If you know a Parkinson's CHAMP please contact us. We would love to hear about them. View our Top 50 Teams from 2012.
May 2013 - Team Monaco
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Ten years ago my left hand began to shake. I thought nothing of it until my head began to shake, too. I was diagnosed with Essential Tremor Disorder and immediately began medication to control - not cure - these tremors.
In April, 2012 my symptoms began to change. Everything began to tremor uncontrollably. My neurologist had me take a DATScan. The results from the DATScan indicated Parkinson's disease.
My life changed in August, 2012. I began reading all about Parkinson's disease on the internet and started to gather information about this disease. I wondered why it was called a disease since I am not contagious. It was then that I came upon the Unity Walk.
I am a high school teacher and when I went back to work in September, my Principal announced that every Learning Center would participate in a community service project. I had the perfect one - the Unity Walk. I immediately created Team Monaco and registered all of my students on my team as well as some other students, family, and friends. Little did I know how fast my team would grow – 272 registered walkers!
My co-worker came up with the idea of "Pens for Parkinson's" and when I presented it to my students, they jumped at the idea. Lo and behold, our fundraising campaign began. Not only did we sell pens, we provided silver ribbons for everyone to wear to represent what we were doing. We also displayed the letters “P U W” outside my classroom to represent people who supported the Parkinson's Unity Walk by purchasing pens.
Not all of my students were aware of my condition. Those who did know would sometimes ask me questions. I am very proud of them for educating themselves about this disease. A couple of weeks before the Walk, I told the rest of my students that I have Parkinson's disease. There were hugs, tears, and concerns. It boosted our fundraising efforts and gave new meaning to this endeavor.
Fast forward to the day of the Unity Walk on April 27th. We planned to meet at the Staten Island Ferry at 7:15am. While driving to the Ferry, several thoughts and emotions were stirring. I thought to myself, "Will my team show up?" "It's so early for us to meet at 7:15 a.m. at the Ferry." "I will be so disappointed if nobody shows up."
As I walked into the Ferry terminal there they were.......Team Monaco...........Blue shirts everywhere!!!!! At 7:15 a.m. on a Saturday morning!!!!!
I was overwhelmed by the appearance of my team waiting for me in the Ferry terminal. We greeted each other with hugs and “good mornings.” We got on the 7:30 Ferry and basically took over the boat by the vastness of our team.
Our train ride up to Central Park was quiet. Everyone was tired and I was just taking in the fact that everyone showed up. I felt so proud of my team.
Commuters on the subway were asking where we were headed with our blue shirts that had “Parkinson's Unity Walk” on the front. I was filled with pride as my team said boldly, "We are headed to Central Park for the Parkinson's Unity Walk."
I just smiled from ear to ear. As we approached Central Park, our energy and enthusiasm were building.
We couldn't wait to get into the park and "get ready" for the Walk. I have to admit that I had moments during the Walk where I felt that I did not have Parkinson's disease and that I was walking for everyone else. My students were respectful and kind to everyone which made me even more proud. I was thrilled to be walking with my family, my students, their parents, former students, my Assistant Principal, colleagues, and members of my synagogue.
For the past 23 years I have been a high school teacher, and this was the best lesson I ever taught my students.
We look forward to walking again next year.
Rachael Monaco
Team Captain, Team Monaco
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April 2013 - Don's Darlings
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Don’s Darlings - A Small Team, From the Smallest State (Since 2005!)
In 2005, the daughters of Don Belt decided to join the Parkinson’s Unity Walk in New York City after hearing about it at an APDA Rhode Island meeting. Our dad, who had always said he would work until he was 75, was diagnosed with Parkinson’s disease when he was 64 and retired a year later. Dad (and Mom) were great role models for us. They were life-long learners with a strong family AND community connection. We grew up giving back and joining the PUW was just one more step in that process.
That first year, we had no idea what we were in for. We had all done local 20-mile walks when we were growing up for a variety of good causes but being in New York City took things to another level. The teams, their spirit, and the enormity of the event all amazed us! The booths, celebrities, signs, swag, and endless line of people; this was something big!
We returned again the following year, this time prepared. We had matching shirts and jackets. Our little team of four was in the top 50 fund raising teams! As we did the year before, we called our parents while we were walking, trying to share with them our experience. They were active in the Parkinson’s community in Rhode Island but being in New York City and seeing all the lives that are affected was something we were not able to adequately share with them in words during that phone call or with our many pictures.
