My dad, Geoffrey Lewis, was diagnosed with Parkinson’s

disease (PD) in 2011, after suffering a heart attack. Before his passing in 2015, I was his care coordinator and spent a lot of time with him on our family property in Los Angeles, where he lived with me and some of my siblings.

Prior to his PD diagnosis, not only was Dad a very busy actor with countless movie and television roles, he was also very active physically; he liked boxing and hiking and he worked out pretty consistently. Dad was also very

funny and extremely witty. And while Parkinson’s robbed him of some of those qualities and activities, Dad was very philosophical about it.

He and I talked about this often. Together we figured out how to understand his growing limitations as not being the loss of his body, but the opportunity to embody a new character. We meditated together on what we called “relative inabilities” – that all of us, regardless of health, have only a small range of what we can do, and that joy and value are in doing what you can with what you have.

He was always very romantic about human potential and self-actualization. It was a profound life lesson for both of us to truly reach for this goal through the window of his condition. It helped him as he was living with PD and nearing the end of his life. And it helped me as I’m at the beginning of mine. It not only shapes how I think today, but how I live and work as an artist.

While Parkinson’s and some dementia limited his movement and ability to remember or communicate as quickly as he once did, he never lost his playful, witty personality or his positive outlook. He actually played with his inabilities, turned them into his shtick and used them as an art form. Doing this was a solace for him and it allowed him to think of himself as a contributor to the family, particularly during family dinners. Family meant everything to him.

The Role of a LifetimeBy Miles Lewis

(continued pg 6)

Geoffrey and Miles Lewis

...All of us, regardless of health, have only a small range of what we can do,

and that joy and value are in doing what you can

with what you have.

VOICEFEBRUARY 2017

www.parkinson.org

Great People to be Around 2

The Parkinson’s Moon Shot 3

I Help People Navigate Change 4

Honoring a Life of Service 5

I Want What I Started to Continue After I’m Gone 6

Making Hope Bloom 8

Team Hope™ Endurance Events 8

Our membership campaign is underway. Your support makes life better for people living with Parkinson’s today! You will help us fight Parkinson’s harder this year with even more innovative research and services that change lives.

Please renew your membership now, so that every person with Parkinson’s can live their best possible life today and have hope for tomorrow.

MEMBERSHIP MAKES LIFE BETTER

Please visit www.Parkinson.org/membership to renew your membership.

I started volunteering for the National Parkinson Foundation

(NPF) about five years ago. I have a friend who was diagnosed with Parkinson’s disease (PD), so I decided to get involved. With lots of help, I started and chaired the first Moving Day® Boston event. And it all took off from there.

Once I started working with NPF, I simply wanted to continue being around these wonderful people as much as possible! They are truly amazing folks with an infectious passion for what they do to help the Parkinson’s community.

I have a development and fundraising background, so I felt I could help in these areas. I’ve remained involved in Moving Day® Boston, while also serving on the

Development Committee and helping with special event planning.

We just finished hosting a very successful wine tasting event called, “Wines on the Bay.” One of the members of our board of directors came up with the idea. The event featured a live auction and an online auction of excellent wines, dinners and tours, and it raised $180,000 for NPF.

In addition to the incredible people I get to work with, one of the things that continues to draw me to this organization is their impeccable stewardship. They are extremely careful with every dollar donated and every hour volunteered.

Everyone involved with the National Parkinson Foundation is very considerate of your time and

treasure. They are sincerely and truly grateful. Which in turn, makes me grateful to be part of such a great organization and eager to do even more to help.

I encourage anyone with a willing heart and helpful hands to get involved. Find your local Moving Day® event and see for yourself.

I guarantee that once you start working with the amazing people who are part of this incredible organization, like me, you’ll want to be around them more and more!

