Shake, Rattle and Roll

The Show Must Go On

Check out my video, The Show Must Go On  at:

http://youtu.be/enff5rH927M

Playing with Parkinson's -- The Documentary

http://www.playingwithparkinsons.com/Welcome/The_Documentary.html

"You don’t need to know how to play an instrument to make music.  Just grab the nearest bowls and stir.” – Musician Sangeeta Michael Berardi, CA

If you passed Sangeeta Michael Berardi on the street you would see - if you noticed him at all - a little guy; looks to be in his sixties, walking not quite steadily, his hands shaking, his jaw twitching.  But if you walked on by you’d be passing one of the most remarkable men you might ever get to meet. – Filmmaker Burrill Crohn, NY

July, 2011

The upcoming documentary Playing with Parkinson’s is about musician, writer, painter, poet, mediator and philosopher Sangeeta (his spiritual name meaning “Divine Song”) Michael Berardi.  In the sixties, along with recording under his own name and on the recordings of others, he played guitar with trombonist Roswell Rudd, saxophonist Archie Shepp, pianist and harpist Alice Coltrane (saxophonist John Coltrane’s wife) as well as other leading figures of free/avant garde jazz. Award-winning documentary filmmaker Burrill Crohn captures Sangeeta’s world as he, since his diagnosis with Parkinson’s in 2000, continues to open up to the disorder and becomes awed and spiritually strengthened by its challenges.  Playing with Parkinson’s illuminates how an individual “converts ‘disabilities’ into new abilities.” His earthy wisdom and courage has inspired not only family and friends but also the filmmaker.  They’ve become distant friends (three-thousand miles apart) and collaborators on the documentary. 

Now, fifteen years later, Sangeeta has gone into a recording studio to make music again, joined by musicians from previous recordings.  No, it wasn’t the fiery, virtuosic music of his past but a music of the present, born out of the person he is today, Parkinson’s and all.

Sangeeta’s goal it to “translate the unique rhythms of my Parkinson’s tremors into musical statements.” – Burrill

“I will be using a guitar,” Sangeeta said, “though in a different way than before.  Other instruments might be bowls and spoons, or my pill containers in a bag, or almost anything that will translate shakes into sound.  I will also use my voice, modulated by Parkinson’s grip on my vocal cords, as an instrument as well.   We have some amazing musicians on this date and I won’t be able to keep up with them technically, nor do I expect them to limit themselves to what I can or can’t do on my instruments.  The challenge will be whether we can merge on a new common ground based on sound, intention and what I like to call the “virtuosity of the soul.”

View Sangeeta behind the bowls: http://www.youtube.com/watch?v=qoVVx6NYoew

Here’s a clip of Sangeeta singing “Mr. P.”, his whimsical name for Parkinson’s:

http://www.youtube.com/watch?v=5KUbNE6R2A8&feature=related

Yes, this is a film about music, and also the burdens life can put upon us sometimes.  It is also a film about Parkinson’s disease, and how someone like Sangeeta converts “disabilities” into new abilities. But, at its heart, this is a film about the human spirit, transcendence and the everyday heroes (the last word Sangeeta would use about himself) that walk among us.   - Burrill

Playing with Parkinson’s has initially been funded by friends, family and generous strangers (now strangers no more), through Kickstarter:

(http://www.kickstarter.com/projects/1033639232/playing-with-parkinsons-documentary)

The goal of $9,500 was surpassed early. Now, the task remains to find the capital to complete production.  Sangeeta’s faith in the work is what has brought the film to this point.  He continues to push beyond his physical boundaries to communicate to the world through his music, his drawings, his love and spirituality.  You see, Sangeeta has no illusions about where the path of Parkinson's (or Mr. P as he calls it) ultimately leads ("Maybe God will be kind", he says, "and let me get hit by a train or a truck and I won't even see it coming."). But that will be then. Meanwhile, this is now and he fills each moment with courage, determination, zero self-pity and plenty of joy.

