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Archive for the ‘Guest Post’ Category

It Works to Fundraise at Work!

Wednesday, March 30th, 2016

I speak with our walkers every day and hear all the creative ways they are going about raising funds for Parkinson’s research. Most of our walkers reach out to their family and friends, download our Facebook app and some create fundraising events. Some have partnered with their places of business to raise funds in support of the Unity Walk. We are grateful for the generosity of so many of these companies. HomeServe USA is involving their employees to support Kristin Legenza, a longstanding participant in the Walk, in her effort to raise funds for PUW. Read Kristin’s guest blog post below.

Does your company provide an opportunity to support your fundraising efforts? Maybe they do and it’s something you haven’t explored up until now. This is the perfect time to look into these options. Are you already raising funds at work? Please let us know. We’d love to hear from you!

Helaine Isaacs
PUW Event Director

Stephanie_Kristen_PUW

This year marks Team Legenza’s 6th year participating in the Parkinson’s Unity Walk. I walk for two reasons – my Grandpa Jack and my Dad. Growing up, my Grandpa had Parkinson’s for many years and it eventually took his life. A few years before he passed, my Dad was diagnosed with this debilitating disease as well. My sisters and I knew we wanted to get involved but just didn’t know how. My sister found the Unity Walk online and we immediately started to participate in the Walk and raise funds to find a cure for Parkinson’s disease. It is an amazing family event that we are extremely lucky to be a part of. Every year we try and do more, and luckily I was able to fundraise through work.

I work for a company in Norwalk, CT called HomeServe USA. We often participate in what the office calls “Jeans Passes.” If you donate to the charity chosen by HR, you can wear jeans every day to the office for a certain amount of time. A few months ago, employees were invited to make a presentation to the executives about the charity of our choice and reasons why that charity should selected for this kind of fundraising opportunity. The executives then chose three charities that our employees would contribute to this year. Pushing out of my comfort zone, I took a stand with a colleague of mine and told my peers why the Unity Walk is important to me and what a great experience it is. I spoke about an event where people come together to raise awareness and funds to cure a disease that impacts so many lives and families. I shared my experience of being at the Walk, and what it’s like to come together with a group of people who feel what I feel and who support one another as we stand up and fight.

Sixteen charities were presented and the Unity Walk was chosen as one of the top three. Donations are pouring in and I could not be more grateful to work for a company that supports me and the challenges I face outside of work. Not only are the people I work with donating to PUW, but my company, HomeServe USA, matches every donation dollar for dollar. In addition, HomeServe USA donated $1,000 to each charity that was presented as part of the contest.

People say that anyone can make a difference. After this experience I believe this to be true. Due to my company and my colleague’s generosity, I am part of an effort that is significantly increasing the amount of money raised for research and I couldn’t be more excited! I stepped outside of my comfort zone and shared with my colleagues a personal part of my life that I had previously kept very private. As hard as it was to do, I would do it all over again because I was able to make a difference. If we are willing to ask, people are eager to help do their part to find a cure for a disease that affects so many lives immensely, including my own.

Step out of your comfort zone, remind people of not only the hardships of the disease, but the benefits that come from gathering as a community at the Unity Walk. Fundraise any chance you get. I did and I’m proud of what we’ve accomplished. We each have the capacity to make a difference.

Kristin Legenza
Team Captain, Team Legenza

Rock Steady Boxing – One Walker’s Experience

Monday, March 7th, 2016

Double photo #1 Mike Achin RSB copy

I was excited to hear that Rock Steady Boxing (RSB) will receive the Bonander Award at the Unity Walk this year. Over the last two years, RSB has become a very important part of my life. It has taught me a lot about fighting Parkinson’s disease (pd) and not giving up. The more we learn about pd, the more we learn that staying active through exercise is important. A body in motion stays in motion! There are many ways to stay active such as running, swimming, walking, yoga, etc. Just pick what you like to do and start doing it!

Two years ago at the World Parkinson’s Congress in Montreal, my wife, daughter and I attended a working seminar called Rock Steady Boxing. I immediately fell in love with it. It’s everything I had been searching for. I was so excited about this program! That same year at the Unity Walk, more information was available about RSB. The problem was they were in Indiana and I live in Massachusetts. I was searching for answers and trying to figure out how I could bring RSB to my area. I was getting frustrated but then I heard some good news. There was a boxer in Rhode Island who was going to open up his gym to Rock Steady Boxing. My prayers had been answered!!! Rich Gingras, along with my fellow pd warrior Mike Quaglia, had gone to Indy to get trained and BINGO, RSB had a home in Pawtucket, RI. That’s how I got involved. Now let me explain why I love RSB.

