‘Still Alzheimer’s’ panel shows there’s still hope

Printed from: http://newbostonpost.com/2015/10/22/still-alzheimers-panel-shows-theres-still-hope/

“Still Alzheimer’s” attendees settled into the O’Keefe Auditorium of Massachusetts General Hospital on Oct. 7 eager to listen to six distinguished researchers share recent advances in combating the dreaded disease. Inside the state-of-the-art lecture hall most sat in upholstered stadium seating while some folks leaned casually against the back wall. It was a comfortable place to learn about some uncomfortable facts.

Shadows of Alzheimer’s Disease were vivid on the worn faces of middle aged men in blue button-downs, 40-year-olds wearing pastel cashmeres, grey hairs in barracuda jackets and 20-somethings in fleece pullovers. White lab coats clustered quietly in rows all over the auditorium. The dark disease sat shoulder to shoulder with every solemn soul — 5.3 million Americans suffer from this degenerative progressive condition. The panel estimated that the number will increase by 40 percent to nearly 14 million people within 10 years. Alzheimer’s Disease echoes beyond the patient into families, changing their living situations, employment options, and the community.

When Dr. Rudolf Tanzi isn’t playing keyboard with Aerosmith’s Joe Perry, appearing on PBS specials and writing books with Deepak Chopra, he and his colleagues develop game-changing hypothesis on dementia. Tanzi was recognized by Time magazine as one of the 100 most influential people of 2015 for pioneering discoveries in Alzheimer’s. As Director of the Genetics and Aging research unit at Mass General Hospital, Tanzi’s professional work is devoted to finding a means of control, if not a cure, for the condition he calls “a mind-blowing epidemic.”

Affable and unassuming in style, Dr. Tanzi, part rock star, part scientist, introduced more than 200 attendees to Dr. Lisa Genova, author of “Still Alice.” Her best-selling book and subsequent movie, starring Julianne Moore, winner of the Academy Award for best actress in this 2015 performance, combines an understanding of this disease from both professional and personal perspectives. “Still Alice” is fictional but accurately portrays how Alzheimer’s systematically robs people of their memories, their independence, and, ultimately, their future. She shows how they and their loved ones suffer as the incurable disease agonizingly advances.

Genova is a Harvard-trained neuroscientist, who understood on paper her grandmother’s diagnosis of Alzheimer’s Disease, but knew nothing of how the beloved woman was feeling as she intermittently, then finally, slipped away from the family she adored and who adored her.

So anguished by her lack of understanding of the personal components of the disease, Genova quit her job at MGH’s Memory Disorders Unit to learn what life “feels like” for the patient and care givers of Alzheimer’s. Genova began taking acting and writing classes to help express what she and her family felt in their hearts. Those life changing experiences helped her write “Still Alice.” In the movie, Moore portrays a 50-year-old professor of linguistics at Harvard who loses her ability to communicate with her students, her family and herself. She loses her profession, her relationships, and dignity. The book and film are moving, capturing how much this condition strips away from the concentric circles of the individual, the family and community. As Genova puts it, “this disease is a crazy unacceptable entrance into old age.”

Tanzi and Genova were joined by Dr. Teresa Gomez-Isla. The woman who speaks Spanish as a first language said there are no speech barriers when you say hello and goodbye with a huge hug. Gomez-Isla explained the diagnosis process after a family has been referred by their primary care physician to the Memory Disorder Clinic of MGH. Most of her patients forget she’s a doctor but remember her as the lady with hugs and kisses. She finds a warm smile and a loving touch sometimes reach even the patients that seem most lost.

Drs. Steven E. Arnold and Michael Irizarry joined the panel explaining advances in genetic testing and signature drug applications that target the disease in various stages. They see a future that holds promise with designer drugs based on the genetics of each patient’s unique cellular profile. Collaboration is leading to synergistic developments in slowing the progression of disease symptoms. Both doctors say a cure isn’t on the horizon yet, but they share a sense of optimism, research is making progress.

Dr. Brad Hyman, MD and PhD, is a man of palpable enthusiasm when he speaks of two of his passions; next year’s Boston Red Sox and Alzheimer’s research. He explained that there’s a sense of urgency imbedded into the MGH Memory Disorder’s research team. He says “we’re getting there” to the 5 million people who are suffering now with dementia-related disease as well as the 20 million people who have early, undiagnosed symptoms. Hyman also outlined ways to lead healthy lives as a means of fighting neuro-degenerative disorders later.

He recommended exercise, a Mediterranean diet, constant mental and social engagements, and plenty of uninterrupted sleep to possibly delay symptoms of Alzheimer’s. Tanzi, Hyman’s longtime pal and colleague, calls deep sleep “mental floss.” Both contended that deep sleep cleans out “brain gunk”, also known as beta amyloid proteins, which is believed to lead to degenerative diseases.

The researchers in the auditorium spoke of Alzheimer’s Disease from different perspectives. All agreed that early detection was no death sentence. With proper medication, the progression of the condition could effectively be slowed and symptoms reduced. They also pointed to the importance of providing educational, financial, and emotional support to caregivers. Collectively, the panelists emanated a sense of optimism. With continued research and open dialoguing they predict the disease to become manageable in the near future, similar to heart disease and many cancers.

Contact the MGH Memory Disorder Unit at 617-726-1728 and the 24/7 Alzheimer’s help line at 1-800-272-3900. All proceeds from the song “Remember Me,” available on I-Tunes, benefit Cure Alzheimer’s Fund for research. It was co-written by Chris Mann of the Voice and Dr. Rudi Tanzi.

Diane Kilgore is a Boston-area blogger.

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