My dream is that the film will help folks with disabilities that face difficult challenges daily to tune in to what they can still do instead of focusing on what they cannot do.  I know this way of tuning in has generated hope in me & helps my spirit stay positive & strong.  It’s kind of like focusing on the donut not the hole. The potential for the film to do good in the world is what keeps us going – Sangeeta

Playing with Parkinson’s http://www.playingwithparkinsons.com/Welcome/The_Documentary.html

For more information, please contact Cheryl K. Symister-Masterson at [email protected],

No Limitations for Neil

Like to see how Australian, Neil Sligar relaxes? Toward the end of four days each and every week, he puts on a T-shirt, shorts and pair of jogging shoes and heads for the gym. Believe it or not, indoor rowing and cycling at unusually high speed for a fellow of 65 years are easy compared to getting dressed or holding a cup of coffee. An oddity of his Parkinson’s is that as his exertion increases, the Parkinson’s abandons him.

Neil works out in the company of fit young people. No one says “Neil, you have Parkinson’s. You’d better take it easy." No one would dare.

Check out the video of Neil's usual exercise regimen at:

http://www.youtube.com/watch?v=R_-nRQmO8ko

Way to go, Neil.

 

Vote for Donna

I am honored to share with you an inspriring video which one of our DBS support group members in Denver, Donna Miller, has made and entered in the NeuroFilm Festival about her DBS journey.  Thank you, Donna, for your beautiful, touching story because, although it is uniquely your story, in many ways it is the story of each one of us who has travelled the DBS path,

To view Donna Miller's video, go to Donna's website at www.DBSdonna.com and click on the arrow that takes you to the video.

If you liked Donna’s video (or even if you didn’t), please email her at [email protected] to provide feedback.

Please cast your vote for the best video in the NeuroFilm Festival by going to www.neurofilmfestival.org and follow the voting instructions. Donna’s video is on the list as well as many others.

Love and Other Drugs: Further Thoughts

FIRST, check out Betsy’s insightful review of Love and Other Drugs on the blog Recently Diagnosed with Parkinson’s Disease at: http://www.recentlydiagnosedwithpd.org/home/2010/11/27/love-and-other-drugs.html

THEN, read my thoughts below:

My husband, Tom and I also saw this movie the past weekend. We didn’t realize that the film was based on the non-fiction book Hard Sell: The Evolution of a Viagra Salesman by Jamie Reidy (Now it makes sense that the film was rated “R” for sex, nudity and profanity—glad we didn’t take our 10 year old friend).

The main story deals with money, pharmaceutical companies, and doctors. The back story deals with a couple’s relationship, where Anne Hathaway plays Maggie Murdock, a woman in her twenties who was recently diagnosed with young onset Parkinson’s Disease. I was glad that the movie shattered society’s stereotype of the old, stooped-over person with Parkinson’s. However, in its place, is a beautiful twenty-something year old woman who exhibits little Parkinson’s symptoms except for an occasional resting tremor, who is obsessed with sex and when she is unable to obtain her Parkinson’s meds, drinks vodka instead.  As Betsy also indicated in her review, Maggie just doesn’t look and act like she has Parkinson’s.

Tom and I also cried at the touching scene where Maggie realizes that she will always need her partner more than he needs her and their uncertainty in the face of this devastating disease. Despite our tears, at least it got Tom and I talking about our future with my Parkinson’s and how it impacts him and our relationship. Love and Other Drugs will get other couples talking as well.

SHAKEN Premiering on PBS

I am thrilled that the award-winning documentary, SHAKEN: Journey into the Mind of a Parkinson's Patient, will be enjoying nationwide broadcast on PBS starting April 1, 2009.

Check out station information and broadcast times for your city at:

www.lilafilms.com/shaken_screenings.htm

For those who have already seen SHAKEN, you don’t want to miss this updated version which includes a follow-up on Paul Schroder, the Parkinson’s patient in the film.

Related Story:

The Documentary Shaken at:  http://katekelsall.typepad.com/my_weblog/2006/10/the_documentary.html

My Father, My Brother and Me

Dave Iverson's story about his father, brother and himself being diagnosed with Parkinson’s Disease is a personal story, but the disease is much more than a family saga. Parkinson's is the second most common neurological disorder, and it raises intriguing questions for science and our aging society. Dave's story, My Father, My Brother, and Me, explores all of these angles.