To find a Moving Day® event near you, visit NPFMovingDay.org

Left to Right: Rich Ledson, Wendy Berger, Sara Teeter, Guido Goldman, Barbara Silverman, John Kozyak, John Lehr

Great People to be Around By Wendy Berger

MEMBER NUMBER: MEMBER SINCE:

Bel ieve in Bet ter2017 MEMBER

MRS. MARY B. SMITH

1234567890 2017

2 www.parkinson.org

PARKINSON’S FOUNDATION BOARD OF DIRECTORS

John W. Kozyak, Esq. ChairHoward Morgan Vice ChairGregory Romero SecretaryMarshall R. Burack, Esq. Assistant Secretary Alberto Dosal Treasurer Stephen Ackerman Assistant Treasurer

Andrew B. Albert Constance W. Atwell, Ph.D.J. Gordon Beckham, Jr.Karen Elizabeth Burke, M.D., Ph.D.Alessandro Di Rocco, M.D.G. Pennington Egbert IIIStanley Fahn, M.D.Richard FieldGuido Goldman, Ph.D.Stephanie GoldmanArlene LevineMindy McIlroy

Robert M. MelzerGail MilhousMichael S. Okun, M.D.Timothy A. Pedley, M.D.

John L. Lehr, Chief Executive Officer

The Parkinson’s Moon ShotBy Peter Schmidt, Ph.D., Senior Vice President, Chief Mission Officer

There was something amazing about the Apollo program

and the national unity that came with a shared objective to achieve something remarkable for all of humanity. The first landing on the moon was an event watched by people around the world, an American program that represented a “giant leap for mankind.”

Many people are talking about our work to understand the brain as the “moon shot” for the 21st century. This apt description for an initiative that still seems impossible to many — can we truly ever comprehend the mind? — is a metaphor packed with implications. We should pattern our efforts to end the burden of Parkinson’s disease on the space program of the 1960’s, for reasons much deeper than the wish to achieve goals, as President Kennedy said, “…not because they are easy but because they are hard.”

The space program reached the moon but it was not a “moon shot.” The space program combined research (the study of the unknown) with engineering (the application of what we know) to achieve things never before accomplished. To land two astronauts on the moon, there were first six Mercury and ten Gemini missions, followed by eight Apollo missions—all before Apollo 11’s Eagle lander touched down at Tranquility Base.

This is very much like our research: We conduct trial after trial, each one advancing our knowledge another step. People may not have recognized what made Gemini 11

different from Gemini 9, or why Apollo 10 sent its lunar module to within ten miles of touchdown on the moon’s surface and never landed, but each mission yielded new information on how to proceed.

Parkinson’s research is following a similar course. We test medications first in petri dishes or animals

before trying them in humans, just as the NASA engineers tested their rockets without astronauts before risking human lives. Just as each space

mission probed the boundaries of our knowledge, each clinical trial pushes the boundaries of our understanding of Parkinson’s. On the way to the moon, NASA also pioneered battery-operated tools, memory foam, and joystick controllers.

Parkinson’s research is also pushing ahead the frontiers of knowledge. Parkinson’s is a complex disease that benefits from comprehensive care. And the team care model developed by the National Parkinson Foundation (NPF) has since been incorporated into Harvard’s medical school curriculum.

A failed gene therapy trial inspired one researcher to explore how the

placebo effect genuinely helped people with Parkinson’s. Studies of deep brain stimulation have helped scientists better understand how the brain works. And studies of rare genes that cause Parkinson’s have helped us to understand the mechanisms that get Parkinson’s started in people, even if they don’t have that gene.

Just as NASA gave us Velcro, cordless tools, and communications satellites long before reaching the moon, Parkinson’s research is yielding treatments and advances that are helping people live a better life right now, even though we can’t yet stop the disease.

As a “mission controller” for Parkinson’s research, I am focused first on what I can do to help people with Parkinson’s live well and stay safe today, while the knowledge we gain in the process sets the stage for tomorrow’s advances.

Just as with the Apollo program, a focus on what we can do today is not just a nice way to make lives better, but a prerequisite for future advances. That’s why for NPF’s research programs, our goal is to drive improvement every day.

