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Archive for the ‘Guest Post’ Category

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.

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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!

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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

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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

New York State of Mind

Monday, March 30th, 2015

I have the pleasure of opening the mail each day – and this time of year it is truly a pleasure to see all those checks arriving on a daily basis! One of our walkers, Doug Nemeth does an active mail campaign in addition to soliciting online donations and his donations are coming in strong. You can only imagine my surprise when I learned that Doug isn’t able to attend the Walk this year. It’s for a great reason – his son is receiving his doctorate in pharmacology. Doug “gets” the Walk. While he loves the experience of participating each year, he understands that at the end of the day, you don’t have to physically be at the Walk to raise funds for research and his donors understand that as well. Doug will end up raising as much this year as he has in the past when he’s walked in Central Park.

Life happens and things come up that may keep you from attending the Walk one year. We hope you will take Doug’s lead and continue to fundraise. This is one instance that you don’t have to be in it, to win it. Just like the lyrics to Billy Joel’s song, Doug is in a “New York State of Mind.”

Read on to hear from Doug Nemeth of team Livin’ La Levodopa directly …

Doug-Nemeth-for-blog

I was diagnosed 10 years ago with Parkinson’s disease. At the time I had no idea what Parkinson’s disease would do to my life. I feel that the quality of my life is better now than it was 10 years ago! This has a lot to do with my wife, family and friends. Much of this is due to the hard work of researchers funded by the Unity Walk.

Many of the friends we’ve made these last 10 years have been through the Parkinson’s family. I say family because we feel like brothers and sisters. We have made many friends through our support group.

Through this support group I learned of the Parkinson’s Unity Walk in New York City’s Central Park. Though all of us share some symptoms of the disease and not others, we all share one common desire – to beat Parkinson’s disease. By supporting the Unity Walk we are putting 100% of our donations into research that gives us and our children the chance at a life without Parkinson’s disease. I have been attending the Parkinson’s Unity Walk since 2009. We have a hard-working, proud, and loving team called “Livin’ La Levodopa.” It has been rewarding beyond what I ever imagined. Thousands of people coming together with love in their hearts for all the people around them and/or loved ones lost to this disease. We are driven to do all we can to beat PD and that is why I participate in the Unity Walk.

This year I’m the proud father of a son who is graduating from University of Pittsburgh with a Doctor of Pharmacy. Who knows? Maybe he will be the one who finds the cure. Unfortunately, the graduation is the same day as the Unity Walk in New York City. My priorities are in order and I will enjoy the entire weekend with my son at graduation. A big part of my heart will be with everyone in New York City that day.

That has not kept us from fundraising even though we won’t physically be at the Walk. So far, we’ve raised close to $4500 and we’re still going strong with close to four weeks left until the Walk. After all, it’s not about the physical walk. It’s about raising awareness, demonstrating support, and raising funds for research. The fundraising has gone well again this year. We are blessed to have many people who care so much and give of their time and resources. My wife and I have raised over $34,000 since 2009 for the Parkinson’s Unity Walk. My team,”Livin’ La Levodopa” has raised over $157,000 since its inception.

We are making a difference. Many thanks to all who have contributed. We could not do it without you.

That is why I am in a “New York state of mind.”

Doug Nemeth
“Livin’ La Levodopa”

LSVT BIG – A Personal Experience

Monday, March 23rd, 2015

I recently spoke to Jenny Erasmus, one of our walkers whose mom is living with Parkinson’s disease. She told me that her mom was doing incredibly well after participating in what she thought was a research project about gait and balance. I was intrigued so I called Jenny’s mom, Doreen to find out more about this research. It turns out it wasn’t research at all but LSVT BIG, a program that has proven to be helpful for those living with PD. Doreen learned about LSVT BIG at the Unity Walk, an example of the resources that are available at the Walk.

Read on to learn about Doreen’s experience with LSVT BIG …

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Since being diagnosed with Parkinson’s there are several changes I have been forced to make in my daily life in order to cope with effects of this disease. The best decision I made was to participate in LSVT BIG, a program developed to specifically address the movement impairments for Parkinson’s patients.

LSVT BIG first caught my attention when I stopped by their booth at the Parkinson’s Unity walk in 2013. I spoke with a representative, gathered up pamphlets, and decided this was something that would be very beneficial to me. Unfortunately, the motivation to commit faded after the walk. Last year my neurologist reminded me of the program and suggested I give it a try. I resorted to my endless list of excuses – it was too far to drive, gas was too expensive, four days a week for six weeks was too much of a commitment, my dog would miss me…

Then one day something made me finally pick up the phone and call the Nayden Rehabilitation Clinic in Storrs, CT where LSVT was offered. I was invited to attend an informational session to learn more about the program and how it works. I attended the session and left knowing this was something I had to pursue. No more lame excuses!