Our Don passed away on March 1, 2007, opening the door for Don’s biggest darling, our mom, to join us. We continually lose her on Margot Zobel Way. She stops at every booth, talks to every vendor, and even though our Don is gone, she is continually gathering information to bring back to the Rhode Island Parkinson’s community.
Don’s Darlings continue to come to New York City for the Unity Walk. We walk to honor all the good times and what he taught us in his 79 years on this earth. We walk to remember all the challenges that came with Parkinson’s. We walk to spend time together as a family. We walk to feel the overwhelming sense of community with other families. We walk in gratitude for all who are working to find a cure. We walk so that our government knows this is an important issue. We walk in hopes of someday meeting one of Dad’s idols, Michael J. Fox, to thank him for the huge positive impact he has had in raising awareness of Parkinson’s disease. We walk to support others still doing battle with this disease, so that they get that sense of hope and knowing that they are not alone. We walk for a cure so that families in the future will only hear stories about what living with Parkinson’s was like.
Team Don’s Darlings
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March 2013 - We Walk for Mo
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WE WALK FOR MO
People told me that I would find love again. I did not believe them. I was thrilled when I met and fell in love with a 49 year old tall good looking attorney named Maurice Miller with the ability to sympathize, empathize and make me supremely happy. Between the two of us, we had five children, all grown with lives of their own. After four years, we decided to get married in 2006. A big step. Life couldn't have been more fulfilling.
Then, one evening four months after we had gotten married, I noticed his arm resting on the pillow. His fingers had a tremor. Having heard about my paternal grandmother’s Parkinson's disease all my life, I felt a jolt to my mind and immediately said to him, you have Parkinson's. He scoffed at my statement but several neurologists later, the diagnosis was made. Here is the odd part. My brother had just been diagnosed with bladder cancer which would prove to be fatal. Somehow, Parkinson's disease in its early stages didn't seem that bad. Compared to cancer, PD seemed like a walk in the park. My brave husband, who had been experiencing other symptoms that he had not complained about (slowness, stiffness, muscle cramps, handwriting and voice changes) quietly accepted his diagnosis and supported my brother and the family through my brother’s illness and subsequent death two years later. Maurice rarely talked about his PD with others. It was his silent struggle and no one really focused on him. As for me, I did my research on the internet, and read many articles and books. I experienced real fear about the future, worrying about the disease's progression, medication side effects and what it would mean in my life. It was a helpless feeling.
My husband was lucky, if you can call it that. His progression of symptoms was slow. He was also fortunate that he had a friend with PD. Marlene and Maurice shared their experiences, symptoms, medical care and physician advice. It was from Marlene that we learned about the Parkinson's Unity Walk. How marvelous we thought - a chance to raise awareness and money for “The Cause!”
I decided to get involved. The year was 2009 and the team, We Walk For Mo was born. An e-mail was sent to our closest and dearest friends and family, and some business associates. Money was raised. A group formed. Most important of all, Maurice realized that his challenges were being recognized. People were coming together for him. I saw a change in him - a brightening of expression, an appreciation that others were supporting him, realizing that he actually had PD. He no longer had to sit quietly with his struggle. He was in the forefront and people were joining the fight. He was no longer alone. At the 2009 Unity Walk, our team numbering about twenty, proudly walked the two mile walk with Maurice smack dab in the middle of the group. He crossed the Finish line in victory with arms raised! We were all so proud. Maurice was beaming. I felt exhilarated. I had done something. PD was the enemy and I had raised an army. Well, I wasn't retreating. I pushed on. 2010, 2011, 2012...We Walk For Mo got bigger each year. More money was raised than the year before. Last year we raised $5000. This year we hope to raise even more.
Maurice's symptoms have worsened. He is working part time from home; commuting to Manhattan being too much for him. Medication levels have gone up. Side effects have to be addressed and controlled. He has good days and bad days. My fears have not gone away. They are still here. But on one day each year, one day in April, there is a walk, the Parkinson's Unity Walk, and on that day, we are alive. We are exhilarated. We are special. We are supported. We are doing something. We feel the love and we feel we can conquer this challenge. We pray for medications that succeed. We pray for a cure. We go on. We go on together. We can't wait to get started for 2013. We hope to see you there.
