October is Lewy Body Dementia Awareness Month

To be honest, I didn’t really learn about Lewy Body Dementia (LBD) until I read a press clipping from New York University Langone Medical Center. I typically associate October with falling leaves, the sudden appearance of pumpkins everywhere, and my birthday, so I was surprised to learn that this month is also dedicated to raising awareness for a disease that affects about 1.3 million people in America.

Despite its prevalence, LBD is under-treated and under-recognized. It’s often misdiagnosed as Alzheimer’s disease (AD) or Parkinson’s disease, despite being the second most-common form of dementia (surpassed only by AD). People with LBD typically experience a more rapid functional decline than those with Alzheimer’s, and there is a shorter interval between placement in a nursing home and death.

Lewy Body Dementia is aptly named for its etiology—abnormal protein deposits called Lewy bodies build up in the brain cells that control various aspects of memory and motor control; the interruptions of these systems is why LBD is widely misdiagnosed. Fortunately, patients with LBD usually respond more robustly than Alzheimer’s patients to medications used for AD, such as donepezil and rivastigmine, although these may worsen motor symptoms. They also respond well to levodopa, which is often prescribed for Parkinson’s.

Raising awareness is important because it leads to proper diagnoses, more research, and better treatments. My grandfather passed away several years ago from complications caused by Progressive Supranuclear Palsy (PSP), a rare brain disorder that is sometimes misdiagnosed as Parkinson’s. Unfortunately, patients with PSP do not respond well to medications used to treat Parkinson’s. Lewy Body Dementia affects about twice as many people as Parkinson’s and 65 times more than PSP, which means a lot of misdiagnoses. Read more about the symptoms of Lewy Body Dementia and the available treatments on the National Institute of Neurological Disorders and Stroke resource page here.

–Caitlin Schneider

Source: NYU Langone Medical Center fact sheet and definition page

Music as a healer

We’ve come a long way in incorporating evidence-based methods into music therapy, and we’ve only just begun, said Concetta M. Tomaino, of the Institute for Music and Neurologic Function in the Bronx, New York, in her recent “Music and the Brain” lecture at the Library of Congress in Washington, D.C.

When she started working as a music therapist 32 years ago, “there was no neuroscience in music therapy,” she said. No one could explain why the people with severe dementia she worked with would respond to music and little else. But “lucky for us,” she said, the neuroscience community grew intrigued with the idea of using music as therapy and started investigating it, and “it’s only now that we’re able to say how this works.”

Tomaino is the latest in a string of lecturers at the Library this season who have described the power of music to improve,
maintain, and retrain brain function. She referred to the research presented by Gottfried Schlaug in December and Petr Janata in January while concentrating on how what we are learning has improved therapy in the real world for people with stroke, Parkinson’s disease, aphasia, and other motor and speech troubles. [She also wrote a piece for Cerebrum in 2002, “How Music Can Reach the Silenced Brain.”]

“Music is a whole-brain exercise,” she said. Because it is processed in many parts of the brain and uses many brain networks, music can offer
alternate gateways to an area that might have become cut off. For example, networks for rhythm and timing are, if not innate, laid down before a child is born. At four months’ gestation, a fetus can respond to “beat induction” (matching movement to a beat); as early as two days after birth, babies can distinguish the beat in a piece of music. This is a critical function, Tomaino said, because “sound gives instruction to the world around us.” Babies must quickly learn to respond to verbal commands, tone, speech patterns, and other aural cues. They also must learn to move in time, including the basic rhythm of walking.