If we continue to work together, each of us doing our part, whether it’s conducting research, providing care or counsel, or donating time or money, then we too will one day be able to make our own giant leap for all mankind and finally end this disease.

The question each of us needs to ask is, what can I do today to help us get there?

Peter Schmidt, Ph.D.

Helpl ine 1-800-4PD-INFO 3

I’m the Outreach Coordinator for the National Parkinson Foundation

Center of Excellence at Vanderbilt University Medical Center. Yes, that is a lot to fit on my business card. As coordinator, I meet with people who are newly diagnosed with Parkinson’s disease (PD), as well as those who have been living with the disease and find themselves with new questions or concerns.

Currently, I’m the coordinator of NPF’s Registry Study, which we have been involved with for the past six years. This study is part of NPF’s Parkinson’s Outcomes Project to determine what works best in treatment and care with a goal toward slowing the impact of the disease. As part of the study patients complete a quality of life questionnaire. Their responses provide a unique opportunity to understand the impact of symptoms for each person.

Slowness and stiffness can sometimes be better understood as difficulty with buttons and shoelaces, which is one of the questions asked. Patients also get an idea of the variety of ways Parkinson’s can affect their life. This allows me to help patients understand “their” disease, how medications can help, and ultimately how to better manage their symptoms.

I also coordinate three local monthly support groups: an education program that covers healthy living and ways to create a care team, a caregiver support group, and a patient support group—which allows patients to share their struggles and network

with others who are dealing with the same issues.

In addition, there are twenty support groups in our three-state area that I remain in contact with and whose issues I address either directly or by finding speakers to address specific concerns and needs. I also provide community education for both patients and professionals through public speaking and an annual Parkinson Disease Symposium. It is with the support of the National Parkinson Foundation that I am able to provide this outreach to the community and also support local Parkinson disease exercise programs including dance, Feldenkrais, and Rock Steady Boxing.

As I have traveled to support groups and interacted with patients over the years, my understanding of Parkinson’s disease has evolved. One of the things I’ve come to see is that with the diagnosis of PD there will be a grief process. Helping patients address their feelings can be the key to living well with the disease.

Because of the slow progression of Parkinson’s and the effectiveness of dopamine replacement, patients may not see the need for education, exercise and outreach. However, it is in the early stages that some basic education and an exercise program can be most important. Although symptoms will vary for each patient, there are certain recommendations that I make even for newly-diagnosed patients: exercise, drink plenty of water, and add fiber to your diet.

Making changes with PD is complicated. Although change is difficult for anyone, with PD it is especially hard as it is also a reminder of the disease. Medication management, exercise, and education will improve the quality of life but they are not a cure. This is where a team can help. A movement disorder specialist will recommend changes that will address the symptoms, but an outreach program provides services that help the people find helpful resources and cope with the challenges of the disease.

Although my days are full, with the support I have from NPF—the networking annual conferences and availability of resources—I am able to meet the challenges.

Usually when people ask me about NPF, they want to talk about a cure. But I remind them that even though we don’t yet have a cure, we can significantly improve the quality of life right now for people with Parkinson’s. Each Center of Excellence is dedicated to providing the best care through a comprehensive approach that includes the whole person and addresses the full range of PD symptoms.

I Help People Navigate ChangeBy Kelly Arney

Kelly Arney

4 www.parkinson.org

My stepfather was diagnosed with Parkinson’s disease (PD)

in the early 2000s. Not only was he my dad, we also worked together. I got to see up close and personal what Parkinson’s did to him as I witnessed his physical decline. It was all extremely difficult for him and everyone who loved him.

In 2010, my son, Gordon III, who plays professional baseball and was with the Chicago White Sox, had an agent with connections to the National Parkinson Foundation (NPF). Inspired by his agent’s involvement, Gordon began working with NPF by participating in a campaign called, “Out of the Park for Parkinson’s,” which helped promote awareness for the foundation in Chicago and ultimately led to my own involvement as an NPF board member and my participation in events like Moving Day® Chicago and other fundraisers.

