• Archives

  • Categories

  • Register

  • Doante

  • signup

  • UW-blog-apps-badge

  • puw2015

Archive for the ‘Exercise’ Category

LSVT BIG – A Personal Experience

Monday, March 23rd, 2015

(March 23, 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.

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

 

Incorporating Parkinson’s Exercise Into Fundraisers

Friday, September 5th, 2014

Exercise is healthy for everyone and research has shown that regular exercise can make a significant difference in improving the quality of life for those living with Parkinson’s disease. What’s the best kind of exercise? It’s the exercise you’ll actually do!

A number of our walkers have decided to incorporate exercise into their fundraisers on behalf of the Unity Walk. The range of options are only limited by your interests. Here are just a few examples.

Team Rossi’s Zumbathon

Zumbathon2014web1
Vanessa MacNeal first participated in the Unity Walk in 2012, shortly after she was diagnosed with Parkinson’s disease. Encouraged by the support of her friends and family, she wanted to create a fundraiser in the fall to keep the momentum going after April’s Walk. She enjoyed Zumba and thought it might be a good idea for her fundraiser. All she had to do was ask and the response was a resounding “YES” Her friend who is a Zumba instructor agreed to lead the class, her pastor allowed her to use space in her church at no charge, and a friend lent her a professional grade sound equipment.

Vanessa wondered if anyone would come and was overjoyed when friends, family, neighbors, and friends of friends, all started coming through the door. They brought with them their generosity and their willingness to have fun. The music was pumping and people were smiling. Vanessa was proud to see so many people participating. The event was such a success that Team Rossi’s second annual Zumbathon was held the following fall and is now an annual tradition.

Debina’s Dream’s Volley for a Cure

Volley-for-a-cure-1

Put together a supportive and caring staff with a bit of a competitive spirit and you’ve got the makings for Debina’s Dream’s Volley for a Cure. When Debbie Flamini, the school secretary announced that she’d been diagnosed with Parkinson’s disease and was planning to participate in the Unity Walk, the wheels started turning. What started out as a few people suggesting a Volleyball Game Fundraiser between the 5th and 6th grade staff, quickly grew to something much bigger! When word got out, a committee was formed, and the entire staff (over 100 employees) volunteered to donate food, play volleyball and work the event. The event, held in the gym at the Hartford School in Mt. Laurel, NJ for the past three years, has become an annual tradition.

According to Debbie, “Having a fundraiser is so much more than raising money. It’s also more than raising awareness. It is the most powerful way for anyone with Parkinson’s to feel all the love and support that is likely there for you. All you have to do is ask.”

Team Kohan’s Play for Parkinson’s

Team-Kohan-web
Jeff and Denise Kohan are an integral part of their community — they still have school age children and spend much of their time taking their kids from one sports activity to the next. It occurred to them that they could create a fundraiser by partnering with the town’s baseball/softball league. With the support of the Hillsdale’s Recreation Director and President of the Baseball and Softball Association, “Play for Parkinson’s” was created! It included a 3-inning single elimination tournament for younger children and a homerun derby for the older ones. There were sponsor donations, event t-shirts, decorations on the field and lots of food followed by an event at the town swim club. Over 250 children participated!

The Kohans met so many people from their town and heard many stories of those who have been or are affected by Parkinson’s disease. Everyone was so supportive and Team Kohan’s event went a long way to raising awareness as well as raising funds for Parkinson’s research. Denise states that “Hillsdale, NJ is a small town with a big heart.” That may be the case but their level of support is a reflection of their strong connection to the Kohan family.

PUW Sends a Shout Out to Team Parkinson!!

Wednesday, May 14th, 2014

DSC00187_crop(May 14, 2014) – Team Parkinson, a strong supporter of the Parkinson’s Unity Walk, raised over $106,000 at the recent ASICS LA Marathon. A portion of these funds is donated to the Unity Walk. PUW is grateful to Team Parkinson for their continued support of the Walk. We wish them every success as they turn their sights to the San Francisco Marathon scheduled for July 27th.

Way to go TP!

Helaine Isaacs
PUW Event Director

Yoga and Parkinson’s: A Healing Path for Every Side

Tuesday, March 25th, 2014

We are sometimes asked “What is the best exercise for a person living with Parkinson’s disease?” The answer – the exercise you will actually do. For some people, it is yoga. I first met Renee Le Verrier several years ago at a Young Onset Parkinson’s Disease conference  in Providence, RI. I was amazed at how she transformed the room while leading a chair yoga class for people living with Parkinson’s disease. We are grateful to Renee for sharing the impact that yoga has had on her life and her Parkinson’s disease.

Renee Le Verrier, RYT, is a certified yoga teacher and author of Yoga for Movement Disorders:  Rebuilding Strength, Balance and Flexibility for Parkinson’s and Dystonia (book and DVD). She teaches at Massachusetts General Hospital’s Parkinson’s Yoga and Lecture Series, Whittier Rehabilitation Hospital’s stroke rehabilitation program. Renee also collaborates with the MA Chapter APDA and TriYoga Boston in offering a five-day certificate program for yoga teachers who want to learn how to work with students with Parkinson’s. For more information, please visit http://www.limyoga.com/.

Helaine Isaacs
PUW Event Director

DSC_2301I stumbled in to my first yoga class, literally, when I was in my 30s. I didn’t notice the half-step up and I entered the quiet space with an aayee, whoop, and oof. Embarrassed, I tugged my hoodie around my reddening face. Though my left side moved slowly and felt uncoordinated – the result of a childhood stroke – I’d never quite gotten used to the limp, the stumbles.

When I snuck a peek around the room, I discovered that no one seemed bothered by my noisy, clumsy interruption. A peacefulness lingered in the room.

