Helaine Isaacs
PUW Event Director

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The actual home of Brooklyn Parkinson’s Group (BPG) has been, since 2001, in downtown Brooklyn, in a building owned by the world-renowned dancer/choreographer Mark Morris, who heads his own dance company and public dance-school, located up the block from the famed Brooklyn Academy of Music. However, the whole notion of people with Parkinson’s benefitting from dance was the brain-child of Olie Westheimer, another Brooklyn resident who brought the idea to Mark Morris in 2001. Shortly thereafter,  Dance for PD® was launched as a non-profit collaboration between the Mark Morris Dance Group and BPG.

Mark Morris generously offered space for the Brooklyn Parkinson’s community to house our dance classes and, over time, our singing and movement classes, and monthly support groups for People with Parkinson’s (PWP) and their caregivers. Morris threw in the bonus of providing two of his top dancers as our dance teachers, David Leventhal and John Hegginbotham, joined for many years by Misty Owens, a gifted tap dancer and dance teacher. The icing on the cake was the added gift of a live pianist/composer of exceptional talent, William Wade, who played (and still plays) piano during the dance classes, who went on to teach and lead the PD singing group.

It wasn’t long before the popular Friday “Movement Lab” was added to the line-up, led by another celebrated BPG star, professional dancer and choreographer Pamela Quinn, who lives with PD herself. Quinn now also leads classes in Manhattan, and travels across the globe, teaching her techniques.

Birthed at the start of the 21st century, this new organism, “Brooklyn Parkinson’s Group” became a life-raft not only for me, but for dozens of others, (today numbering in the hundreds) some arriving from New Jersey, Long Island and the four other boroughs. I began to gratefully partake in the free weekly classes for PD folks and care-partners in dance, movement and singing in 2003, gradually rescheduling my hours as a family therapist and Resident Poet in the NYC public schools so I could attend. Participation slowly became a necessity, motivating me (and countless others) out of our houses and into the welcome company of peers struggling to adjust to living with Parkinson’s.

By 2008, my own progressing symptoms forced me (not unlike innumerable compatriots) to reluctantly retire from my two careers. By then, fortunately for me and about 15 others, a new partnership had recently emerged between BPG and Long Island University, initiated by a lawyer living with PD. LIU was just a few blocks away, and we jumped at the chance to attend twice-weekly aerobic and weight-training exercise classes.

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Suddenly, nearly every weekday, classes had become available, strengthening our bodies, our voices and our spirits. Of equal value, this daily-ness and continuity allowed many of us to become a community, and a family. Traveling between boroughs, we began to share meals, birthday celebrations, attend theater together, sign up for boat rides to see fall foliage, to visit one another in hospitals, and sadly, to jointly attend way too many funerals.

In 2011, one of our dance teachers, David Leventhal, once a lead dancer with a soaring career in the Mark Morris Dance Group, astonished us all by leaving the dance group in order to become director of “Dance for PD.” He began to train interested dancers to initiate new Dance for PD classes across the US and eventually, throughout the world.  His program and techniques are being taught in over 100 communities worldwide.

In 2013, after being filmed for a year by documentary filmmaker Dave Iverson (who also lives with Parkinson’s) and videographer Eddie Maritz, a beautiful hour-long film, “Capturing Grace”, was released. The film followed our dance community for over a year as we prepared for a final professional dance performance in 2012, and the film won Audience Favorite awards at film festivals across the US, eventually appearing on PBS.  “Capturing Grace” has inspired viewers with Parkinson’s world-wide to dance and to believe in their abilities to feel graceful again. capturinggracefilm.com

BPG and Mark Morris Dance Company are still partnering to offer dance and singing classes in all five boroughs, as well as in New Jersey. Thus explains the fierce loyalty of the Brooklyn Parkinson’s Group. At the end of the day, we all share a common bond of one extraordinary, creative, patient-based Parkinson’s community in the greater New York City area.