One of a board member’s responsibilities is to raise funds to support the mission. I had created several teams for our local Moving Day events over the years and had raised a fair amount of money. But when NPF’s Board Chairman, John Kozyak, began asking the board to become more involved, I started thinking about different fundraising ideas.

One such idea began to come together in early 2015. It was to hold a dinner in honor of Herschel Bloom, a greatly admired and highly respected member of the Atlanta community, who has also been living with PD for about ten years.

Over the years, Herschel, who is now in his 70s, has done so much for so many individuals, worthy causes, and philanthropic organizations in Atlanta and across the country. But he had never been publicly recognized. I wanted to change that, while also drawing meaningful attention to PD.

That was easier said than done. Herschel is very modest. So getting him to agree to being honored in such a public way was no easy task. Thus began a year or so of courting, with my wife and I selling the idea to Herschel and Rita, his wife.

This all changed when a mutual friend let me know that Senator Johnny Isakson, Georgia’s senior Republican senator, was interested in helping NPF and doing whatever he could to bring attention to PD. The senator had just gone public about his own battle with Parkinson’s disease.

When I met with Senator Isakson, who also knows Herschel, I told him about our idea to honor Herschel and raise money for NPF, and of Herschel’s resistance to such a public tribute. Knowing Herschel,

Senator Isakson chuckled and told me to tell Herschel that if he agreed to be honored, the senator would agree to speak at the event. I then called Herschel and let him know about the senator’s enticing proposal. Well, that did it. He finally agreed.

We are now in the planning stages of what we’re calling, the “Power over Parkinson’s” fundraising dinner, which will be held in Atlanta in April 2017. The response has been extraordinary. We’ve had scores of significant commitments from people Herschel has touched personally, professionally and as a baseball coach.

Herschel recently retired from one of the most prominent law firms in the country, and he has been a bench coach for more than 15 years for a traveling youth baseball team in Atlanta called the East Cobb Yankees, perhaps the most accomplished farm team in the United States.

Every single player who participated on the East Cobb Yankees as an 18 year-old has either been drafted by a major league baseball team or has received an athletic scholarship offer from a Division 1 college. Herschel personally coached and mentored these talented young men, including my son, and at least ten others who are currently on active professional rosters.

Ultimately, what I want this event to achieve is greater awareness and understanding of PD. We need to bring national and international awareness of this disease to a

Honoring a Life of ServiceBy Gordon Beckham

Left to Right (Back): Sully, Gwen, Gordon III, Margaret McCamish, Gordon, Grace, Hank McCamish (Front)

(continued pg 6)

Helpline 1-800-4PD-INFO 5

level of knowledge and understanding equal to cancer, diabetes and heart disease. So much progress has been made in research and treatments for these other diseases because of the attention and funding they receive.

I believe the “Power over Parkinson’s” event is a big step in this direction and other events like it will go a long way to bringing PD closer to the front of our national consciousness, where it belongs.

The money we raise at this event will not only help to make life better for people living with Parkinson’s disease today, it will also help provide the most important benefit of all… hope for the future.

The “Power over Parkinson’s” dinner honoring Herschel Bloom will be held on April 29, 2017 at the Ritz Carlton, Buckhead, Atlanta. For more information: www.parkinson.org/poweroverparksinsons or contact Sara Teeter at rsvp@parkinson.org, or call 405-537-9951.

Your abundant compassion and generosity this past year will enable us to do even more to help people living with Parkinson’s today.

Because of you we can:

• BuildonourresearchtobetterunderstandParkinson’s disease and treatments

• Expandnationwideprogramsandservicesthatmake life better for people living with Parkinson’s

• Continueastheleadingprovideroffreelife-changing information and support at every stage of the disease

You help us fund the research and work that makes life better for people with Parkinson’s.

