Unity Talk Comments from Aidekman and Iverson

Ken Aidekman’s introduction

When I went to Washington in 1994 to advocate for Parkinson’s I really didn’t know if I had anything to contribute. But, one thing I did know that as a group, we had to stay focused on our goals and consolidate our voices into a unified message if we wanted to get the job done.

There were quite a few strong-willed and emotional leaders in our group. Each had a powerful personal story. Sometimes enthusiasm and a desire to have one’s own strategy prevail made it difficult to achieve anything. I decided that the best use of my time was to continually remind my fellow advocates that we needed to concentrate on those goals we shared and place them above our personal agendas.

Besides differences between the individual advocates, there were differences between the major national Parkinson’s organizations. At one point the three biggest organizations employed three different “lobbyists”, each with their own priorities and strategies. Looking back, we were quite fortunate that we were able to compromise, forge a consensus and work together on a unified plan.

I met Margot Zobel at the first Parkinson’s Action Network Advocacy Forum. She was planning a walk in Central Park to raise funds for research and increase awareness about Parkinson’s. I told her immediately that I was in.

Margot and I found ourselves in sync regarding the need to build community among people with Parkinson’s. To further that effort we planned to invite the major PD groups to participate in the walk and receive the funds we raised. The walk would be all about unity. We felt so strongly about it that we eventually made “Unity” the walk’s middle name.

Judging by the title of today’s presentation “When the Curtain Rises: Hope, Community and the Human Spirit,” it’s safe to say that Dave Iverson is also in synch with Margot’s thinking on the value of community in PD.

I don’t really know Dave Iverson that well. His bio says he’s a writer, director and independent producer. But, that could be anyone in California, right? Okay, maybe that’s just Southern California.

Dave came to the attention of the Parkinson’s community when his documentary “My Father, My Brother and Me” was shown on the PBS series Frontline. He is an accomplished journalist, correspondent and a wonderful moderator. I know he’s a great journalist because he immediately recognized that the story of people with Parkinson’s putting on a public dance recital in Brooklyn would make a fascinating documentary.

I viewed an early cut of “Capturing Grace” at this year’s World Parkinson Congress in Montreal and I was blown away. It is inspiring, not just because it shows people with Parkinson’s dancing beautifully, but because it also captures the lives of its characters with simple honesty and dignity. It shows their daily challenges, their struggles and their victories. I’m so proud of everyone who has been involved in this project. It couldn’t happen to a more deserving group.

“Hope, Community and the Human Spirit.” Dave’s topic is so positive and uplifting that I figure the only way to compliment it is to start you off with the total opposite. So, let’s take the Wayback machine to a dairy farm in Irvington, New Jersey in the late 1920s. It was there my grandfather, Harry Aidekman, first learned he had Parkinson’s.

This was forty years before L-Dopa was commonly used to treat symptoms. Back then there was no “Off and On”. There was only “Off”. From the time of his diagnosis until his passing in the early 1940s Harry was “Off”.

L-Dopa was not around, but there were “cures”. One cure involved fasting on nothing but orange juice for several weeks. It didn’t help, but then it didn’t hurt either.

With another cure the patient was told to hold onto a metal rod attached to a machine. The machine was plugged into an outlet and turned on. This produced a powerful electric current, which coursed through the entire body. This cure didn’t work either, but it hurt like Hell.

Harry was once a big, strong man who did back-breaking work on his dairy farm. Now his wife and children took on the chores while he lay helpless and frozen in bed. When the family could no longer care for him at home they brought him to the Jewish Sanatorium for Incurables in Brooklyn, New York.

When my Dad was diagnosed with Parkinson’s in 1975 his thoughts turned back to an oft repeated scene: his father calling out his name for help as he lay immobile in bed. There was nothing to be done. My father’s guilt about his inability to help made his own experience with PD particularly difficult. I was fortunate that medicine had progressed to a point where I was able to do more for my father than he could for his.

L-Dopa therapy has worked miracles for people with Parkinson’s, but it has not taught us how to overcome the apathy, depression and isolation that generally accompany PD. Medicine helps, but it can only go so far.

Luckily, we still have a few tricks up our sleeves. Among them are community, exercise, therapy, dance and art. These are qualities all of us can share. Dave Iverson has filmed our friends making the most of their ‘secret weapons’ against PD and in so doing he has given us all hope, hope that is inherent in our common humanity.

 

Dave Iverson’s presentation

Parkinson’s disease came into my life exactly 42 years ago … the fall of 1971 when I got a letter from my Mom telling me my Dad had been diagnosed … I didn’t even know what the word meant … I had to look it up in the dictionary … But I was 22 and I had no idea then how central that definition would become in my life … a definition that first applied to my Dad … and then to my brother …and then eight years ago to me.

I’ll always remember one thing about the day I got the diagnosis … My doctor  put me through those tests we all know and love … and at the end of it he said …I think you have Parkinson’s. Later that day …still someone dazed by the news …I got on a san Francisco street car and moments later it came to a sudden stop … we all staggered forward and in that moment I looked up and who did I see but my doctor … who looked across with a wry smile and said “Remember …it’s about balance … it’s all about balance.”