Leonore Gordon
Team Captain, Brooklyn Parkinson’s Group & Friends

 

Honoring Family Care Partners in November

Saturday, November 8th, 2014

While my family celebrated Mother’s Day each year when I was growing up, I remember my mother telling me that “every day is Mother’s Day.” November is National Family Caregivers Month and I think my mother’s perspective applies – every month is family caregivers month. As Edna Ball explains in her recent blog post, “… the term has evolved to care partner. This is a really important distinction because to achieve the most success, a working partnership is essential.” Anyone living with someone who has been diagnosed with an ongoing disease knows that the illness impacts the entire family on a daily basis and not just the person receiving the diagnosis.

In addition to highlighting some family care partners who participate in the Unity Walk, we want to take this opportunity to share some resources for care partners and focus on legislative initiatives underway to provide them with support.

RESOURCES
Caregiver blog graphic NPF
The National Parkinson Foundation (NPF) is one of several organizations that offer resources to help you navigate the various challenges that may arise as a care partner. These resources include a Toll-free Helpline, a Caring and Coping Manual, a Parkinson’s disease (PD) Library, a Caregiver Forum and a Parkinson’s Central Smartphone App. Here’s how you can learn more to benefit from NPF’s resources and tips for care partners.

CAREGIVER ROUNDTABLE AND PENDING LEGISLATION

Sen. Corey Booker, Charlene and Joe Narciso, Rep. Bill Pascrell and Lisa Paillex-Griffin

Sen. Corey Booker, Charlene and Joe Narciso, Rep. Bill Pascrell and Lisa Paillex-Griffin

This past week, Sen. Cory Booker (D-NJ) and Rep. Bill Pascrell (D-NJ) hosted a roundtable on caregiving in Englewood, New Jersey. Unity Walk participants and Parkinson’s Action Network (PAN) Assistant State Directors for NJ, Lisa Paillex Griffin and Joe Narciso were in attendance along with Joe’s wife, Charlene. Sen. Booker and Rep. Pascrell also recently sponsored legislation about caregiving. Learn more about the roundtable and pending legislation about caregiving.

PARKINSON’S JOURNEY: A CARE PARTNER’S PERSPECTIVE

Gayle and David

David and Gayle Maloney

“Whether it is because of Parkinson’s disease or because I’m now older (I suspect a little of both), above all, you learn patience and hope,” states David Maloney. “You learn to appreciate all of the moments, both the large and small, of the life that you are living together.  You learn that people want to help and that you and your family can help others by participating in clinical trials, raising funds for research, by being available to them to listen, and by sharing your experience.”  This is one perspective of a family’s Parkinson’s journey … read this guest blog post written by a husband, and care partner.

A LONGSTANDING CARE PARTNER

John and Edna Ball

Edna and John Ball

Edna Ball, co-founder of Team Parkinson has lived with Parkinson’s disease since she was 11 years old – first with her mother’s diagnosis of PD at the age of 48 and then when her husband, John was diagnosed over 40 years ago. The years have brought wisdom and some valuable lessons which Edna has shared on our blog. Her comment that spoke to me the most was, “Always remember that every day may not be good, BUT there is something good in every day. Give yourself permission to recognize that goodness and enjoy it.” Read more of Edna’s story about being a longstanding care partner.

CARING FROM A DISTANCE

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Sara Beam and family

Sara Beam’s parents lived in North Carolina. Her father had been diagnosed with Parkinson’s disease close to twenty years ago. She and her brothers lived in New York, Massachusetts and Texas and needed to develop strategies to care for their parents from a distance. As Sara’s mom became ill with cancer and after her death, the situation required an increased level of care. Learn more about how Sara and her siblings took on the responsibility of caring for their aging parents from a distance.

The Unity Walk is about community and it takes a loving community to participate in the care of someone living with Parkinson’s disease. Whether you are a care partner for your spouse, parent, child, sibling or friend, we take a moment in November to honor all you do throughout the year.

Helaine Isaacs
Event Director

Caregiver Roundtable

Tuesday, November 4th, 2014
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Photos are in Courtesy of the Parkinson’s Action Network and Lisa Paillex Griffin

On October 22nd, Sen. Cory Booker (D-NJ) and Rep. Bill Pascrell (D-NJ) hosted a roundtable on caregiving in Englewood, New Jersey. Sen. Booker and Rep. Pascrell also recently sponsored legislation about caregiving. The legislation called In-Home Caregiver Assessment Resources and Education Act or In-Home CARE Act would create a caregiving grant program to allow eligible organizations to carry out home visiting programs for unpaid caregivers.

