My Father, My Brother, and Me

Producers' Forum

Video Stories - Watch short stories Dave Iverson and Michael Schwarz filmed over the past two years while making My Father, My Brother, and Me.

"Shoes on Again" -- What I've Learned

By David Iverson on January 30, 2009 6:50 AM | Comments (7)

Now that our film is available online and the broadcast premiere is just a few days away, I've been thinking a lot about my experiences over this past year and a half of production.  When I was taping an interview about the film for NPR's Fresh Air (to air on Monday or Tuesday afternoon), Terry Gross asked me what I'd learned along the way. In my last few posts, I'd like to reflect a little on that question.

One thing I've been struck with time and again is how people with Parkinson's still accomplish remarkable things. Of course I think of my brother Peter, who despite receiving a Parkinson's diagnosis while still in his forties, has gone on to publish more than a dozen books about American Indian history and has received numerous awards including a Guggenhem Fellowship. As Regents' Professor at Arizona State University, he's successfully guided more American Indian history PhD students to completion than anyone in the field. As he says, "It's my 38th year as a college teacher and I still think it's the best job in the world."

And I think of someone like Time Magazine columnist Michael Kinsley, whose acerbic wit and extraordinary writing talent make him one of the keenest observers of American life. If you see Mike Kinsley's name on the byline, it's worth reading. And of course there's Michael J. Fox who's probably done more than anyone to raise both the awareness and the dollars it takes to fight Parkinson's.  As Michael notes in the film, "Parkinson's has asked so much of me that I would never have asked of myself." Parkinson's may ask a lot, but nobody has responded quite like Michael J. Fox

But I also think about less well known people we met, like Tom and Madeleine Shearer, who personify perseverance, humor, adaptability and positive thinking. Tom has PD. He was once one of San Francisco's most accomplished tax attorneys and Madeleine had a career in medical publishing. Today they focus on more mundane challenges, like getting into a car or putting on your shoes. But it's Tom who articulates -- with three short words and a smile -- an attitude that perhaps best sums up how to face the future: "Shoes on again," he says as another day begins.

All of these individuals look forward with courage and determination. They inspire me. And it's been the great good fortune of those of us who worked on the film -- including my colleagues and friends: co-producer Michael Schwarz, executive in charge of production Kiran Kapany, editor Gail Huddleson and photographer Vicente Franco -- to spend time with these individuals and all the others we were privileged to meet. We are honored to tell just a small part of their story. And we invite you to please tell yours in the comments section of this blog.

More on this topic next Tuesday...

 

7 Comments

Scott said on January 30, 2009 10:35 AM:

Thank you for this documentary David. As a 33-year old diagnosed with Parkinson's about 18 months ago and with so much life (hopefully) left to live, I found it and the people in it inspiring when I watched it online with my wife last night. I have made a number of lifestyle changes since being diagnosed in an attempt to slow the onset of the disease, and I am still not disclosing it to anyone other than those closest to me, so I have been quietly lurking on your blog for several months. Your film was a reminder to me that despite doing a number of things "right," I need to get out and exercise more. I am physicallly very fit and enjoyed frequent sports until my diagnosis, but since then, between work, 2 young children, and my own inner struggles with acceptance of this progressively debilitating condition, I have let that slip. So if nothing else, your work has probably helped at least one other person with PD hopefully stave off it's progression. I am proud of how you are communicating with those of us who share your plight and those who are interested in helping us find a cure. Please keep it up. Thank you Scott ... both for watching and for letting me know your thoughts. I appreciate your writing ... I know it's not easy to do. And feel free to contact me in the future if that would ever be useful. Dave
Rick said on January 30, 2009 11:47 AM:

David, My wife was diagnosed with PD about a year or so ago. She is 52 and runs her own (successful!) business. I want to thank you for the personal, informative, even lyrical, treatment of this topic. I came away with not only a better understanding of treatments and life with PD but more importantly, a view into the strength and faith that so many people bring to this condition. I particularly want to thank you for sharing your family's experience. I was touched by the conversation between your brother and your self and think your Mom is great! Best wishes in all that you do, Rick
Peggy Naugle said on January 31, 2009 5:46 AM:

