When Oliver Sacks, M.D., was a neurology
resident in the early 1960s, he once observed
an artist with severe akinetic parkinsonism who was
“hardly treatable, for L-Dopa was still some years in the future.”
  Though barely able to move, the artist assured Dr. Sacks that he could still paint large canvases. Although Dr. Sacks could not imagine how the artist would be able to paint, a most extraordinary thing occurred: when the artist was handed a paintbrush, he suddenly proceeded, with wide, sweeping movements, to complete a large and exuberant painting. When he was finished, he sank back into his chair and became almost completely motionless once again.
  This therapeutic power of the arts – whether visual art,
music, dance or performance – was one of the highlights of the “Creativity and Parkinson’s” section of the recent World Parkinson Congress (WPC), held February 22-26, 2006, in Washington, D.C.
  Special workshops and a unique exhibition celebrated the human spirit, providing tremendous inspiration for all who participated.
  In her workshop on “The Challenge of Living Creatively
with Parkinson,” Ruth Hagestuen, R.N., M.A., the National
Parkinson Foundation’s Director of Field Services, described the therapeutic power of the creative arts.
  “A creative outlet can give voice to a range of feelings
and dreams that are not captured in all of their depth in any other way,” she said. “Expression through creativity often brings forth inner passion and an opportunity for healing and self-discovery.”
  At a dance demonstration class led by Mark Morris Dance Group, nearly 100 people laughed as they danced to a rousing melody.“ In addition to having great fun and sharing companionship, the persons with PD in the group moved beautifully and gracefully as we were all absorbed in the music,” said Sharon Metz, R.N., M.P.H., NPF Centers Manager, who remarked that the “Music and Parkinson’s” workshop provided an equally powerful emotional experience.
  A highlight of the WPC was a wonderful exhibition of
original works of art submitted by artists with PD from around the world and organized by Sharon Stone, Chair of the Program Subcommittee on Creativity and Parkinson’s.
  “I wanted to have an exhibition that included the wide
range of creative activity and talent of the artists – all
persons with PD,” she said. “In addition, the purpose was to raise awareness of the impact of creativity and stir enough scientific curiosity to prompt further study on the therapeutic value of creativity in Parkinson’s.”
With limited funds, Stone secured a 7,200-square-foot
exhibit space that featured the creative works of hundreds of artists. A PowerPoint presentation further showcased their work, and an evening “Meet the Artists” session gave conference attendees the chance to interact with the artists.
  At the “Renewal Room,” artists had the opportunity to give short presentations; others presented poetry readings; still others led participants in drumming, laugh therapy, music therapy, and other creative endeavors.
  “These artists’ stories made us all realize the liberating
aspects of creative activity,” Stone said. “Thanks to the
many individuals who shared their work, we are closer in our appreciation of the impact of the role that creativity plays in the life of a PD patient.”

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   The Parkinson Report - 2006 Spring Edit

  Among people with Parkinson disease, there is broad range in symptoms experienced as well as in how much a symptom may affect a person’s functioning in daily life. Activities of daily living can frequently become difficult for
those with Parkinson’s.