Nancy Isserlis
Team Captain, We Walk For Mo
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February 2013 - Debbie's Darlings
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For many years, Parkinson’s disease was only a memory. My father had been stricken in the 1970s and suffered greatly. I knew the ravages of the disease but had given it little thought for decades. When I felt my toes curling and a buzzing sensation in my leg while caring for my 95-year-old mother ten years ago, my first thought – and quite honestly fear – was that it was Parkinson’s. My doctor found no evidence of PD. However, the symptoms persisted and it soon became difficult to walk. I received my diagnosis in 2005.
Since then, I have taken a proactive approach to living with Parkinson’s. My medications enable me to continue with an active lifestyle, including visiting with friends, enjoying my grandchildren, book clubs, exercise and regular outings to local restaurants and the movies. An important component of my post-diagnosis life includes participating in the Parkinson’s community. I attend a support group and volunteer for clinical trials that could lead to treatments to ease symptoms and maybe even find a cure. It is not a journey that I chose to make, but I am grateful for support I have received and hope that my efforts help others coping with this disease.
There is no bigger or better display of the Parkinson’s community coming together than the Unity Walk. I found out about the Walk by chance: a glimpse of a brochure while on a routine trip to the dry cleaners in 2006. Originally, it was going to just be my husband Bob and me participating. However, at the last minute some dear friends said that they wanted to come too. The following year, our team—now dubbed Debbie’s Darlings—grew exponentially. As the years passed, our group grew to include my four grandchildren, friends, and relatives – many of whom come in from out of town for the Walk. My children’s friends are usually present too. I know that it is important that my kids enjoy a strong support system as they help me battle this disease since it touches all of our lives. Over the years, we have raised close to $37,000. The Unity Walk has now become an annual event we eagerly anticipate where we come together with thousands in the Parkinson’s community. That community is important. I know that I am not alone in dealing with Parkinson’s. That experience of the larger community reminds me that, even on those days when I wake up and getting out of bed before my medication kicks in feels like a herculean feat, mine is not a solitary struggle.
The Unity Walk reminds me of the steely determination that doctors, drug companies and researchers are devoting to eradicating this disease. We walk a most meaningful mile to support them and each other. We walk for the hope that maybe one day in the near future we can all get together in Central Park for happier occasions. We walk so that one day Parkinson’s can be a memory.
Debbie Pomeranz
Team Captain, Debbie’s Darlings
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January 2013 - Marilyn Lamendola - Remembering Our Own
Marilyn Lamendola (fourth from the right in photo) died peacefully at home with her family on December 13, 2012. With her diagnosis of Young Onset Parkinson’s Disease in 1994, Marilyn became a tireless advocate for those living with Parkinson’s Disease. She was the founding captain of “Team Rhode Island” and for the past several years has attended the Unity Walk with her family as “A Walking Team from Rhode Island Since 1997.”
As a life-long resident of Rhode Island, she was the first person to arrange an out-of-state bus trip to attend the Walk, back when it had merely 500 participants. This began Marilyn’s close friendship with Margot Zobel, the Walk’s founder, as they worked towards the shared objective of unifying the Parkinson’s community across the country in an effort to build awareness and to find a cure.
In recognition of Marilyn’s contributions to the Parkinson’s community, she was selected as the recipient of the Alan Bonander Humanitarian Award in 1998. Marilyn’s team has raised close to $65,000 since 2002 to fund research. This is as far back as our records go so this amount does not reflect money raised prior to 2002. She always provided the Walk staff with feedback about her experience and challenged us to think outside the box. Marilyn was instrumental in growing Rhode Island’s state-wide APDA chapter into a vibrant support organization with its own Walk-a-Thon.
Marilyn is survived by Richard, her husband of 39 years, and her eight children, all of whom have attended the Walk throughout the years. Recently, she was thrilled to enjoy her days in Central Park with her granddaughters Molly and Lucy. Her daughter Linda has run the Los Angeles Marathon for the past three years in support of Team Parkinson. Marilyn was continually supported by her parents, her sister Kathy and her extended family.
Sixteen years ago, finding this community to join meant the world to Marilyn. She forged invaluable friendships that gave strength and hope to herself, her family and everyone she knew. Her family will forever cherish the memories created in Central Park and their participation will continue in support of her advocacy for Parkinson’s awareness.
Marilyn said that when you can start something from nothing, be a part of it, and then step away to watch it grow – that is success. Today, the Walk continues to grow and offers support to many more families like Marilyn’s. We thank her for her dedication, endurance and enthusiasm to further Parkinson’s Awareness and we will remember Marilyn as we prepare to join together in April for the 19th Annual Parkinson’s Unity Walk.
