• Archives

  • Categories

  • Subscribe to Blog via Email

    Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Archive for the ‘Guest Post’ Category

Young Onset Support Group of Westchester/Bronx

Wednesday, March 8th, 2017

Teams are at the core of the Parkinson’s Unity Walk and they come in many sizes with various affiliations – family teams, corporate teams, and support group teams. Young Onset Support Group of Westchester/Bronx is a great example of a support group that meets all year round AND participates together in PUW. This is their 12th year at the Unity Walk!

Helaine Isaacs
PUW Event Director

YOPD Support Group of Westchester/Bronx with May May Ali at 2016 PUW

In March 2004, George and Norma Jensen, both of whom have Parkinson’s disease, recognized the need for a support group for those with young onset Parkinson’s disease in the Westchester, New York area.  In January 2005, they secured a meeting room at White Plains Hospital, advertised with neurologists, and waited. After four months a few members showed up, then a few more.  Early members included Anthony Fente, Bob Roach, Anne Dowling, Janet Stram and Alex Abraham. We invited guest speakers to keep us informed and started planning social events to have some fun. We developed a trusting, supportive environment where our voices could be heard.

The group now has over 40 members. Both people living with Parkinson’s and care givers are welcome to join us.  Although we are considered a “young on-set” group we don’t turn anyone away as long as they are young at heart.  Our meetings cover a variety of topics including latest treatments, medications, symptoms, strategies for coping with work, sleep, life. All subjects are open for discussion at our monthly meetings.  We have formed true friendships and know that we can pick up the phone and talk to someone who understands our unique challenges. We are actively involved with the Parkinson’s community and share information and resources.

The first year we joined the Parkinson’s Unity Walk, Norma made a beautiful banner and left room at the bottom to add in subsequent years.  The banner has accompanied our group now for 12 Unity Walks.  It’s a reminder to keep up the fight, to support each other, and take care of ourselves.

We are proud of our group and the amazing networking that has placed our team (without any corporate sponsorship) in the top ten teams nationally for a number of years.  Last year, we had 21 registered walkers with many more joining us at the Walk and together, raised $17,314. At first many of us were shy about asking friends and relatives for donations.  What we began to realize is that people want to help.

Many of us have increased our donations by getting our social media savvy children involved. One example is Janet and Danny Stram’s son Scott who, year after year with the help of social media, collects thousands of dollars for his mother’s cause.

Alex Abraham, active member and facilitator of our group, discovered a talent for fundraising.  He begins fundraising for the Unity Walk in the fall and gives anyone and everyone he encounters the opportunity to contribute.  Alex’s philosophy is that it makes people feel good to donate and he has been very successful obtaining face to face donations.  He always has donation forms on him, keeps records of everyone who donates and contacts them from year to year.

Another aspect of the Unity Walk is the opportunity it affords for family and friends to come out and support us as we walk for a cure.  The atmosphere is positive, the walk through Central Park pleasant, the solidarity evident. Living with Parkinson’s disease is challenging but the day of the Unity Walk is always about hope.

Alex Abraham, Team Captain and Anne Dowling, Team Member
Young Onset Support Group of Westchester/Bronx

 

 

 

Parkinson’s Patients Pedal Toward Progress at the Boston JCC

Monday, February 27th, 2017

Exercise has proven to be beneficial to people living with Parkinson’s disease. The best exercise for you is the exercise that you’ll actually do! There are so many different options today including Rock Steady Boxing, Dance for PD, yoga, NIA exercise and cycling – and so many more. Cycling is the one exercise demonstration that you won’t see at the Unity Walk because the logistics of delivering multiple stationary bikes to Central Park is beyond what we can accomplish. Since we can’t showcase cycling classes at the Walk, we thought we’d  use our blog to share some insights into the cycling classes being offered around the country.

Helaine Isaacs
PUW Event Director

Audrey Edwards and Holly Rabinovitz at the JCC

On Monday mornings, the Boston JCC offers a cycling class that looks like any other. But there’s more to this cycle class than meets the eye: Each of its students has Parkinson’s disease, a neurological condition that impairs movement and function.

Cycling on stationary bikes may provide symptomatic relief for people with Parkinson’s disease, especially if they cycle using what is described as forced exercise, i.e. pedaling at a rate faster than their natural cadence. Researchers found this type of cycling exercise appeared to make regions of the brain that deal with movement connect to each other more effectively.  Cycling gives individuals the opportunity to build lower leg muscles in a safe way and individuals may also see an increase in energy level while enjoying exercise in a group environment.  These are all truly beneficial to the population living with Parkinson’s disease.