This program will be broadcast on:

PBS' FRONTLINE on Tuesday, February 3, 2009 and available to watch online beginning Thursday, January 29, 2009.

More information on My Father, My Brother, and Me can be obtained on the following website:  http://www.pbs.org/wgbh/pages/frontline/parkinsons/

9% of Proceeds toward the Parkinson's Cause

Mary Sullivan’s blog, Life with Shaky at http://www.lifewithshaky.blogspot.com/, is a touching account of sharing her life with her husband who has Parkinson’s Disease (PD).

Mary asked for my help in getting the word out about Deborah Fryer’s film SHAKEN. Deborah is offering discounts to persons with Parkinson’s (PWP) and their family and friends. 

The DVD’s online price is $150, but if you contact Deborah directly as a PWP, you can order the film for $29.99.  Support groups get a discount as well, at $75.  If you refer to Mary Sullivan’s blog, Life With Shaky, or refer to her by name when ordering, Deborah will donate 9% of proceeds from those sales back to the PD cause because every 9 minutes someone is newly diagnosed with PD.

Deborah Fryer can be contacted at:

Website: www.lilafilm.com

Email: [email protected]

Phone: 303-442-1966

"Shaken" on You Tube

Click on photo for larger image.
Photo: Copyright © 2007, Deborah Fryer, www.lilafilms.com

Check out a short version of "SHAKEN: A Journey into the Mind of a Parkinson's Patient" on You Tube:

http://www.youtube.com/watch?v=QFtgV1vqwiE

Please watch, rate it, make a comment and then forward it on.

The longer version of this film is going to be on PBS later this year, so please help spread the word.

DBS on PBS Wired Science

Something to do on Thanksgiving Eve...

Message from Steven Gulie

Tune in Wednesday, November 21 on PBS at 8 p.m. / 7 p.m. Central

PBS and WIRED magazine have a new show, "Wired Science." Next Wednesday they have a show about rocket belts, laser archeology, and deep brain stimulation (and maybe isolationism and tooth decay...).

Anyway, parts of it are based on the DBS article I wrote for WIRED last March.

The video of the show can be found at:
http://www.pbs.org/kcet/wiredscience/video/255-deep_brain_stimulation.html

They've got a web page up that includes a couple minutes of video of me talking about DBS:
http://www.wired.com/science/discoveries/news/2007/11/wiredscience8

You have to sit through a 15 second commercial to see it, though.

Whatever happened to noncommercial public broadcasting?

Best,
Steven Gulie
Bilateral DBS for Parkinson's 2006 at Stanford University Hospital, Palo Alto, CA

The Creative Healer

The Creative Healer
An Interview with Filmmaker Deborah Fryer

In recognition of her efforts in fostering understanding about Parkinson’s Disease, Deborah Fryer was awarded Accolade’s Humanitarian Award for her film, Shaken: Journey Into the Mind of a Parkinson’s Patient. Annually, this award is given to a filmmaker who makes a significant contribution to social change or a humanitarian effort. Shaken has also received numerous international awards.

Deborah has spread awareness about Parkinson’s more than anyone that I know. Her film Shaken compassionately explores human suffering and the courage of a man living with young onset Parkinson’s.

The following is my email interview of Deborah:

Kate: Why are you so committed to the Parkinson’s cause (vs. cancer, heart disease, etc.)?

Deborah: Shaken is my first independent film. I met someone my age with Parkinson’s and wanted to learn more about it, so I started researching it on the web. The more I learned, the more I realized that this is a story that has to be told. No one is talking about it the way they talk about cancer or heart disease, but it seems like about one in five of my friends has a family member with Parkinson’s.

Kate: What has been your most satisfying achievement to date?

Deborah: It means so much to me when I get feedback from people with Parkinson’s who thank me for telling their story and thank me for giving them hope. These are some of the comments I have recently received from people with Parkinson’s.

Kate: Where does your strong drive to achieve come from?