For more information, visit the team page of A RI Team since 1997.
We will miss her dearly.
The Parkinson’s Unity Walk Staff
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December 2012 - Team "Boot Scoot & Boogie"
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My husband, Pierre was first diagnosed with Parkinson’s disease in May of 2011. Both Pierre and I had noticed changes in his behavior and demeanor over some months but chalked it up to his transition into retirement. In April however, while visiting our three children (Eric, Leigh and Sophie), they too noticed that Daddy was not himself. After comparing their notes, they did some on-line research and thought that Pierre may be showing symptoms of Parkinson’s disease. They actually did an “intervention”.
Our daughter, Leigh called to say that the three of them agreed that Pierre needed to see a doctor immediately. We saw our internist within days. He recommended an evaluation by a Movement Disorder specialist at Duke University near our home in Durham, NC, who confirmed our children’s suspicions that Pierre has PD.
We dove into researching this disease and all became very knowledgeable of the value of exercise in combination with a regimen of medication. Pierre took the “bull by the horns” and joined a Parkinson’s Support Group, attended classes, signed up for a pharmaceutical trial and read and shared everything he could find on this disease that had invaded his body. Later in the year, Sophie, who lives in NYC, remembered that she had supported the Unity Walk for a work colleague whose Dad also had Parkinson’s (Team Papa’s Rockin’ NJ Walkers) and suggested that we too could form a team of our own and walk in Central Park with this amazing, supportive group.
Our Team Captain, Sophie, set up Team Boot Scoot & Boogie, and what began as a “family” initiative soon grew to include not only family, but extended family and friends. We set a financial goal for the team and exceeded it by so much more than we could have imagined. The Unity Walk took place on Pierre’s 62nd birthday and we were overwhelmed by everyone who joined us. We numbered 28 including our 5 grandchildren, ages 5 years - 4 months! It was a perfect day, the atmosphere was electric; a joyful day filled with optimism for a cure. We were honored to have raised over $29,000 and become the Rookie Team of the year. We are so proud to be a part of this initiative especially knowing that 100% of the proceeds go to fund Parkinson’s research. We are so fortunate to have the love and support of our amazing children, grandchildren, extended family and dear friends. Pierre could not have asked for a more perfect birthday present. Team Boot Scoot & Boogie looks forward to leading the 2013 Walk and hopes to top our 2012 fundraising efforts.
Jocelyne Gervais
Team member, Team Boot Scoot & Boogie
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November 2012 - Team Shake Rattle and Roll
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My uncle, Larry Stratmann, was diagnosed with Parkinson’s disease about ten years ago. This came as a shock to our family, but Uncle Larry has never been a person to let adversity get in his way. He has continued doing the things in his life which have always been important to him, enjoying time with family and friends, always giving of his time to help whenever needed, and especially digging in his yard. He’s convinced his property had a blacksmith’s shop around the turn of the 18th century, and even found a colonial coin dated 1791!
The first step towards our Unity Walk journey began with a simple question from my then 7 year old son, Caleb. “Mom, what’s wrong with Uncle Larry?” I replied that he had Parkinson’s disease, which affects the nervous system and makes people lose control of their muscles. He quickly asked “Well, how do we fix him?” and I told him that there is currently no cure, but there are doctors and scientists working very hard to find one, but the research is very expensive. He immediately wanted to raise money to help his (great) Uncle Larry, and we started to look online for organizations which are involved with PD. We decided to raise funds on behalf of the Unity Walk because 100% of the money raised goes to the research needed to find a cure for Parkinson’s disease. In January we kicked off our efforts to support PD research with a goal set by Caleb of $2000, which seemed to me rather ambitious. I didn’t want to dampen his enthusiasm by saying anything at the time, but I wasn’t sure if we could achieve it.
Caleb was unstoppable. No matter whom we saw during the following weeks and months- family, friends, strangers, even the finance manager at the dealership when we bought a vehicle- he told them about his Uncle Larry who has PD and the fundraising we were doing for the Unity Walk. People were blown away by his determination and drive to help find a cure. His enthusiasm was contagious, and our team quickly grew to 14 people. We needed a team motto, so Caleb came up with ‘One step at a time’. He asked Uncle Larry to think of a team name, and it seemed to fit very well- ‘Team Shake Rattle and Roll.’ Caleb is the Team Captain.
