Advocacy meets science and medicine: personal enrichment and a coping mechanism for Huntington’s disease


 In my effort to delay the inevitable onset of Huntington’s disease, I have strived to protect and nurture my brain through physical exercise and the practice of “neurobics,” a simple way of cross-training the brain that goes beyond common methods such as crossword puzzles and memory games. I described this approach in detail in an October 2011 article.

 “Neurobics uses an approach based on how the brain works, not simply on how to work the brain,” wrote the late neuroscientist Lawrence C. Katz, Ph.D., and writer Manning Rubin in their book Keep Your Brain Alive: 83 Neurobic Exercises to Help Prevent Memory Loss and Increase Mental Fitness.

 Scientists have established that neurobics increases levels of BDNF (brain-derived neurotrophic factor), a key “fertilizer” for the brain. Mice genetically modified to mimic HD symptoms severely lack BDNF.

 As HD researcher Moses Chao, Ph.D., has observed, humans can increase their BDNF levels “through increased exercise or any other kind of novel activity (travel, learning a new language, etc.).”

 Thus, neurobic exercises seek to stimulate the less-used parts of the brain. For example, a person can brush his or her teeth with the opposite hand, thus stimulating the hemisphere of the brain opposite that’s normally used.

 “I have learned that I must focus not only on the quantity of exercise, but its quality,” I concluded. “I need to stop frantically overstimulating my brain and instead concentrate on exercise, Neurobics, and other activities that will increase my BDNF.”

 From Brazil to the history of science

 Without at first realizing it, I had developed a novel, personal way of stimulating my brain.

 Ever since delving into my Ph.D. research in the mid-1980s, I have focused my intellectual career on modern Brazilian history.

 After learning of my mother’s positive test for HD and my own at-risk status in late 1995, I began to get involved in a radically different second field – one encompassing science, technology, and medicine – as an advocate for treatments to save my family and others from the ravages of HD. I redoubled this effort after I tested positive for HD in 1999.

 In my free time, I read everything I could about HD science and research.

 From 2001-2007, I wrote, edited, and produced a tri-annual newsletter for the San Diego Chapter of the Huntington’s Disease Society of America – including detailed articles on breakthroughs and a regular research update surveying the HD science and related fields. I advocated for the adoption of HD stem cell research projects by California’s stem cell institute. Since 2005, in this blog I have reported in detail on research meetings and many of the major projects seeking therapies.

 Since my definitive exit from the “HD closet” last November, I have become involved in the national History of Science Society and linked to new initiatives at the University of San Diego in neuroscience and medical ethics.

 This endeavor has enriched me intellectually and personally. Although I cannot prove it scientifically, I believe it has helped delay onset. At 53, I am now at least several years beyond the age of my mother’s apparent initial symptoms.

 Connecting with the researchers

 As Katz and Rubin point out, neurobics can and should include maintaining a rewarding emotional life based on intimate connections to people.

 More than ever, I have focused on strengthening the bonds of love with my friends and family.

 I have also built emotionally powerful connections with the scientists, physicians, nurses, research assistants, and support personnel involved in the quest for treatments.


Source: At Risk for Huntington’s Disease

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