"Wow," I Have Parkinson's: Reactions to A Late Quartet and an Early Retirement

Last month, PDF hosted a special screening of the film, A Late Quartet in New York, NY, followed by a conversation with its Director, Yaron Zilberman, PDF Scientific Director Dr. Stanley Fahn and PDF Research Advocate Pam Quinn.

If you haven't yet heard of this film, which is produced by Entertainment One Films, it stars Philip Seymour Hoffman, Catherine Keener, Mark Ivanir and Christopher Walken as a string quartet struggling to stay together in the face of competing egos and ... Parkinson's disease.

As you too often tell us, your neighbors and friends may not truly understand the disease.  So when a film puts a spotlight on Parkinson's disease, it is an opportunity to give Parkinson's a name, to let people know the realities of the disease.  It's the same reason we all work so hard to raise the profile of Parkinson's disease all year long, particularly during April's Parkinson's Awareness Month.

We would really love to hear your reactions to the film, and its portrayal of Parkinson's disease. Have you seen it? Click here to find a list of screenings.

To start us off, here are a few questions and observations, from PDF:

• Diagnosis: What did you think of the moment when Christopher Walken's character is diagnosed with PD? To many viewers, his silence, followed by a simple "wow" seemed to hit home effectively, communicating a variety of emotions with just one word.   Is this similar or different to your own reaction to your diagnosis or a loved one's diagnosis of PD?
• Exercise: You may recognize PDF's own Research Advocate Pam Quinn in the film.  She portrays an instructor in an exercise class for people with Parkinson's.  In this scene, she talks about how the movements in PD get smaller and smaller, and so people have to make them bigger and bigger. Some viewers pointed this out as a favorite scene. Do you agree? Why or why not?
• Retirement: The time frame of the film seems fairly short, with Christopher Walken's character retiring rather quickly after his diagnosis.  Clearly, as a musician his physical dexterity is a very important part of his job. What do you think about the timing of his retirement? How does this cause you to reflect upon the impact of PD on your career?

Building on this last question, we'll leave you with a comment from one of PDF's Facebook friends, a musician, who commented on how PD impacted her musical career. We hope you add to the discussion:

Jane: It sure rings true for me! I was dxed with PD over three years ago and I was a concert violist. Due to the tremor in my right hand I can no longer play the way I used to and have had to retire from professional viola playing. It is a great loss and have suffered depression as a result. I have had to accept the fact that I can only play simple music, now. This illness has really impacted my life more than it would have if I had not been a musician.

Thanks to all who joined us in New York City for the screening.

WPC Roving Reporters: Day Two Science

The 2nd World Parkinson Congress continues its three days of sessions discussing the latest news in Parkinson’s science and care. PDF’s reporters have been listening in to a variety of these sessions. They are reporting back what they have seen and heard….and sharing the most important messages they are hearing as people living with Parkinson’s.

Please note that this post was updated on October 5.

Kate Kelsall
Attended: Music as Pleasure and How It Can Empower You
Presenter: Concetta (Connie) Tomaino, D.A., MT-BC, LCAT, Executive Director of the Institute for Music and Neurologic Function in the Bronx, New York

"Some of the points in Connie’s presentation included:

• We all experience music, but we all feel the beat differently.
• The importance of singing songs one knows well to cue yourself (she sang “You are my ____”; the audience filled in the blank with SUNSHINE).


• The prosody (rhythm, stress and the intonation) of singing matches that of the voice.


• Songs can promote memory retrieval of past events that are associated with certain songs.


• Music and songs can help with psychological issues such as depression or fatigue.


• Choose music to move by and choose different music to lull yourself to sleep.


• People with Parkinson’s have difficulty with articulation and lack of breath support. Singing can help with these issues. She illustrated with the song “Amen," noting she was able to help her patients increase their breath support from three syllables to 19 syllables."

Learn More:
Find resources on music and PD
Watch Ms. Tomaino's video presentation from PDF 2009 educational seminar


Jackie Hunt Christensen
Attended: Non-Motor Symptoms: Sleep, Pain, and Autonomic Dysfunction

"This session gave scientific validation to symptoms that many of us with Parkinson’s disease have been experiencing for years, often without acknowledgment from our physicians. Treatments haven’t been identified for most of these problems, but having them recognized as real phenomena that Parkinson’s disease may cause for some patients is a giant step in the right direction toward better patient care.

• Sleep issues: It is estimated that 90% of people with PD will experience some sort of “sleep disturbance.” These can include reduced sleep; sleep fragmentation (waking up a lot during the night); Rapid Eye Movement (REM) Sleep Behavior Disorder (acting out our dreams, such as kicking, punching, screaming); or excessive daytime sleepiness. Some of these conditions can be worsened by PD medications.

• Pain: Two-thirds of PD patients report pain that is directly related to their PD symptoms. This pain can occur in arms, legs, back, shoulders and usually occurs on the side of the body most affected by PD. It may improve after PD drugs are begun. Some people with PD may feel pain in a situation or experience that is painless for those without Parkinson’s. Others may feel extreme pain when people without PD feel only mild discomfort.
  

• Autonomic dysfunction: The autonomic nervous system regulates “automatic” body functions. For those of us with Parkinson’s disease, autonomic dysfunction can include bladder problems; constipation; sexual dysfunction – in both women and men, excessive sweating, and sensitivity to cold."

Learn More:
Find resources for nonmotor symptoms in PD
Watch PDF's online seminar on nonmotor symptoms