Unity Walk participants and Parkinson’s Action Network (PAN) Assistant State Directors for NJ, Lisa Paillex Griffin and Joe Narciso were in attendance along with Joe’s wife, Charlene. For Lisa and Joe, this caregiver bill would have a direct impact on their lives. Lisa has been a caregiver for her father who has Parkinson’s disease and her mother, who recently passed and also had Parkinson’s.

Charlene shared her experience as a care partner, but also stressed the uniqueness of her situation. Unlike many of the people often thought of as care partners, Charlene is the care partner to someone who is not elderly. Her husband, Joe was diagnosed 13 years ago at the age of 33. She said that it was very difficult to not only find resources for younger people affected by chronic illness, but also for her young family.

Charlene found the roundtable very worthwhile. “I now know what Joe feels like at PAN events, when he gets to hear that people experience what he experiences,” Charlene said. “It felt like I had 1,000 pounds lifted off my back. I carry that and I didn’t even know it until I was there.”

Learn more about the advocates’ participation in the roundtable about caregiving via PAN’s site.

Resources for People Who Care for Someone with Parkinson’s

Monday, November 3rd, 2014

by Cathy Whitlock, Director of Online Communications, National Parkinson Foundation

Caregiver blog graphic NPF
Taking care of someone with Parkinson’s disease (PD) is a journey. It is natural to have a lot of concerns and questions, and to look for outside support. Whether your loved one’s diagnosis is recent or you are a seasoned care partner, the National Parkinson Foundation (NPF) has resources to help you navigate the various challenges that may arise:

  • Toll-free Helpline: Call NPF’s bilingual Helpline at 1-800-4PD-INFO (473-4636) or helpline@parkinson.org for answers to all of your questions about caregiving, referrals to health professionals and community resources, or emotional support. All calls are confidential and answered by nurses and social workers who are trained experts in Parkinson’s.
  • Caring and Coping Manual: Written for caregivers, this free book profiles caregiver roles and activities. Topics include what to expect, care options, activities of daily living, legal and financial planning, and a special section on taking care of yourself as a caregiver. Order your free copy at www.parkinson.org/store.
  • PD Library: The PD Library contains a number of articles, checklists, books, DVDs, videos and more that cover a wide variety of topics concerning caring for a loved one with Parkinson’s. Browse these valuable resources at www.parkinson.org/library.
  • Caregiver Forum: NPF’s online forum is a place where caregivers of people with Parkinson’s can connect, converse and address their unique concerns. Join the forum at www.parkinson.org/forums.
  • Parkinson’s Central Smartphone App: This free, easy-to-use smartphone app gives people with Parkinson’s and care partners access to PD-related information wherever and whenever needed. Download the app at www.parkinson.org/parkinsonscentral.

The National Parkinson Foundation is also here to help you maintain the balance between your daily caregiving activities and your commitment to taking care of yourself. These tips can make daily activities run more smoothly and help reduce caregiver stress and fatigue:

  • Take “me” time. You need to take care of your physical and mental health. That means getting plenty of sleep, eating healthy, exercising and socializing with friends.
  • Embrace technology. From health apps and health tracking tools to medication reminders and assistive devices, you can make your day-to-day routine easier by exploring technology options beyond the Internet.
  • Make small changes. Simple things like using satin sheets on the bed to facilitate turning can help make your days go more smoothly. Special kitchen utensils, such as easy-to-hold angled utensils and high scoop plates, can make mealtime easier.
  • Get the help you need. Family, friends and neighbors can all be a source of ongoing support. But if they can only help out in a pinch, consider hiring a cleaning service or home health aide.

Caring for someone with advanced Parkinson’s? Find yourself having more questions than answers? This November, NPF will launch CareMAP, (Managing Advanced PD), an online space where people who provide homecare – from family caregivers to paid caregivers to those who provide care from a distance – can receive helpful guidance.

For more information, visit www.parkinson.org, or call the NPF Helpline at 1-800-4PD-INFO (473-4636).

The Difference Between WELLness and Illness is I and WE

Monday, January 13th, 2014

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