  Occupational therapists are health professionals trained to help a person who is having difficulty – in this case,
a person with Parkinson’s – regain lost skills or learn new methods or strategies to overcome the limitations
caused by illness or injury.
  With Parkinson disease, there are several thoughts to keep in mind, no matter what a person is doing:
  1) Because of slowed muscle response and possibly slowed thought processing, a person with Parkinson’s
cannot be hurried. To even feel a pressure to hurry is distracting, makes performance harder, can trigger
“freezing,” and even increases risks of injury and falls.
  2) People with Parkinson’s must attend more to their actions as they perform a task. Conversing while
doing a task or doing two things at once will make the effort much harder to perform. Actions that were once “automatic” now require deliberate focus.
  3) Parkinson disease can affect the eye muscles and eye function as well. In addition, visual-spatial perception is often affected. In lower light situations, or cluttered
environments, people with Parkinson’s may have difficulty
seeing, doing tasks, or even keeping their balance.
  Here are some tips to help the person with Parkinson’s:
     • Have adequate, non-glare lighting; and increase contrast.
     • Have chairs with colors that contrast from the walls and floor, for example; this can make it easier for the person to see the edge or armrest of the chair.
     • Similarly, mark thresholds or edges of steps with a contrasting-colored tape to help make stumbling and
falling less likely.
     • Use a placemat whose color contrasts with that of the table to help make one aspect of eating easier.
  4) Getting out of chairs and sofas is one of the most frequent frustrations for people with Parkinson’s. For
many, the longer one sits, the harder it becomes to get up. It is easiest to arise from a chair if you first slide the hips to the front of the chair seat. Bring your feet slightly
behind your bent knees, and lean forward to bring your “nose over the knees.” Push up from the armrests.
   Note: Pushing up from armrests is safer and more effective than pulling on a walker or someone’s arms. Raising low seat heights by inserting a folded blanket or quilt under the seat can make a big difference. A piece of satin or a plastic bag makes sliding the hips on the seat easier.
  5) Getting in and out of bed is easier if one has a firm mattress. A piece of satin drawn across the middle of the mattress, or else wearing satin pajamas, can make
moving in bed easier by decreasing friction. A small bed rail or a chair tied to the bed frame at the head of the bed can provide a handhold and can make getting in and out
of bed much easier. Rather than crawl onto the top of the bed, it is more effective to sit on the side of the mattress, and then hold onto the bed rail or chair. As you lower
your head and shoulders toward the pillow, raise your legs onto the bed at the same time. Training from an
occupational therapist can make moving in bed easier.
  6) To make eating easier and to decrease spilling, make certain you sit as close to the table as possible. New felt pads on chair legs can make sliding a chair on a wood or
tile floor easier. An angled knife or pizza cutter makes cutting foods easier. An angled spoon or fork with a larger, easy-to-hold handle makes bringing food into the mouth without spilling easier. There are many different designs of adapted utensils. Professional help is valuable
to determine which design is the most effective for the person with Parkinson’s.
  7) When dressing, one should sit. Not all clothing is practical; avoid shirts with tiny buttons. Polo style shirts (with few buttons), western style shirts with snaps, or shirts with Velcro® closures are easier, as are loose-fitting or stretchy shirts. Pants with elastic waistbands or even Velcro® closures make both dressing and using a toilet easier. Socks without elastic are easier to put on,
and elastic shoelaces or Velcro® straps can make putting on shoes easier. There are too many helpful methods and adaptations available to list here, just as there are too many specific situations and challenges posed by PD in daily life to list here. Occupational therapists can be
helpful with a person’s specific needs to experience quality of life while living with PD.

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  The World Parkinson Congress, held February 22-26, 2006, in Washington, D.C., was the first time an entire global network of Parkinson researchers, physicians, health professionals, patients and caregivers, came together to share their knowledge and jointly try to improve the lives of persons with Parkinson disease.
  The National Parkinson Foundation was pleased and proud to be an organizing partner of the World Parkinson Congress, to bring the important topic of care delivery to the Congress and to contribute to bringing the breadth of information together in new.