The teacher led us through poses and I felt my body absorb both the movement and the calm around me. Sore muscles softened, my breathing had a rhythm to it. Even a bit of the residual hypertonia and imbalance in my left arm and leg released. I felt taller.

The biggest surprise came as I realized that my mind relaxed, too. All that brain chatter – mental to-do lists, a review of the morning’s appointments in my head, automatic self-correcting (those should’ves and could’ves, as in: should’ve seen that step) – hushed. Even the song lyric that had replayed itself over and over for the past three days was gone. Yoga had led my mind from planning ahead, thinking back, judging myself. It guided me to the only moment that there really is: the one happening now. I felt free.

mod1childMy Parkinson’s diagnosis occurred after a decade of practicing yoga. I’d started to stumble because my right side moved slowly and felt uncoordinated. Thoughts rushed into my brain: What will happen? How will I manage? Can someone please help me open this jar? I was 42 and I was running out of sides.

Parkinson’s provided plenty of opportunities to stumble and to worry about the future and yearn for what was.  Yoga helped ease the physical struggles by making me stronger and more flexible. It also calmed the emotional struggles because it continued to guide me along the path to the center within me.

I decided to spread the good word about yoga for Parkinson’s while I was attending physical therapy sessions early after my diagnosis. In that six-week program, I worked with therapists in the pool, socialized with fellow patients during lunch, attended counseling sessions. There was a bit of almost everything therapeutic. The one thing missing, I commented at one point, was yoga. As engaging as the rehab was, no one session linked body and mind, providing that freeing sense of well-being, of being in the moment.

I still remember the look the OT gave me when I said that. She gazed across the table, raised her eyebrows and with a dramatic blink, tilted her head and stared wide-eyed at me. What she said without saying a word was: What are you going to do about that? Can you think of anyone who knows yoga and knows what it’s like to live inside a movement disorder body? Um, I remember thinking. Me? Within the week, I had registered for teacher training. That was seven years, countless classes, and a published book ago.

When I stumbled into that first yoga class, I stumbled into something bigger than an approach to movement. I discovered that I do have another side. In addition to my left and my right, there is a healing, centering side: my inside.

Renee Le Verrier

Beating Parkinson’s Disease One Step at a Time from Walking the Dog to the NYC Marathon

Tuesday, February 25th, 2014

I first met John Ryan on the plaza of the Today Show the morning before the Unity Walk in 2011. He joined our group along with his daughter and brother to help promote the Walk. John has not stopped raising awareness and funds for Parkinson’s research since then and more recently, he hasn’t stopped running. Each person’s path along their Parkinson’s journey is different. John has found the one that is working for him.
Helaine Isaacs
PUW Event Director

JR CelebratesI was diagnosed with Young Onset Parkinson’s disease in the spring of 2010 after noticing symptoms that affected my motor skills on the right side of my body. It took some time to digest this news. After about six months, I took my first steps to taking back control of my life from this disease. I participated in the 2011 Parkinson’s Unity Walk to meet others in the Parkinson’s community, as well as try to get more information about treatments and research. It was at the Team Parkinson booth that I met John and Edna Ball. I told them I had been recently diagnosed and they asked me “What exercise are you currently doing?” My reply – “I walk the dog twice a day.” To which, they smiled and shook their heads. “If you are going to stay healthy and control this disease, you need to do vigorous exercise and sweat a lot!” I took that advice to heart and began jogging short distances the next weekend and have not slowed down since.

I was never an athletic individual but not really out of shape. As I began running, I realized that my body, which had become so stiff with muscle rigidity, was actually becoming loose again and my tremors were reduced. Running was becoming the best medicine for what ailed me! So I figured the longer I run, the better I would feel. I entered my first 5K (3.1 miles) race that summer and although it wasn’t the prettiest run……. I finished!!!  And I enjoyed it! I continued to run in local 5K races in my community and joined Team Fox, the fundraising arm of The Michael J. Fox Foundation for Parkinson’s Research.

Team Fox Rocks 5Team Fox and my friends in the Parkinson’s community have inspired me to push harder and go farther. In 2012 and 2013, I was inspired enough to register for the New York City Half Marathon (13.2 miles). For me, this was the epitome of my journey! I had gone the distance twice, raised thousands of dollars for research, and had created awareness for Parkinson’s  disease through various media and social media outlets. I had accomplished what I had wanted to do with this activity. That was until my running partner asked me the inevitable question, “Why stop here???  Go for the marathon!!!”  At that point, the challenge was issued on a feat that I never thought was possible, for I was not a runner. But now I realize that I AM a runner and a fighter!!!
John Ryan photo no MJFF logo
I began training for the 2013 NYC Marathon (26.2 miles) this past May (six months prior to the race). The support I received from fellow runners and the PD community over that six month period was overwhelming and heartfelt. I decided to run the entire race together with a group of friends that we called “The Team Fox 5.” We made a pact – we start this race together and we finish this race together; we do this as a team to finish Parkinson’s disease. It was truly an amazing day that I will cherish for my entire life. The funny thing I realized when I finished was that it was more emotionally draining for me than physically draining. The love and support I received from friends, family, and the cheering people of NYC along the marathon route inspired me to carry on to the finish.

Michael J. Fox has a quote that I say as I begin each day, “We only can’t, if we don’t.”  Go out there and be an active participant in your life!!! Running a marathon is not for everybody but if there is something you have always wanted to accomplish – go out there and do it. Do not let the beast known as Parkinson’s guide your destiny in life. Go out there and be active – active in your physical and mental activity and active for the Parkinson’s community.  We can change the course of this disease for the millions if we all put some skin in the game. Become an active agent for change by getting involved in one way or another.

John Ryan
Team Captain, Team Ryan’s Hope