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LSVT BIG – A Personal Experience

March 23rd, 2015 by Guest Blogger

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 …

DoreenErasmus-blog-photo

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.

Lights! Camera! Action!

February 16th, 2015 by Helaine Isaacs, Event Director

PCL1_TeamMcMossBLOG
The premiere episode of Parkinson’s CHAMP Live! on “PUW TV” was posted on our website in February and featured Team McMoss. It’s been five years since the Parkinson’s Unity Walk started featuring a Parkinson’s CHAMP each month on our website and we’ve decided it’s time to go “live.” Our walkers will continue to tell their stories but now you’ll actually get to hear their voices  out loud, rather than reading what they have to say.

We hope that listening to other walkers will remind you that you are not alone and there is an entire community supporting you in your fight against PD.

Our Parkinson’s CHAMPs represent a cross section of the Unity Walk. Some are new to the Walk; others have participated over the years. What they share is an appreciation of the sense of community that is created when thousands of people gather all committed to the same goal – finding new therapies and hopefully, one day, a cure for Parkinson’s disease.

Exercise and Parkinson’s: A Winning Combination

February 8th, 2015 by Helaine Isaacs, Event Director

There’s growing evidence that regular exercise may hold benefits for people living with Parkinson’s disease. This past week, Shots, NPR’s health news blog, published an article discussing the positive impact exercise has had on Parkinson’s patients. Click here to hear the piece that played on NPR.

Rock Steady Boxing at Gleason's Gym in New York City

Rock Steady Boxing at Gleason’s Gym in New York City

One of the programs featured in NPR’s piece was Rock Steady Boxing. This exercise regimen was created to improve the quality of life for people living with Parkinson’s disease through non-contact, boxing inspired fitness training. It started in Indianapolis and is now offered throughout the country. We extend our thanks to Marlene Kahan, a longstanding participant in the Unity Walk, for introducing us to the Rock Steady Boxing program in NYC. As a result of this introduction, we are pleased to announce that they will be providing a demonstration on the Bandshell stage at this year’s Unity Walk.

Other types of exercise featured on NPR include Tai Chi, weightlifting, cycling, drumming and dancing. You’ll be hearing more in the weeks to come from our walkers about the ways that they are doing their best to stay active and healthy.

What’s the best exercise that you can do if you are living with Parkinson’s disease? It’s the exercise that you WILL do.

Create Your Own Winning Fundraiser and Watch It Develop into an Annual Event!

February 3rd, 2015 by Helaine Isaacs, Event Director

Team-Rossi-soup-for-the-souZumbathon-and-Pasta-for-Par
This is the perfect time to start planning your fundraising event on behalf of the Parkinson’s Unity Walk. We’re just starting to hear from several of our teams to let us know that they are re-creating their successful fundraisers from last year.

Some examples are Team Rossi’s 2nd Annual Community Nights at Blue Moon Café and their 3rd Annual Zumbathon, Debina’s Dream’s 3rd Annual Volley for a Cure and 2nd Annual Soup for the Soul; Deen’s Daytrippers’ 2nd Annual Pasta for Parkinson’s; and the 3rd Annual Alabama Parkinson’s Fighter Walk.

No need to recreate the wheel! Do you see the word ANNUAL in each of those fundraiser titles? None of these walkers necessarily intended to do these events each year when they planned the first one but once they came up with their winning formula, they’ve decided to go with a sure thing. Many of these events have become a reunion of sorts and something the team’s supporters look forward to each year.

Talk to your team members. Together, brainstorm to come up with your own “winning formula.” Looking for ideas? Check out the Fundraising Event Ideas A-Z and the Parkinson’s CHAMP in Action page on our website. This is where we highlight the fundraisers our walkers create to raise funds for research. More tools are available on the Your Fundraising Events page and we’re only a phone call away if you want to discuss any of your fundraising ideas.

Look forward to hearing from you soon with your “winning formula” fundraising ideas.

I Know a Guy Who Knows a Guy…

January 21st, 2015 by Helaine Isaacs, Event Director

IKnowaGuy

Anyone who has watched the  critically-acclaimed series Breaking Bad remembers the criminal attorney, Saul Goodman and his infamous line, “I know a guy who knows a guy.” Saul’s network was significantly more unsavory than mine or yours but like Saul, we all tap into our network regularly. Sometimes, we need to be mindful of who is in our network and the resources that are available to us.

I recently had lunch with one of our walkers. We’ve had many conversations before – about her team, her mom and her extended family but I never knew where she worked. It turns out that she works for the Digital Media group of a major magazine publishing corporation that produces content for some of the leading brands in the industry.  Once we got to talking, we both realized that she potentially has the ability to have one of the magazine’s websites do a story on Parkinson’s disease during Parkinson’s Awareness Month. At the very least, she can ask.

In speaking with Fran Berkowitz, one of our walkers who lives near our office in New Jersey, I came to learn that her son, Ron owns Berk Communications, a public relations firm in New York City. We reached out to Ron and we are grateful that he has generously offered the services of his PR firm on a pro bono basis to help promote the 2015 Unity Walk. He is committed to doing what he can to support the Unity Walk. Offering his firm’s expertise is within the realm of what he can do. It turns out that the staff member in his firm assigned to the Walk has a grandmother who is living with Parkinson’s disease. She is bringing her passion for the cause in addition to her expertise.

The vendor we use to purchase the PUW t-shirts each year was in our office not that long ago. Casually, in conversation she mentioned that she knows the Chief Administrative Officer of Rite Aid. I immediately asked if she would be willing to introduce us to him. Based on that introduction, the Rite Aid Foundation is generously donating 11,000 water bottles for distribution at the Unity Walk.

These are just a few examples of how we’ve tapped into our network to benefit the Walk. We encourage you to do the same. Be mindful of who is in your network and how they might be able to support the Unity Walk. Yes, it’s about making a donation but there are many additional ways that individuals you know can provide their support. Think about where they work, who they know, their connections in their community, etc. People, who care about you and your loved ones, want to be helpful. Sometimes, they just need to be asked. Who knows, they just may know a guy who knows the right guy to make a positive difference.

PS – For your viewing pleasure, Better Call Saul premieres on February 8th and 9th on AMC.