NPF + YOU = BETTER LIVESOUR GOAL WAS $1.5 MILLION AND

YOU GAVE $1,554,595.

THANK YOU FOR YOUR PARTNERSHIP!

Honoring a Life of Service cont. from pg 5

The Role of a LIfetime cont. from pg 1

Dad made a conscious effort to be an encourager to other people, particularly his kids. He and I would spend a lot of time together in my art studio. And he’d often ask me to text my seven siblings with touching notes of love and encouragement. He said he wanted to be a sender of cute notes. He really was a tender guy who became even more so as he got older. He wanted to be a service to other people by becoming a beacon of positivity.

Although that wasn’t always the case. There was definitely a transition phase for my dad, particularly when he could no longer write. Writing was a big part of his life. And when he could

no longer do it, he had a period of feeling like a failure and wrestled with some suicidal thoughts as he wondered, “What’s the point?” But he worked through it.

I think his career as an actor helped with this. As a character actor, he played all sorts of people and, as a result, had very strong experiences of feeling out-of-body, of literally becoming someone else. I think this was a skill he could draw on. In a way, he was playing another role—a man with Parkinson’s.

The National Parkinson Foundation (NPF) was important to both of us. To my dad, it was a valued resource for information and insights about ways to live with his Parkinson’s. For me, I grew to understand and

appreciate that NPF is very much at the forefront of personalized medicine. And my family and I now hold a fundraiser for NPF in my dad’s honor every summer.

Miles Lewis’ painting of his father

6 www.parkinson.org

As a person with young-onset Parkinson’s disease (YOPD), I’m like most other people my age who’ve been diagnosed… I never thought it would be me. I thought it would always be “someone else” who would share their life with a progressive, incurable neurological disorder.

So let’s get this out of the way… It sucks having Parkinson’s. I know it and you know it. But I can’t change the fact that I have Parkinson’s. The only thing I can change is how I choose to live with it.

When initially dealing with my diagnosis, it took me some time to move from resignation to acceptance. I didn’t spend too much time in denial, but the journey to acceptance admittedly took some time.

The National Parkinson Foundation (NPF) played a very significant role in helping me with this transition. I needed real, accurate, reliable information. I needed information about a variety of elements of the disease. I needed to talk. I needed to listen. So I called the free NPF Helpline.

When I called there was a calming voice filled with compassion and understanding at the other end of the phone. The person I spoke with listened to me and heard me, felt my pain and confusion, but was not afraid of either. I was directed to resources I didn’t know existed, and was given ideas that I had not considered.

The ability to connect with a knowledgeable and compassionate person in this manner continues to

be a gift throughout this journey. And NPF makes this gift available to not only people with Parkinson’s, but to caregivers, friends, and family.

NPF is a source of help and hope. They are not only dedicated to funding the research needed to create a world free of this disease, but also equally committed to improving the daily lives of people with Parkinson’s in every way possible, until that day comes when PD is eradicated.

This is why I support NPF; why I have volunteered my time, and why I have decided to include the National Parkinson’s Foundation in my Will.

I am very active in my local Parkinson’s community, and I mentor people with Parkinson’s all over the world. Volunteering, in my opinion, is a very important responsibility and privilege for people with Parkinson’s, especially while we are still able to give of our time to the PD community. Time is a precious commodity. At this stage in my life, I can always go make another dollar, but I’ll never be able to make another minute.

The concept of giving back has been important to me since I was a teenager. When I am no longer on this planet to actively volunteer, it pleases me greatly to know that my planned gift to NPF will continue the legacy I started.

There’s a reason why I feel the need for my identity to remain anonymous. I cannot “come out” as the author of this article or in my professional life because I do not believe the general public

has an accurate understanding of Parkinson’s.

This lack of understanding, along with blatant disability discrimination, leads me to believe that I will not be seen as who I am and for what I’ve accomplished. I will instead be defined by my disease by my colleagues as I continue my active work life.