The fundraising efforts went so much better than I had ever anticipated. I constantly checked our progress on the Unity Walk page, and we all (Caleb especially) were so excited when in March we surpassed the $2000 mark. By the time of the Unity Walk, we raised almost $4000! Caleb could not have been prouder of his team and his uncle, and we all were proud to walk with Uncle Larry and everyone that day who showed up to support Parkinson’s Disease research.
Kelly Maksim
Team Shake Rattle and Roll
I was touched with the gesture and very impressed that someone Caleb's age would inspire an entire family to raise money and participate in the Unity Walk. This meant taking off from school and work for some and traveling from Maryland, Virginia and West Virginia.
I was happy that I could participate and complete the Walk. I felt very supported by my family and friends and their desire to raise money to find a cure for PD disease and the impact PD has had on me personally. It was a wonderful day in Central Park, sharing the experience with my family and being among thousands all with the same common goal - a cure for PD.
Larry Stratmann
Team Shake Rattle and Roll
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October 2012 - Team Livin' La Levodopa
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| Team "Livin’ La Levodopa" is so large they needed two photos! | |
When my husband, Kevin was diagnosed with Parkinson’s disease in 2000, I felt compelled to do something more in our fight against this disease. By this time, Michael J. Fox had made his diagnosis known and I had heard him mention the Parkinson’s Unity Walk in an interview. I thought, “Who better to work with to change the future than Marty McFly?” After learning 100% of the money raised for the Unity Walk goes directly to research, I knew this was the “something more” I could do.
We started participating in the Walk in 2002 with three on our team. A lover of music and being the funny guy that he is, my husband dubbed us team “Livin’ La Levodopa.” Now, with friends, relatives and members of our Parkinson’s support group, there have been as many as 90 people walking with us!
The Parkinson’s Unity Walk has become a great tradition for our family and friends.
We gather in beautiful Central Park from MA, NH, NJ, NY, PA and as far away as WA. After the Walk, we regroup at a local Irish pub to unwind and visit. This year some of us made a weekend of it and took in a Broadway show. We like to have a good time!
Though we are among thousands at the Walk, we never feel lost in the crowd. There is nothing more inspiring than being surrounded by so many people all sharing in a common goal…raising awareness and funds for Parkinson’s research.
We have raised contributions through the generosity of family and friends. Additionally, when we turned 50, just three days apart, we celebrated by throwing ourselves a party and made it a Unity Walk fundraiser. We had a basket raffle, door prizes and a 50/50.
This year we are planning another fundraiser/party at the bowling alley where we had our first date 40 years ago! Since 2002, I am proud to say team “Livin’ La Levodopa” has raised a total of $100,000!
When we started this 11 years ago, we could never have imagined the level of success team “Livin’ La Levodopa” would experience. The ripple effect has been overwhelming! To have the love and support of OUR family and friends is a blessing, but to have the support of THEIR friends and THEIR families and coworkers has been amazing!
Our thanks go out to our team members and supporters, the organizers of the Unity Walk, the volunteers and the sponsors. We look forward to this day every year! The Parkinson’s Unity Walk has truly been a blessing in so many ways!
Susan Murray
Team Captain, Team “Livin’ La Levodopa”
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My husband, Mark was diagnosed with Parkinson’s in 1997 when he was 47 years old. Five years later, he was one of the first patients in Philadelphia to have DBS surgery…which absolutely gave him back a big chunk of his life.
For all the cruel, sad things that this disease has brought into our lives (and there have been many), it has also brought strength, love and laughter into our lives as well.
The strength….from participating in support groups for patients and their families…for joining together with others in the Unity Walk…from educating friends, loved ones and strangers to the ups and (many) downs of the disease.
The love…from family members who have “stepped up” to help when needed, and who back off when not…from neighbors and friends who “do” without asking…from new friends who have become dear friends (and who we walk with at the Unity Walk in New York’s Central Park every year for the past 6 or 7 years).
The laughter…keeping it real…putting it all in perspective…laughing at ourselves and with others…living each day, each month, each year knowing we are that much closer to finding a cure…and having the last, best laugh of all!