The word “boxing” scares some people off. They think we get in the ring and pound each other. Even though that might be fun it’s not what happens. We do everything else a boxer would do such as, footwork (don’t shuffle!!), stretch those muscles (so we don’t become rigid and hunched forward), and yes, putting on the gloves and hitting the heavy bag, hand pads and our new toy, the dummy. Our classes include people living with pd at every range along the continuum of this disease, from those confined to wheelchairs to those just diagnosed, and everything in between. Men and women, ages 30 to 80, all come to battle pd and take charge of our lives.

Everyone who enters our gym immediately becomes part of our band of brothers and sisters. We laugh, cry, enjoy the good days and help each other through the hard days. We are ONE, fighting back at pd!! When you enter our gym it is time to get to work. Get your hands taped up and start walking or jogging. We need to get our hearts pumping. It is now proven that a strenuous exercise program can slow the progression of pd. I have seen it over and over again at RSB. After we warm up, we do a good 15 to 20 minutes of stretching. This is so important in fighting the stiffness that pd tries to give our body. We learn new ways to stretch. We can do these on our own at home too. Last but not least, get the gloves on!! “It’s just you and me now pd … and I feel good. I am going to knock you silly!!” Every participant in the class works with a partner and we encourage one another to work to the best of our ability. We are all learning to take control of our lives and knock the crap out of pd. It feels good to let loose and pound that bag. You are swinging with your left and right hand, your good side and your bad side. You are stretching to hit the bag. You are using footwork. All things that we pd fighters have trouble with from time to time. Magically, you are swinging, jabbing, punching, and moving those feet – not every time, some days are a struggle. You actually feel good and you forget you have pd!!!! It’s a strenuous workout and if you do it right, you feel great and you’re exhausted.

Mike #4
There is also a bonus I did not expect from RSB. You become close to your fellow boxers; they become like family. We all know how much pd has tried to take away from us. But now we fight back – we sweat, fall, work through the times the meds are not kicking in, laugh, and cry … don’t mess around with my new family!! I love them all. At the end of every class we gather with a chant – one, two, three … FAMILY!! Outside of the gym we do the best we can. This is my life. This is how I take charge. These are my people!! What are you waiting for? Find a RSB near you and change your life forever!!

Note: pd is purposely not capitalized. I refuse to give it any respect.

Mike Achin
Team Member, Team DominACHIN over PD

Resilience Against All Odds!

Wednesday, July 29th, 2015

Doug Nemeth was diagnosed with Parkinson’s disease ten years ago and has participated in the Parkinson’s Unity Walk since 2009 as a member of “Livin’ La Levodopa.” Doug believes resilience is one of the factors that contribute to his living well with Parkinson’s disease and recently shared this story.

Helaine Isaacs
Event Director

Lemon tree
Nearly 45 years ago, my parents gave me a small stick of a lemon tree as a gift. It survived high school, went with me to college and survived the move from Florida to Florence, NJ. It survived six moves in the Reading area of Pennsylvania, one during a Halloween snowstorm. It survived severe drought outside in the summer especially when we went on vacation. I always hired a local teenager to water the tree in my absence but inevitably the youth hired to do the job felt that a one minute rain shower was adequate for the 3’ tree until we returned home a week later, in spite of daily temperatures of 95 degrees. The tree always rebounded when it saw me and the hose. It survived me waiting until Thanksgiving to bring it inside after barely enduring freezing temperatures. Everyone who knows me well knows I have this lemon tree a very long time! They also probably have enjoyed lemonade from my lemon tree or at least a squeeze of lemon in their water or tea. The tree has yielded countless bushels of lemons over the years and has had over 25 full size lemons on it at any one time.

By this past winter, it was obvious that time had taken its toll. The lemon tree lost all of its leaves during an early frost. I forgot I put it in the guest bedroom – my cognitive functioning is fading due to my living with Parkinson’s disease – and the tree was apparently dead after six weeks of “drought” at my own hand. In late April, with no one wanting to even mention the lemon tree, I put it out to its final resting place. At the last minute, I decided to repot it. It was lifeless…rotted roots and no green anywhere but I decided to do it anyway. Everyone chuckled about the dead tree in my garden. Two months later, after having been without leaves for eight months, the tree is starting to push out growth everywhere. It is nothing short of a miracle. If that tree can live through that, I can certainly live with Parkinson’s disease. That lemon tree has taught me about resilience. It is a family heirloom. My son, Zach says the only thing he wants of mine after I’m gone is the lemon tree. Take good care of it Zach and continue to learn from it.