  Of over 3,100 participants, more than 1,800 were medical professionals. Another 1,000 were persons with PD and caregivers, and the rest were members of media, and exhibitors. The conference featured participants from approximately 50 countries.
  At the opening ceremony of this historic gathering, Stanley Fahn, M.D., Director of the Center for Parkinson’s Disease and Other Movement Disorders at Columbia University and chairman of the World Parkinson Congress, provided opening remarks and greetings, along with Michael J. Fox, internationally renowned actor and founder of The Michael J. Fox Foundation for Parkinson’s Research; Elias Zerhouni, M.D., Director of the National Institutes of Health; and Oliver Sacks, M.D., Honorary
Chair of the Creativity and Parkinson’s Committee for the World Parkinson Congress.
  At the week-long conference, some of the world’s leading neuroscientists from the United States, Canada, Sweden, and other countries around the world presented on innovative therapies that show promise in controlling the symptoms of Parkinson disease, restoring lost function, and even altering the progression of the disease.
  From determining the potential of new compounds; to using deep brain stimulation (DBS) to treat depression; to evaluating dopamine cell transplantation, gene therapy, and encapsulated cell bio-delivery; researchers discussed the latest advancements in therapeutic, neurosurgical, and cellular and gene therapies for Parkinson’s.
  Ruth Hagestuen, Director of Field Services at the National Parkinson Foundation, helped set the stage for addressing care concerns in her presentation on “The Challenges of Delivering Comprehensive Care for Parkinson Disease in the United States,” attended by a large audience. She presented the case that the current health care system is neither designed nor funded to effectively and efficiently respond to the complex needs of persons living with chronic illnesses like Parkinson disease.
  In response to the clear and compelling need for educating professionals in interdisciplinary care delivery, the National Parkinson Foundation has developed one of its signature programs, Allied Team Training for Parkinson care (ATTP). The abstract describing ATTP was recognized as a hot topic at the World Parkinson Congress, which offered an opportunity to present the outcomes of this
successful professional training program.
  Presentations were given on a variety of topics, including the following:
     Treating Parkinson’s –
   What Do We Have in the Arsenal and the Pipeline?
         • Deep Brain Stimulation
         • Neuroprotection/NET-PD
         • Stem cells
         • GDNF
         • Gene therapy
   Living with Parkinson’s – What are the Hidden Challenges?
         • Depression and anxiety
         • Freezing, dementia, sleep problems
         • Physician/Patient’s perspective
         • Patient’s perspective
   The Road to the Cure for Parkinson’s – How Do We Get There?
         • What’s causing Parkinson disease, and how can we understand it?
         • Genetics, familial PD
         • Epidemiology and potential protection strategies
         • Biomarkers
         • Translational Research
  Recent advances in scientists’ understanding of the genetics and epidemiology of Parkinson disease may point to ways to prevent and, eventually, find a cure for the disease, according to presenting scientists.
  Parkinson disease is the second most common neurodegenerative disease, affecting more than one million Americans – more than the number of people diagnosed with multiple sclerosis, muscular dystrophy, and Lou Gehrig’s disease combined. There is no known cure for PD. Its symptoms, some of which include tremor, rigidity, and gait disturbance, worsen over time, and can make everyday life more difficult for those afflicted with the disease.
  Scientists and physicians already know some of the factors – age greater than 50 years, the toxin MPTP, and a number of genes – that make it more likely that someone will develop Parkinson disease. They have also found that cigarette smoking, coffee drinking, and use of non-steroidal anti-inflammatory drugs (NSAIDs) tend to be more common in people without PD, and may be somehow protective.
  Researchers agree that a greater understanding of the
biochemistry of PD is needed to develop effective treatments. Some researchers are using functional brain imaging to quantify abnormalities in brain function associated with different features of the disease process. They are also looking at structural, genetic, proteomic, and physiological markers that underlie the features of PD. The hope is that one day biomarkers could presage development of the disease and open a window for
potential treatment, perhaps years before symptoms appear.
  Sessions also included remarks by persons with PD, who
discussed the challenges of living with PD and effective strategies for coping with the disabling disease.
  One presenter, Dr. David Heydrick, a neurologist and a
Parkinson patient, explained, “Through a corrective use of
medication, nutrition, and exercise, patients can control their symptoms and potentially the progression of the disease.” Heydrick, who has received the only surgical therapy for PD – deep brain stimulation (DBS) – runs daily, practices tai chi, and lifts weights, among other activities. Physicians agreed that until more effective therapies are developed, persons with PD must take a proactive approach to managing their disease and to educating others about it.
  A highlight of the conference was a special session on Creativity and Parkinson’s, which featured art, music, and dance by persons living with or touched by Parkinson disease (see related article on page 4). Numerous artists had the opportunity to speak about the creative process, their own work, and how PD impacts their creativity as well as how creativity impacts their PD.
  In addition, an exhibition on the history of the disease and a showcase of art selections from 13 countries was available throughout the conference.
  The World Parkinson Congress (WPC) was a unique
international event that brought the Parkinson community
together. It was organized by the World Parkinson’s Congress, Inc., a nonprofit organization dedicated to providing an international forum for the best scientific discoveries, medical practices, and caregiver initiatives related to Parkinson disease.
  The National Parkinson Foundation was pleased that so many medical directors and staff from its Centers of Excellence were able to attend the World Parkinson Congress and present findings at the meeting. It was invaluable that Center representatives were able to interact with other teams, and persons with Parkinson
disease, from around the world.
  By bringing together physicians, scientists, allied health
professionals, caregivers, and people with Parkinson disease, WPC hopes to create a worldwide dialogue that will help expedite the discovery of a cure and best treatment practices for this devastating disease.
For more information, please visit www.worldpdcongress.org.

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*Some Articles reproduced with permission from The National Parkinson Foundation. For These and other articles read the Parkinson report available on this page.