Deborah: I don’t know. A palm reader once told me that I had a very old soul from the island of Lemuria, and that my karma was to make the world a better place. She told me that I can’t stand it when there is violence, injustice, pain or suffering in the world, and that my life purpose is to tell stories that don’t usually get told for the purpose of healing the suffering that goes on in the world. I had never met this woman in my life, and she knew nothing about me, so how she pegged me so accurately, I have no idea, but she was right.

Kate: How are you able to maintain objectivity and balance in your professional and personal life?

Deborah: I don’t know that I maintain either. I work hard. I get on my yoga mat every day. I meditate and spend time with my boyfriend and my animals daily. I am still working on working less, sleeping more, and building free time into every day. As an independent filmmaker, it is hard to find that balance, and I am still very much in the searching stage.

Kate: Has any particular life experience significantly contributed to your strong sense of confidence?

Deborah: It’s all an illusion. I have good days and bad days just like anyone else. I cry when I need to. I hug my dog and talk to her when I am feeling like the biggest loser on the planet. I write in my journal. I reach out to friends. I go for a hike by myself in the woods.

I try to take the many mistakes I make as an opportunity to learn. I know I reach and aim high, and I sometimes miss the mark. It can be humiliating, disappointing or devastating. And I know that when I hit bottom, that the laws of physics and the universe say that nothing is permanent, so I know that I will be back on top of the wave before long.

And I also know that if something doesn’t work, then I can always try something else. I think my yoga practice has helped me be less attached to the outcome and more interested in the process.

Kate: If you could live your life over again, what would you do differently?

Deborah: I would go to medical school. I am so interested in science, health, healing and the intersection of those three things. I think so much of health and healing has to do with our minds and the stories we tell ourselves, and yet the miracles of modern medicine and pharmaceuticals are mysterious and fascinating to me. I would want to learn what they teach in American medical schools, and would also want to study in India and China to understand more about the eastern beliefs in illness and well-being.

Further information about Deborah and her film Shaken, can be found her website Lila Films at: www.lilafilms.com.

Accolade Grants Annual Humanitarian Award to Deborah Fryer

In recognition of her efforts in fostering understanding about Parkinson’s Disease, Deborah Fryer was awarded Accolade’s Humanitarian Award for her film, Shaken: Journey Into the Mind of a Parkinson’s Patient. Annually, this award is given to a videographer who makes a significant contribution to social change or a humanitarian effort. For more details on this award, check out the press release at:
http://accoladecompetition.org/Video/Jud.aspx?art=_03

Deborah Fryer has spread awareness about PD more than anyone that I know. Her film Shaken is powerful, touching and heartbreaking. It sensitively depicts the challenges and limitations of living with PD, and at the same time, inspires hope for the future.

You can purchase a copy of Shaken on DVD at Lila Films at: www.lilafilms.com.

Congratulations, Deborah.

Shaken is Now Available on DVD

Shaken: A Journey into the Mind of Parkinson's Patient is now available on DVD. The documentary is powerful, touching and heartbreaking. Shaken accurately depicts the challenges of living with PD and at the same time, inspires hope for the future.

This DVD is selling for $29.99 for individuals--Parkinson’s patients and their friends, family members and caregivers.

The institutional price is $199.99 for educational institutions, hospitals, doctors’ offices, pharmaceutical companies, foundations and public screenings. The institutional price includes a public performance license, meaning that those who buy the DVD at the institutional price are licensed to show to the film to groups, conferences, etc.

For more information, go to the website at:
http://www.lilafilms.com/shaken.htm

The Documentary "Shaken"

I had the opportunity to view "Shaken," a documentary about Parkinson's disease (PD). The film is powerful, touching and heartbreaking. Being a Parkinson's patient and having had the same Deep Brain Stimulation (DBS) surgery as Paul in the film, "Shaken" accurately depicts the challenges of living with PD as well as the limitations of this surgery, and at the same time, inspires hope for the future. The film's main message is that DBS is not a cure, and we need a cure

Check out upcoming screenings at:
http://www.lilafilms.com/shaken_screenings.htm

"Shaken" was produced, written and directed by Deborah Fryer of Lila Films at www.lilafilms.com.