Bobbi Helms
Team member, Team “Livin’ La Levodopa”
I have been diagnosed with Parkinson's for seven years. Though I would prefer not having Parkinson’s disease (PD), I wouldn't give up the friendships my wife and I have made through my journey with Parkinson's for a clean bill of health. Every year I am humbled by the support of friends, family and coworkers at the Unity Walk. The support is unbelievable. Our group "Livin' La Levadopa" has become like a family. I love all of you. We will continue to fight for a cure. If it doesn't happen in my lifetime, I pray that our children will know Parkinson's as a disease of the past. See you at the 2013 Unity Walk!
Doug Nemeth
Team member, Team "Livin’ La Levodopa"
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September 2012 - Drowning PD
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My story starts very unremarkably. I was a young wife and mother, raising our three children, ages 2, 8, and 11. I was a stay at home mom, and piano teacher. I could do it all back then. I could cook dinner, teach a piano lesson, do the laundry, and nurse my baby all at the same time! Life was really good. We were a happy thriving family.
A little before 1990, something very dark started creeping into our lives. I didn’t know it at the time but that is when my PD symptoms started. They were very subtle, and insidious. In fact, other family members and friends noticed them way before I did.
Then I started feeling very depressed. I had never had a depressing day in my life. I was always known for my smile and my happy outlook on life. At the same time I began having difficulty using my right hand to brush my teeth, wash my hair, and manipulate things. I felt paralyzed and yet I shook all over. I could barely play the piano anymore, and people would ask what was wrong with me because I had a strange expression on my face. I thought for sure I was having a nervous breakdown. So, being an intelligent person, I went to a psychiatrist.
The psychiatrist told me that I had post-partum depression, and wanted to put me on meds and talk about my childhood. I really didn’t think that was the problem.
My mom suggested that maybe something physical was causing these symptoms. I saw my regular doctor who referred me to a neurologist, who told me “I see a little Parkinson’s.” I totally rejected that and stuck with my “nervous breakdown” self-made diagnosis. After all, Parkinson’s is an “old person’s” disease. He sent me out of his office with a prescription for Sinemet and an MRI. He just wanted me to try the medicine to see if it would help.
I immediately filled the prescription. In about 20 or 30 minutes, believe it or not, I felt normal. I felt like I hadn’t felt in months, maybe even a year or more. I was cured. All I had to do was take this medicine four times a day. I was so naïve, and still in denial. I was convinced I didn’t have PD, but for some reason this little blue pill worked for me. I went on like this for several months, but I started noticing fluctuations during the day.
Still in denial, I went for a second opinion to a movement disorder specialist. Perfect, I thought. He will know that I am just a nervous person who is having some difficulty and must know why this little blue pill works for nervous, depressed people. Unfortunately, that was not the scenario. After more cat scans and MRIs, he also determined that I had Parkinson’s. Not exactly what I wanted to hear.
The two big questions I asked were, “How did I get this?” and “What is my prognosis”? The neurologist replied - “We don’t know” and “You may be living with symptoms for 20 years as it slowly progresses, or you could be in a wheelchair in five years.” The latter prognosis was not acceptable to me. I was determined that I would learn to live with this disease with all I had within me and all the resources I could use. I did this for the sake of my family.
As time went by, it became inevitable that I came out of the “closet.” I could no longer hide the symptoms from others. Thanks to great doctors, changing therapeutic techniques, walking, exercise, yoga, staying active, and having the constant support of my family and friends who see me, not the disease, I actually feel better than I did twenty years ago. I don’t know how that is possible, other than perhaps a miracle and trusting in God to carry me through each day.
I am not saying that I don’t have really bad times when nothing works, and I am depressed, desperate, frozen, and shaky, but I always keep in mind that another day will come, and I will feel better. I also realize that I have a debilitating, degenerative neurological disease that is progressive. I still don‘t know what my future holds. Yet, I can be grateful for today. In the last 15 years, I attended the graduations of all our children, danced at their weddings, and welcomed the birth of our first grandchild.
What first brought me to the Unity Walk in 2007 was my growing acceptance of the fact that I had Parkinson’s disease. It was a great time in Central Park that year. We had a huge team of over 25 people, and raised over $7,000.00.
Over the past five years our team “Drowning PD” has gotten much smaller in numbers, but larger in donations. To date “Drowning PD” has raised over $20,000.00.
The Unity Walk gives my family and friends a chance to come together and show how much they care. Participating in the Walk has given me a sense of purpose and the chance to be proactive in raising funds and awareness.
The year 2012 was a very special year because our first grandchild, Nick at seventeen months old, walked with us! What a huge blessing that was.