The Boston JCC is the only fitness facility in the area to offer a cycling class for people with Parkinson’s and the interest and participation have been extremely positive.  The instructors are certified Parkinson’s Cycling Coaches in addition to being experienced cycle instructors, both of which are very important in this specialized cycle class. Karen Sauer, a class participant who never rode on a stationary bike before taking the class is very happy that she is participating in the cycle class. “I think I am probably in better condition than I would be if I didn’t have Parkinson’s disease.  It’s unlikely that I would be taking a cycle class otherwise.  Or the other gym classes.  That just wasn’t me, pre-diagnosis.  Yes, there are challenges, and it’s sometimes hard to tell what’s Parkinson’s disease and what’s aging, but I am optimistic about the future!  Thanks for making exercise fun!”

The JCC and the Movement Disorder Center at Beth Israel Deaconess Medical Center are partnering to provide a wide range of fitness programs to the greater Boston community. The offerings are part of the Edmond J. Safra National Parkinson’s Wellness Initiative, launched to improve the lives of people suffering from Parkinson’s, a chronic and progressive movement disorder.

Click here to read Boston Magazine’s feature story on the JCC’s cycling program.

If you’re interested in the JCC’s Parkinson’s programming, visit www.bostonjcc.org or call 617-558-6459.

Holly Rabinovitz
Assistant Wellness Director
Boston Jewish Community Center

Not Just a Walk in the Park – Perrigo Walks for Parkinson’s!

Monday, February 13th, 2017

Over 85% of PUW participants walk proudly with their teams. In addition to the many family teams that participate in the Walk, there are corporate teams, support group teams, and teams from programs that train healthcare professionals to work with members of the Parkinson’s community. Team Perrigo is a wonderful example of a corporate team that was looking for an opportunity for their employees to come out in support of a worthy cause. You can only imagine how pleased we were when they called to ask about creating a corporate team and then suggested that we apply for a grant request from their company’s foundation. We are grateful to Perrigo’s generous support of the 2016 Unity Walk – they donated $10,000! – and are delighted that their team will return in 2017.

Helaine Isaacs
PUW Event Director

Team Perrigo enjoying the 2016 Parkinson’s Unity Walk!

Providing high-quality healthcare products all over the world since the early 1900s, it was only fitting that Perrigo Company should partner with the Parkinson’s Unity Walk (PUW) to contribute to researching this neurodegenerative brain disorder.

Perrigo Company and the PUW have more than a few common interests, but the two that are most obvious to me are: Healthcare and Community.

Healthcare
Brushing the surface of both organizations, our mission statements revolve around improving global health and happiness.  Perrigo develops, manufactures, and distributes high quality healthcare products at affordable prices.  Perrigo’s facility in the Bronx manufactures over-the-counter topical products such as the less expensive store brand anti-itch cream you rub on your child’s itchy bug bites and the lice shampoo that you grudgingly scrub into your child’s hair as you wash every linen item in the house.  Admirably, PUW supports the same theme – researching a disease that results in so many people living with debilitating symptoms every single day in order to identify appropriate forms of relief.  This is the foundation of Perrigo’s common ground with the Parkinson’s Unity Walk organization.

Community
Both Perrigo Company and PUW have a strong sense of community.   I’d like to focus for a second on the Community Service Committee that my colleagues, Chris and Clare helped me to initiate in 2014.  This might help you understand how we got involved with the Parkinson’s Unity Walk in the first place.  The three of us looked around and saw 500 passionate, hardworking employees at our facility in the Bronx – and an opportunity to bring them all together for a good cause.  That is why we started the Community Service Committee.  Since then, we have participated in events to support research for cancer, Multiple Sclerosis, and, of course, Parkinson’s disease. We’ve hosted back-to-school drives for children in need in the Bronx and allocated over $100,000 from the Perrigo Company Charitable Foundation to various causes supporting healthcare and education.

Inviting our employees to participate in PUW gave us yet another opportunity to bring our employees together for a great cause and for that we are grateful. That being said, PUW’s contribution to the community is obvious – organizing an impactful event that brings people together from all over the world.  After attending the thank you reception for top fundraisers the night before the Walk, the sense of community was obvious as people shared poems and speeches about traveling across the country for numerous years to attend this Walk. The love and support in the room was overwhelming and I found myself truly touched by the words of strangers supporting each other through their Parkinson’s journeys.

