Shake, Rattle and Roll

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

Take Charge of Parkinson's Without Leaving Home

Taking Charge of Parkinson’s FREE Webcast

Hosted by the Parkinson's Disease Foundation and the Houston Area Parkinson Society
Houston, Texas

Saturday, April 4, 2009
10:00 AM to 3:00 PM

The fourth installment of Parkinson’s Science: Innovations and New Perspectives will take place on Saturday, April 4, 2009 in Houston, Texas, in collaboration with the Houston Area Parkinson Society. The event will explore actions - such as exercise and creative activities - that may improve your daily life with Parkinson’s disease (PD). The event will be available to a live audience and will also be available to view live on the web.

Registration for the live event is now FULL.

Registration for the LIVE webcast is still open.

Register to watch via webcast

http://event.netbriefings.com/event/pdf/Live/takingcharge/register.html

Details about the day's presentations are available below:

9:00 AM – 9:55 AM

Registration

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9:55 AM – 10:00 AM

Opening Remarks
Anne Thobae
Executive Director, HAPS

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10:00 AM – 10:50 AM

Improving Brain Function with Exercise and Creativity: You Too Can Do It
Julie H. Carter, R.N., M.S., A.N.P.
Oregon Health and Science University

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10:50 AM – 11:05 AM

Break

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11:05 AM – 12:00 PM

Does Exercise Influence Parkinson's Disease?
Giselle Petzinger, M.D.
University of Southern California

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12:00 PM – 12:45 PM

LUNCH

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12:45 PM – 2:25 PM

Taking Charge of Your PD Through Music and Dance

Shall We Dance?: Benefits of Tango for People with Parkinson's Disease
Gammon M. Earhart, Ph.D., P.T.
Washington University School of Medicine

I've Got Rhythm: The Power of Rhythm and Music to Benefit Those with PD
Concetta Tomaino, D.A., MT-BC, LCAT
Beth Abraham Family of Health Services

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2:25 AM – 2:55 PM

Q & A Panel

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2:55 PM – 3:00 PM

Closing Remarks
Robin Elliott
Executive Director, PDF

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It Takes Two to Tango

“It takes two to tango, two to tango
Two to really get the feeling of romance
Let's do the tango, do the tango
Do the dance of love.”

I should have been suspicious when reading the course description of the tango class sponsored by the local senior center. "Argentine Tango: This dance will touch your romantic soul. In this introductory class, you will learn what it takes to lead and follow. We’ll start in open embrace and progress to close embrace. No experience is needed and no need for a dance partner.”

My husband, Tom and I have had a brief history of couples dancing. In a ballroom dancing class about 25 years ago, the teacher, a burly German woman, grabbed me while her partner, a petite German man, snatched Tom to demonstrate a dance step. We quickly waltzed out of that class during the break, never to return to ballroom dancing.

Line dancing classes were a bit easier to manage because the difference in our heights wasn’t a factor (Tom is 6’4” and I am 5’1” and shrinking). But then we got older and memorizing the sequences of the line dancing steps became a struggle.

I had heard about the benefits of tango for Parkinson’s patients, and I wanted to give couples dancing another try. I coaxed and cajoled Tom to take a tango class with me, and he reluctantly agreed.

When we arrived at the class, tango music was blaring from the boom box. Three young couples and a single woman were nervously waiting for the class to begin. Then, the instructor, a tall blond woman from Boulder not Argentina, instructed us to “face your partner and stand closer together than you would in most other ballroom dances – close enough that your torsos are touching.” Our torsos were touching, which meant that my head was facing Tom’s lower rib cage. 

We were further instructed that the leader of the couple (Tom) was to place his right hand on the middle of my lower back and for Tom to extend his left hand out to his side with his arm bent while grasping my right hand in a loose grip. As the follower, I was to place my left hand on Tom’s right shoulder while placing my right hand in Tom’s palm with my elbow bent. By then, I was on my tiptoes trying to reach Tom’s shoulder and hand. Now that we were “comfortable,” we were instructed on how to do the tango walk – Tom walking forward and I walking backwards. Every several minutes the tango teacher ordered us to switch partners and to change positions from leader to follower. Reflecting back on that night is mostly a blur except for the pain of walking backwards for an hour.

After the lesson, Tom and I agreed that the tango is much too intimate of a dance to stand torso to torso with a stranger while in open embrace and progressing to a close embrace.

We decided to stick to dances of the past where we can dance independently without a partner – dances like the twist, pony, mashed potato and swim – recognizing that it takes two to tango.

Genetic Test for Parkinson's Disease for $25

March 12, 2009

Michael J. Fox Foundation Joins Effort to Recruit 10,000 People with Parkinson's Disease to New Web-based PD Research Community

The Michael J. Fox Foundation for Parkinson’s Research, together with personal genetics company 23andMe of Mountain View, California, and The Parkinson’s Institute and Clinical Center of Sunnyvale, California, announced a call for 10,000 people with Parkinson’s disease to join an ambitious new research community. The goal of the community is to empower individuals with PD to proactively impact research in real time, potentially helping to speed early-stage scientific discoveries toward practical therapeutic relevance in treating Parkinson’s disease.