At the Unity Walk I marvel over the love and sense of community that surrounds all of us. Amongst the hard realities of PD, there is so much joy present on this day. It feels like a celebration of those who are living with PD. They happen to be some of the most wonderful people, who don’t deserve this horrible disease. Yet, all of us are so loved by the people around us. You can see it in the faces of all the teams and their members, as well as the volunteers who donate their time and energy to this worthy cause.
The Unity Walk is a time to share stories and strategies, meet people, and gather new information. As long as I still have the ability to put one foot in front of the other, I will participate in the Unity Walk and continue to raise funds for Parkinson’s research. This is what the Unity Walk is all about.
As 2013 approaches, I look forward to getting my team together and hope to reach my new fund-raising goal of over $10,000.00 for 2013.
Ruth Drown
Team Captain, Drowning PD
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August 2012 - Team Frey
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The year 1988 will be a time our family remembers forever. Chester Frey, a husband, dad & grandfather was diagnosed with Parkinson’s disease.
A brave and courageous man, he has accepted Parkinson’s disease and has a renewed faith that God is in control. PapPap's amazing sense of humor exemplifies who he is as a person. If you ask him about his family he will be quick to tell you that, "he is the master of his empire."
Twenty four years later you will find him not dwelling on his inabilities to do things for himself, but appreciates all the love, help and support he receives from his loving wife and family.
He enjoys family get togethers, playing cards, sporting events and eating. He is an amazing man and "our hero."
To help make a difference, our family has been able to be a part of the Parkinson’s Unity Walk held in Central Park, New York for the last four years. A highlight of the Walk was when PapPap was able to stand up from his wheelchair and walk across the finish line. Exhausted but overjoyed, he experienced a huge accomplishment that was shared by our family.
No one on this earth knows what the future holds, but our hope as a family with a loved one battling Parkinson’s disease is that a cure will be found. Until then we will continue to give back to our PapPap the love and support he needs because of the "unconditional love" and "unbreakable bond" we have as a family.
We’ll be back at the Unity Walk in 2013!
Team Frey
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July 2012 - Team Marc-I-Am
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BUT THIS IS THE HAND THAT I SHOOT WITH
Believe me, if I had my druthers (where are my druthers, have you seen them?) I would prefer not to have Parkinson's disease, but along with the disabilities and inconveniences that we've all experienced, have come some positive results.
I am a fifty-five year old Attorney, who spent his first fifty years observing life from the "cheap seats." I was the first to stand on a soapbox (which often broke under the pressure of my weight), but in reality accomplished little.
What changed this? At forty-nine I was diagnosed with Parkinson's disease, and after a period of depression, I woke up one morning and realized that I was wasting my time. I observed a co-worker, younger than I, care for her husband with Alzheimer's disease. She did this with grace and dignity. She would talk to people about the disease, who would listen, but she never once complained. Along the way she had become an advocate for those suffering with Alzheimer's.
Who was I to complain? My life has been very easy. I have wonderful and supportive friends and family. I decided then that I would speak out about the disease, but never complain. Somebody always has it worse.
Just appreciating life was not enough. I wanted to pay it forward. I applied to “The People with Parkinson's Advisory Council" of the Parkinson's Disease Foundation. To my surprise, I was accepted. Here I have met wonderful, energetic people, some of whom have Parkinson's, some of whom are caretakers. When I meet with them, I feel optimistic and energized.
Around that same time, I decided to put together a team for the Parkinson's Unity Walk. Thus was born "Team Groucho Marc." Having had no experience with fundraising, I set a modest goal of $1,000.00. As usual, I severely underestimated my friends and family. I can't think of a family member or a friend that didn't come through. We even received donations from friends that I hadn't seen in nearly 40 years. That first year we received over $6,000.00 in donations.
One Saturday, in February, 2011, I was sitting at my desk, when I received a special e-mail and donation. Bob Nystrom, a star from the New York Islanders in the 1970's and 1980's wanted to join us at the Walk. Bob, it turns out, is friends with my physical therapist. They were discussing it and he asked to join. This was a thrill for me, having been a season ticket holder throughout his career.
He did not disappoint. We talked about Hockey, we talked about charity and we talked about fundraising. Bob said something that I shall try to always remember. He said that life has been very good to him, therefore he likes to pay it back.
More than 40 friends and family showed up that day. Many wearing the fake "Groucho nose and mustache" that I handed out.