I still think about that from time to time … because of course Parkinson’s is all about balance … and I thought about it again when we started making this film because dance is all about balance too  … And when I say balance I don’t just mean physical balance …I mean emotional balance too … because when you have Parkinson’s …  you need something that steadies you  … you need a reservoir of emotional well-being that you can call upon when Parkinson’s throws things out of kilter  …and it seems to me you need that same reservoir of calm and confidence to not be overwhelmed a David Leventhal teaches you the intricacies of Four Saints  ….you need to hold steady … you need to be gutsy enough to believe it’s all going to work out …

At first the idea that people with Parkinson’s would take up dance seems sort of outlandish …you have a movement disorder and you’re going to do what? Yet as many in this room have experienced ….and many of us were privileged to witness …somehow the twin challenges of dance and PD become aligned in some mysterious way. I’m not sure anyone really understand what happens when the music starts and the dancing begins, but of course that’s part of what drew me to wanting to tell this story … this unlikely alliance …. This challenging journey … I wanted to follow along the best I could …. I wanted to know what would happen when the curtain finally rose and this remarkable group stepped out onto a new stage.  

The film begins with the line “Parkinson’s is a disease where things go missing from steady hand to sureness of step.” I wrote that line because I’ve come to think of Parkinson’s as a disease of subtraction. So to me the question then became, if Parkinson’s takes away, what does dance restore? For starters I think when you add dance into your life … you’re doing just that …you’re adding … and with a disease of subtraction, adding something back counts. And what’s added …it seems to me …is both an individual challenge and a collective one … when you dance you’re not dancing alone …and being in it together brings the power and the complications of higher math. Communities are messy … they’re fraught with complexity… and they require … here are those words again … balance and hope … I think that addition is fundamentally harder than subtraction …in some ways the disease has it easy … it just takes stuff away …but adding back … fighting back …both as an individual and as a group is harder … it takes more work to add than it does to give in to subtraction …and it takes faith …you have to believe that all the work is worth it …that the plus sign can trump the minus.

And part of what defines the power of addition is attitude …and so I want to show you two more clips from the film that profile people who personify that particular attribute. … The first is Charlie Tobey … to me Charlie’s approach to life can be summed up in a conversation I had with once that went like this:

Me: Charlie, how are you doing?

Charlie: Well compared to five years ago not so hot …but compared to five minutes ago, I’m doing great.

But no matter how positive you are, that doesn’t mean there aren’t challenges. Struggle is always part of any new venture …Doubt …anxiety … misgivings … that story is told in the film too. But here again what was so striking to me how people responded to adversity … and to me one couple personified that … and  for those of you who know them, it won’t surprise you that I’m referring to Bobbye and Reggie Butts.

There were many memorable moments in filming this story … but one that has stayed with me in particular is what happened a few nights before the performance.  It was the final rehearsal before the actual dress rehearsal and the performance itself …and what happened that night to me epitomized the power of community … what happens when one by one each person adds to the whole  …. And you wind up with something remarkable

In describing that improvisational dance Charlie says each person hands the next person a gift … and then that person does something to make it another gift … and then passes it on once more …

Last Sunday I ran in the New York Marathon to raise money for the Michael J. Fox Foundation for Parkinson’s research … I did it because I believe in that organization   … but I also did it because I’ve been inspired by so many people who have Parkinson’s including so many in this room … I ran because of that community … and when I ran I had company …three of my best friends ran with me … … they’re only tie to Parkinson’s is me … all joining in the same effort to raise money for Parkinson’s research and yet they were out there on a blustery cold November day raising money for Parkinson’s research  … two men …two women … we were old and slow …but we lumbered along for all 26-point-2. After the race was over one of my friends  told me that a few weeks earlier her 93 year old mother had told her about how her own father …my friend’s grandfather …  had run in a 60 mile relay race in 1919 … my friend’s mother no longer had the medal but when she learned her daughter was running in the marathon   … she went to work and at the age of 93 she created a replica medal of the one my friend’s grandfather had won back in 1919 … she gave it to her daughter so that she could tuck it inside her pocket when she ran last Sunday … and then my friend told me that wasn’t the only thing that went with her on the run …. She told me she’d written my name on a piece of paper and tucked it inside her pocket alongside the medal … she wanted to honor her grandfather she said …and she wanted to run for me. It was an extraordinary gift  … one I will always treasure … but then I must also do what Charlie said … I must pass that gift on to another.  And that is how addition beats subtraction.

Almost exactly one year ago …each of you took hope to the stage and passed on that gift to everyone there …

Parkinson’s is a disease where things go missing … a steady hand …a sure step … Parkinson’s claims them one by one … But it hasn’t claimed you … and that is the answer to the question I posed at the beginning of my remarks … If Parkinson’s is a disease where things go missing what does dance restore?  The answer I think is staring at us in the mirror …what’s restored when we take on these challenges as a community …whether they’re on the stage or not … is who we are.

As most of know … four months after the performance … Reggie Butts passed away … So I want to leave you by quoting something he says during the film … and that also appear on screen at the very end. “When the dance class starts …he said … there are no patients …they’re only dancers.

To work on this film was the greatest story telling privilege of my life … and my greatest hope is that it tells that story …your story …as well as it deserves to be told.