The 23andMe Parkinson’s Disease Community, conceived and led by 23andMe, is a novel attempt to leverage DNA technology, the Internet, and patient participation to enhance scientific understanding of Parkinson’s disease and the field’s ability to develop breakthrough treatments.

“Exploring the potential of a Web-based approach to patient engagement for research purposes is well-aligned with our Foundation’s mission,” said Katie Hood, CEO of The Michael J. Fox Foundation.

For the past year, the Foundation has been funding a partnership between 23andMe and the Parkinson’s Institute and Clinical Center to develop Web-based tools and surveys to gather information from a community of PD patients in a scientifically meaningful way. That project is still in development. In the interest of ensuring that the surveys can be put to immediate use once they are ready, 23andMe and the Parkinson’s Institute are now formally beginning the work of building the community.

To accelerate this community’s growth, through March 22, 23andMe is sponsoring up to 10,000 people with Parkinson’s to join the community for $25 instead of the usual $399. To be eligible for this discounted rate, individuals must have been diagnosed with Parkinson’s by a physician, be willing to provide a saliva sample for genetic analysis, and agree to participate in online surveys about their experience with Parkinson’s. Participants’ data will be kept anonymous, but will contribute to a larger pool of data about the PD community that will inform various Parkinson’s research efforts over time.

In addition, members will have full access to the 23andMe Personal Genome Service™, which includes detailed, personalized reports across many health conditions and traits, including PD. They will also have the opportunity to share their experiences directly with others in the 23andMe community who have Parkinson’s or who carry genetic markers placing them at increased risk for developing the disease.

More information on joining the community -- including information on how people with Parkinson's can obtain a discount code to participate in the limited-time reduced rate of $25 -- is available at http://michaeljfox.org/23andme.cfm

Related Article:

Google Co-Founder Backs Vast Parkinson's Study  by Andrew Pollack 
New York Times

 

Apathy as a Virtue

Jean from Columbia, Missouri responded to What Difference Does It Make: Apathy and Parkinson’s with the following:

“Darn!!!  I thought that I was becoming a better person, mellower and less confrontational.  I thought that I had finally developed the good sense to know which battles to fight and which to just let slide.  But now I learn from your website that what I thought was a VIRTUE is really just a SYMPTOM--apathy.

Drat, phooey, and rats!  I think that I'll just ignore the diagnosis and keep believing that Parkinson’s has given me a new perspective and greater tolerance.  I think that I'll keep apathy in the VIRTUE column.  I kind of like the new, more tolerant, me.”

***

I can be just as virtuous as the next gal. But I am less tolerant than Jean and still struggle with picking and choosing my battles. Perhaps a little dose of apathy might be the antidote for my Parkinson’s woes.

All Shook Up

On October 17, 1989 the San Francisco Bay area buzzes with excitement about baseball. The Oakland Athletics and San Francisco Giants, both local teams, are scheduled to play in the World Series at 5:30 PM. at San Francisco’s Candlestick Park.

South of San Francisco in Redwood City, I don’t focus on baseball because I am absorbed in my work as a CPA at an accounting firm. Dressed in my beige business suit and beige pumps which match the beige walls of my office, I scrutinize the numbers of the spreadsheet, calculating the personal and community property of one of my marital dissolution clients.

I glance out my office window and view a cloudless, blue sky and palm trees standing like guards in the late afternoon sun. A few minutes past 5 PM and without warning, the one-story brick office building begins moving both horizontally and vertically, like shaking up a Cracker Jack box. Someone shouts “earthquake.” Colleagues seek refuge under door frames or huddle under desks. Joining them, I brace myself under the door frame. There is no conversation just a fearful anticipation. Ceiling tiles pop, and dust streams down. A chemical smell emanates from a nearby copier and stings my eyes. I hear sounds of file cabinets flying open, books falling off shelves, pictures bouncing off walls, glass shattering and chairs moving. Then everything goes silent.

I later discover that at 5:04 PM a 7.1-magnitude earthquake struck the San Francisco Bay area and the tremor which felt like 15 minutes lasted a mere 15 seconds. There were more than 10,000 aftershocks over the next few weeks. What I didn’t realize is that the earthquake would be a precursor of shaky times ahead for my career and my health.        

                                                                       

Weight vs. Height

I’ve always been more preoccupied with losing height than gaining weight.

However, my focus has now shifted to losing weight and gaining height because of my 16 pound weight gain since Deep Brain Stimulation. I’ve lost 8 of those 16 pounds at a turtle’s pace through Weight Watchers and exercise and am determined to lose the remaining 8 pounds.

In terms of height, I have a long history of being vertically challenged. It started in kindergarten when we stood in line from the shortest to the tallest, and I was always the first. However, my doctor says that I will never again see 5'1" with my shrinking height.

I’ve discovered a couple of tricks to looking like I'm taller. Dr. Abraham Lieberman suggests that we practice standing with our hands on our hips and talk with our chin raised, like Obama.

Yoga guru, Paul Zieger, suggested that there are arm positions we can use in addition to our hands on our hips, e.g. our arms stretched behind our back with our fingers interlaced or our thumbs in our armpits lifting the front body.

So the next time you see me, I hope to be 8 pounds lighter, taller, with my chin raised, my hands on my hips, my fingers interlaced behind my back and/or my thumbs in my armpits.

Related Story:

Post-DBS-STN Weight Gain