That this capacity is so ingrained also means that if people lose their ability to move, as when their motor networks are damaged by Parkinson’s or after a stroke, their subcortical regions might be tapped to retrain or rewire the motor system. “Using auditory cues, we can reimbue them with this ability,” she said. Tomaino showed a video clip of a woman with Parkinson’s shuffling toward the camera; when the music starts, the woman’s posture straightens, her stride improves, her arms swing in time, and she executes a pivot-turn, all movements she hadn’t seemed able to do moments before. Part of the improvement may be due to where the command to move is processed, Tomaino suggested. By
“letting music take over,” the patient may be dimming her conscious processing of a now-difficult maneuver and letting the brain automatically fill in the proper form. [more examples in a video by of the Institute for Music and Neurologic Function]

In therapy, “we bypass, believe it or not, fear,” Tomaino said. “When they stop their thinking about it, making it less conscious, their fluidity of movement comes back. It looks amazing, and it is. But this is so true with many people with Parkinson’s disease.”

It also can
help process language and speech. People with speech difficulties can improve their breath control by singing, and music’s rhythmic cues can help extend a person’s phrasing and access lost pockets of memory. Tomaino showed a video of a woman who could string together only three syllables at a time; after two months of twice-a-week training, she could speak 19 syllables at a time. “The motor timing, the contour and the timing of the singing, helped retrain the ability of speech,”Tomaino said. And the breath-control exercise helped her regain strength enough that doctors could remove her tracheal tube and she
could breathe on her own.

“I don’t think that everyone with aphasia is singing, but they should be," she said.

–Nicky Penttila

Campaigning for brain awareness in Sri Lanka

With the help of European Dana Alliance member Ann Kato and her husband,
researcher Gabor Kato, Sri Lanka was a late addition to the roster of new
countries hosting Brain Awareness Week activities in 2009. The Katos, along
with Ranil De Silva of the University of Sri Jayewardenepura, Nugegoda,
organized a four-hour program in basic neuroscience at the Sri Lanka Medical
Association in Colombo on Nov. 8 and a six-hour program on Nov. 10 at the Sri
Sumangala Girls’ College in Weligama. The events were such a success that De
Silva and the Katos are planning a second BAW event in Sri Lanka this year. (Brain Awareness Week 2010 is March

Gabor Kato at girls' college Gabor Kato at the Sri
Sumangala Girls’ College in Weligama

The Sri Lanka
Medical Association event included lectures on how the brain works, what
happens during brain disease and how to maintain health with food and exercise.
Students, teachers, parents, doctors and the general public listened with great
interest and asked many questions, especially about maintaining and improving
memory, Ann Kato said. Many people also wanted to discuss their sleep problems,
and it appeared that everyone had a family member or a friend with a brain
disorder such as multiple sclerosis, schizophrenia, Parkinson’s or Alzheimer’s,
she added.

At the girls’
college, more than 400 high-school students, teachers, health-care workers and
members of the public spent nearly five hours learning about both the healthy
and diseased brains. De Silva translated the English lectures into Sinhalese,
as this audience did not have the same command of English as did the Colombo
group. In addition to lectures, the program included lighting of a traditional
oil lamp and two dance sessions by students, according to Ann Kato.

Girls' college processionProcession going to the auditorium at the Sri
Sumangala Girls’ College

There was room for
improvement. While the girls enjoyed the presentations, they asked for more
“cartoon-like” clips of how the brain functions. Two boys in the audience
wanted reassurance that the brain stays alive following death; perhaps they thought
the brain was immortal due to belief in reincarnation, Ann Kato said.

The Katos have
been supporting education efforts in Sri Lanka ever since they toured the
country after the devastation of the 2004 tsunami. They have repeatedly visited
the public girls’ college,
which serves 2,700 children from grades 3 to 12, to offer teaching assistance
and supplies. The school was severely damaged during the tsunami; thirteen students
died and more than half the children lost close members of their families.

While non-governmental
organizations helped rebuild most of the school’s buildings, it still lacks basic
items such as textbooks, pencils and notepads, as well as computers for the
technology lab. The Katos have collected and sent such supplies and offer university
scholarships for top students. At first, they paid out of pocket to fill urgent
needs; since then, they have received donations from friends and other
nonprofit groups and continue to look for sponsors for scholarships and other

Nicky Penttila

Photos courtesy Ann and Gabor Kato

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