In 2012 we changed the team name to "Team Marc-I-Am," in honor of my favorite poet, Dr. Seuss. I also raised the goal to $7,500.00. My friends and family came through again, by exceeding our goal.
I've always loved to write. I was blessed with a vivid and unusual imagination, which until recent years I had stifled. For my own enjoyment I started to write a "blog." I called it "Memoirs of a Disgruntled Attorney." It contained my offbeat stories and parodies. I soon started a second "blog," devoted strictly to Parkinson's. I called it "But this is the hand that I shoot with." One day I confused the two and the following emerged. I called it "Shaken Not Stirred."
Shaken not Stirred
I was asked for a poem about my plight.
After a short debate, I said alright.
Since you've asked for Poetry, Madam
I will try, said Marc-I -Am
My favorite poet was Dr. Seuss
So watch out now, I'm on the loose
Parkinson's may have slowed me down
But on my face. appears no frown
Limbaugh may think that we are fakin'.
I'll mix him a Martini, he'll see it's not stirred but shaken.
Buttons, Ties and Laces cause me trouble
And I'd prefer to skip a shave and have a stubble
My handwritten is unrecognizable
sloppy, shaky and barely sizeable.
But if you attempt to match me, word for word
I guarantee, you'll look absurd.
Don't waste your time with this endeavor.
My mind is just as sharp as ever
Just as it was, when I did start,
It's my second favorite body part.
I'm not fooling myself. I don't know what the future will hold. So, I've decided that I have a choice. I can wake up tomorrow depressed and with Parkinson's, or I can wake up optimistic and with Parkinson's. Since either way, the constant is Parkinson's, I'll choose optimism.
An event recently occurred in my life that enforced my optimism.
There I sat, in the Doctor's office, when a nurse with pigtails approached me. She was wearing a blue plaid dress and ruby red slippers she was closely followed by a little dog named Toto. She said that I looked fine, why did I want to see the doctor.
I said, "Fine? I have no dopamine."
She asked, "What would you do with dopamine, if you had some?”
I said "What would I do with dopamine if! had some? Well 1..." (I start singing)
"My legs would be like Towers,
I'd be able to smell the flowers.
I'd have a normal dream
And the baseballs I'd be catchin'
I might even get some action,
If I had some dopamine.
I would try to play the fiddle,
touch my toes, not just my middle
And walk and not have to scream."
(Nurse sings)
"With the way, you'd be a lookin’
you would really be a cookin'
If you had your dopamine"
(me)
"Oh I, would close my fly.
I'd remember that it zips.
On the dance floor, I'd remind you of the pips.
In the pool, I would do flips.
instead I stand here shakin',
no longer good at fakin'
I'm not part of the in scene
what happened then? I wonder
someone really stole my thunder
when they took my dopamine.
As my friend Bob, says, "Life has been good to me, it's time to pay it back."
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June 2012 - Team Movers and Shakers
I had never participated in any fund raising programs for any cause before this year’s Unity Walk. We donated to certain charities but I never tried to raise funds for them. We did not even allow our children to participate in school or 4-H club fund raisers. Instead, we sent in a check at the beginning of each year as a donation to the schools, as well as any clubs, marching bands, etc. our children belonged to. I did not want them calling on our neighbors who were getting the same requests from numerous other kids on the same block. So I never had fundraised before.
However, March was the one year anniversary of my going on disability and I am so grateful for all the help and support from the team at JFK Medical Center - Jackie Cristini, Dr. Hanna, Dr. Gupta and the PT staff - that I convinced myself to try. I was pleasantly surprised by the response.
I think it worth noting that since I had contacts overseas much of the money came from outside the United States and the largest amounts from Pakistan and Turkey. This hopefully reinforces to others that certain issues transcend political and religious differences.
I was not able to find our team for most of the Walk but had the pleasure of walking with Dr. Hanna and his lovely daughter. Whether they wanted it or not, they got a history lesson on NYC and Central Park in particular.
It was impressive to see the turnout for the Walk and how upbeat all involved were.
I have no high level inspirational motivation for raising money for the Unity Walk. Once I got involved, I simply reverted to my normal business personality and pursued donations very aggressively. I appreciate the donors who supported my fundraising efforts. As in most such circumstances, there were some big surprises - both in getting donations from those I least expected and also some omissions that were disappointing.
As I said, I was not motivated by some higher level of consciousness. My motivation was selfish. I do not like having PD and will fight to help get it cured plain and simple.
John Ferry
Team Movers and Shakers
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