I’ve witnessed similar love and support at Perrigo in the Bronx.  When I first started at Perrigo as a Production Supervisor, one of my employees fell very ill and I was deeply moved by the efforts of a co-worker to collect donations from other employees who wanted to help – some of whom didn’t even know her personally.   That environment of love and support is not easy to match – but I know we’ve found it with the Parkinson’s Unity Walk.

We look forward to supporting the Parkinson’s Unity Walk for years to come.  Thank you for this opportunity to share our story with you.

Rachel Brown
Perrigo Company

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

untitled-1
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. (link to Pamelaquinn.net)

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.

bpg-blog-2
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

 

Peaches and Parkinson’s – Working Together to Find a Cure

Tuesday, June 21st, 2016

Ontelaunee Orchards is among a growing list of companies that are actively supporting their employees in their effort to raise funds on behalf of the Unity Walk. Doug Nemeth is their Executive Vice President. He is living with Parkinson’s disease and is a longstanding participant in the Unity Walk. Together, they’ve created “Peaches for Parkinson’s.” Read below for more details about their fundraiser.

This event highlights that you can raise funds for the Unity Walk all year round and those efforts don’t need to be limited to the months of February through April.

We are grateful to Doug, Stacey and the owners of Ontelaunee Orchards for their support and wish them every success with their fundraiser. If you’re in their area on August 13th, please make sure to stop by.

Helaine Isaacs
PUW Event Director

Parkinsons ad
I mentioned in passing to Stacey Mullen that I would love to have a fundraiser of some kind in the orchard for the Parkinson’s Unity Walk but thought it might be a challenge with our time limitations at work.  At the time, I don’t recall Stacey reacting at all but she heard me all right. Over the winter, she was working on preparations for the 2016 season. She presented her plans for a walk at our orchards to the owner of the company and he was on board! Once we had his support, we started getting excited about the possibilities. I have spent 37 years working for Ontelaunee Orchards and to be part of an event like this is exciting and humbling. I am so grateful. After eleven years of living with Parkinson’s disease, work is becoming more challenging every day. Happenings like this fill me with optimism and strength. The first blossoms opened for the 2016 peach crop in late March. I believe they intend to do their part and are anxious to start growing. Peaches and Parkinson’s has a ring to it. Don’t you agree?

Doug Nemeth
Team Member, Team “Livin’ La Levodopa”

Doug Nemeth was diagnosed with Parkinson’s disease eleven years ago and he’s been a longstanding member of the Parkinson’s Unity Walk’s Team “Livin’ La Levodopa.” Doug has been employed as Executive Vice President at Ontelaunee Orchards in Berks County, Pennsylvania for over 38 years. Doug’s fundraising on behalf of the Unity Walk has mostly involved his reaching out to family and friends. In conversation a few months ago, he mentioned that he would like to create a local fundraiser in our community. That got me thinking – why not create a fundraiser at our orchard? I approached the owner of the orchard and he was immediately on board. This was the beginning of Peaches and Parkinson’s!

Ontelaunee Orchards is one of the biggest and oldest orchards in Berks County, Pennsylvania.  In the early 1920’s the orchard was comprised of approximately 2,000 acres growing peaches, apples, and cherries.  Today, the orchard is slightly smaller but growing a variety of fruits for “Pick Your Own”; apples, peaches, cherries, strawberries, blueberries, raspberries, and pumpkins.  Today it’s a great place to come with the family and make memories while picking fresh local fruit.  We are located in Leesport, Pennsylvania and the scenery and views while picking is truly majestic!

During August, aka “prime peach time”, Ontelaunee Orchards holds its annual Peach Festival where we highlight our PF 007 Peaches.  These peaches are truly something! They are the biggest peaches you’ll ever see! Every year we have the world’s largest peach, but unfortunately we haven’t been able to successfully document it.  The peaches are about the size of a softball, some larger, some smaller.

This year Ontelaunee Orchards’ Peach Festival has decided to combine forces with the Parkinson’s Unity Walk.  On Saturday, August 13th, starting at 10:00 am, the Orchard will host a Country Road Walk through the orchards.  Participants in the walk will get a T-shirt, and a pre-paid bag to pick peaches along with their donation.  After the walk, let the festivities begin! Stay for some BBQ, shop at the local craft vendors and listen to some live music! We’ve also approached local companies in our community and several have already signed on to serve as a sponsor of this fundraising event.

Doug believes that resilience is one of the factors that contribute to living well with the disease and he continues to capably and confidently run our company. We are grateful for this opportunity to support Doug in his efforts to raise funds for Parkinson’s research.

Please join us on August 13th, to help find a cure for Parkinson’s with peaches!

Stacey Mullen
Retail Operations Manager
Ontelaunee Orchards