I am confident that this will one day change. And this is also why I support NPF. They are dedicated to educating the world about Parkinson’s and fighting for the rights of people living with it.

Since my diagnosis, I have learned that I am not defined by what I do. I am defined by how and why I do what I do. If someone came to me with a magic wand and offered to take away my Parkinson’s, the only way I’d accept is if I could maintain all that I have learned on the journey.

NPF has been an integral part of that journey. If this is also true for you or someone you love, then consider adding NPF to your will or another type of planned gift.

Donating to NPF means you are making a direct difference in the lives of people with Parkinson’s, their caregivers, families, and loved ones.

NPF is making a difference in my life. So I want to make a difference in theirs, now and long after I’m gone.

For more information on planned giving, please contact Amy Gray at 305-537-9906 or at agray@parkinson.org.

I Want What I Started to Continue After I’m GoneBy Anonymous

Helpline 1-800-4PD-INFO 7

APRIL 30 Big Sur International Marathon — Big Sur, CA

MAY 7 U.S. Bank OC Marathon, Half Marathon & 5K — Newport Beach, CA

OCTOBER 8 Bank of America Chicago Marathon — Chicago, IL 22 Marine Corps Marathon — Washington, DC

NOVEMBER 5 TCS New York City Marathon — New York, NY

Get involved and support these upcoming TeamHope™ endurance events:

Making Hope BloomBy Joyce Tracy

As I sit in my sunroom looking out at my garden, I am

reminded that one day crocuses will pop their heads out of the snow to tell us that spring is on the way. Each plant takes its turn in the garden – some are emerging from the ground while others have begun to bloom and still others have yet to germinate. Some plants are tall and strong, but will need to be supported to weather the coming storms and strong winds.

I am like this garden. But this year will be different for me since I have recently been diagnosed with Parkinson’s disease (PD). How will Parkinson’s now fit into my garden of life? Will I continue to be the strong person I have always been? As I researched this new stranger in my garden, I learned that there is no cure for Parkinson’s and there are many different faces to this condition.

By working with my doctor, conducting research, and talking with others who are also living with Parkinson’s, I have found a program that works best for me. In addition to taking my medications, I also take chair yoga classes, which help with my balance and ability to relax. Massage therapy also has a positive effect.

These things have helped me grow in response to my Parkinson’s. My family and friends have also been a great support system. They have come together to form a beautiful bouquet to help make my world a better place.

Since I was diagnosed, I have wanted to give back and help raise funds to develop a cure and make a better life right now for those living with Parkinson’s. So when I recently read about a “Zero Mile Fun Run,” I thought that is my kind of race. I realized I could invite my friends to donate money to support NPF by not running!

On Saturday, October 17, 2015, we held our first “Zero Mile Fun Run” and raised more than $6,000 for Parkinson’s. And just this past October, our “Second Annual Zero Mile Fun Run” raised over $12,000! I never knew fundraising would be so much fun!

What is a “Zero Mile Fun Run” and could it work for you? Our event starts with a light breakfast and fellowship. We have live music, demonstrations of yoga and Rock Steady Boxing, and a literature booth sponsored by the National Parkinson Foundation (NPF). We all walk under the “Fun Run” banner and just like that… we are finished.

It is an enjoyable event that educates the community and brings together people who want to help beat this disease. And it’s simple enough to work for anyone!

I have tried to approach my Parkinson’s with a sense of humor and that is why having a “Zero Mile Fun Run” appealed to me. Aside from joining Team Hope™ for Parkinson’s, I recently started boxing with the Rock Steady program, where I’ve met a group of courageous people who are fighting Parkinson’s and never ask “why me?”

Parkinson’s is giving me the opportunity to work with an amazing group of fighters at the NPF, and to witness incredible love and support of my family and friends.

Working together, we can make a difference, and make hope bloom!

Joyce Tracy

8 www.parkinson.org