After my first day, I knew the impact this would have on me. One of the best things about this program was working one-on-one with a trained LSVT therapist. I always felt somewhat intimidated and self-conscious joining exercise programs because sometimes I was the only Parkinson’s patient. I had a tendency for moving in the wrong direction and knocking people over. With LSVT, I didn’t have to worry about that. I was able to work with an amazingly wonderful physical therapist, Christina Colon-Somenza, who immediately made me feel comfortable. She motivated me and changed not only the way I move, but also the way I think about PD. The program is so simple – a combination of seven individual exercises and walking – yet it is so effective. The program also focuses on improving daily tasks like taking money out of my wallet and sliding into a booth at a restaurant. I was shown new techniques to accomplish these things much easier.

Ultimately, LSVT changes the way you think about moving. The focus is to take big steps, look up, and stand straight which are things my body no longer does naturally. LSVT showed me there is a way to change this. After four weeks in the program I watched myself walk down a corridor at the clinic. I saw someone in the mirror I hadn’t seen in a very long time. The woman I saw was walking straight and tall. She looked, dare I say, normal.

At my next follow-up appointment with my neurologist after I had completed LSVT, when it came time for her to observe my movement, I told her she better sit down because she won’t believe what she’s about to see. She watched me walk up and down the hall and when I finished she simply said, “Amazing.”

It has been months since I completed this program and I can still hear Christina’s voice in my head every day telling me to take big steps, look up, shoulders back! Instead of becoming frustrated and having to ask for help all the time, I can now accomplish much more by myself. For those of you out there reading this not sure if LSVT could benefit you, I say this: Get off your couch, stop making excuses (gas is cheap these days!), and find a LSVT therapist near you!  You have nothing to lose and oh so much to gain.

Doreen Erasmus
Deen’s Day Trippers


In speaking with Dr. Cynthia Fox, co-founder of LSVT, she provided the following list of questions she suggests you ask when interviewing a clinician for LSVT BIG or LSVT LOUD:

  • How many LSVT LOUD/LSVT BIG clients have you treated?
  • What are your typical outcomes?
  • Do you have a follow-up/maintenance plan for your clients?
  • Is your LSVT LOUD/LSVT BIG Certification current?
  • Do you deliver the gold standard dosage of LSVT LOUD/LSVT BIG?  (4 days a week for 4 weeks, individual 60 minute sessions, with daily homework and carryover assignments)

For more information on LSVT Global, call 1-888-438-5788 or visit their website www.lsvtglobal.com.

Lifelong Journey as a Care Partner

Friday, November 7th, 2014

by Edna Ball, Care Partner and Co-founder, Team Parkinson

Edna and John Ball

Edna and John Ball

When I was 11 years old my mother was diagnosed with Parkinson’s disease (PD) at the age of 48, and so began what was to become my life long journey as a care partner. My mother lived with PD for 37 years. I also married a man who after our 10 year anniversary was diagnosed with the same disease. My husband now has had PD for over 40 years.

When this journey first began the term for me, and thousands of others, was caregiver. In recent years the term has evolved to care partner. This is a really important distinction because to achieve the most success, a working partnership is essential.

Over all these years I have learned some valuable lessons. The most important is that open and honest communication is vital. None of us are mind readers, and it is crucial for both the care partner and the person with PD, to have the freedom to express themselves without fear of hurt feelings. Walking on eggshells all the time in fear of stressing the other out is even more stressful than getting feelings off one’s chest and then dealing with the issues at hand. And stress is bad for all concerned. Honesty, mixed with kindness and compassion, is key.

It is also extremely important to take care of your own physical, mental and emotional health so that you can be fully present in the care of your loved one. Sometimes that means taking a break from the day-to-day grind. And that in turn might mean asking for help. Asking for help when you need it, without guilt, is one of the smartest things you can do. Surround yourself with family and friends who can chip in when needed.

Educate yourself about the disease, participate in support groups but don’t go overboard and don’t let PD become an obsession that robs you of all the good things you can and should still enjoy. Read about the latest research up to a point, accompany your loved one on doctor’s visits, and keep a current list of medications with you. Do whatever is necessary to stay on top of things, to be prepared and thereby to reduce your own level of stress on a daily basis.

John-Edna

John Ball with wife and care partner, Edna — at the Parkinson’s Unity Walk representing Team Parkinson

But always remember that not everything in the health of your loved one is about Parkinson’s. There is the normal aging process that visits all of us, care partners included, and it’s good to remember that and not get bogged down thinking everything is the fault of PD. And remind your loved one of that too as you work together on this mutual path to a better and easier existence.

If you practice mutual respect and maintain a sense of humor, life with Parkinson’s disease will be easier. 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.

You can learn more about Edna Ball’s journey as a caregiver and her work with Team Parkinson, via Team Parkinson’s website team-parkinson.org.