Doug Nemeth
“Livin’ La Levodopa”

 

Knock Down Parkinson’s with Rock Steady Boxing Will Be at the 21st Parkinson’s Unity Walk

Wednesday, April 15th, 2015

Awareness of Rock Steady Boxing’s value and its popularity is growing among the Parkinson’s community. Just around the time that they were featured on NPR, we received a phone call from Marlene Kahan, a long-time walker who asked if we knew about this program. She’s been attending at Gleason’s Gym and was singing its praises. Marlene introduced us to Roberta Marongiu and Alex Montaldo, Co-founders of Rock Steady Boxing NY/LA. Not only did Roberta and Alex agree to share their experience on the PUW blog but they’ve agreed to have members of their group perform two demonstrations on the Bandshell stage on Walk day. Check the Event Timeline for approximate times of their demonstrations and listen to announcements from the Bandshell stage for exact times.

RSB banner
Rock Steady Boxing NY/LA is a bi-coastal non-profit organization devoted to helping people with Parkinson’s disease (PD) re-gain control over their lives. We fight back against PD inside and outside the ring!

Intense exercise and boxing drills not only help improve motor and non-motor functions, but they also contribute decisively to deconstructing the stigma associated with the disease.

Rock Steady Boxing was created in 2006 in Indianapolis, IN. We fell in love with the program and decided to bring it to New York and Los Angeles a year ago, and now we have two wonderful groups, one in Dumbo (NYC) and one in Santa Monica (LA).

Boxing classes are the core of our program, but our goal is to create a much more extensive support system. Most people still don’t know much about PD, so the diagnosis comes even more as a shock for them and their families, making them feel powerless.

We believe that a good fighter is an informed one! That’s why we created a network of Parkinson’s experts, support groups, physical therapists, and neurologists that believe in our program and are always ready to help.

Parkinson’s is a big, scary enemy, but together we can fight back. We want our boxers, and all the people who are battling this disease to know that they are not alone. They’re part of a team, together with their families, friends, doctors, physical therapists, support groups and us. We are their corner-men, always present and ready to help and give them strength, but they are the captain of the team. Their fighting spirit is key to knocking down Parkinson’s day by day, until we manage to knock it out for good!

RSB-blog-photo-2

Alex Montaldo
Co-founder, Rock Steady Boxing Head Coach

Dr. Roberta Marongiu, PhD
Co-founder. Rock Steady Boxing Coach

A Message From Elizabeth Gold, Team Captain of Team Duke, 2014 PUW Top Rookie Team

Sunday, April 5th, 2015

How Team Duke’s Unity Walk experience unfolded resulting in them becoming our 2014 Top Rookie Team

photo 2

I discovered the 2014 Unity Walk while I was on maternity leave late last winter trying to juggle the high of having a healthy, new little boy and the low of watching my Dad in the throes of his fight with Parkinson’s. I was bouncing along that emotional spectrum one night researching ways to support both of my parents when I came across the website for the Unity Walk. I registered in the wee hours of the morning, created Team Duke in honor of my dad, and signed up to walk. It was a snap decision and I’m so glad that I did it.

I wasn’t sure what to expect since I had never directly solicited money through a walk or run. And I also wasn’t sure what to expect by so publicly acknowledging my dad’s illness. He was a private man, and while he certainly didn’t endeavor to hide his disease, he was the type of to deal with adversity privately rather than communally. I am cut from the same cloth, so it took me several days of writing and rewriting my solicitation email before I finally sent it off to my family and friends.

I set a goal of $5,000 which seemed too high, but why not? And then people started responding and I reached my $5,000 goal within two weeks. It was amazing and inspiring to me. I think our family and friends were relieved to be able to support my dad – even just financially – because they were feeling as helpless as I was. And the donations all arrived with messages of support. I loved sharing them with my parents, and it made my dad feel like he wasn’t in this alone. I quickly increased my goal to $7,500 and then $10,000 as the donations continued to come in. A few weeks before the event, I was feeling comfortable and confident enough to use the Walk’s social media tools like the Facebook app. I happily was surprised to hear from old acquaintances and friends on Facebook who offered their support and donated to Team Duke as well. I am grateful and thankful that Team Duke ended up raising the most money of any rookie team. Selfishly it is a source of pride since this was so personal, but the truth is that the funds made a tangible difference last year in helping to raise money for research. This is a terrible disease and we need to find a cure.

As much as I was dreading the fundraising aspect of the Walk, it turned out to be an uplifting experience for me and my family. It is easy to ask for money for Parkinson’s because I’ve had a front row seat to its impact on a loved one. And because 100% of the proceeds raised by the Unity Walk go to research, it is an even easier ask. You just have to send that first email!

The Unity Walk is a joyous and vibrant event. And everyone who attends understands immediately that this is a community of patients and caretakers, family and friends who are all in this together. It is such an uplifting morning and you can’t help but leave Central Park feeling like the glass is half full. Full of life and living.

Good luck to everyone. Team Duke looks forward to the honor of leading off this year’s walk on April 25th.

Elizabeth Gold
Team Captain, Team Duke