David, I am truly moved by the work you have done by bringing Parkinson's disease awareness out to the forefront of all minds. My father, John Russell, was diagnosed in 1983 (47 then), but doctors determined he had it years before. He became such an advocate with a voice. He moved from Texas to Oregon (his hometown) during that time to work with Dr. Nutt at the Oregon Health Sciences Center and participated in various aspects of research. He also became the voice of Parkinson's disease in Oregon. Like Michael J. Fox, my father never lost his humour and took any chance to speak in front of any group that would listen about Parkinson's Disease. I became a caregiver for him in the mid 1990s and brought him back to Texas. He passed away in June 2004. Since then I have taken a moment to reflect on this disease and now I am an advocate and I am continuing his work on being "his voice". My friends and I have started our own organization, Cats Corner Community Organization, to raise funds for our own local Plummer Movement Disorders Center which is a National Parkinson's Care Center in Temple, Texas. So thank you for bringing attention to Parkinson's Disease and as Michael's goal is also our goal. We hope to go out of business one day. Peggy (Russell) Naugle
Dave Iverson said on February 1, 2009 9:06 PM:

I said this on another part of this Forum ...but I so appreciate your comments Peggy and Rick ... it matters hugely to me that it resonate with people who have PD and their families ... please encourage people to participate in the post broadcast discussion on Tuesday!
Sue said on February 2, 2009 4:39 AM:

Dear Dave, I was just enjoying this wonderful site when I got the feeling that a friend of mine had lost his battle with PD. I checked the obituaries of the local paper (I am vacationing in another state) and found that he passed away January 27. He was a kind, dear man, a member of my PD support group. I had shared the trials and tribulations of PD with him and his wife. I just have to tell you that right now I feel so sad and so angry. All the platitudes about exercise, continuing activity and involvement, etc. just seem so useless at this moment. I want to ignore the reality that this disease is progressive and incurable, but then something like this happens and slaps you in the face. I think this is the first hopeless moment I have had since I was diagnosed seven years ago. I will watch the program and hope that it will brighten my outlook and restore my faith. Sincerely, Sue
Angela Taylor said on February 2, 2009 9:12 AM:

Dear Dave, Thank you so much for telling your story with the world, but especially for including information about cognitive symptoms of Parkinson's disease. Most people don't know that Parkinson's disease dementia is part of a spectrum of dementias called Lewy body dementias (LBD). LBD is the second most common type of dementia in the elderly after Alzheimer's, and can present itself as dementia accompanied by any combination of the following symptoms: parkinsonism, fluctuating levels of cognitive abilities, hallucinations, a sleep disorder where people physically move about in their dreams, or a severe sensitivity to medications used to treat hallucinations. Families like mine, who have a loved one with Lewy body dementia, can find a great wealth of information and support at the Lewy Body Dementia Association website, www.lbda.org. Thank you so much for your story! Angela Taylor
Adele Hensley said on February 2, 2009 9:55 PM:

Dear Dave, I just watched your film with my mother, husband, and eight-year-old son. My dad called and was watching, too. I am 43, was diagnosed four years ago, and like you, took more than two years to be diagnosed. It is decidedly weird, but I look at these images you have recorded of men twenty years older than me and see myself. When I walk, my left arm goes straight to my side like yours does. Lately my head and neck angle forward, like your brother's. My husband helps me with shoes and socks just like Tom's wife helps him. Like your father, the hardest part is when my speech is barely intelligible. Your film is an accurate portrayal of my own PD experiences. My exercise for fighting Parkinson's is Tae Kwon Do. I definitely feel better on weeks with a regular workout schedule. A few minutes into the program, my son asked if people die from PD. I told him, not directly. Thank you, Dave, for giving us a way to begin the conversation and to explain what we're living under, with, and through. Adele Hensley Chicago, Illinois

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posted january 29, 2009

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