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How My Son With Down Syndrome Is Doing His Part to Find the Cure for Alzheimer’s

My son Marcus Sikora is 26 years old. He enjoys performing, traveling, and is the author of the children’s book: Black Day: The Monster Rock Band. He lives nothing less than what can be considered a “full life,” and like any other 26-year old, has no intention of slowing down. Yet he is already taking crucial steps to prevent the effects of Alzheimer’s disease, and is contributing
valuable information to scientists in the hopes of finding the key to the cure.

Marcus has three of the 21st chromosome in all of his cells, the most common form of Down syndrome. Many people with DS have a variety of treatable and/or curable medical conditions,
like congenital heart disease or thyroid disease. People with Down syndrome also have an increased chance of developing Alzheimer’s disease.

Alzheimer’s remains a mystery in both cause and cure. It affects each of the 5.4 million Americans living with it in a unique way. Scientists and medical professionals cannot yet answer definitively: Is it hereditary? Can it be prevented or reversed? Is a cure possible? And if so, when?

The Alzheimer’s Association breaks down all of the complexity to this: “Alzheimer’s is a disease that attacks the brain.” And “It is the most common form of dementia.”

Almost every person with Down syndrome will have the physical manifestations of proteins, plaques, and tangles on the brain by the time he or she is 40 years old. Fifty percent of people with DS over the age of 40 will develop dementia and other symptoms of Alzheimer’s.

Let me restate to clarify the impact of this science: Almost every person with DS has the pathology of Alzheimer’s disease on their brain. Yet, only half of the Down syndrome population will actually develop the negative symptoms.

Scientists want to know, how is that possible? How can a person have the physical attributes but not the symptoms? In fact, there are scientists specializing in Alzheimer’s disease who believe that
Down syndrome may hold the complex tools to combat Alzheimer’s, maybe even the cure, for everyone. Wouldn’t that be amazing? The cure.

Because of this, Marcus supports Alzheimer’s research in a few ways. 1) He is part of a new, ambitious research study called The Human Trisome Project, which aims to “Benefit individuals with trisomy 21 and the world population as a whole.” 2) He supports the Linda Crnic Institute and other organizations that are working to find the keys (or force open the lock, if necessary) to combat the negative effects of Alzheimer’s, for both people with DS and the typical population.

It’s not all work, though. His support for the Linda Crnic Institute is in a super fun way. On November 12th, Marcus is going to model in a festive fashion show in Denver called, Be Beautiful, Be Yourself. He will share the stage with stars like Peyton Manning, Deondra Dixon, and another Omahan, Global Down Syndrome Ambassador Louis Rotella IV!

Occasionally, science and medicine bring the breakthroughs in time, in our lifetime. But not always. Who knows how soon this research will turn into pharmaceutical answers for the general public? With that in mind, Marcus is aware that his health is also up to him. He knows he has to make lifestyle choices that will affect his well-being for both now and the future. This includes
taking the advice of one of the most prominent academic neurologists, Dr. William Mobley, who encourages the intake of Omega-3 via fish oils, in addition to maintaining a healthy diet. Just like everyone else, these goals are not always easy, and Marcus rarely resists if a cheese pizza calls his name. In the everyday, he embraces new ways to bring more healthy food into his diet, with the mantra, “What’s good for the body is good for the brain.”

Exercise is also a critical component to Alzheimer’s prevention. For help with this, Marcus works out biweekly at Omaha’s The Bodysmith. The coaches there all take care to encourage his lifestyle goals, as they do for all of their members. Brad Dienstbier, M.A., NSCA-CPT, the owner of The Bodysmith, is not only aware of the impact of regular exercise on how a person looks today, but emphasizes the impact of healthy choices on how a person will feel tomorrow. Dienstbier created a workout plan for Marcus that incorporates his personality, pushes him more each week, allows for flexibility as goals change, and is in a safe and encouraging environment. Dienstbier addresses the importance of exercise in Alzheimer’s prevention with all of his members, but knows the risk is much greater for his friend Marcus.

No one controls the future. However, in all of these ways, my son Marcus Sikora, one man with Down syndrome, is taking steps to reduce his chance of developing the negative effects of Alzheimer’s, while also doing what he can to make sure someone you love may be safe, too.

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